Understanding Disabilities in American Indian and Alaska Native Communities: Toolkit Guide

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Publication date: August 1, 2003

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The views contained in this report do not necessarily represent those of the Administration as this and all NCD reports are not subject to the A-19 Executive Branch review process.


About the Cover

The four symbols on the cover of the Toolkit Guide were chosen to represent the spectrum of disabilities, whether visible or hidden, that may be experienced by individuals in the American Indian and Alaska Native community. The universal meaning of each symbol is described in the captions below along with the meaning of the symbol as it is used in this Toolkit specifically.

Access for People Who Are Blind or Have Low Vision (blind with cane)

Universally, this symbol identifies areas that are specifically designed to be accessible to or in some cases tailored to the unique abilities of individuals who are blind or have low vision. Within the Toolkit, this symbol is used to represent the community of individuals for whom sight is not a primary sensory tool.

Mobility Access Symbol (wheelchair)

The wheelchair symbol indicates access for individuals who have a mobility disability, including individuals who use wheelchairs. The symbol is most commonly used to indicate an accessible entrance, bathroom, or environment that is sensitive to individuals with specific mobility access needs. Within the Toolkit, this symbol is simply used to represent the community of individuals with mobility needs of this kind.

Communication Access for People Who Are Deaf or Hard of Hearing (signing hands)

This symbol typically indicates that sign language interpretation is provided for a lecture, tour, performance, conference, or other program. Within the Toolkit, the symbol is used to represent the community of individuals whose primary means of communication is sign language.

Hidden Disabilities (face beneath face)

This symbol was designed specifically for the Toolkit after the Technical Expert Panel determined that there were currently only universal symbols for disabilities that are seen, leaving out the experiences of individuals with epilepsy, developmental disabilities, alcoholism, mental illness, learning difficulties, diabetes, and others who are not represented by the universal disability symbols. The symbol was inspired by the art of many indigenous cultures that designed faces with multiple overlaid masks. This symbol represents the community of individuals who have disabilities that are not externally visible but significantly impact an individual's life.

Acknowledgments

The National Council on Disability's (NCD) Understanding Disabilities in American Indian and Alaska Native Communities: Toolkit Guide was developed through the passionate collaboration of many individuals. The foundation of this project was formed in a powerful sharing of experiences, knowledge, and hopes among consumers and advocates who live with disabilities. These individuals strived to create a new perspective about what it means to be an American Indian or an Alaska Native with a disability. This new consciousness will serve to transform Indian communities nationally and offer a new hope to so many individuals who for so long have felt invisible with no voice.

NCD expresses its gratitude to the team at Kauffman and Associates, Inc., for drafting this toolkit. Team members include Project Director Dr. Martina Whelshula, Victor Paternoster, Tim Spellman, Wendy Thompson, and Ara Walline.

Others who have greatly supported the development of this work and deserve special acknowledgment are Mike Blatchford, consultant; Kathy Langwell and Project HOPE; Desautel Hege Communications; Robert Shuckahosee, consultant; Frank Ryan, consultant; the Consortia of Administrators for Native American Rehabilitation (CANAR); the American Indian Disability Technical Assistance Center; the American Indian Rehabilitation Research Training Center; the National Congress of American Indians (NCAI); focus group participants at NCAI and CANAR conferences; and Judy Babbit from the City of San Antonio Disability Access Office.

A special acknowledgment goes to those who represent the heart and soul of this effort, our Technical Expert Panel members: Mark Azure, Julie Anna Clay, Julia Davis-Wheeler, LaDonna Fowler, Joanne Francis, Joseph Garcia, Cordia LaFontaine, Carol Locust, Danny Lucero, David Miles, Damara Paris, Andrea Siow, H. Sally Smith, Raho Williams, Alvin Windy Boy. Thanks also to Jessie Stewart, age 10, for sharing her story.

In attempts to understand the complex make-up of Indian country as it addresses the needs of tribal members and descendants with disabilities, tribal program directors shared willingly about the challenges and inspirations experienced in their work. NCD acknowledges these individuals and the tribes they represent: Jo White, Oglala Nation at Pine Ridge; Arlene Templer, Confederated Salish and Kootenai Tribes; Rita LaFrance, St. Regis Mohawk; Rhonda Talaswaima, Hopi Nation; Darlene Finley, Three Affiliated Tribes; Linda Pratt, Yakama Nation; Larry Alflen, Pueblo of the Zuni; Steven "Corky" West, Oneida Nation; Ella Yazzie-King and Paula Seanez, Navajo Nation; and Len Whitebear, Cook Inlet Tribal Council.

Technical Expert Panel

Several individuals representing consumers and advocates within the American Indian and Alaska Native disability community nationwide were recommended to serve as members of a national Technical Expert Panel. The Technical Expert Panel served as project consultants and advisors providing guidance to the staff on the direction of the project. The Panel was instrumental in providing critical feedback and direction on the multitude of issues addressed throughout the development of this toolkit. The Technical Expert Panel members are as follows:

Mark Azure
Tsimshian/Hunkpapa Lakota
Intertribal Deaf Council
Consumer

Julie Anna Clay
Omaha Tribe
Training and Dissemination Coordinator
American Indian Rehabilitation Research and Training Center (AIRRTC)
Consumer

Julia Davis-Wheeler
Nez Perce
Nez Perce Tribal Council
Chair, National Indian Health Board

LaDonna Fowler
Turtle Mountain Chippewa/Santee Sioux/Assiniboine
Chairperson, Subcommittee on Disability, National Congress of American Indians
Co-Founder, American Indian Rehabilitation Rights Organization of Warriors (AIRROW)

National Board Member, AIRRTC
Secretary, Multicultural Committee, National Council on Independent Living
Co-Secretary, Native American Alliance for Independent Living
Charter Member, Cultural Diversity Advisory Committee for National Council on Disability
Native American Disability Consultant/Consumer

Joanne Francis
Akwesasne Mohawk
International Disability Consultant
Founding Member, AIRROW
Consumer

Joseph Garcia
Prairie Band of Potawatomi
Board Member - American Indian
Disability Technical Assistance Center<> Student, Salish Kootenai College
Consumer

Cordia LaFontaine
Consumer

Carol Locust
Eastern Band Cherokee
Indian Health Services Health Consultant
Cultural Sensitivity Trainer & Consultant
Consumer

Danny Lucero
Navajo/Apache Nations
Vice President, Intertribal Deaf Council
Gallaudet University
Consumer

David Miles
Nez Perce Tribe
Director, Nez Perce Vocational Rehabilitation Services
Board Member for the Idaho State Independent Living Council
Board Member for the Idaho State Rehabilitation Council

Damara Paris
Cherokee
President, Intertribal Deaf Council
Consumer

Andrea Siow
Hopi Nation
Consumer

H. Sally Smith
Tribal Leader
Alaska Native Health Board
National Indian Health Board

Raho Williams
Navajo Nation
Independent Living Specialist
San Juan Center for Independence
Consumer

Alvin Windy Boy
Chippewa-Cree
Tribal Leader
Rocky Boy Reservation

Contents

Welcome to the Toolkit

How many Indians live on tribal lands?
Did you know at least 555,000 Indians live with disabilities?
What is a disability?
What disabilities do we find in Indian communities?
Barriers and Challenges
References

    Healthy Living

    Background
    Health Care

    •  
      • Indian Health Service
        Medicaid
        Medicaid Home- and Community-Based Services (HCBS)
        Medicare
        State Children's Health Insurance Program (SCHIP)
    • Sports & Recreation
      References

       

    Education

    Background
    Federal Special Education Law

    •  
      • Individualized Education Programs
        Tips for Parents at IEP Meetings
        IEP Checklist
        Problem Solving
      • Strategic Direction 1
        Strategic Direction 2
        Strategic Direction 3
        Strategic Direction 4
        Strategic Direction 5
        OSEP-Sponsored Resources
        IDEA Partnerships
    • Office of Special Education Programs
      Technical Assistance Alliance for Parent Centers
      Technical Assistance and Dissemination Network-Minorities
      References

       

    Independent Living

    Background
    Model Approaches

    •  
      • ASSIST! to Independence
        Native American Independent Living Services (NAILS)
        Native American Advocacy Project (NAAP)
      • Federal Funding for Independent Living Centers
        Statewide Independent Living Councils
        Local Independent Living Centers
        Independent Living Advocacy
    • Resources
      References

       

    Vocational Rehabilitation and Employment Resources

    Background
    VR Service and Employment Basics for the Consumer

    •  
      • Qualifying for Vocational Rehabilitation Services
        Ticket to Work
        Employment Protections9
        How to File Complaints
      • Mental Health
        Alcohol and Substance Abuse
        Spinal Cord Injury
        Traumatic Brain Injury
    • Consumer Disability Resources
      Tribal VR Program Resources
      References

       

    Assistive Technology

    •  
      • ASSIST! to Independence
        Native American Advocacy Project (NAAP)
        Resources
    • Background
      Model Approaches

      State Assistive Technology Financial Loan Programs and Other Loan
      Programs Serving Native Americans
      General Assistive Technology Resources Available to Native Americans
      Assistive Technology Advocacy
      References

       

    Housing and Facilities

    •  
      • Barriers to Service
        The Basics of Universal Design
        Assessing Service Needs
    • Background
      Model Approaches
      Making Plans a Reality
      Frequently Asked Questions
      References

       

    Transportation

    •  
      • Barriers to Service
        Assessing Service Needs
        Definitions
      • Pueblo of the Zuni
        Confederated Salish and Kootenai Tribes
        Other Programs
      • Frequently Asked Questions
    • Background
      Model Approaches
      Making Plans a Reality
      References

       

    Key Elements of Promising Programs

    •  
      • Leadership Characteristics
        Responsiveness to the Needs of the Consumer
        Innovation in Removing Barriers
        Effective Collaboration
        Advocacy Strength
        Support from Tribal Leadership
    • Background
      Leadership

      Conclusion

       

    Advocating Change

    •  
      • Self-Advocacy.What Is It?
      • Step 1: Targeting
        Step 2: Preparing
        Step 3: Influencing
        Step 4: Following Through
      • Purpose of Submitting a Resolution
        Resolution Format
    • Self-Advocacy
      Giving Voice to Your Life Choices
      Speaking Up About Services

      What Would You Do As a Self-Advocate?
      GuidelinNational Initiatives, Federal Agencies, and National Organizations 153es for Writing a Resolution

      Sample Resolutions
      References

       

    Federal Disability Laws and Tribes

    •  
      • The Americans with Disabilities Act (ADA) and Tribes
        The Rehabilitation Act and Tribes
        The Individuals with Disabilities Education Act (IDEA) and Tribes
    • Background
      Understanding Government-to-Government Relationships

      Advocacy
      References

       

     

    •  
      • New Freedom Initiative
      • Social Security
        National Council on Disability (NCD)
        Department of Justice
        Equal Employment Opportunity Commission (EEOC)
        Rehabilitation Services Administration (RSA)
        Department of the Interior

         

        Administration on Developmental Disabilities (ADD)
        Department of Labor
        Administration on Aging (AOA)
        Centers for Medicare and Medicaid Services (CMS)
        Department of Housing and Urban Development (HUD)
        Office of Special Education Rehabilitation Services (OSERS)
        Regional Rehabilitation Continuing Eduation Preograms (RRCEPs)
        Rural Utilities Service
        Small Business Administration (SBA)
        Temporary Assistance for Needy Families (TANF)
        Administration for Native Americans (ANA)

    • Background
      Initiatives

      Federal Disability Agencies
      National Disability Organizations
      References

    Disability Etiquette Handbook

    •  
      • Resources Regarding Interpreters
      • What Is a Service Animal?
        Service Animal Access
        Service Animal Etiquette
        Service Animal Resources
    • Dos and Don'ts
      Conversation Etiquette
      Glossary of Acceptable Terms
      Preparing for Sign Language Interpreters

      Service Animals
      References

       

    Welcome to the Toolkit

    A powerful voice in Indian country has emerged, strongly pronouncing that American Indian people with disabilities do not need to be "cured" or "fixed." In truth, equal access, fair accommodations, and an opportunity to make powerful contributions to our society are needed.

    By eliminating the barriers, American Indian and Alaska Native (AI/AN) people with disabilities can work together in partnership to make tribal communities more accessible, more caring, and more representative of the beautiful, unique contributions each individual brings to this world.

    Indian people with disabilities and tribal leaders who served together on a Technical Expert Panel for the National Council on Disability (NCD) designed this Toolkit. They hope that the information, encouragement, and resources found in this Toolkit will help you and your community create the awareness, support, encouragement, and empowerment to improve the lives of people with disabilities and their families.

    In this Toolkit, you will find information about disabilities, Indian tribes, and resources. You will also find suggestions for improving services, providing protections, and tapping resources in local tribal communities for people with disabilities. This guide will focus primarily on health care, independent living, education, and vocational rehabilitation. In addition, resources are provided in the areas of housing and transportation.

    Each section of the Toolkit will provide specific contact information by topic for organizations that may be of further assistance to you. Where possible, the narrative describing each organization's mission and role has been directly quoted from the organization's Web site, and the Web site address has been identified in order to provide the most accurate and useful information.

    AI/AN people with disabilities, especially those who live in Indian country, face unique circumstances and legal environments that require special outreach, consultation, protections, and services. There is a great desire among AI/AN people with disabilities to work in partnership with sovereign tribal governments to make tribal communities and work places accessible and welcoming to people with disabilities.

    How many Indians live on tribal lands?

    According to the 2000 U.S. Census, nearly 2.5 million Americans identify themselves exclusively as "American Indian or Alaska Native." There are 4.1 million people who identify themselves either as Indian only or Indian in combination with another race (Ogunwole, 2002). Of this total, approximately 944,433 Indian or Alaska Native people live on federal reservations or on off-reservation trust lands (Langwell and Sutton, 2002). Of the 50 states, 35 have federal reservations within or overlapping state borders.

    The Federal Government, through the Bureau of Indian Affairs (BIA), officially recognizes 560 tribes and Alaska Native villages (Ogunwole, 2002). They are known as "Federally Recognized Tribes."

    Did you know at least 550,000 Indians live with disabilities?

    Data from the 1997 Survey of Income and Program Participation found that 22 percent of the American Indian and Alaska Native population has one or more disabilities (McNeil, 2001). This is the highest rate of disability when compared with all other races in the United States. The rate of disability varies significantly by race:

    Race Percentage with Disabilities
    U.S. all races  20%
    White  20%
    Black  20%
    Hispanic  15%
    Asian  10%
    American Indian  22%

    If we consider only the 2.5 million who reported on the 2000 census that they identify themselves exclusively as "American Indian or Alaska Native," this means that at least 550,000 Indians and Alaska Natives have disabilities.

    What is a disability?

    The Americans with Disabilities Act (ADA) defines a disability as follows:

    The term "disability" means, with respect to an individual - (A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment (42 U.S.C. § 12101 et seq.).

      Other, similar definitions are found in the Rehabilitation Act and the Social Security Act. You may find that eligibility for certain benefits, such as Social Security Income (SSI) for people with disabilities, may require a more rigorous definition. For example, the Social Security Act defines disability as follows:

      ...the term 'disability' means (A) inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or has lasted or can be expected to last for a continuous period of not less than 12 months, or (B) blindness . (42 U.S.C. 416 § 216 [42 U.S.C. 416] (1)(1))

        While definitions vary, nearly all these definitions rely upon some measure of functional limitation to determine severity. This is done using activities of daily living (ADL) or instrumental activities of daily living (IADL).

        ADL include eating, walking, using the toilet, dressing, bathing, and getting in/out of bed.

        IADL include cooking, shopping, managing money, using a phone, doing light or heavy housework, and getting out of the home.

          Assessing the severity of a disability is done by totaling the number of ADL or IADL experienced by an individual (NRCNAA, 2002).

          What disabilities do we find in Indian communities?

          Every type of disability that is found in the general population can also be found in the AI/AN population. Several small studies have surveyed tribal communities to identify most frequent types of disabilities. These studies (Clay, 1992; Rural Institute on Disabilities, 1995; AIDLP, 2000) generally found that the following types of disabilities are most often reported in Indian community surveys:

          • Spinal cord injury (see Vocational Rehabilitation [VR] section for more information)
          • Diabetes complications
          • Blindness
          • Mobility disability
          • Traumatic brain injury (see VR section for more information)
          • Deafness or hardness of hearing
          • Orthopedic conditions
          • Arthralgia
          • Emotional or mental health conditions (see VR section for more information)
          • Learning disabilities
          • Alcoholism or drug dependence (see VR section for more information)

          Not all disabilities are easily seen or can be seen at all. Many individuals have hidden or unseen disabilities, such as emotional or mental health problems, learning disabilities, alcohol/drug dependence, or deafness. Some people are born with their disability, or develop the disability early in life. Other people acquire their disability later in life as a result of disease, age, or injury.

          If we live long enough, we will each experience life with a disability.

          Barriers and Challenges

          Attitude: Most nondisabled people do not understand people with disabilities. Too often we see the disability and not the person. This is also true in our AI/AN communities. You can help change this!

          Lack of Awareness: There is a lack of understanding about the number of Indians with disabilities, the types of disabilities in Indian communities, and the various opportunities our tribal government and service programs have to better protect and assist people with disabilities in Indian country.

          Legal Enforcement Unclear: Federal laws designed to protect people with disabilities are not always enforceable against tribal governments because of the sovereign immunity and sovereign status of tribal governments. This does not mean that all enterprises located on tribal lands are exempt from federal laws, only that tribal governments are unique. Many tribes have opted to adopt their own ordinances and codes to protect Indian people with disabilities within the tribal system.

          Rural Transportation: Most tribal lands are located in rural and remote areas of the United States and lack public transportation systems, which could provide people with disabilities with access to transportation and increased independence.

          Rural Infrastructure: Tribal communities may not have the infrastructure to support access and accommodation for people with disabilities, such as sidewalks and sidewalk ramps for wheelchair access. Tribal communities may lack access to high-speed Internet or the means to acquire assistive technology for people with disabilities.

          Public Access: Tribal and federal office buildings that serve the community are not always accessible for people with disabilities. Some tribes may lack the resources to retrofit their buildings to accommodate people with disabilities.

          Complex Federal Programs: There are a variety of federal and state programs that can be important resources for people with disabilities on tribal lands. These programs may have overlapping or conflicting responsibilities and must be navigated with dogged determination. Don't take "no" for an answer.

          State Relationships: Relationships between tribes and states can be strained because of overlapping or conflicting jurisdictions and other issues. States may offer many services and programs that can be helpful for people with disabilities and their families living in Indian country. It is important to remember that while tribes are sovereign governments, their members are also citizens of the state and of the United States and are entitled to access state programs.

          Education Systems: The majority of AI/AN children are educated through the public school systems in each state. The balance of Indian children are educated in tribally operated schools or federal schools run by BIA. As a result, a variety of entities may have some level of responsibility for children with disabilities in our schools (Pavel, 1995). The Individuals with Disabilities Education Act (IDEA) requires public schools and BIA to provide children with disabilities with a free appropriate education based upon an Individualized Education Program for each child. This is the law. Parents of Indian children with disabilities may not be aware of the services and support their children are entitled to receive and may not know how to advocate for their children effectively.

          Employment: Federally recognized Indian tribes are specifically exempt as employers under Title I of ADA, which prohibits discrimination against qualified individuals with disabilities in employment and requires that employers make reasonable accommodation for employees with disabilities (42 U.S.C. §§ 12101 et seq.). This exemption is a barrier for Indians with disabilities in Indian country, particularly in rural areas where tribal governments are the largest employer. Some tribal governments have voluntarily complied with ADA or adopted their own codes to protect people with disabilities from employment discrimination.

          Housing: Homes are not generally designed to meet the needs of people with disabilities. There is limited funding at the tribal level to cover the cost of retrofitting tribal or private housing. This housing barrier can mean the difference between an individual with disabilities living independently or living under the care of others. Every home should have some means for "visitability" for people with disabilities.

          Service Coordination and Advocacy: Indian people with disabilities do not always have a central location where services are coordinated within tribal settings. This can present a major barrier, particularly for individuals with disabilities who have multiple needs, such as housing, health care, vocational rehabilitation, and advocacy.

          Personal Care Assistance: Just getting out of bed, bathed, dressed, and out of the house could present major barriers for some people with disabilities. Yet, with the support of a personal care attendant, many people with disabilities have been able to demonstrate their value as members of the tribal workforce. Much more can be done in Indian communities to provide home- and community-based services.

          References

          American Indian Disability Legislation Project (AIDLP) Research and Training Center on Rural Rehabilitation Rural Institute on Disabilities. (2000). Missoula: University of Montana Rural Institute.

          Clay, Julie. (1992). A profile of independent living services for American Indians with disabilities living on reservations. Missoula: University of Montana Rural Institute.

          Langwell, Kathy, and Janet Sutton. (2002). People with disabilities on tribal lands: Education, health, rehabilitation, and independent living literature review. Washington, DC: National Council on Disability.

          McNeil, J. (2001). Americans with Disabilities 1997. Current Population Reports: U.S. Census Bureau.

          National Center for the Dissemination of Disability Research (NCDDR). (1999). A review of the literature on topics related to increasing the utilization of rehabilitation research outcomes among diverse consumer groups. Retrieved November 4, 2002, from www.ncddr.org/du/products/dddreview/toc.html.

          National Resource Center on Native American Aging (NRCNAA). (2002). Functional Limitations and the Future Needs for Long Term Care. Grand Forks: University of North Dakota.

          Ogunwole, Stella U. (2002). The American Indian and Alaska Native population: 2000. Census 2000 Brief: U.S. Census Bureau, 1.

          Pavel, D. Michael. (1995). Comparing BIA and tribal schools with public schools: A look at the year 1990-91. Journal of American Indian Education 35(1).

          Rural Institute on Disabilities. (1995). American Indians and Disability. Rural Facts, 2.

          Healthy Living

          Background

          Healthy living expands the scope of health care by integrating a wellness approach, including sport and recreation activities. Wellness involves the mind, body, spirit, and context of the individual. Many Native American cultures emphasize harmony between mind, body, spirit, and one's relationship with one's community and the environment. In this way, today's health and wellness model may be highly compatible with the values of tribal members with disabilities.

          Today's wellness model focuses on the optimal functioning of individuals regardless of disability or health status. Wellness spans a continuum that is unique to each individual and his or her context-a context composed of environmental factors such as culture, community, family, social networks, social history, and physical environment. More specifically, health and wellness may be measured in the following ways: the ability to function and have the option to do what one wishes; being independent and having self-determination with regard to choices, opportunities, and activities; having physical and emotional states of well-being; and not being held back by pain. Individual factors relating to health and wellness are

          • Pain management
          • Rest
          • Exercise
          • Nutrition
          • Weight
          • Skin care
          • Medication
          • Bodily functioning
          • Sexuality
          • Aging
          • Attitude
          • Identity
          • Beliefs
          • Self-determination
          • Social contribution
          • Consumer knowledge
          • Personal growth and development
          • Health management
          • Social support
          • Employment
          • School
          • Accessibility accommodation
          • Personal assistant services
          • Housing
          • Transportation
          • Knowledge and sensitivity of others, including health care providers
          • Alternative/complementary medicine

          Thus, individuals define their own wellness, which is based on individual circumstances and viewed holistically (ILRU, 2002).

          The following section will describe the health or medical care support available for individuals with disabilities living in Indian country as well as provide an overview of the recreation and sport opportunities that also exist.

          Health Care

          People with disabilities depend upon health care systems to provide high-quality health services in accessible and appropriate settings. All Indian Health Service (IHS) and tribal health care facilities should be accessible for patients with mobility, sensory, or cognitive disabilities. Patients with hearing and visual disabilities should be able to access and communicate with their health care provider systems. Ramps, doorways, exam rooms, and restrooms must be accessible. Staff should be trained and prepared to effectively serve people with disabilities in the clinic.

          IHS and tribal health care providers should review their health care system to ensure that the challenges faced by many Indians with disabilities are addressed and considered.

          Resources to meet the health care needs of Indians with disabilities are available through several existing programs. These programs are described below. Many of these programs can be used in combination with each other to provide an array of services most beneficial for the patient.

          IHS and tribal health care programs can seek certification to bill for many services paid for by Medicaid, Medicare, or State Children's Health Insurance Program (SCHIP) and provide these services directly to patients in the clinics or through a home- and community-based services (HCBS) model. This is important for patients with disabilities who may require long-term care services.

          Indian Health Service

          AI/AN people have a unique relationship with the Federal Government. This relationship stems from Article I, Section 8 of the U.S. Constitution and is affirmed through numerous treaties, federal laws, Supreme Court decisions, and executive orders. A significant component of this relationship is the Federal Government's responsibility to provide health care services to Indian people.

          The Federal Government carries out this responsibility through IHS, an agency within the Department of Health and Human Services (HHS). IHS is the primary health provider and health advocate for AI/AN people, and its goal is to raise their health status to the highest possible level. Unfortunately, IHS funding is never adequate for the challenge, and services are often rationed at the local level.

          IHS is composed of 12 regional administrative offices known as Area Offices. Within each of these Area Offices, locally administered Service Units coordinate health services for tribal beneficiaries. Across the United States there are over 151 individual Service Units. Some Service Units are administered by the Federal Government, and some have been contracted by tribes, under the Indian Self-Determination Act (PL 83-638).

          There are no "guaranteed benefits" for IHS patients. Services vary from one IHS/tribal clinic, health station, or hospital to the next. You must check with your local IHS or tribal health program to know which services are available. Services could include

          • Outpatient medical services
          • Inpatient hospital or specialty services (direct or referral)
          • Dental services
          • Mental health services
          • Pharmacy and laboratory services
          • Home nursing visits
          • Community health representative visits
          • Transportation

          Eligibility for IHS Direct Services: To be eligible for "direct services" provided by the IHS directly or by a tribe, which administers services on behalf of the IHS, a person must be a member or a descendant of a federally recognized tribe. To be recognized as a descendant, an individual must show that he/she

          • Is regarded by the community in which he/she lives as an Indian or Alaska Native;
          • Is a member, enrolled or otherwise of an Indian or Alaska Native tribe or group under federal supervision;
          • Resides on tax-exempt land or owns restricted property;
          • Actively participates in tribal affairs; or
          • Has any other reasonable factor indicative of Indian descent. (IHS, 2002)

          In addition, IHS allows Indians of Canadian or Mexican origin who are recognized by any Indian tribe or group as a member of an Indian community served by the Indian program to also be eligible for IHS services. In certain cases, non-Indians can also be eligible for IHS services: for instance, a non-Indian woman who is pregnant with an eligible Indian's child or, in cases of public health hazard or acute infectious diseases, a non-Indian member of an eligible Indian's household.

          Eligibility for IHS Contract Health Services (CHS): In cases where IHS or a tribal facility cannot provide within its own facility certain inpatient or specialty medical services, IHS can refer a patient to an outside or private provider. In these cases, the private provider or hospital will bill IHS for services to the patient. Due to limited funding, eligibility requirements for CHS are stricter than for services provided at an IHS or tribal facility. IHS/CHS eligibility requires that the IHS eligible patient also reside within a defined Service Delivery Area, which usually includes the counties overlapping or bordering the tribal reservation. It is important to note that prior approval from the IHS or tribal clinic is required for each CHS eligible service visit. Close coordination with the IHS or tribal clinic is required to effectively utilize CHS services.

          How do I enroll? Your first visit should be with the IHS or tribal health clinic to register as a patient. You might be asked to name your tribe of enrollment or the tribe from which you descend on the registration form. In some cases, you might be asked to show your tribal identification card. For more information you can visit the IHS Web site at www.ihs.gov.

          Medicaid

          Medicaid is a federal program administered by the states. It was enacted in 1965 to pay for medical care for certain individuals with low income or lack of resources. For Indian and Alaska Native communities, it can help fill the gap in providing resources that might not be available through the IHS. It is also important to know that the IHS or tribal health clinic can bill Medicaid for services provided to Indian patients who are enrolled in Medicaid. This helps your local Indian clinic expand services.

          Am I eligible? States decide who is covered, how providers get paid, and what services are covered under Medicaid. Eligibility can vary from state to state. At a minimum, the Federal Government requires states to cover

          • Families with children who meet the Aid to Families with Dependent Children (AFDC) requirements in place on July 16, 1996 (former AFCD program)
          • Poverty-level pregnant women and children
          • People with disabilities who are enrolled in SSI

          If an Indian or Alaska Native is enrolled in Medicaid, that program is required to pay for services before the IHS pays. Courts have determined that IHS is the "payer of last resort." States cannot restrict Medicaid eligibility based on medical condition, type of services needed, or place of residence.

          Financial eligibility for Medicaid will be determined upon a review of income and resources. Most states use Supplemental Security Income (SSI) as the basis for determining financial eligibility, while some states develop their own formula to determine income and resources (Dixon, 2002).

          What services are covered under Medicaid? Unlike IHS, Medicaid programs have a "defined benefits package" that each enrollee is entitled to receive. You can get these services at your local IHS clinic or at another clinic or facility. These packages vary from state to state, and some states might require a nominal co-payment by the patient for certain services.

          Medicaid Mandated Services (states must cover):

          • Inpatient hospital services
          • Outpatient hospital services
          • Physician services
          • Nursing facility services for individuals age 21 and older
          • Home health services for anyone entitled to nursing facility care
          • Early and periodic screening, diagnosis, and treatment (for persons under age 21)
          • Nurse-midwife services
          • Family planning services
          • Pediatric or family nurse practitioner services
          • Other laboratory and X-ray services
          • Dental services that would be covered if performed by a physician
          • Intermediate care facility for mentally retarded
          • Doctor of osteopath services for children under age 21 and pregnant women

          Medicaid Optional Services (states can opt to cover):

          • Nursing facility services for persons under age 21
          • Home- and community-based services
          • Hospice services
          • Chiropractic services
          • Private-duty nursing services
          • Dental services
          • Physical therapy
          • Occupational therapy
          • Services for people with speech, hearing, and language disorders
          • Prescription drugs
          • Prosthetic devices
          • Eyeglasses
          • Diagnostic, screening, prevention, and rehabilitation services
          • Personal care services
          • Pediatric immunizations
          • Tuberculosis-related services
          • Transportation
          • Targeted case management services
          • Institution for mental disease for individuals age 65 and over
          • Inpatient psychiatric services for individuals under age 21

          Making Medicaid Work for People with Disabilities: It is important to check with your state or local Medicaid Agency to see which services are covered. The Federal Government requires that home health services be provided if authorized by a physician. Services could include nursing, home health aides, medical supplies, medical equipment, and appliances suitable for use in the home (Dixon, 2002). Further, states can opt to expand this list to include personal care services, physical therapy, occupational therapy, speech pathology, audiology, rehabilitation, private-duty nursing, and transportation.

          How do I enroll? Many IHS or tribal health clinics have business office staff or benefits coordinators who will help you fill out the necessary forms to apply for Medicaid enrollment. You can also go directly to your local, county, or state Medicaid office to apply.

          Medicaid Home- and Community-Based Services (HCBS)

          We used to think of long-term care as nursing home care. While nursing home care can be appropriate for some individuals, it is no longer the only option. In 1981, federal law was amended to allow state Medicaid programs to include HCBS waivers (Social Security Act, Sect. 1915(c)). Today, all 50 states have implemented some type of HCBS waiver as an alternative to institutionalizing the elderly and people with disabilities.

          The move to support de-institutionalizing people requiring long-term care received an important boost from the U.S. Supreme Court in 1999, when it ruled in Olmstead v L.C. (527 U.S. 581) that Title II of ADA requires states to provide community-based treatment for persons with mental disabilities when the providers determine that institutional care is inappropriate. The practical effect has been that states must now provide the "least restrictive care" for people with disabilities.

          What can tribes do? Tribal health programs should review their state HCBS plans to see how tribally administered home- and community-based services can be paid through Medicaid reimbursement. In addition to the medical services offered by state Medicaid programs, states can also opt, by waiver, to provide case management, homemaker, home health aide, personal care, adult day health services, habilitation, respite care, and other related services. HCBS waiver programs may also provide services designed to foster independence, train family caregivers, and enable the individual to stay at home.

          Who is most at risk for institutionalization? Unfortunately, the misuse of nursing homes, unnecessary physical restraints, and excessive referrals to large institutions has been a problem in communities across the United States for our elderly and people with severe disabilities (Shapiro, 1994). Those most at risk include the elderly, technology-dependent children, persons with traumatic brain injuries, persons with mental retardation or developmental disabilities, Alzheimer's patients, and others with severe disabilities (CMS, 2001).

          Special Provisions for Children: Medicaid's Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program serves as Medicaid's well-child program, providing regular screening, immunizations, and access to care. When a problem is identified, EPSDT is used to confirm the diagnosis and cover appropriate treatment. EPSDT pays for the services. A state's HCBS waiver program can be used to provide Medicaid eligibility to children whose parents' income and resources exceed the usual thresholds. Such a waiver allows states to provide care at home or in their communities to children who would otherwise be eligible for Medicaid only if they were institutionalized. States try to coordinate their HCBS and their EPSDT programs to look out for the best interests of the child and to make sure their special needs are met (CMS, 2001).

          Medicare

          Medicare is a federal program administered by the Federal Government though the Centers for Medicare and Medicaid Services (CMS). Medicare provides federal "health insurance" for hospital care (Part A) and medical care (Part B). In both programs, there can be some level of deductibles and co-insurance that must be paid by the patient. Medicare also provides preventive care benefits, including flu shots, mammogram screening, women's health screening, diabetes education, colorectal cancer screening, bone mass testing, and prostate test screening.

          Part A coverage includes

          • Hospital care
          • Skilled nursing facility care
          • Home health care
          • Hospice care

          Part B coverage includes

          • Physician services
          • Durable medical equipment
          • Kidney dialysis and kidney transplants
          • Outpatient hospital services
          • X-rays and laboratory tests
          • Limited ambulance benefits

          Medicare does not generally cover costs associated with long-term care. The number of days of continuous care is limited under Medicare. Long-term care is generally covered by Medicaid.

          Am I eligible for Medicare? Medicare provides coverage for certain types of health care services for the following groups of people:

          • People age 65 or older
          • Some people with disabilities (if receiving Social Security disability benefits for 24 months prior)
          • People with end-stage renal disease (permanent kidney failure requiring dialysis or transplant)

          If you are a person with disabilities and are under 65, and you have been entitled to Social Security disability benefits for at least two years, you will be automatically entitled to Medicare Part A beginning the 25th month of disability benefit entitlement.

          How do I enroll? The Social Security Administration handles Medicare eligibility and enrollment. You can contact the Social Security Administration at 1-800-772-1213 to enroll in Medicare or to ask questions about your eligibility. You can visit their Web site at www.ssa.gov or at www.medicare.gov.

          State Children's Health Insurance Program (SCHIP)

          SCHIP was established by the Federal Government and is administered by the states, much like the Medicaid program. It is intended to be more flexible than the Medicaid program, but this varies from state to state. Some states will use their SCHIP dollars simply to expand their Medicaid program. Other states have established a stand-alone SCHIP program that targets children who might not be eligible for Medicaid but who still lack health insurance because of low income. You need to check with your local, county, or state health offices and ask about SCHIP coverage to know what is available in your state. Remember, federal law prohibits states from charging co-payments for SCHIP coverage to Native American children enrolled in the program. States are allowed to charge co-payments for SCHIP coverage, but not to Indian children.

          Am I eligible for SCHIP? Your child or children might be eligible for SCHIP. Some states allow the entire family to be covered; most states cover only the children (www.cms.gov). The program is for children who do not currently have health insurance (IHS is not considered health insurance). Even if you are working, your child might still be eligible. Most states insure children up to 18 years old whose families earn up to $34,100 a year (for a family of four).

          How do I enroll? You should contact your local IHS or tribal clinic to see if they will help you enroll your child or children in SCHIP. Remember, Indian children have no co-payment requirements under this program. You can also contact your local county or state health offices to enroll in SCHIP. For more information, see the SCHIP Web site at www.cms.gov/schip/.

          Sports and Recreation

          Many options are available for people with disabilities with regard to recreation and sports. Community trips to movies and theater, spectator sports, sightseeing tours, museums, concerts, shopping, restaurants, and clubs help individuals with disabilities problem-solve, transfer therapy skills, and cope with real-life situations, especially as part of a rehabilitation program. Camps and camping are also important and popular forms of recreation for people with disabilities, and many organizations have camps designed for the special needs of people with disabilities. Sporting activities and organizations for people with disabilities include the following:

          • Aquatics
          • Archery
          • Aviation
          • Badminton
          • Baseball
          • Basketball
          • Billiards
          • Boccia
          • Bowhunting
          • Bowling
          • Cycling
          • Dance sport
          • Fencing
          • Fishing
          • Goalball
          • Golf
          • Gymnastics
          • Handball
          • Hockey (floor, ice, ice sledge, sledge, and sled)
          • Horseback riding
          • Hunting
          • Lawn bowling
          • Martial arts
          • Orienteering
          • Power

          As for sports programs, national, community, high school, and collegiate sports programs are primarily designed for people without disabilities. However, people with disabilities are frequently integrated into these "conventional" sports programs. There are advantages to integration as these programs usually have better coaching, better facilities, and more intensive training for their participants. In fact, ADA requires that community programs be accessible to people with disabilities, and IDEA requires that public school intramural and interscholastic sports programs be available to individuals with disabilities (Disability Sports, 2001b).

          In 2001, HHS made increasing the number of physically active individuals with disabilities a public health priority. Research indicates that the benefits for anyone engaged in regular exercise (3 or more days per week for 20 or more minutes) are as follows:

          • Physiological and psychological benefit
          • Increased health-related physical fitness such as cardiovascular endurance, muscle strength, muscle endurance, and flexibility
          • Weight control and the prevention of obesity and other health-related conditions
          • Psychological benefits such as decreased anxiety and depression with improvements in emotions, self-esteem, and self-confidence (ILRU, 2001)

          For people with disabilities, especially those with spinal cord injuries, vigorous physical exercise and sports (e.g., wheelchair sports such as basketball, bowling, track and field, swimming, archery, table tennis, softball, football, marathons, and rugby) are highly beneficial for

          • Stimulating circulation
          • Helping to prevent skin breakdown
          • Increasing fluid intake
          • Promoting self-worth and mental health
          • Improving the immune system and overall health
          • Reconnecting with the past and supporting a patient's construction of an identity following the injury
          • Enhancing physical performance and inducing positive physiological adaptations
          • Increasing community integration (PoinTIS, 2002)

          Unfortunately, people with disabilities wishing to participate in sports are faced with numerous barriers:

          • Sometimes people with disabilities find it difficult to believe in their abilities and to view themselves as athletes.
          • Acceptance by teammates, coaches, officials, and sports administrators usually must be earned through performance, sportsmanship, and work ethic. A positive example from a team coach can help in this area.
          • Access to quality coaching, programs, sports sciences services, and accessibility can be difficult. Many coaches and program directors still find difficulty in viewing athletes with a disability as deserving of attention and expertise.
          • Athletes with disabilities frequently experience greater financial burdens associated with sports participation than nondisabled athletes because of increased costs associated with specialized equipment, personal assistance, insurance, and travel. (Disability Sports, 2002)

          For tribal members with disabilities living on reservations, these barriers can seem insurmountable. However, organizations and resources are available to tribal members with disabilities who wish to participate in sports and recreational activities. In addition, tribal members with disabilities can also contact the nearest independent living center (ILC) for sports and recreation opportunities.

          References

          Center for Medicare and Medicaid Services (CMS). (2001). Fact Sheet: Home and Community Based Services. Washington, DC: CMS.

          Disability Sports. (2002). Barriers to participation. Retrieved October 21, 2002, from
          http://ed-Web3.educ.msu.edu/kin866/issbarrier.htm.

          Disability Sports. (2001b). Inclusion in "regular" sports programs. Retrieved October 21, 2002, from
          http://ed-Web3.educ.msu.edu/kin866/orgregular.htm.

          Dixon, Mim. (2002). Opportunities for Medicaid financing of long term care in American Indian and Alaska Native communities. American Indian and Alaska Native Roundtable on Long Term Care: Final Report. Indian Health Service, 26.

          Independent Living Research Utilization (ILRU) at TIRR. (2002). Definitions of health & wellness. Retrieved October 18, 2002, from www.ilru.org/healthwellness/healthinfo/wellness-definition.html.

          Independent Living Research Utilization (ILRU) at TIRR. (2001). Physical activity, motivation and people with disabilities. Retrieved October 18, 2002, from
          www.ilru.org/online/handouts/2001/Kosma/motivating.html.

          Indian Health Service (IHS). (2002) Eligibility requirements for health services from the Indian Health Service. Retrieved November 4, 2002, from
          www.ihs.gov/GeneralWeb/HelpCenter/CustomerServices/elig.asp.

          PoinTIS Spinal Cord Injury Recreational Therapy. (2002). Recreational activities: Community trips, sports, independent living. Retrieved October 18, 2002, from
          http://calder.med.miami.edu/providers/RECREATIONAL/rec2.html.

          Shapiro, Joseph P. (1994). No Pity. New York: Times Books.

          Education

          Background

          "There are approximately 500,000 American Indian and Alaska Native (AI/AN) students attending K-12 schools in the United States. Of the 500,000 AI/AN students, the majority (approximately 90 percent) attend public schools. The remaining 10 percent attend schools operated or funded by the Bureau of Indian Affairs (BIA) and Tribes" (Faircloth and Tippeconnic, 2000, p. 1). The Twenty-second Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act (U.S. ED, 2000) reports that "American Indian students represent 1.0 percent of the general population and 1.3 percent of special education students. American Indian students slightly exceeded the national average in nine disability categories, reaching the largest percentages in the categories of deaf-blindness (1.8 percent) and traumatic brain injury (TBI) (1.6 percent)." These statistics suggest that AI/AN students are slightly over-represented in the special education population (Faircloth and Tippeconic, 2000).

          For centuries now, educating Indian children has been a primary focus of government agencies and tribes. Boarding schools and other public education institutions have significantly affected the Indian community and how we look at education. The education of AI/AN children has reached crisis proportions as reflected in national and state data trends. So what happens to children with disabilities living in Indian country? What resources are available to children and parents?

          The following section is designed to assist you by outlining federal education laws, by providing practical tips for parents, and by providing resources for technical assistance and protection.

          Federal Special Education Law

          On January 8, 2002, the federal law No Child Left Behind was signed by the President of the United States. This law holds educators, elected officials, policymakers, and parents accountable in an attempt to close the academic achievement gap between high- and low-performing students. The No Child Left Behind law allows parents to become involved in the development of district policies and plans for their child's education. Parents and community leaders can participate in school improvement efforts. This new law affects every school district in the country (Public Education Network, 2003). This law is especially important for rural, isolated schools such as those serving AI/AN children living on or near Indian country. Too many children are being left behind, and AI/AN children have historically fallen way below the national average in academic achievement compared with non-Indian children.

          No Child Left Behind, in concert with IDEA, the federal special education law, can provide parents with new tools to ensure that their child's special education needs are being met. The Office of Special Education Programs (OSEP) administers IDEA, which guides the entire special education process. Special education programs follow rules and regulations set by federal and state governments. IDEA is implemented locally in all parts of the United States. As part of this law, OSEP of the U.S. Department of Education is responsible for meeting with each state and U.S. entity, including BIA, the Office of Indian Education Programs, and the Branch of Exceptional Education to ensure that the requirements of the law are being adequately met. Special education services in your area must meet these federal as well as local and state IDEA regulations (FAPE, 2002). The Act is authorized through 2002; the reauthorization process will be taken up in early 2003.

          Individualized Education Programs

          IDEA requires public school systems and BIA-funded schools to develop appropriate Individualized Education Programs (IEPs) for each child. The specific special education and related services outlined in each IEP reflect the individualized needs of each student. IDEA also mandates that particular procedures be followed in the development of the IEP. Each student's IEP must be developed by a team of knowledgeable persons and must be at least reviewed annually. The team includes the child's teacher; the parents (subject to certain limited exceptions); the child (if determined appropriate); an agency representative who is qualified to provide or supervise the provision of special education; and other individuals at the parents' or agency's discretion (DOJ, 2001).

          Tips for Parents at IEP Meetings

          The Arizona Center for Disability Law's Client Assistance Program (2002) offers both the tips and checklist that follow for parents who are working with their child's school to create an IEP that meets the unique needs of their child.

          In arranging IEP meetings, you should remember the following:

          • You or the school can ask that an IEP meeting be scheduled.
          • Meetings to plan or review your child's IEP should be held when you can attend.
          • If you cannot attend a meeting that has been scheduled, call the school immediately and ask that the meeting be rescheduled.
          • The notice of the meeting should state the purpose, date/time, location, and participants of the meeting.
          • Ask for an interpreter, if needed.

          Prior to the IEP meeting you may prepare by doing the following:

          • Set up an appointment to go to the school to review your child's school records.
          • Ask for a copy of a blank IEP form so that you know what will be discussed.
          • Get a copy of the school's proposed IEP, if one has been prepared.
          • Get information and help from other parents or advocacy groups.
          • Make a list of questions and comments to take to the meeting.

          At the meeting you can be an effective team member in the following ways:

          • By participating by a telephone call or a letter, if you cannot attend the meeting.
          • By reminding the school, if necessary, that you will not sign a prepared IEP but wish to be involved in writing the IEP.
          • By asking questions and sharing knowledge about your child with the team.
          • By remembering that you may tape-record the meeting.
          • By remembering that you may bring another parent, interested professional, or trained advocate with you.
          • By knowing your child's rights and discussing these rights with the team.

          At the close of the meeting

          • Be certain that you understand your child's IEP. If you don't understand the IEP, ask the school to explain the services.
          • Obtain a copy of the IEP.
          • Though you should try to cooperate with the school, do not sign the IEP if it does not meet your child's needs.
          • Request a due process hearing if you do not agree with the plan offered by the school (contact an advocate before requesting the hearing).
          • Remember that the IEPs should be reviewed at least once per year.

          IEP Checklist

          Your child's IEP should contain all of the following:

          • Information about the child's strengths and needs
          • Measurable annual goals
          • Short-term instructional objectives (short teaching steps that the team develops to allow each student to reach his/her annual goals)
          • Services to be provided (including any related services needed to benefit from the school program such as transportation, physical therapy, occupational therapy, speech therapy, counseling, psychological services, or interpreter)
          • Date each service will begin and end
          • How progress will be measured
          • Progress reports as often as children without disabilities receive them
          • An explanation of the extent, if any, to which the child will not participate with nondisabled children in the regular classroom
          • Transition services planning (beginning no later than age 14)
          • Transition services programming (beginning no later than age 16) (Arizona Center for Disability Law, 2001)

          Problem Solving

          IDEA has procedures in place to allow any member of the child's IEP team to bring a problem to the attention of team members. The student's parents are given rights and protections called procedural safeguards. These rights allow parents to question decisions made by the school regarding their children's education (DOJ, 2001).

          When disputes arise, IDEA favors solving the problem by both parties through a process called mediation (FAPE, 2002). The Consortium for Appropriate Dispute Resolution in Special Education (CADRE) is such an alternative that is funded by the U.S. Department of Education. CADRE encourages the use of mediation and other collaborative strategies to resolve disagreements about special education and early intervention programs. CADRE uses advanced technology as well as traditional means to provide technical assistance to state departments of education on implementation of the mediation requirements under IDEA '97. CADRE also helps parents, educators, and administrators benefit from the full continuum of dispute resolution options that can prevent and resolve conflict and ultimately lead to informed partnerships that focus on results for children and youth (CADRE, 2002).

          For a more detailed description of due process and complaint process guarantees provided for AI/AN children and families under IDEA, please refer to the Federal Disability Law and Tribes section of the Toolkit.

          Office of Special Education Programs

          OSEP has developed five strategic directions designed to improve education results for students with disabilities (OSEP, 2002). These directions are based on research and outreach that focused on what is currently working for students, parents, teachers, and schools. These directions are also closely tied to the IDEA legislation. OSEP was in fact the sponsor of the research that preceded the legislation. The following descriptions of the strategic directions and the brief information about the projects, publications, technical assistance centers, and clearinghouses are quoted directly from the U.S. Department of Education's Web site in order to provide you with the most complete information possible. More detailed information can also be obtained by contacting OSEP directly:

          Phone: (202) 205-9675

          Web site: www.ed.gov/offices/OSERS/OSEP

            Strategic Direction 1: Infants, Toddlers, and Their Families Receive the Supports They Need

            The first weeks and months of an infant's life can significantly affect all aspects of his/her entire life, including success in school. Data and anecdotal information indicate that families all across the country often are not informed early enough about the importance of early intervention. Too often children with significant disabilities may be 2 or 3 years old before they are referred for assessment and early intervention. Schools have a great stake in early identification and service provision for all eligible infants and toddlers and their families. Relevant state agencies must develop strong interagency partnerships to ensure a continuous, effective campaign to identify children in need of early intervention.

            It is also equally important that our youngest children and their families receive services and supports in natural environments. Services provided in the home, childcare, or other community-based settings are reporting positive responses from families and the early childhood community. Moreover, children who start off in settings with their peers who don't have disabilities are more likely to be included throughout their school years.

            IDEAs That Work for Infants and Toddlers

            Project: "Supporting Neurobehavioral Organizational Development in Infants With Disabilities: The Neurobehavioral Curriculum for Early Intervention"
            Phone: (206) 285-9317
            E-mail: mgallien@halcyon.com; anotari@wri-edu.org
            The goal of this project is to provide curriculum for parents and professionals so that they can support the neurobehavioral organization of infants born with very low birth weight or with severe disabilities.

            Project: Circle of Inclusion Web Site
            Web site: www.circleofinclusion.org/
            This Web site offers demonstrations and information about the effective practices of inclusive educational programs for children with disabilities (birth through age eight).

            Technical Assistance Center: National Early Childhood Technical Assistance System (NECTAS)
            Phone: (919) 962-2001
            TTY/TDD: (919) 962-8300
            Web site: www.nectas.unc.edu

            Technical Assistance Center: Technical Assistance Alliance for Parent Centers - The Alliance.
            Phone: (888) 248-0822
            TTY/TDD: (612) 827-7770.
            Web site: www.taalliance.org

            Strategic Direction 2: Preschool Programs That Prepare Children with Disabilities for Elementary School Success

            In 1986, half as many children attended preschool programs as today and only 24 states participated in the preschool program. Today all states have a preschool program for children with disabilities. It is not good enough just to offer the child a program. The program must be rigorous and prepare children for success in school. OSEP supported a study with the National Academy of Sciences on preventing reading failure in young children. This study showed that a rich preschool program can make a difference. It is also important that in those programs children have opportunities to have an integrated experience with their nondisabled peers. We must make sure that our preschool programs are preparing children to be successful in the primary grades.

            IDEAs That Work for Preschool Children

            Project: Reaching Individuals with Disabilities Early (RIDE Project)
            Web site: www.ovec.org/ride/Home/index.htm
            RIDE is a model demonstration project with the goals of

            1. Enhancing child-find efforts in targeted school districts by distributing multifaceted awareness packages and

            2. Helping school districts to develop local capacity in the delivery of assistive technology services, by providing an intensive training program.

              Project: Language Is the Key
              Web site: www.wri-edu.org/bookplay
              A video-training program designed to address the needs of professionals and paraprofessionals who work with young children with language disorders.

              Publication: Preventing Reading Difficulties in Young Children
              Web site: www.nap.edu

              Technical Assistance Center: National Early Childhood Technical Assistance System (NECTAS)
              Phone: (919) 962-2001
              TTY: (919) 962-8300
              Web site: www.nectas.unc.edu

              Strategic Direction 3: Effective Intervention for Young Students with Reading or Behavior Difficulties

              The importance and effectiveness of strategies that intervene early in a child's development are well recognized in improving results for children with disabilities. Unfortunately, approximately 60 percent of the children currently being served under IDEA are typically identified too late to receive full benefit from such interventions. This problem is most prominent with two specific populations of children: those identified for special education and related services under the categories "specific learning disabilities" and "emotional disturbance." These children are often not identified as being eligible for special education and related services until after their disabilities have reached significant proportions. These are children who very early in their education experience marked difficulties learning to read or exhibit behaviors that lead to discipline problems as they get older.

              A body of research on the topic tells us how to assess, identify, and help these children. For instance, research indicates that

              • Both populations of children can be assessed and identified early and with relative ease and accuracy;
              • Both populations of children, based on the nature of their disabilities, are at high risk for dropping out of school, becoming discipline problems, and for failing in school;
              • Both populations of children need valuable time that is essential to learning, time often lost because these children do not receive appropriate services earlier; and
              • Both populations can make tremendous gains when provided with effective services during early childhood.

              In practice, however, schools and teachers simply are not prepared to implement effective research-based practices to meet the needs of these children. We must join with our general education partners to ensure that all children experiencing early reading or behavior difficulties receive the services they need.

              IDEAs That Work for Children with Reading or Behavioral Difficulties

              Budget Request: The President has proposed, for the fiscal year 2000 budget, a $50 million dollar initiative called PRIME TIME: Reading and Behavior Initiative that will support demonstrations of school-based models of effective programs and practices to serve children who have marked difficulty learning to read and/or who exhibit behaviors that lead to discipline problems as they get older.

              Project: National Center on Accelerating Student Learning (CASL)
              Phone: (615) 343-4782
              E-mail: lynn.fuchs@vanderbilt.edu; doug.fuchs@vanderbilt.edu
              Promoting success in reading, writing, and math in grades K-3. CASL is a five-year research effort designed to accelerate learning for students with disabilities.

              Publication: "Early Warning, Timely Response; A Guide to Safe Schools"
              Phone: (877) 4ED-PUBS
              Web site: www.ed.gov/offices/OSERS/OSEP/earlywrn.html

              Technical Assistance Center: Center for Effective Collaboration and Practice (CECP)
              Phone: (202) 944-5454
              Web site: www.air-dc.org/cecp/default.htm

              Technical Assistance Center: Center on Positive Behavioral Interventions and Support
              Phone: (541) 346-3560
              E-mail: PBIS@oregon.uoregon.edu.

              Strategic Direction 4: Appropriate Access to the General Education Curriculum

              It is critically important that children with disabilities have access to the same curriculum that other children have if they are going to become successful adults. Simply put, children with disabilities should be learning what other children are learning in school and schools should be held accountable for results. Current research indicates that a large number of children with disabilities are not learning the same things in school as other children and therefore are not going to be in a position to graduate from high school or to be successful in life. The IDEA '97 amendments provide access to the general curriculum by requiring that states include students with disabilities in nationwide assessments. It is important that we manage our programs based on the results of these assessments.

              IDEAs That Work to Ensure Access to the General Education Curriculum

              Project: Performance Assessment and Standardized Testing for Students with Disabilities: Psychometric Issues, Accommodation Procedures, and Outcome Analysis
              Web site: www.wcer.wisc.edu/

              This project focuses on how fourth- and eighth-grade students with and without disabilities function on math and science assessments.

              Publication: "A Curriculum Every Student Can Use: Design Principles for Student Access"
              Web site: http://ericec.org/osep-sp.html
              Published by the OSEP-sponsored ERIC/OSEP Special Project; ERIC Clearinghouse on Disabilities and Gifted Education

              Technical Assistance Center: National Center on Educational Outcomes (NCEO)
              Phone: (612) 626-1530
              Web site: www.coled.umn.edu/nceo/

              Technical Assistance Center: The National Center to Improve the Tools of Educators (NCITE)
              Phone: (541) 686-5060
              Web site: http://darkwing.uoregon.edu/~ncite/index.html

              Technical Assistance Center: The Parents Engaged in Educational Reform Project (PEER)
              Phone: (617) 482-2915
              Web site: www.fcsn.org/peer/

              Technical Assistance Center: Consortium on Inclusive Schooling Practices (CISP)
              Phone: (412) 359-1600
              Web site: www.pgh.auhs.edu/CISP/

              Technical Assistance Center: National Institute for Urban School Improvement
              Phone: (303) 620-4074
              TTY/TDD: (703) 519-7008
              E-mail: Elizabeth_Kozleski@ceo.cudenver.edu

              Strategic Direction 5: All Students with Disabilities Complete High School

              Despite recent U.S. Department of Education reports of improvement data, for a number of years, national statistics have indicated that students with disabilities drop out of school at a higher rate than nondisabled students do, and if they stay in school, often complete their program without a standard diploma. This is still the case in Indian country. We need to be committed to graduating special education students with diplomas that represent the attainment of skills and knowledge necessary to succeed in adult life. We need to remember that higher education and lifelong learning are stepping stones for everyone. We also have to recognize that education and employment go hand in hand. We need to prepare our students to earn their way to success. OSEP-sponsored research has shown that monitoring students, building adult-student relationships, increasing the student's connection to school, and improving student problem-solving skills, along with ensuring access to general and vocational curricula, all play a part in increasing a student's chances of successful high school completion.

              IDEAs That Work to Help Students with Disabilities Complete High School

              Project: The National Transition Alliance (NTA)
              Web site: www.dssc.org/nta/
              NTA has identified over 25 promising programs from across the country addressing dropout prevention. A database of these programs is at the Web site above. Use the search term "dropout." The NTA's purpose is to promote the transition of youth with disabilities toward desired post-school experiences.

              Project: "Building Responsive High School Special Education Programs"
              Web site: www.ced.appstate.edu/projects/special_ed
              This project is working in two high schools to improve the outcomes for students with disabilities who are at risk of dropping out.

              Publication: "The ABC Dropout Prevention and Intervention Series"
              Institute on Community Integration
              Publications Office, University of Minnesota
              150 Pillsbury Drive SE
              Minneapolis, MN 55455
              Phone: (612) 624-4512
              A series of four booklets outlining effective dropout prevention and intervention strategies for middle school and beyond.

              Technical Assistance Center: The National Transition Alliance for Youth with Disabilities (NTA)
              Web site: www.dssc.org/nta/
              Clearinghouse: The National Information Center for Children and Youth with Disabilities
              Web site: www.nichcy.org

              Clearinghouse: HEATH Resource Center
              Phone: (800) 544-3284 (voice, TTY)
              Web site: www.acenet.edu/Programs/HEATH/home.html

              OSEP-Sponsored Resources

              IDEA authorizes formula grants to states and discretionary grants to institutions of higher education and other nonprofit organizations to support research, demonstrations, technical assistance and dissemination, technology and personnel development, and parent-training and information centers. These programs are intended to ensure that the rights of infants, toddlers, children, and youth with disabilities and their parents are protected.

              Office of Special Education and Rehabilitative Services
              U.S. Department of Education
              400 Maryland Avenue SW
              Washington, DC 20202
              Phone: (202) 205-5507
              TTY/TDD: (202) 205-5637
              Web site: www.ed.gov/offices/OSERS/OSEP/index.html

              IDEA Partnerships

              OSEP funds four national projects, called IDEA Partnerships, to deliver a common message about the landmark 1997 reauthorization of IDEA. The IDEA Partnerships, working together for five years, inform professionals, families, and the public about IDEA '97 and strategies to improve educational results for children and youth with disabilities (IDEA Practices, 2002). The IDEA Partnerships include the following:

              The Council for Exceptional Children

              The Associations of Service Providers Implementing IDEA Reforms in Education (ASPIIRE)
              1110 North Glebe Road, Suite 300
              Arlington, VA 22201-5704
              Phone: (877) CEC-IDEA
              TTY/TDD: (866) 915-5000
              Fax: (703) 264-1637
              Web site: www.ideapractices.org

              The ASPIIRE IDEA Partnership builds upon the strengths of 19 associations to assist practitioners in providing positive outcomes for students with disabilities. ASPIIRE utilizes collaboration to observe and learn from service providers in educational settings and translate needs into guidance, accurate resources, and training opportunities. Utilizing rapid-response systems with a vast information dissemination network, the ASPIIRE IDEA Partnership acts as a pivot point for distilling complex regulations into effective, research-based practices. The Partnership continually taps the strengths and expertise of its members.

              The Families and Advocates Partnership for Education (FAPE)
              Partnership at the PACER Center
              816 Normandale Boulevard
              Minneapolis, MN 55437-1044
              Phone: (888) 248-0822
              TTY/TDD: (952) 838-9000
              Fax: (952) 838-0199
              Web site: www.fape.org

              The FAPE Partnership at PACER Center aims to inform and educate families and advocates about IDEA '97 and promising practices. The FAPE Partnership links families, advocates, and self-advocates to communication of the new focus of IDEA '97. The FAPE Partnership has developed family-friendly curricula and materials addressing the requirements of IDEA '97, positive behavioral supports, new research, and other issues of concern to families. These resources are also available in multiple languages through the FAPE Web site.

              The Council for Exceptional Children
              ILIAD IDEA Partnership
              1110 North Glebe Road, Suite 300
              Arlington, VA 22201-5704
              Phone: (877) CEC-IDEA
              TTY/TDD: (866) 915-5000
              Fax: (703) 264-1637
              Web site: ww.ideapractices.org

              The ILIAD IDEA Partnership delivers support to the ongoing efforts of local education administrators and leaders. As the country continues to implement IDEA, the ILIAD Partnership brings together the preeminent educational leadership associations and builds upon their strengths and expertise. Together these groups interact to determine multiple vehicles for providing information, proven strategies, and technical assistance to school districts in urban, suburban, and rural areas.

              The Policymaker Partnership (PMP) at the National Association of State Directors of Special Education
              1800 Diagonal Road
              Suite 320
              Alexandria, VA 22314
              Phone: (877) IDEA-INFO
              Fax: (703) 519-3808
              Web site: www.ideapolicy.org

              PMP operates to increase the capacity of policymakers to act as informed change agents who are focused on improving educational outcomes for students with disabilities. The organizations that partner with PMP have profound influence in promoting excellence and equity for students with disabilities in the public education agenda.

              Technical Assistance Alliance for Parent Centers

              Parent Training Centers, funded by the U.S. Department of Education, are located all across the country. One example of these programs is the AI/AN Families Together Parent Training and Information Center, in Moscow, Idaho, which recruits and trains community members to provide support and assistance to families of AI/AN children with disabilities (NCD, 2002). Parent centers in each state provide training and information to parents of infants, toddlers, school-aged children, and young adults with disabilities and the professionals who work with their families. This assistance helps parents participate more effectively with professionals in meeting the educational needs of children and youth with disabilities. To reach the parent center in your state, you can contact the Technical Assistance Alliance for Parent Centers (the Alliance), which coordinates the delivery of technical assistance to the Parent Training Centers and the Community Parent Resource Centers through four regional centers located in California, New Hampshire, Texas, and Ohio.

              Technical Assistance and Dissemination Network-Minorities

              The Alliance Project for Tribal Colleges and Universities
              PO Box 340
              Wilmot, SD 57279
              Phone: (800) 984-9406
              Fax: (605) 938-4786
              E-mail: jim@dailypost.com
              Web site: www.alliance2k.org/introduction

              The Alliance Project is funded by OSEP. The Project seeks to address the increasing demand for qualified personnel from historically under-represented groups in special education and related services. A major emphasis of the Alliance Project is to increase the success rate of special education and related services departments in acquiring grants from the OSEP Division of Personnel Preparation (DPP). The purpose of these grants is to prepare personnel in special education and related services to meet the demand for qualified professionals and to build institutional capacity.

              Alliance engages in technical assistance and information services for the preparation of DPP grant proposals and for institutional development. Activities include grant writing workshops, mentoring, and best practice seminars. The Project works with faculty members in departments of general and special education, allied health and health sciences, school psychology, and counseling at historically Black colleges and universities, tribal colleges, and other institutions of higher education whose enrollment includes at least 25 percent of students from historically under-represented groups who are citizens of the United States. These groups include Hispanics, African Americans, Native Americans, and people with Asian ancestry.

              AI/AN teachers and paraeducators are needed in K-12 special education settings. The Alliance Project for Tribal Colleges works to help meet this need. During the initial Alliance 2000 Project, 14 tribal colleges and universities (48 percent) submitted DPP grant proposals with Alliance assistance. Seventy-one percent of these proposals were successfully funded.

              Linking Academic Scholars to Educational Resources (LASER)
              Department of Special Education
              University of South Florida
              4202 East Fowler Avenue, EDU 162
              Tampa, FL 33620
              Phone: (813) 974-1385
              Fax: (813) 974-5542
              E-mail: btownsen@tempest.coedu.usf.edu
              Web site: www.coedu.usf.edu/LASER

              LASER's mission is to enhance the capacity of faculty and graduate students in minority institutions to engage in research that affects children from minority and/or low-income backgrounds. Access the latest research, resources, news, and events in the field of special education. Learn about new research programs designed for scholars who are committed to the plight of impoverished youth. Provocative online discussions focus on urgent topics facing our nation's most challenged schools. Join the effort to narrow the gap between special education research and practice.

              National Information Center for Children and Youth with Disabilities (NICHCY)
              PO Box 1492
              Washington, DC 20013
              Phone: (800) 695-0285
              Fax: (202) 884-8441
              E-mail: nichcy@aed.org
              Web site: www.nichcy.org

              NICHCY's services are made possible through funding from OSEP and operated by the Academy for Educational Development. NICHCY shares information about disabilities and disability-related issues regarding children and youth via their Web site and publications. It will connect you with state and national resources, free of charge, in English or Spanish. Anyone can use its services-families, educators, administrators, journalists, students. Its special focus is on children and youth (birth to age 22). NICHCY compiles disability-related resources in each state and creates State Resource Sheets. These handy resource sheets will help you locate the following people, organizations, and agencies within your state that address disability-related issues:

              • Governors and U.S. Senators
              • State agencies serving children and youth with disabilities
              • State chapters of disability organizations and parent groups
              • Parent training and information projects

              References

              Arizona Center for Disability Law, Client Assistance Program (CAP). (2001). Educational rights of students with disabilities: A self-advocacy guide. Retrieved September 27, 2002, from www.acdl.com/pdfs/SE1.pdf.

              CADRE, The National Center on Dispute Resolution. (2002). Retrieved September 27, 2002, from
              www.directionservice.org/cadre/about.cfm.

              Faircloth, Susan, and John W. Tippeconnic III. (2000). Issues in the education of American Indian and Alaska Native students with disabilities. Retrieved September 27, 2002, from
              www.ael.org/eric/digests/ecord003.htm.

              Families and Advocates Partnerships for Education (FAPE). (2002). The Individuals with Disabilities Education Act (IDEA). Retrieved September 30, 2002, from www.fape.org/idea/index.htm.

              IDEA Practices On-line. (2002). Retrieved September 27, 2002, from
              www.ideapractices.org/about/aspiire.php.

              Langwell, Kathy, and Janet Sutton. (2002). People with disabilities on tribal lands: Education, health, rehabilitation, and independent living literature review. Washington, DC: National Council on Disability.

              National Association of State Directors of Special Education On-line. (2002). Implementing the No Child Left Behind Act: What it means for IDEA. Retrieved September 27, 2002, from www.nasdse.org.

              National Information Center for Children and Youth with Disabilities. (2002). Retrieved September 30, 2002, fromwww.nichcy.org.

              Office of Special Education Programs (OSEP), U.S. Department of Education. (1999). Executive summary: Report of Bureau of Indian Affairs special education program evaluation. Retrieved December 17, 2002, fromwww.dssc.org/frc/nmpp/MonitoringReports/BIASelf-Assessment.pdf.

              Office of Special Education Programs (OSEP). (2002). IDEAs that work: OSEP's five strategic directions. Retrieved September 27, 2002, from www.ed.gov/offices/OSERS/OSEP.

              Public Education Network. (2003). An action guide for community and parent leaders. Retrieved January 6, 2003, fromwww.publiceducation.org/pubs/pubpreorder/orderform.asp.

              Technical Assistance Alliance for Parent Centers. (2002). Parent training and information centers and community parent resource centers. Retrieved September 27, 2002, from www.taalliance.org/PTIs.htm.

              U.S. Department of Education (U.S. ED). (2000). Twenty-second annual report to Congress on the implementation of the Individuals with Disabilities Education Act (IDEA). Washington, DC: U.S. Government Printing Office. Retrieved December 30, 2002, from
              www.ed.gov/offices/OSERS/OSEP/Products/OSEP2000AnlRpt/PDF/Chapter-2.pdf.

              U.S. Department of Justice (DOJ), Civil Rights Division, Disability Rights Section. (2001). A guide to disability rights laws. Retrieved September 27, 2002, from www.usdoj.gov/crt/ada/cguide.htm.

              Independent Living

              Background

              In essence, independent living is a philosophy that people with disabilities have the same rights, choices, and options as anyone else. It is the belief that one should have opportunities to make decisions affecting one's own life and pursue activities of one's own choosing. This philosophy emphasizes self-determination with an individual having the freedom to learn from one's own experiences (ILRU, 2002).

              Such a philosophy marks a radical departure from the traditional rehabilitation perspective in which a disability is seen as a deficit and as a limitation. The independent living philosophy offers individuals the opportunity to choose a role other than victim, patient, or sufferer. In the independent living perspective, an individual's disability is not the emphasis. Rather, the independent living perspective emphasizes the individual's right to the types of help and assistance that the individual chooses. Although living on one's own and having a job suited to one's capabilities, for example, are critical aspects of independent living for many people, more important is the individual's decision to live or work according to his/her own desire that more accurately defines independent living (ILRU, 2002).

              A comparison of traditional rehabilitation and independent living service models in five categories (Limitations, Label/Role, Objectives, Organizational Structure and Response, Community and Self-Perceptions of Person with a Disability) shows this difference in philosophy. The rehabilitation model views limitations as physical impairments resulting in functional limitations related to walking, seeing, hearing, learning, etc. The independent living service model, on the other hand, views limitations as the community barriers, including stereotypes, stigma, prejudice, discrimination, low expectations, and structural barriers, that people with disabilities must navigate in order to have an active life of their choosing. In the area of labels and roles, it is not uncommon for the rehabilitation model to consider an individual with disabilities as a patient, victim, or sufferer. The independent living philosophy would describe the same individual as a "person with a disability," an "advocate," or a "consumer." The objective of the rehabilitation philosophy is to fix deficits and to overcome limitations. Independent living service models seek systems change to reduce structured inequality and disability awareness to minimize restrictive perceptions. In the area of organizational structure and response, the rehabilitation model vests control in professionals. The knowledge base is advanced degrees, professional counseling, or professional therapy. The independent living service model seeks to vest control in the person(s) with disabilities. The knowledge base is experiential, focusing on achieving independence. Peer support and counseling are recommended. Independent living skills training is provided. Finally, there are differences in the community and self-perceptions of a person with a disability. The rehabilitation model would identify a person who, as a result of a disability, is unable to participate in a variety of roles due to lack of function. The independent living model would see a person identified as having a disability as someone who, as a result of community perceptions and structural barriers, is restricted from participating in a variety of social roles, including roles that relate to education, employment, recreation, social, worship, and civic activities.

              By valuing diverse perspectives and approaches to living in and contributing to one's community, the independent living concept offers tribes the opportunity to develop services and programs for tribal members with disabilities that are tailored to their own unique cultures. This philosophy invites tribal members and communities to tap into and express their deeply held values and beliefs. For some this may mean taking a wellness approach; for others, seeking balance; for still others, deepening their understanding of traditional healing or of their own tribe's teachings. For tribes, designing a program to assist tribal members with disabilities can be part of a larger healing journey.

              Model Approaches

              In the United States, independent living organizations with an emphasis on Native Americans are a relatively new concept. However, three organizations have pioneered in this area, providing independent living services specifically to Native Americans. Each of the three programs that follow exemplifies unique approaches to providing independent living programs and services to Native Americans, as well as additional services designed to meet the needs of the Indian communities they serve:

              ASSIST! to Independence

              PO Box 4133
              Tuba City, AZ 86045
              Phone: (928) 283-6261; (888) 848-1449
              Voice/TTY: (928) 283-6672
              Fax: (928) 283-6284
              E-mail: assist@cybertrails.com
              Web site: www.assisttoindependence.org

              The mission of ASSIST! to Independence is to provide culturally relevant services to a cross-disability American Indian consumer population. Each of its programs emphasizes a common goal of enhancing quality of life and community life through maximizing independence and improving functional skills. These services are provided in an environment that promotes active consumer and family participation in self-determination and equal opportunities. ASSIST! to Independence is a community-based, American Indian-owned and -operated nonprofit agency that was established by and for people with disabilities and chronic health conditions to help fill some of the gaps in service delivery (ASSIST!, 2002a).

              ASSIST! provides services primarily to the Navajo, Hopi, and Southern Paiute Reservations; however, anyone needing information or assistance in the northern part of the state is welcome to request services. The agency serves as a consumer-driven community action program to facilitate general awareness of disability-related issues, community access, education, information sharing, assistive technology access, advocacy, and independent living that is culturally appropriate for American Indians. This is done through a comprehensive collaborative network, which provides support and resources that promote the active participation of each individual in his/her self-care management. Program staff provide the tools necessary for individuals to make informed choices and decisions; to maintain a maximum level of independent living; to achieve equality of opportunity, inclusion, and integration in the community and society; and to attain economic and social self-sufficiency (ASSIST!, 2002a).

              ASSIST! serves as the umbrella organization for five major programs: (1) The Regional Resource Center for Assistive Technology; (2) The Center for Independent Living; (3) The Special Needs Toy Lending Library; (4) The Functional Assessment Clinic; and (5) The Sensory Integration Program. ASSIST! provides the four core independent living services of (1) information and referral; (2) independent living skills training; (3) individual and systems advocacy; and (4) peer mentoring. In addition to these four core services, ASSIST! also provides traditional healing, home modifications and environmental interventions, durable medical equipment, and nonemergency transportation to medical appointments for individuals who qualify (ASSIST!, 2002a).

              ASSIST! attributes its success to the following:

              • ASSIST! services are dynamic and fluid in nature, so they are able to respond fairly quickly to current needs within the community.
              • ASSIST! believes in understanding and immersion in the culture they are serving, and respecting differing cultural needs.
              • ASSIST! uses aggressive outreach promoting "wellness" services, as opposed to services targeted primarily for people with disabilities.
              • ASSIST! uses extensive and comprehensive collaborations and networking within the community.
              • ASSIST! develops close working relationships with "nontraditional disability specialists," such as community health representatives, senior centers, and public health nurses.
              • ASSIST! has a visible presence within the community. They attend many senior functions and all health fairs promoted by Chapter Houses within communities across the reservation (ASSIST!, 2002b).

              Native American Independent Living Services (NAILS)
              3108 Main Street
              Buffalo, NY 14214
              Voice/TDD: (716) 836-0822
              Fax: (716) 835-3967
              E-mail: info@wnyilp.org
              Web site: www.wnyilp.org

              NAILS is a program of the Western New York Independent Living Project in Buffalo, New York. NAILS serves the Six Nations Confederation in the Western New York region. This federally recognized program has successfully assisted hundreds of American Indians with disabilities with independent living services. Services and programs are provided to American Indians with disabilities living on three reservations and in area cities and communities. NAILS provides its services to members of the Onondaga, Oneida, Cayuga, Mohawk, Seneca, and Tuscarora Tribes (Native American Independent Living Services, 2002a).

              All requests for services, communication, and information relating to services received are kept strictly confidential. NAILS provides advocacy, peer support, information and referral, independent living skills instruction, mental health support groups, family support services, service coordination/case management, and a family reimbursement program. NAILS is considered a walls-free program delivering its services through a mobile office service system. Services are delivered to consumers in their homes rather than the consumers going to an independent living center (ILC) (Native American Independent Living Services, 2002b).

              NAILS attributes its success to the following:

              • NAILS hires staff from each of the nations it serves to work in those nations, thus maintaining and developing trust between NAILS staff and the tribes and consumers whom they serve.
              • NAILS has worked to develop staff cultural competency, helping them to understand the unique cultures of the nations they serve as well as to understand the unique government-to-government relationships each tribe has with state governments and with the Federal Government, which vary. (Dougherty, 2002)

              Native American Advocacy Project (NAAP)
              PO Box 527
              208 South Main Street
              Winner, SD 57580
              Phone: (605) 842-3977; (800) 303-3975
              TTY: (605) 842-3977
              Fax: (605) 842-3983
              E-mail: admin@sdnaap.org
              Web site: www.sdnaap.org

              The mission of the Native American Advocacy Project is to empower members of the American Indian Oyate in South Dakota who have developmental, physical, mental, and/or neurobiological disabilities to actualize their potential by providing them with education, training, advocacy, support, independent living skills, and referrals to them and their Tiospaye (Native American Advocacy Project, 2002).

              NAAP is a statewide, nonprofit, consumer and family membership organization for persons residing on and off lands of the nine tribal nations in South Dakota. NAAP is chartered both with the State of South Dakota and the Rosebud Sioux Tribe (where NAAP's central office is located). NAAP is committed to providing support to the developing role of Native American consumers (persons with all types of disabilities) and their family members in system planning, decisionmaking, networking, advocacy, and service development for these populations. NAAP is also committed to being a cross-disability organization; they are inclusive of persons with all types of disabilities, not limiting efforts to only one or two disability groups but strengthening efforts on behalf of all persons with disabilities. This approach provides support to those disabilities that have been under- or unrepresented in the disability movement (Native American Advocacy Project, 2002a).

              NAAP operates the Tateya Topa Ho (Voice of the Four Winds) program, which is an intertribal ILC "without walls" that provides services to individuals with disabilities living on reservations and tribal land and in unserved areas throughout South Dakota. Services are provided on a local basis so that individuals are able to become independent in their own environment, rather than having to leave their homes, families, and communities. Independent living services and support systems are provided by Native individuals with disabilities or local/tribal service providers. The four core independent living services to consumers with disabilities are information and referral, advocacy, peer support, and independent living skills training. Independent living skills training includes such things as food preparation and shopping, homemaking skills, budget management, leisure activities/recreation, interpersonal skills, and communication skills (Native American Advocacy Project, 2002b).

              Resources

              Independent living technical assistance organizations provide valuable assistance to Native American tribes, Indians with disabilities, and program and service providers. The American Indian Disability Technical Assistance Center (AIDTAC), for example, helps tribes create holistic plans to fill gaps in their infrastructure; modify or create laws and policies that reduce independent living barriers; review, modify, or create laws and policies that facilitate employment opportunities for members with disabilities; coordinate disability issues on reservations; expand, improve, or create services by identifying potential links; and facilitate cooperative agreements with nontribal organizations. In addition, AIDTAC assists nontribal agencies in working with tribes in such a way that culture and sovereignty are respected; provides a national network of tribal programs, nontribal organizations, and consumers who advocate for issues related to Indians with disabilities at the tribal, state, regional, and national levels; and identifies, recruits, and mentors American Indians and Alaska Natives with disabilities who are in leadership positions. These organizations usually have organizational and funding ties to institutions of higher learning.

              Federal Funding for Independent Living Centers

              Independent living services and centers are funded through Title VII of the Rehabilitation Act. Title VII provides funds that states may use to provide independent living services, develop and maintain state ILCs, and improve working relations between independent living programs, ILCs, state independent living councils, vocational rehabilitation, supported employment, and other federal and nonfederal programs established or supported through the Rehabilitation Act. Funds to provide independent living services are available through a grant mechanism. Tribal governments may apply to receive a Title VII grant. Grants are administered through the Rehabilitation Services Administration (NCD, 2002).

              Statewide Independent Living Councils

              In the independent living process, statewide independent living councils (SILCs) are full partners with vocational rehabilitation through the 1992 amendments to the Rehabilitation Act. Their primary responsibility is collaboration with state vocational rehabilitation agencies in the development of a state independent living plan, determining how Rehabilitation Act (Part B) funds are used, monitoring the plan, reviewing the plan, and evaluating the implementation of the plan (Independent Living, 2002).

              State governors appoint members to each SILC after soliciting recommendations from organizations that represent a broad range of individuals with disabilities. Those appointed are knowledgeable and committed to disability rights and the independent living philosophy. Tribal representation is authorized under the Rehabilitation Act. In states where Section 121 (tribal vocational rehabilitation grant) projects have been awarded, one member of the council is required to be a director of one of those projects (29 U.S.C. § 796D(b)(2)(C)). The 1992 amendments to the Rehabilitation Act seek consumer control by requiring that the majority of an SILC's membership be individuals with disabilities not employed by ILCs or state agencies (Independent Living, 2002).

              Local Independent Living Centers

              The Rehabilitation Act of 1978 created a system of ILCs to serve individuals with severe disabilities. Independent living centers, or centers for independent living (CILs), are nonprofit organizations that are typically nonresidential, consumer-controlled, and community-based. They provide services and advocacy by and for people with disabilities. The goal of these organizations is to help people with disabilities to reach their maximum potential in their families and communities. In addition, these organizations serve as an advocate for national, state, and local independent living issues. The 1992 amendments to the Rehabilitation Act require that these organizations have a majority of individuals with disabilities on their staff and governing boards.

              ILCs/CILs seek to provide services to individuals with disabilities from cross-disability and multicultural populations. The core services that ILCs/CILs provide are

              • Systems and individual advocacy
              • Peer counseling
              • Information and referral
              • Independent living skills training

              These organizations may also provide assistance in finding and obtaining accessible housing, financial benefits counseling, equipment loan and/or repair, personal assistance services, employment readiness services, and services that relate to identifying, hiring, training, and firing a personal assistant (Research and Training Center on Independent Living, 2002).

              Native American consumers and providers would benefit by contacting the ILC/CIL nearest to their reservation. Although most ILCs/CILs do not have a specific Indian focus, they provide services to individuals with disabilities from cross-disability and multicultural populations.

              Independent Living Advocacy

              The idea of independent living has ties to the civil rights movements of the 1960s and 1970s. Activities included forming community-based groups of people with disabilities working together to identify barriers and gaps in the delivery of services. To address these service delivery barriers, action plans were developed that focused on educating the community and influencing policymakers at all levels in order to introduce legislation to remove these barriers and to change policies and regulations (Mountain State Center for Independent Living, 2002).

              The Independent Living Movement works for anti-discrimination legislation and equal opportunity for services, allowing people with disabilities the same degree of control over their lives as people without disabilities, and has people with disabilities take the initiative in the design of services, which maximizes individual consumer choice and control. In addition, the Independent Living Movement believes that people with disabilities must demonstrate, to themselves and to the public, that they are fully capable of taking the independent living cause in their own hands as the movement is based on the principles of self-determination, self-help, and consumer control (disAbility Resource Center, 2002).

              Advocacy provides a mechanism by which consumers and professionals can influence policy and program decisions affecting individuals with disabilities. Self-advocacy places value on individuals taking control of their lives and acting in their own best interest. Self-advocacy requires an individual to be linked to information, understand complex rules, repeatedly communicate one's needs to an impersonal bureaucracy in an effective manner, and be persistent. Systems advocacy, in particular, seeks to improve policy responsiveness, increase resource sharing, and facilitate program access (Clay, 2002).

              Systems advocacy may also present itself as an obstacle for individual Indians with disabilities because of the complex relationships between tribal governments, state governments, and the Federal Government that make targeted advocacy efforts difficult. However, systems advocacy has been critical to tribal governments in their goal to exercise self-determination and in the passage of the Self-Determination Act of 1976. Thus, through national organizations and an ILC structure on a reservation, systems advocacy can work to make tribal governments more responsive in addressing the needs and issues of tribal members with disabilities without putting these needs and issues above those of the community (Clay, 2002).

              References

              ASSIST! to Independence. (2002a). ASSIST to independence. Retrieved September 26, 2002, from
              www.assisttoindependence.org/ati/.

              ASSIST! to Independence. (2002). Round peg in a square hole: Independent living in Indian country. Retrieved September 26, 2002, from www.assisttoindependence.org/ati/peg.html.

              ASSIST! to Independence. (2002b). Competition regarding best CIL practices in rural outreach to emerging disability populations. Retrieved September 26, 2002, from
              www.assisttoindependence.org/ati/bestpractices.html.

              Clay, Julie Anna. (2002). Native American independent living. Retrieved October 7, 2002, from
              www.aidtac.org/NativeIL.htm.

              disAbility Resource Center. (2002). Independent living. Retrieved September 19, 2002, from
              www.wa_ilsc.org/independ.html.

              Dougherty, Ken. (September 24, 2002). Telephone interview by Victor Paternoster.

              Impact, Inc. (2002). IL & rehabilitation paradigm comparison. Retrieved September 19, 2002, from
              www.impactcil.org/phil_history/il_rehab.htm.

              Independent Living Research Utilization (ILRU). (2002). Directory of SILCs. Retrieved September 20, 2002, fromwww.ilru.org/jump1.htm.

              Langwell, Kathy, and Janet Sutton. (2002). People with disabilities on tribal lands: Education, health, rehabilitation, and independent living literature review. Washington, DC: National Council on Disability.

              Mountain State Center for Independent Living. (2002). History of the independent living movement. Retrieved September 19, 2002, from www.mtstcil.org/skills/il-2-intro.html.

              Native American Advocacy Project. (2002a). Homepage. Retrieved September 26, 2002, from
              www.sdnaap.org.

              Native American Advocacy Project. (2002b). Tateya Topa Ho. Retrieved September 26, 2002, from
              www.sdnaap.org/tateya.htm.

              Native American Independent Living Services (NAILS). (2002a). NAILS. Retrieved September 26, 2002, fromwww.wnyilp.org/NAILS/NAILS.html.

              Native American Independent Living Services (NAILS). (2002b). Services. Retrieved September 26, 2002, fromwww.wnyilp.org/NAILS/services.html.

              Research and Training Center on Independent Living. (2002). Independent Living Concept Fact Sheet.

              Virtual CIL. (2002). Directory of independent living centers. Retrieved October 8, 2002, from
              www.virtualcil.net/cils/.

              Vocational Rehabilitation and Employment Resources

              Background

              Vocational rehabilitation (VR) programs vary greatly from state to state and tribe to tribe. Tribal VR programs may differ significantly depending on a tribe's cultural and geographical environment. Vocational rehabilitation is more than job placement or counseling services. It is a comprehensive service uniquely tailored to the local culture and community needs. The George Washington University's Department of Counseling, Human, and Organizational Studies (2002, p. 1) suggests that rehabilitation counselors "...are concerned with assisting individuals who have disabilities with maximizing their potential and their independence." This assistance entails comprehensive counseling services, which include the individual, group, and family, in addition to multicultural counseling and addressing the attitudinal and environmental barriers for people with disabilities. Rehabilitation counseling may also encompass more complex services and counseling approaches such as medical and psychosocial aspects of disability and job development and placement, which are all regulated by strict ethical standards for rehabilitation counselors (Department of Counseling, Human and Organizational Studies, 2002).

              Unfortunately, not all tribes have a VR program. The U.S. Department of Education, through the Rehabilitation Act of 1973, funds tribal VR programs on a competitive basis. The average award of this Section 121 grant program is $350,000. Because grants are awarded on a competitive basis, tribes who may have had VR services in the past could lose their VR funding during the next funding cycle, and those tribes who have never had VR funding could be awarded a grant for the first time. This situation presents a number of problems for tribes who are attempting to provide a much-needed service to their tribal members and descendants with disabilities.

              In light of these unpredictable changes, this section of the Toolkit will (1) familiarize the consumer with VR services and employment resources and (2) provide ideas and resources to existing tribal VR programs and/or to those tribes who are planning to develop their own VR program.

              VR Service and Employment Basics for the Consumer

              The Rehabilitation Services Administration (RSA) was established by Congress to protect the employment and rehabilitation rights of people with disabilities. The RSA provides national leadership for, and administration of, basic state and formula grant programs, service projects, and rehabilitation training discretionary grant programs. These programs develop and implement comprehensive and coordinated programs of vocational rehabilitation, supported employment, and independent living for individuals with disabilities through services, training, and economic opportunities in order to maximize their employability, independence, and integration into the work place and the community (U.S. ED, 2002).

              Under Title I of the Rehabilitation Act of 1973, as amended, states receive federal grants (through the Department of Education) to operate a comprehensive VR program. These funds are awarded to designated state VR agencies within each state. This state-operated program is designed to assess, plan, develop, and provide VR services to eligible individuals with disabilities, consistent with their strengths, resources, priorities, concerns, abilities, capabilities, interests, and informed choice.

              RSA's major Title I formula grant program provides funds to state VR agencies to provide employment-related services for individuals with disabilities, giving priority to individuals who are significantly disabled (U.S. ED, 2002).

              Qualifying for Vocational Rehabilitation Services

              An "individual with a disability" means any individual who

              • has a physical or mental impairment that constitutes or results in a substantial impediment to employment for the individual and
              • can benefit from VR services to achieve an employment outcome.

              To be eligible for VR services, an individual must

              • be an "individual with a disability," as defined above and
              • require VR services to prepare for, secure, retain or regain employment.

              (Minnesota Workforce Center, 2002)

              RSA is unique in that it specifically addresses drug or alcohol addiction (Section 504 covers former users and those in recovery programs and not currently using drugs or alcohol), in addition to emotional and psychological problems, as a disability. This recognition is important when assessing and serving the needs of AI/AN communities.

              Ticket to Work

              On the employment front, a portion of President Bush's New Freedom Initiative announced on February 1, 2001, included swift implementation of the Ticket to Work Incentives Improvement Act of 1999. The goal of the program is "to give disability beneficiaries the opportunity to achieve steady, long-term employment by providing them greater choices and opportunities to go to work if they choose to do so" (Social Security Administration [SSA], 2002). The legislation also "removes barriers that previously influenced people's choices between healthcare coverage and work" (SSA, 2002). By 2003, all states and territories will have this program implemented.

              Ticket to Work

              Phone: (866) YOURTICKET; (866) 968-7842
              TDD: (866) TDD2WORK; (866) 833-2967
              Web site: www.yourtickettowork.com

              Employment Protections

              Titles I and II of ADA also specifically address employment issues for individuals with disabilities. However, Title I categorically excludes tribes as employers (42 U.S.C. § 12111(5)(B)(i)). This exclusion applies to the sovereign status of tribes. Other businesses on the reservation do not necessarily fall under this categorical exclusion. Title I requires employers with 15 or more employees to provide qualified individuals with disabilities with an equal opportunity to benefit from the full range of employment-related opportunities available to others. For example, it prohibits discrimination in recruitment, hiring, promotions, training, pay, social activities, and other privileges of employment. It restricts questions that can be asked about an applicant's disability before a job offer is made, and it requires that employers make reasonable accommodation for the known physical or mental disability of otherwise qualified individuals with disabilities, unless it results in undue hardship. Title II covers all activities of state and local governments regardless of the government entity's size or receipt of federal funding. Title II requires that state and local governments give people with disabilities an equal opportunity to benefit from all of their programs, services, and activities (e.g., public education, employment, transportation, recreation, health care, social services, courts, voting, and town meetings).

              State and local governments are also required to follow specific architectural standards in the new construction and alteration of their buildings. They also must relocate programs or otherwise provide access in inaccessible older buildings and communicate effectively with people who have hearing, vision, or speech disabilities. Public entities are not required to take actions that would result in undue financial and administrative burdens. They are required to make reasonable modifications to policies, practices, and procedures where necessary to avoid discrimination, unless they can demonstrate that doing so would fundamentally alter the nature of the service, program, or activity being provided.

              How to File Complaints

              The Rehabilitation Act prohibits discrimination based on disability in programs conducted by federal agencies, including programs receiving federal funds and in federal employment. In determining employment discrimination, the Rehabilitation Act uses the same standards as Title I of ADA.

              Section 121 of the Rehabilitation Act authorizes the RSA to make grants to tribes for the purpose of vocational rehabilitation services. Tribes accepting these grants, and generally other federal funds, agree to comply with federal law. However, this agreement may not amount to a waiver of sovereign immunity. Sovereign immunity would prevent private parties from seeking redress in federal or state court. However, sovereign immunity may not protect tribes from the Federal Government enforcing disability legislation. For nontribal businesses and services, federal law still applies.

              Charges of employment discrimination on the basis of disability may be filed at any U.S. Equal Employment Opportunity Commission (EEOC) field office. Field offices are located in 50 cities throughout the United States and are listed in most telephone directories under "U.S. Government." For the appropriate EEOC field office in your geographic area, contact

              Phone: (800) 669-4000
              TTY/TDD: (800) 669-6820
              Web site: www.eeoc.gov

              Publications and information on EEOC-enforced laws may be obtained by calling

              Phone: (800) 669-3362
              TTY/TDD: (800) 800-3302

              Information on how to accommodate a specific individual with a disability is available through the Job Accommodation Network.

              Complaints of Title II violations may be filed with DOJ within 180 days of the date of discrimination. In certain situations, cases may be referred to a mediation program sponsored by the Department. The Department may bring a lawsuit when it has investigated a matter and has been unable to resolve violations. For more information, contact

              Disability Rights Section; Civil Rights Division; U.S. Department of Justice
              PO Box 66738
              Washington, DC 20035-6738
              www.usdoj.gov/crt/ada/adahom1.htm
              Phone: (800) 514-0301
              TTY: (800) 514-0383

              The NCD, in collaboration with the National Urban League, has prepared "A Guide to Disability Rights Laws," which provides a summary of federal civil rights laws that ensure equal opportunity for people with disabilities. The guide is available on NCD's Web site at www.ncd.gov/newsroom/publications/disabilityrights.html/.

              Consumer Disability Resources

              "During the period of October 1994 to January 1995, about one in three American Indians and Alaskan Natives aged 15 and over reported having a disability, and one in seven reported having a 'severe' disability" (CBAIP, 2002). These statistics raise serious concerns, considering a tribe's ability to provide adequate resources and services for tribal members and descendants with disabilities. High unemployment rates on reservations, which range from 33.5 percent to 52 percent, make it challenging for American Indians with disabilities to find employment (CBAIP, 2002).

              According to a review of VR research related to American Indians, "...over half (54 percent) of the studies cited indicated that American Indians are an under served population due to cultural and socioeconomic barriers, which include geographic isolation, poverty, lack of transportation, language differences, and value differences" (CBAIP, 2002). Almost half the studies "cited the need to increase VR services to American Indians with disabling conditions" The unique cultural and geographical characteristics of many tribes present challenges when attempting to serve its members. "A survey of State VR administrators revealed that rehabilitation barriers experienced by reservation-based American Indians with disabilities include (a) cultural differences, (b) geographic isolation, and (c) lack of employment opportunities" (CBAIP, 2002).

              In 1994, the American Indian Disability Legislation Project conducted a survey of 143 AI and AN tribes to obtain information on the accessibility of public buildings, availability of rehabilitation services, and tribal awareness of disability laws. Surveyed tribes were also asked to report on the frequency of disabling conditions. Among the conditions most frequently cited among tribes in the continental United States were diabetes (29 percent), emotional disabilities (22 percent), and learning disabilities (11 percent). Among tribes in Alaska, emotional disabilities (31.3 percent), learning disabilities (17 percent), and deafness or hardness of hearing (17 percent) were the most frequently reported disabling conditions (American Indian Disability Legislation Project, 2000).

              American Indian Rehabilitation Research and Training Center (AIRRTC) analyses found that alcohol abuse or dependence was the most common cause of disability among AI/ANs represented in the 1997 RSA database. Approximately 11 percent of AI/AN clients had a major diagnosis of alcohol abuse compared with only 4 percent of White, nearly 6 percent of Black, and less than 2 percent of Asian clients. Although the prevalence did not vary substantially by race, learning disabilities were found to be the second most frequent major diagnosis (9 percent) among AI/AN clients represented in the RSA database (Schacht, Gahungu, White, LaPlante, and Menz, 2000).

              Mental health problems, along with alcohol and substance abuse, present some of the greatest challenges to Indian communities. The following subsections provide general directions in seeking services for some of the more prevalent forms of disabilities in Indian country. Unfortunately, it was not possible to list all of the services made available for those seeking assistance with mental health and alcohol and substance abuse treatment.

              Mental Health

              According to a report of the U.S. Department of Health and Human Services Substance Abuse and Mental Health Services Administration (SAMHSA), Native Americans are more likely to experience mental disorders than other racial and ethnic groups in the United States. "Of great concern is the high prevalence of depression, anxiety, substance abuse, violence, and suicide. Other common mental health problems of Native American individuals are psychosomatic symptoms and emotional problems resulting from disturbed interpersonal and family relationships"(SAMHSA, p. 11). According to SAMHSA, failure to address the "historic trauma" and culture of Native Americans in health care and other areas "will only add to the oppression experienced by Native Americans for decades"(ibid, pp. 11-12). Nonetheless, disentangling socioeconomic factors, cultural influences, civil rights issues, and the effect of race/ethnicity is difficult for any health condition, particularly mental health disorders.
                     -Vernellia Randall (2001)

              The devastating effects of historic trauma on Indian communities have left a large population of Indian people with what seems like overwhelming obstacles to face in an attempt to improve their quality of life. Depression and anxiety, along with psychosomatic illnesses, can create huge barriers to employment. The RSA specifically addresses this critical aspect of employability.

              Where Can I Get Help? Some tribes support their own mental health services. These services may reflect the unique cultural background of the local tribal community. Many tribal mental health programs are beginning to understand the need for and effectiveness of utilizing culturally appropriate approaches toward healing. If your tribe does not support a mental health program, it would be advisable to contact your local county mental health service. Depending on your need and financial status, mental health services can be provided for free or on a sliding-fee scale that will fit your financial status.

              Alcohol and Substance Abuse

              In 1999, there were about 43,000 American Indian and Alaska Native admissions to publicly funded substance abuse treatment facilities. A higher proportion of American Indian/Alaska Native treatment admissions were female (35 percent) than among the total treatment population (30 percent). Among American Indians/Alaska Natives, admissions for alcohol abuse declined by 11 percent between 1994 and 1999, while admissions for illicit drugs increased by 78 percent.

              -Office of Applied Studies,

              Substance Abuse and Mental Health Services Administration (2002)

              As a result of over 500 years of cultural oppression and a brutal colonization process, nations of Indian people have been affected emotionally and spiritually. Each successive generation is embroiled in the battle with alcohol and substance abuse; these substances are often used to deal with the intergenerational pain associated with oppression.

              Section 706 of the Rehabilitation Act recognizes the disabling effects of alcohol and substance abuse in our society and thereby makes provisions for employment assistance (www.eeoc.gov/laws/rehab.html).

              Where Can I Get Help? Many tribes offer alcohol and substance abuse program services to some degree. Some tribes may have extensive services while others may have none. The first step is to check with your tribe to see if they offer any alcohol and substance abuse services. If your tribe provides vocational rehabilitation, this program would most likely have the information you will need.

               

               

              Intervention may include inpatient treatment or outpatient treatment depending on the severity of abuse. Many treatment centers are beginning to utilize culturally appropriate approaches toward healing. If your tribe does not provide chemical dependency counseling or referral services, you may contact your local county agencies. There are many forms of payment, and each is unique to the person's circumstances. Indian Health Services may assist you in this respect. Most important, do not give up. The process can sometimes be quick while at other times frustrating.

              Spinal Cord Injury

              "Approximately 200,000 individuals in the United States have spinal cord injuries. Every year, approximately 10,000 people sustain new spinal cord injuries" (Paralyzed Veterans of America, 2002). Most of these people are injured in auto and sports accidents, falls, and industrial mishaps. An estimated 60 percent of these individuals are 30 years old or younger, and the majority of them are men. In Indian country it is much the same.

              By nature, a spinal cord injury (SCI) has a very sudden impact on an individual, physically as well as emotionally and socially. It is normal to have questions about how your life will be affected. Remember, though, that many other people have experienced SCIs and have continued to lead happy and productive lives. In order to do so, you must become an active participant in your recovery. The resources described in the following pages are just the tip of the iceberg. Many people and organizations are available to help (Paralyzed Veterans of America, 2002).

              For More Information Contact:

              National Rehabilitation Hospital
              102 Irving Street, NW
              Washington, DC 20010
              Phone: (202) 877-1000
              Web site: info@nrhrehab.org

              The National Rehabilitation Hospital specializes in treating persons with physical disabilities caused by spinal cord and head injuries, stroke, arthritis, amputation, multiple sclerosis, post-polio syndrome, and other neurological and orthopedic conditions.

              National Spinal Cord Injury Association

              6701 Democracy Boulevard
              Suite 300-9
              Bethesda, MD 20817
              Phone: (301) 588-6959
              Fax: (301) 588-9414
              Web site: www.spinalcord.org/index.html#toc

              The National Spinal Cord Injury Association is the nation's oldest and largest civilian organization dedicated to helping the hundreds of thousands of Americans coping with the results of spinal cord injury and disease.

              Paralyzed Veterans of America

              801 18th Street NW
              Washington, DC 20006-3517
              Phone: (800) 424-8200
              Web site: www.pva.org/index.htm

              The Paralyzed Veterans of America, a congressionally chartered veterans service organization founded in 1946, has developed a unique expertise on a wide variety of issues involving the special needs of our members-veterans of the armed forces who have experienced spinal cord injury or dysfunction.

              Shepherd Spinal Cord Injury Center

              2020 Peachtree Road NW
              Atlanta, GA 30309-1402
              Phone: (404) 352-2020 (Main)
              E-mail: Webmaster@shepherd.org

              Atlanta-based catastrophic care hospital treats people with spinal cord injuries, acquired brain injuries, multiple sclerosis, and other neuromuscular illnesses and urological problems.

              Spina Bifida Association of America (SBAA)

              4590 MacArthur Boulevard NW, Suite 250
              Washington, DC 20007-4226
              Phone: (800) 621-3141or (202) 944-3285
              Fax: (202) 944-3295
              E-mail: sbaa@sbaa.org

              SBAA addresses the specific needs of infants, children, and adults with spina bifida, their families, and professionals who serve them. As the national representative of over 70 chapters, it provides information and referral services, publishes materials, funds research, provides training, and conducts individual and systems advocacy.

              Spinal Cord Injury Information Network

              E-mail: sciWeb@uab.edu

              This service, based at the University of Alabama's Spinal Rehabilitation Center, provides information and resources for people with spinal cord injuries.

              Traumatic Brain Injury

              There are a variety of causes of traumatic brain injury (TBI) ranging from a sudden physical assault to shaken baby syndrome. It can affect individuals of all ages and the impact of the injury can range from mild concussion to coma or even death. Symptoms of a TBI are also varied. These may include headache, nausea, confusion or other cognitive problems, a change in personality, depression, irritability, and other emotional and behavioral problems. Some people may have seizures as a result of a TBI (NINDS, 2002).

              The resources and organizations that follow offer information and services to individuals and family members of individuals who have experienced a TBI. As in the previous case, more resources are available, but this is a starting point.

              For More Information Contact:

              Acoustic Neuroma Association
              600 Peachtree Parkway, Suite 108
              Cumming, GA 30041
              Phone: (770) 205-8211
              Fax: (770) 205-0239
              E-mail: anausa@aol.com
              Web site: www.anausa.org

              Brain Injury Association
              105 North Alfred Street
              Alexandria, VA 22314
              Phone: (703) 236-6000; (800) 444-6443
              Fax: (703) 236-6001
              E-mail: publicrelations@biausa.org
              Web site: www.biausa.org

              Brain Trauma Foundation
              523 East 72nd Street, 8th Floor
              New York, NY 10021
              Phone: (212) 772-0608
              Fax: (212) 772-0357
              E-mail: info@braintrauma.org
              Web site: www.braintrauma.org

              Family Caregiver Alliance
              690 Market Street, Suite 600
              San Francisco, CA 94104
              Phone: (415) 434-3388; (800) 445-8106
              Fax: (415) 434-3508
              E-mail: info@caregiver.org
              Web site: www.caregiver.org

              National Rehabilitation Information Center (NARIC)
              4200 Forbes Boulevard, Suite 202
              Lanham, MD 20706-4829
              Phone: (301) 562-2400; (800) 346-2742
              Fax: (301) 562-2401
              Web site: www.naric.com

              National Stroke Association
              9707 East Easter Lane
              Englewood, CO 80112-3747
              Phone: (303) 649-9299; (800) STROKES (787-6537)
              Fax: (303) 649-1328
              Web site: www.stroke.org

              National Institute on Disability and Rehabilitation Research (NIDRR)
              600 Independence Avenue SW
              Washington, DC 20013-1492
              Phone: (202) 205-8134
              Web site: www.ed.gov/offices/OSERS/NIDRR

              Tribal VR Program Resources

              The organizations that follow offer resources, training, and technical assistance for individuals, tribes, and organizations planning to develop, support, and sustain VR programs.

              Office of Special Education and Rehabilitative Services (Region X)

              Department of Education
              Rehabilitation Services Administration
              915 2nd Avenue, Room 2848
              Seattle, WA 98174
              Phone: (206) 220-7847
              Fax: (206) 220-7842
              Web site: www.ed.gov

              The Department of Education, Special Education, and Rehabilitation Services provides mentoring and oversight to programs funded in Region X as well as to tribal programs on a national basis. Regional responsibilities include VR agencies in the states of Oregon, Washington, Idaho, and Alaska. In addition, staff provides oversight, mentoring, and technical assistance to tribal VR programs across the country (there are only 69 VR programs yet more than 560 federally recognized tribes). American Indian rehabilitation programs function comparably to the state VR agencies except their services are provided to members of tribes who have disabilities and live on or near a reservation. The Region X Rehabilitation Services program has a rehabilitation services specialist with life experiences that provide intimate knowledge of tribal communities and tribal governments as well as federal and tribal barriers, which is particularly helpful for American Indian people in need of services.

              American Indian Rehabilitation Research and Training Center

              Institute for Human Development
              Northern Arizona University
              PO Box 5630
              Flagstaff, AZ 86011-5630
              Phone: (928) 523-4791
              Fax: (928) 523-9127
              TDD: (928) 523-1695
              Web site: www.nau.edu/ihd/airrtc

              The mission of AIRRTC is to improve the quality of life for American Indians and Alaska Natives with disabilities through the conduct of research and training that will result in culturally appropriate and responsive rehabilitation services; to improve employment outcomes and facilitate access to services for American Indians and Alaska Natives with disabilities; and to increase the participation of American Indians and Alaska Natives in the design and delivery of rehabilitation services for employment outcomes.

              Certain basic principles represent the philosophy of AIRRTC and the guidelines by which AIRRTC will operate over the next five years. These principles are the result of AIRRTC's long-term involvement with American Indian rehabilitation and are consistent with the policies of RSA and the National Institute on Disability and Rehabilitation Research (NIDRR) and legislation such as the Rehabilitation Act, as amended.

              Consortium of Administrators for Native American Rehabilitation

              AIRRTC/CANAR Training and Technical Assistance Activities
              Institute for Human Development
              Northern Arizona University
              PO Box 5630
              Flagstaff, AZ 86011-5630
              Phone: (928) 523-4791
              Fax: (928) 523-9127
              TDD: (928) 523-1695
              Web site: ww.nau.edu/ihd/airrtc

              After the passage of the Rehabilitation Act Amendment of 1992, considerable actions were taken to enhance cultural competence in rehabilitation service delivery, increase outreach and services to persons with disabilities from diverse populations, and develop recruitment strategies of persons from diverse backgrounds to work in areas of rehabilitation. As a result of discussion and subsequent legislation, on January 22, 1993, the Consortia of Administrators for Native American Rehabilitation (CANAR) was established; it functions as a national platform for advocating the needs for effective rehabilitation service delivery for American Indians and Alaska Natives with disabilities who reside on or near federal or state reservations, Alaska Native villages, rancheros, and pueblos. CANAR addresses the concerns, abilities, capabilities, and informed choice of AI/AN consumers, so that they may prepare for and engage in gainful employment, including self-employment, telecommuting, and business ownership. CANAR continues to form collaborative working relationships with AIRRTC, state rehabilitation agencies, Regional Rehabilitation Continuing Education Programs (RRCEPs), tribal health and social service programs, capacity building projects, and federal service agencies such as the U.S. Department of Education and U.S. Department of Labor (Northern Arizona University, 2002).

              Capacity Building for American Indians Project

              American Indian Rehabilitation Research and Training Center
              Capacity Building for American Indians Project
              Northern Arizona University
              PO Box 5630
              Flagstaff, AZ 86011-5630
              Phone: (928) 523-4801
              TTY: (928) 523-1695
              Fax: (928) 523-9127
              Web site: www.nau.edu/ihd/CBAIP/

              The AIRRTC Capacity Building for American Indians Project (CBAIP) is housed at the Institute for Human Development on the campus of Northern Arizona University. The mission of CBAIP is to enhance the capacity building and increase participation of American Indians and Alaska Natives in competition for discretionary rehabilitation grants, contracts, and cooperative agreements under Titles I through VIII of the Rehabilitation Act of 1973, as amended.

              Many American Indians and Alaska Natives who are eligible to compete for discretionary rehabilitation grants, contracts, and cooperative agreements funded under the Rehabilitation Act of 1973, as amended, are not aware of these funding opportunities, or have limited knowledge regarding grant proposal development and the VR system. By the very nature of CBAIP, funded under the Capacity Building for Traditionally Underserved Populations Program, the target population of the Project includes traditionally under-represented groups: American Indians, Alaska Natives, minority entity representatives, and American Indians and Alaska Natives with disabilities. CBAIP ensures equal access and treatment for eligible project participants who are members of groups that have traditionally been under-represented.

              National Rehabilitation Association
              633 South Washington Street
              Alexandria, VA 22314
              Phone: (703) 836-0850
              Fax: (703) 836-0848
              TDD: (703) 836-0849
              E-mail: info@nationalrehab.org

              Not long after Congress passed the National Rehabilitation Act of 1920, the National Rehabilitation Association (NRA) began its commitment to persons with disabilities. The NRA is the oldest and strongest advocate for the rights of persons with disabilities. Its mission is to provide advocacy, awareness, and career advancement for professionals in the fields of rehabilitation. Members of the NRA include rehab counselors; physical, speech, and occupational therapists; job trainers; consultants; independent living instructors; and other professionals involved in the advocacy of programs and services for people with disabilities.

              Seven core values provide the foundation for NRA services and programs:

              1. All people

              2. Professions in rehabilitation

              3. Visionary leadership

              4. Responsible resource management

              5. Advocacy

              6. Personal and professional enrichment

              7. Relationships built on trust and integrity

                In keeping with this commitment, the NRA has contributed and supported legislation such as the Rehabilitation Act of 1973 and subsequent reauthorizations, TJTC, the Job Training Partnership Act, and ADA. The association's prominence and longevity are recognized by our nation's leaders and give our members a vital role in shaping rehabilitation policy.

                National Association of Multicultural Rehabilitation Concerns

                633 South Washington Street
                Alexandria, VA 22314
                Phone: (703) 836-0850
                Fax: (703) 836-0848
                Web site: www.nationalrehab.org/

                The National Association of Multicultural Rehabilitation Concerns is a progressive association of individuals whose goal is to effect positive change and create opportunities for multicultural populations in the field of rehabilitation. Its philosophy is action-oriented and incorporates the following goals:

                • To provide professional seminars, workshops, and training that focus on cultural diversity in rehabilitation and enhanced service delivery to multicultural persons with disabilities.
                • To advocate, propose, and support legislation that addresses the needs of multicultural persons with disabilities and their communities.
                • To encourage and recruit people of color to enter the field of rehabilitation.
                • To provide current information on issues at the national, state, and local levels.
                • To educate the multicultural community on services available to persons with disabilities and their families.

                References

                American Indian Disability Legislation Project, Research and Training Center on Rural Rehabilitation. (January 2000). Montana University Rural Institute on Disabilities.

                Capacity Building for American Indians Project (CBAIP). (2002). Retrieved October 3, 2002, from
                www.nau.edu/ihd/CBAIP/needfor.html.

                Center for Psychiatric Rehabilitation, Boston University. (1997). Retrieved December 12, 2002, from
                www.bu.edu/cpr/reasaccom/whatis-psych.html.

                Clay, J. (1992). A profile of independent living services for American Indians with disabilities living on reservations. Missoula: University of Montana Rural Institute.

                Department of Counseling, Human and Organizational Studies, George Washington University. (2002). Introduction to the Field of Rehabilitation Counseling. (2002). Retrieved December 22, 2002, from
                www.gwu.edu/~chaos/rehab/Rc_def.htm.

                Minnesota Workforce Center. (2002). Vocational rehabilitation services. Retrieved December 30, 2002, fromwww.mnworkforcecenter.org/rehab/vr/definition.htm.

                National Institute of Neurological Disorders and Stroke (NINDS). (2002). Traumatic brain injury information page. Retrieved January 6, 2002, from www.ninds.nih.gov/index.htm.

                Northern Arizona University. (2002). Consortia of administrators for Native American rehabilitation. Retrieved October 3, 2002, from www.nau.edu/~ihd/CANAR/history.html.

                Office of Applied Studies, Substance Abuse and Mental Health Services Administration (SAMHSA). (February 1, 2002). Dasis Report: American Indian and Alaska Natives in Substance Abuse Treatment: 1999. Washington, DC: SAMHSA.

                Office for Students with Disabilities. (1997). Portland Community College. Retrieved October 3, 2002, from
                http://spot.pcc.edu/osd/504.htm#protected

                Paralyzed Veterans of America. (2002). Retrieved December 16, 2002, from
                www.pva.org/NEWPVASITE/publications/onlinepubs.htm.

                Randall, Vernellia R. (2001). Profile of Indian/Eskimo Communities, Chapter 2: Background: Disparity, Discrimination and Diversity in Health Care; Volume I, The Role of Governmental and Private Health Care Programs and Initiatives, The Health Care Challenge: Acknowledging Disparity, Confronting Discrimination, and Ensuring Equality, Vol. I. (September 1999). Washington, DC: U.S. Commission on Civil Rights. Retrieved December 27, 2002 fromhttp://academic.udayton.edu/health/08civilrights/01-02-13ProfileNative.htm.

                Schacht, R., A. Gahungu, M. White, M. LaPlante, and F. Menz. (September 2000). An Analysis of Disability and Employment Outcome Data for American Indians and Alaska Natives. American Indian Rehabilitation Research and Training Center.

                Social Security Administration. (2002). Fact Sheet: Effect of the Ticket to Work Program on the Use of Alternative Participants to Provide Vocational Rehabilitation Services to People with Disabilities. Retrieved December 2002 fromwww.ssa.gov/work/Service Providers/altpartprogfactsheet.html.

                U.S. Department of Education (U.S. ED) Rehabilitation Services Administration. (2002). About RSA. Retrieved October 3, 2002, from www.ed.gov/offices/OSERS/RSA/About/.

                U.S. Department of Justice, Civil Rights Division, Disability Rights Section. (August 2001). A guide to disability rights laws. Retrieved September 27, 2002, from www.usdoj.gov/crt/ada/cguide.htm.

                U.S. Department of Labor On-line. (2002). JAN's Web site portal for individuals. Retrieved October 3, 2002, fromwww.jan.wvu.edu

                Assistive Technology

                Background

                Assistive technology is simple or complex technology enabling individuals with disabilities to live more independently, productively, and enjoyably. Assistive technology increases one's ability to learn, work, compete, and interact with others (Washington Assistive Technology Alliance, 2002).

                Assistive technology products can improve and strengthen physical or mental functioning, help overcome a disability, assist in preventing the worsening of a condition, improve learning capacity, and act as a replacement for missing limbs. These products may include communication aids, computer access aids, daily living aids, education and learning aids, home and work environment aids, hearing and listening aids, mobility and transportation aids, seating and positioning aids, vision and reading aids, recreation and leisure aids, prosthetics, orthotics, and ergonomic equipment (Rehabtool.com, 2002).

                Assistive technology services help to support individuals with disabilities and their caregivers in selecting, acquiring, and/or using adaptive devices, which may include functional evaluations, device training, product demonstration, and the purchasing and leasing of equipment (Rehabtool.com, 2002). The Washington Assistive Technology Alliance provides the following definitions to help one understand the categories and types of assistive technology available for people with disabilities.

                Aids for Daily Living: Self-help aids for use in activities such as eating, bathing, cooking, dressing, toileting, home maintenance, etc.

                Augmentative or Alternative Communication (AAC): Electronic and nonelectronic devices that provide a means for expressive and receptive communication for persons with limited or no speech.

                Aids for Deaf or Hard of Hearing: Aids for specific populations including assistive listening devices (infrared, FM loop systems), hearing aids, TTYs, visual and tactile alerting systems, etc.

                Aids for Blind or Low Vision: Aids for specific populations including magnifiers, Braille or speech output devices, large print screens, closed circuit television for magnifying documents, etc.

                Computer Access: Input and output devices (voice, Braille), alternate access aids (headsticks, light pointers), modified or alternate keyboards, switches, special software, etc., that enable persons with disabilities to use a computer. This category includes speech recognition software.

                Environmental Control Systems: Primarily electronic systems that enable someone with limited mobility to control various appliances, electronic aids, security systems, etc., in their room, home, or other surroundings.

                Home/Worksite Modifications: Structural adaptations or fabrications in the home, worksite, or other area (ramps, lifts, bathroom changes) that remove or reduce physical barriers for an individual with a disability.

                Prosthetics and Orthotics: Replacement, substitution, or augmentation of missing or malfunctioning body parts with artificial limbs or other orthotic aids (splints, braces, etc.). There are also prosthetics to assist with cognitive limitations or deficits, including audiotapes or pagers (that function as prompts or reminders).

                Seating and Positioning: Accommodations to a wheelchair or other seating system to provide greater body stability, trunk/head support and an upright posture, and reduction of pressure on the skin surface (cushions, contour seats, lumbar).

                Service Animals: The Americans with Disabilities Act defines a service animal as any guide dog (for individuals who are blind or have low vision), signal dog (for individuals who are deaf or hard of hearing), or other animals individually trained to provide assistance to an individual with a disability.

                Wheelchairs/Mobility Aids: Manual and electric wheelchairs, mobile bases for custom chairs, walkers, three-wheel scooters, and other utility vehicles for increasing personal mobility.

                Vehicle Modifications: Adaptive driving aids, hand controls, wheelchair and other lifts, modified vans, or other motor vehicles used for personal transportation.

                Model Approaches

                In the United States, two Indian organizations are providing assistive technology devices and services specifically to Native Americans. Each of the programs that follow exemplifies unique approaches to providing the core independent living services (individual and systems advocacy, peer counseling, information and referral, and independent living skills training) as well as additional services designed to meet the needs of the Indian communities it serves.

                ASSIST! to Independence

                Regional Resource Center for Assistive Technology
                PO Box 4133
                Tuba City, AZ 86045
                Phone: (928) 283-6261; (888) 848-1449
                Voice/TTY: (928) 283-6672
                Fax: (928) 283-6284
                E-mail: assist@cybertrails.com
                Web site: www.assisttoindependence.org
                Mike Blatchford, Executive Director

                ASSIST! to Independence is a community-based nonprofit agency that was established by and for people with disabilities and chronic health conditions to help fill some of the gaps in service delivery. The agency serves as a consumer-driven community action program to facilitate general awareness of disability-related issues, community access, education, information sharing, assistive technology access, advocacy, and independent living that is relevant and culturally appropriate for American Indians. ASSIST! currently serves as the umbrella organization for five major programs: (1) The Center for Independent Living; (2) The Regional Resource Center for Assistive Technology; (3) The Special Needs Toy Lending Library; (4) The Functional Assessment Clinic; and (5) The Sensory Integration Program. The organization is located in the western part of the Navajo Reservation in Tuba City, Arizona, and its programs provide services primarily to the Navajo, Hopi, and Southern Paiute Reservations; however, anyone needing information and assistance in the northern part of the state is welcome to request services or information (ASSIST!, 2002a).

                ASSIST! operates the Technology Resource Center, providing access to both low-tech and high-tech devices for people of all ages and varying abilities. Opportunities for hands-on exploration allow individuals to make more informed choices about the technology interventions that will work best for them. The ability to borrow a device to "try out" in the appropriate setting also provides greater opportunity for proper device selection and success. Most devices found in the Technology Resource Center are available for short- or long-term loan (ASSIST!, 2002b).

                The Technology Resource Center also maintains an inventory of school-based assistive technology through a collaborative partnership with Southwest Human Development. This technology is available for professionals working within school districts who need access to assistive devices for evaluation purposes (ASSIST!, 2002b).

                The following services are provided through the Center for Assistive Technology:

                • Equipment demonstration
                • Short-term or long-term assistive technology equipment loans
                • Training and education
                • Information and referral
                • Advocacy
                • Technical assistance
                • Comprehensive evaluations and assessments

                In addition, the Resource Center participates as a member of the Navajo Nation Assistive Technology Consortium, which is actively working to develop the availability of more assistive technology resources on or near the Navajo Nation (ASSIST!, 2002b).

                Native American Advocacy Project (NAAP)
                Tiwahe Access (Family Access) Program
                PO Box 527
                208 South Main Street
                Winner, SD 57580
                Phone: (605) 842-3977; (800) 303-3975
                TTY: (605) 842-3977
                Fax: (605) 842-3983
                E-mail: admin@sdnaap.org
                Web site: www.sdnaap.org
                Marla Bull Bear, Executive Director

                The mission of the Native American Advocacy Project is to empower members of the American Indian Oyate in South Dakota who have developmental, physical, mental, and/or neurobiological disabilities to actualize their potential. NAAP provides education, training, advocacy, support, independent living skills, and referrals to them and to their Tiospaye. NAAP is a statewide, nonprofit, consumer and family membership organization for persons residing on and off lands of the nine tribal nations in South Dakota. NAAP is chartered with both the State of South Dakota and the Rosebud Sioux Tribe (where NAAP's central office is located). NAAP is committed to providing support to the developing role of Native American consumers (persons with all types of disabilities) and their family members in system planning, decisionmaking, networking, advocacy, and service development for these populations. NAAP is also committed to being a cross-disability organization; they are inclusive of persons with all types of disabilities, not limiting efforts to only one or two disability groups but strengthening efforts on behalf of all persons with disabilities. This approach allows support to those persons with disabilities that have been under- or unrepresented in the disability movement (Native American Advocacy Project, 2002a).

                NAAP operates the Tiwahe Access (Family Access) home modifications and adaptive devices program, providing ramps, bathroom modifications, kitchen modifications, and helpful tools to increase independence. This program provides home modifications and devices that are necessary for overcoming barriers that substantially limit a consumer's ability to function independently within a family or community and/or to obtain, maintain, or advance in employment. Some of the devices provided are reachers, doorbell indicators, eating utensils, personal hygiene and dressing aids, driving hand controls, environmental controls, and telecommunications adaptive devices. Home modifications include ramps, widened doorways, and bathroom and kitchen modifications (Native American Advocacy Project, 2002b).

                Resources

                On August 19, 1988, President Ronald Reagan signed into law the Technology-Related Assistance for Individuals with Disabilities Act (P.L. 100-407), also known as the Tech Act. In 1994, the Tech Act (P.L. 103-218) was reauthorized by President Clinton. In 1998, it was reauthorized by the Assistive Technology Act (P.L. 105-394). This Act provides funding in the development of statewide, consumer-responsive information and training programs for people with disabilities (RESNA, 2002b). Indians with disabilities and providers may benefit by contacting their State Assistive Technology Program.

                State Assistive Technology Financial Loan Programs and Other Loan Programs Serving Native Americans

                Funded under Title III, Alternative Financing Programs, of the Assistive Technology Act of 1998, the State Assistive Technology Financial Loan Programs are administered by NIDRR. These and other assistive technology loan programs may be of assistance to Indians with disabilities in obtaining financial loans to purchase needed assistive technology. (RESNA, 2002).

                General Assistive Technology Resources Available to Native Americans

                Researching and learning about assistive technology products and services can become an overwhelming experience. Fortunately, private and public assistive technology resources are available that provide valuable information and guidance in an organized fashion.

                Assistive Technology Advocacy

                Advocacy provides a mechanism through which consumers and professionals can influence policy and program decisions affecting individuals with disabilities. Self-advocacy places value on individuals taking control of their lives and acting in their own best interest (see Advocating Change section). Self-advocacy requires an individual to be linked to information, understand complex rules, repeatedly communicate one's needs to an impersonal bureaucracy in an effective manner, and be persistent. Systems advocacy, in particular, seeks to improve policy responsiveness, increase resource sharing, and facilitate program access (Clay, 2002).

                Systems advocacy may also present itself as an obstacle for individual Indians with disabilities due to the complex relationships between tribal governments, state governments, and the Federal Government, making targeted advocacy efforts difficult. However, systems advocacy has been critical to tribal governments in their goal to exercise self-determination and in the passage of the Self-Determination Act of 1976. Thus, through national organizations and an independent living center structure on a reservation, systems advocacy can work to make tribal governments more responsive in addressing the needs and issues of tribal members having disabilities without putting these needs and issues above those of the community (Clay, 2002).

                References

                ASSIST! to Independence. (2002a). National Council on Independent Living best practices for consumer involvement in assistive technology programs Assistive Technology Survey - 2002. Retrieved September 26, 2002, fromwww.assisttoindependence.org/ati/survey.html.

                ASSIST! to Independence. (2002b). The Regional Resource Center for Assistive Technology. Retrieved September 26, 2002, from www.assisttoindependence.org/ati/resource.html.

                Clay, Julie Anna. (2002). Native American independent living. Retrieved October 7, 2002, from
                www.aidtac.org/NativeIL.htm.

                DisabilityResources.org. (2002). Assistive technology--general. Retrieved September 25, 2002, from
                www.disabilityresources.org/AT-GENERAL.html.

                Native American Advocacy Project. (2002a). Homepage. Retrieved September 26, 2002, from
                www.sdnaap.org.

                Native American Advocacy Project. (2002b). Tiwahe Access. Retrieved September 26, 2002, from
                www.sdnaap.org/tiwahe.htm.

                Neighborhood Legal Services, Inc. (2002a). Description of the National Advocacy Project. Retrieved September 27, 2002, from www.nls.org/natdisc.htm.

                Neighborhood Legal Services, Inc. (2002b). Homepage. Retrieved September 27, 2002, from
                www.nls.org/index.html.

                Neighborhood Legal Services, Inc. (2002c). PAAT Directory. Retrieved September 27, 2002, from
                www.nls.org/paatstat.htm.

                Rehabilitation Engineering and Assistive Technology Society of North America (RESNA). (2002a). Alternative Financing Technical Assistance Project. Retrieved September 25, 2002, from
                www.resna.org/AFTAP/index.html.

                Rehabilitation Engineering and Assistive Technology Society of North America (RESNA). (2002b). Technical Assistance Project. Retrieved September 25, 2002, from www.resna.org/taproject/index.html.

                Rehabtool.com. (2002). What's assistive technology? Retrieved September 23, 2002, from
                www.rehabtool.com/at.html.

                Washington Assistive Technology Alliance. (2002). Assistive technology. Retrieved September 23, 2002, fromhttp://it.wce.wwu.edu/necc97/poster1/DoIt/WebWhacker/WW684.html.

                Housing and Facilities

                Background

                It is estimated that of the 26 percent of American Indians and Alaska Natives living with a significant disability, as many as 94,000 individuals have a mobility or self-care limitation (Shuckahosee, 2000). In order to remain independent, many tribal members with disabilities living on tribal lands require support to make their homes, work environment, and other tribal facilities accessible and their active participation in tribal life possible. Though VR programs, with the cooperation of tribal governments, often make a good-faith effort to modify work environments on an as-needed basis so that they are suitable to individual needs, many challenges remain.

                Barriers to Service

                Barriers to service include

                • Building/modification costs
                • Limited program funding
                • Administrative backlog for grants and protocol
                • Limited awareness of universal design feasibility

                The baseline housing conditions on tribal lands and limited funding for tribal housing programs may make meeting the needs of tribal members with disabilities seem insurmountable. According to a fact sheet prepared by the National American Indian Housing Council in 2000, between 21 and 69 percent of homes are overcrowded and have serious physical deficiencies compared with 5.9 percent nationally (AIDTAC, 2001). In addition, there is a "113-year staff backlog of title search requests at the Bureau of Indian Affairs that impedes lending and stalls desperately needed housing initiatives" (AIDTAC, 2001, p. 12).

                The Basics of Universal Design

                Universal design has also been called "life-span design," "inclusive design," and "trans-generational design." Its goal is to develop guidelines for housing construction that would create a livable, marketable environment for everyone regardless of ability, age, or size (City of San Antonio, 2002). Following are the five essential features of universal design that meet federal disability legislation requirements and the needs of individuals with a variety of physical disabilities (for further information on housing accommodations needed by individuals who are deaf, hard of hearing, or blind or have low vision, please see the Assistive Technology section of the Toolkit):

                1. Provide one no-step entrance with beveled threshold. This may be at the front, side, or back of the house or garage entrance.

                2. Make doorways throughout the home at least 32 inches wide; hallways at least 36 inches clear width.

                3. Reinforce walls around the toilet, bathtub, and shower stall so that grab bars may be added later, if needed.

                4. Install light switches and electrical controls no higher than 48 inches and electrical plugs no lower than 15 inches above the floor.

                5. Install lever handles on exterior and interior doors and on sinks. (City of San Antonio, 2002, p. 1).

                  Figuring these features into builders' costs of new construction, the City of San Antonio Planning Department arrives at a total of $371 to $670 per house. Comparatively, later modification for necessary access would result in a cost of between $3,350 and $5,402 per house (City of San Antonio, 2002). While actual construction costs will vary by locality, savings from the integration of universal design at the time of construction versus later modification can be expected.

                  Assessing Service Needs

                  The first step to building a strong framework for services for people with disabilities is to know which services are currently available and which are not. The eight questions that follow were developed by the American Indian Disability Technical Assistance Center (AIDTAC) in order to begin this local assessment process.

                  1. What does your tribe or tribally designated housing entity (TDHE) do to provide accessible housing for members with disabilities?

                  2. Does your tribe or TDHE comply with Section 504 of the Rehabilitation Act?

                  3. Does your tribe or TDHE retrofit existing houses when someone needs a bathroom modified or ramp built?

                  4. What is your tribe or TDHE doing to make sure that people with disabilities have adequate accessible housing?

                  5. What cultural or traditional issues may be barriers to providing accessible housing for people with disabilities?

                  6. What are the major barriers to making more homes accessible on your reservation?

                  7. What resources does your tribe need in order to overcome these barriers?

                  8. What guidelines do you suggest for improving housing options for members with disabilities on your reservation? (AIDTAC, 2001, pp. 12-13).

                    These questions can be used within a talking circle or group format to bring together community members with diverse perspectives and come to a full understanding of the spectrum of needs within your specific community. From these shared experiences, new understanding and wisdom may grow to move the process forward.

                    When the time comes to develop a plan of action, the checklist developed by the City of San Antonio Department of Planning may be a useful starting point. It identifies eight steps to an "action plan outline for access compliance":

                    1. Become Knowledgeable: Prepare a good-faith plan for immediate barrier removal.

                    2. Survey Existing Conditions: Assemble a survey team including people with disabilities to assist in identifying barriers and developing solutions. You will need site and floor plans for making notes, and a tape measure.

                    3. Summarize the Results: List all identified barriers and indicate the actual dimension/conditions of each.

                    4. Consider Possible Solutions: Brainstorm ideas for barrier removal and determine probable costs for options. Decide which solutions best eliminate barriers at a reasonable cost. Consider practical alternatives.

                    5. Prioritize Barrier Removal:

                    Priority One: Accessible entrances into the facility and path of travel to reach those entrances

                    Priority Two: Access to goods and services

                    Priority Three: Access to restrooms

                    Priority Four: Any other measures necessary to provide access

                    6. Remove All Barriers Identified as "Readily Achievable": A "Checklist for Readily Achievable Barrier Removal" is available through the City of San Antonio's Disability Access Office for use in completing a survey of potential architectural and communication barriers.

                    7. Put a Good-Faith Action Plan in Place: It is critical to demonstrate a good-faith effort that includes documentation of everything you have done and how you plan to address future compliance requirements.

                    8. Utilize Dynamic Process for Continuing Accessibility: Review your implementation plan each year to reevaluate whether more improvements have become readily achievable. (City of San Antonio, 2001)

                      Model Approaches

                      Partnerships between tribal programs working with the tribal council are essential to meeting the housing and facility accessibility needs of tribal members with disabilities. Partnerships with community organizations can also help to meet needs where tribal or federal funding comes up short. Even with limited resources, it is possible to make headway in prioritizing and responding to the needs of tribal members with disabilities. The experience of the Oglala Lakota of the Pine Ridge Reservation is a case in point.

                      Pine Ridge "Quad Squad": Pine Ridge is home to the 17,775-member Oglala Lakota Tribe. The Pine Ridge Reservation includes seven counties with over 11,000 square miles and is situated in southwestern South Dakota on the Nebraska state line, about 50 miles east of the Wyoming border (Mni Sose, 2002). Jo White, director of the Pine Ridge "Quad Squad," which was formed in 1989, has continued the tradition of advocacy for individuals with disabilities on the Pine Ridge Reservation by coordinating services with the VR program and partnership activities with the tribal housing authority.

                      Challenge: With unemployment of nearly 84 percent (American Indian Relief Council, 2002), the Pine Ridge Reservation is the poorest area of the United States and faces significant economic challenges in achieving accessibility in housing and facilities.

                      Resolution: Despite this barrier, the tribal council, Oglala Sioux Tribal Housing Authority, and other tribal support services for individuals with disabilities led by the Quad Squad have worked together to increase accessibility on the reservation, identify individual needs, and develop a plan of response. Currently, the Housing Authority and the "Quad Squad" are working together to construct sidewalks and crossing lights to aid individuals who use wheelchairs or have another type of physical mobility disability.

                      How it happened: The needs of tribal members with disabilities are represented on the tribal housing board by an ex-officio member who is also a consumer. This board member is instrumental in ensuring that the needs of tribal members with disabilities are prioritized in the five-year plan and subsequent yearly block grant plans created under the authority of the Native American Housing Assistance and Self-Determination Act (NAHASDA). As a result, the Oglala have adopted the 5 percent rule of ADA, ensuring that 5 percent of all houses built are accessible. The Housing Authority maintains a waiting list of individuals with disabilities with accessibility needs. Currently, only six individuals are on this list, and for the first time, the Quad Squad has 10 ramps available for the immediate use of consumers; in the past, individuals have had to wait as long as one or two years for one to become available. Partnerships with other community organizations, such as Native American Advocacy, and community church groups have helped to build this success as well.

                      Tips from the field: Following are some suggestions from the Quad Squad experience:

                      • Reach out to other organizations and tribal programs. Help is available, but one must find opportunities and build on them.
                      • Develop a voice in the tribal council and relevant boards. In order to make the needs of individuals with disabilities known, one needs a share of the voice of the tribal governance.

                      Making Plans a Reality

                      A number of organizations (Native and non-Native), federal and state agencies, and publications can help in the development of accessible housing and facility services for your community. Five frequently asked questions have been identified regarding accessible housing and facility services and the development of programs and related issues. Find your question, or one that is similar, in the list below.

                      Frequently Asked Questions

                      1. Whom do I contact first for help in making my home or work place accessible?

                      2. What legislation impacts housing for tribal members with disabilities, and how do I file a complaint if the laws are not being honored?

                      3. Where do I learn more about universal design?

                      4. Whom can I contact for technical assistance, training needs, networking opportunities, and information on housing?

                      5. What types of funding are available for tribal housing programs looking to create accessible facilities for tribal members, and how do I apply?

                        In the following pages, each question will be presented in bold with a short response and a recommendation of resources to contact for more information on the subject. Much of the contact information presented here was compiled with the assistance of the AIDTAC 2002 Resource Book (AIDTAC, 2002). If the information you are looking for is not presented here, the Resource Book may provide further insight into your question. AIDTAC can be reached toll free at 1-866-4- AIDTAC or 1-866-424-3822, or via the Web at www.aidtac.org. The Internet sites for the agencies listed in this section may also prove useful in your own research.

                        Whom do I contact first for help in making my home or work place accessible?

                        Start by contacting your tribal housing authority and/or TDHE. The TDHE is the primary contact point for federal funds for housing and construction according to NAHASDA. The TDHE is designated by the tribe (and may double as the tribal housing authority or take membership from this group) to develop a five-year plan of action or overview of the direction the tribe will take in meeting its low-income housing needs as well as a yearly plan detailing the resources the tribe will use to meet these needs. The TDHE is then given funds allocated to the tribe in the form of a block grant. Each year approximately 540 tribes participate in this program for a total of approximately $640 million. A formula determines the actual amount allocated per tribe. The TDHE sets its own housing and construction priorities. From building ramps to building ILCs or for projects to modify existing buildings, the TDHE may use its resources as it best sees fit according to the needs of its low-income community (Jacobsen, 2002).

                        In many tribes, the Vocational Rehabilitation Office partners with the tribal housing authority and the tribal council to identify work place modification needs for tribal members with disabilities who train for work with tribal employers or with employers outside of tribal communities. As in the case of Pine Ridge, profiled in the Assistive Technology section, Vocational Rehabilitation Offices can serve as important advocates, assisting individuals with disabilities in raising the awareness and prioritization of their housing and accessibility needs. ILCs can also be an important source of information regarding housing and accessibility issues (see Independent Living section).

                        What legislation impacts housing for tribal members with disabilities and how do I file a complaint if the laws are not being honored?

                        The main legislation impacting housing for tribal members with disabilities consists of six acts. Five acts relate specifically to individuals with disabilities and provide for accessibility in housing practices and procedures. The sixth reorganizes the U.S. Department of Housing and Urban Development (HUD) programs designed for Native American housing and provides another opportunity for individuals with disabilities to have their housing needs met.

                        Rehabilitation Act, Section 504: This piece of legislation prohibits discrimination on the basis of disability and requires that new construction and newly altered facilities built with federal funds be accessible. Each federal agency providing funds is responsible for enforcing the Act, and complaints must be directed to the federal agency with authorization for the particular project in question (Makoa, 2002).

                        The Architectural Barriers Act: This Act requires that buildings and facilities be accessible if, since 1968, they were "designed, built, or altered with certain federal funds, or if they are leased for occupancy by federal agencies" (Makoa, 2002). Accessibility standards cover things such as walks, ramps, curb ramps, entrances, elevators, and rest rooms. They are described in the Uniform Federal Accessibility Standards. Complaints may be filed with the Access Board (Makoa, 2002):

                        Office of Compliance and Enforcement
                        1331 F Street NW, Suite 1000
                        Washington, DC 20004-1111

                          Americans with Disabilities Act, Title II: ADA prohibits discrimination on the basis of disability in public accommodations in addition to its other charges (for a full description of the impact of ADA on tribal governments, please see the Federal Disability Law and Tribes section). ADA does not require a link to federal funds for application as the previous two acts do. The U.S. Department of Justice enforces Title III (Makoa, 2002).

                          Fair Housing Act: This law prohibits discrimination on the basis of disability in the sale, rental, or financing of housing. Also, it provides for certain architectural accessibility requirements in new, multifamily housing. Complaints may be filed with HUD (Makoa, 2002).

                          Native American Housing and Self-Determination Act: NAHASDA reorganizes the relationship between tribal governments and HUD, recognizing the right of self-governance of American Indian tribes. As a result of this legislation, the block grant programs were consolidated, and tribally designated housing authorities in each eligible tribe are asked to make their own prioritization regarding how these funds are to be used (Jacobsen, 2002). Title VI of this Act authorizes a loan guarantee program designed to help ensure better access to private capital markets for Indian tribes.

                          Where do I learn more about universal design?

                          The City of San Antonio is an example of best practices in the area of community-oriented universal design. For those looking to learn more about these strategies and for technical guidance, the City of San Antonio is a great place to start. For a more technical perspective, HUD offers assistance on its Web site. Information can also be obtained by phone through HUD. Finally, the Uniform Federal Accessibility Standards provide the exact federal guidelines for accessibility.

                          Center for Universal Design

                          College of Design
                          North Carolina State University
                          50 Pullen Road, Brooks Hall, Room 104
                          Campus Box 8613
                          Raleigh, NC 27695-8613
                          Phone: (800) 647-6777; (919) 515-3082
                          Fax: (919) 515-7330
                          E-mail: cud@ncsu.edu

                          The Center for Universal Design is a national research, information, and technical assistance center that evaluates, develops, and promotes universal design in housing, public and commercial facilities, and related products.

                          U.S. Architectural and Transportation Barriers Compliance Board

                          (Access Board)

                          Office of Technical and Information Services
                          1331 F Street NW, Suite 1000
                          Washington, DC 20004-1111
                          Documents
                          Phone: (800) 872-2253
                          TTY/TDD: (800) 993-2822
                          Electronic Bulletin Board Service: (202) 272-5448

                          This federal agency developed the ADA Accessibility Guidelines (ADAAG), which were adopted by the Department of Justice (DOJ) and the Department of Transportation (DOT) as enforceable standards and called the ADA Standards for Accessible Design. The Access Board provides technical assistance on the ADAAG regarding design and the removal of architectural, transportation, communication, and attitudinal barriers that affect persons with physical disabilities.

                          Whom can I contact for technical assistance, training needs, networking opportunities, and research information on housing?

                          Native American Indian Housing Council (NAIHC)
                          900 2nd Street NE, Suite 305
                          Washington, DC 20002
                          Phone: (202) 789-1754; (800) 284-9165
                          Fax: (202) 789-1758
                          Web site: http://naihc.indian.com/index.html

                          NAIHC is a national membership organization that promotes, supports, and upholds tribal housing agencies in their efforts to provide culturally relevant, decent, safe, sanitary, and affordable housing for Native people in American Indian communities and Alaska Native villages.

                          Center for Housing and New Community Economics (CHANCE)

                          Institute on Disability/UCE
                          University of New Hampshire
                          7 Leavitt Lane, Suite 101
                          Durham, NH 03824-3522
                          E-mail: drv@cisunix.unh.edu

                          CHANCE was established in March 2001. CHANCE's mission is to improve and increase access to integrated, affordable, and accessible housing coordinated with, but separate from, personal assistance and supportive services. CHANCE's purpose will be to offer alternatives to approaches that segregate, congregate, and control people with disabilities. The IOD will work in partnership with American Disabled for Attendant Programs (ADAPT) in all aspects of the Center. ADAPT is a national organization that focuses on promoting services in the community for people with disabilities.

                          The Consortium for Citizens with Disabilities (CCD)

                          1730 K Street NW, Suite 1212
                          Washington, DC 20006
                          Phone: (202) 785-3388
                          Fax: (202) 467-4179
                          E-mail: Info@c-c-d.org

                          CCD is a coalition of national consumer, advocacy, provider, and professional organizations headquartered in Washington, D.C. Since 1973, the CCD has advocated on behalf of people of all ages with physical and mental disabilities and their families. CCD does this by

                          • Identifying and researching public policy issues, developing testimony and policy recommendations, and encouraging innovative solutions to public policy concerns.
                          • Educating members of Congress in an effort to improve public policies and programs that foster independence, productivity, integration, and inclusion of people with disabilities.
                          • Encouraging people with disabilities and their families to advocate for themselves and coordinating grassroots efforts to support these advocacy efforts.

                          CCD has worked to achieve federal legislation and regulations that ensure that the 54 million children and adults with disabilities are fully integrated into mainstream society.

                          Fannie Mae Homepath Services
                          Phone: (800) 7FANNIE; (800) 732-6643
                          Web site: www.homepath.com/cgi-bin/WebObjects-4/HomePathWOF

                          Fannie Mae is the largest source of home mortgage funds in the United States. Homepath.com is a Web site designed to help consumers find mortgage information. A Fannie Mae Foundation publication promotes economic understanding and personal financial literacy among Native people and teaches Native Americans financial skills that help them make informed financial decisions for themselves, their families, and their communities.

                          Housing Assistance Council (HAC)

                          National Office
                          1025 Vermont Avenue NW, Suite 606
                          Washington, DC 20005
                          Phone: (202) 842-8600
                          Fax: (202) 347-3441
                          E-mail: hac@ruralhome.org

                          Since 1971, this national nonprofit organization has worked to improve the availability of decent, affordable housing in rural areas of the United States by helping local organizations build affordable single- and multifamily homes for low-income people. HAC emphasizes local solutions, empowering the poor, reducing dependence, and using self-help strategies such as "sweat equity" construction. Special focus is on high-need groups and regions: Indian country, the Mississippi Delta, farmworkers, the Southwest border colonias, and Appalachia. If you have a general question or are not sure which office to contact, please contact the National Office at hac@ruralhome.org and HAC staff will determine who is best able to respond to you.

                          National Association of Home Builders (NAHB)

                          Research Center
                          400 Prince George's Boulevard
                          Upper Marlboro, MD 20774
                          Phone: (301) 249-4000; (800) 638-8556
                          Accessibility Concerns: (301) 430-6213; (301) 430-6234
                          Fax: (301) 430-6180

                          NAHB publishes Residential Remodeling and Universal Design: Making Homes More Comfortable and Accessible and houses the National Center for Seniors' Housing Research.

                          National Low Income Housing Coalition (NLIHC)

                          1012 14th Street NW, Suite 610
                          Washington, DC 20005
                          Phone: (202) 662-1530
                          Fax: (202) 393-1973
                          E-mail: info@nlihc.org
                          Web site: www.nlihc.org/

                          Established in 1974, NLIHC is dedicated solely to ending America's affordable housing crisis. NLIHC educates, organizes, and advocates, ensuring decent, affordable housing within healthy neighborhoods for everyone. NLIHC provides up-to-date information, formulates policy, and educates the public on housing needs and the strategies for solutions.

                          Neighborhood Reinvestment Training Institute
                          1325 G Street NW, Suite 800
                          Washington, DC 20005
                          Phone: (202) 220-2454; (800) 438-5547
                          Fax: (202) 376-2168
                          E-mail: nrti@nw.org

                          The Neighborhood Reinvestment Training Institute is dedicated to providing the highest quality training to the staff and boards of organizations committed to improving the affordability of neighborhood housing, the vitality of neighborhood economies, and the quality of community life.

                          Rural Housing Service National Office

                          U.S. Department of Agriculture
                          Room 5037, South Building
                          14th Street and Independence Avenue SW
                          Washington, DC 20250
                          Phone: (202) 720-4323
                          Web site: www.rurdev.usda.gov/rhs/Feedback/feedback.htm

                          The U.S. Department of Agriculture (USDA) promotes rural development programs including housing assistance programs. The USDA supports programs in three main areas: community facilities, single-family housing, and multifamily housing. The Web site will direct you to the appropriate state agency for grant or program applications and information.

                          What types of funding are available for tribal housing programs looking to create accessible facilities for tribal members, and how do I apply?

                          As Jo White, founding member of the Quad Squad in Pine Ridge, South Dakota, knows well, "there is a lot of great stuff to help you live independently, but it costs money; and getting money takes a lot of time" (White, 2002). Though Ms. White was speaking about assistive technology, the same can be said for housing and facility accessibility services. The following two agencies are where the funding hunt begins. However, innovation, openness to partnerships, and creative collaboration will lead to other sources that will help to meet the needs of not only low-income tribal members, but those struggling to make ends meet as well. The list of agencies and contacts described in the previous section may also be used to seek funding sources and programs.

                          U.S. Department of Housing and Urban Development

                          HUD Office of Public and Indian Housing;
                          HUD Office of Native American Programs
                          451 7th Street SW
                          Washington, DC 20410
                          Phone: (202) 708-1112
                          Fax: (202) 708-1455
                          Web site: www.hud.gov/groups/nativeamericans.cfm

                          HUD offers programs, assistance, and loan programs specifically for Native American tribes, organizations, and, sometimes, individuals. HUD offers information on basic homebuying, fair housing, and housing counseling. The HUD Office of Native American Programs offers grant assistance through four main programs; two are focused on tribal communities and two are focused on individuals. The Codetalk Web site administered by HUD is also an excellent resource for program information.

                          Bureau of Indian Affairs

                          Office of Public Affairs
                          1849 C Street, NW - MS-4542-MIB
                          Washington, DC 20240-0001
                          Phone: (202) 208-3711
                          Fax: (202) 501-1516
                          Web site: www.doi.gov

                          BIA's mission is to enhance the quality of life, to promote economic opportunity, and to protect and improve the trust assets of American Indians, Indian tribes, and Alaska Natives. BIA seeks to accomplish this by delivering quality services and maintaining government-to-government relationships within the spirit of Indian self-determination. The Bureau has limited funds available for road maintenance and low-income housing improvement programs. According to Bureau staff, the agency receives as many as 5,800 applicants for their low-income housing improvement grants. With a budget of $23 million per year, BIA is able to fill only approximately 500 requests; the waiting list is extensive (Hinkel, 2002). Currently, access to the Department of the Interior Web site is restricted in compliance with a court order.

                          References

                          American Indian Disability Technical Assistance Center (AIDTAC). (2002). AIDTAC Resource Book. Missoula: The University of Montana, Rural Institute on Disabilities.

                          American Indian Disability Technical Assistance Center (AIDTAC). (2001). A Short Guide to Developing Disability Infrastructure on Reservations. Missoula: The University of Montana, Rural Institute on Disabilities.

                          American Indian Relief Council (AIRC). (2002). Pine Ridge Reservation. Retrieved October 8, 2002, from
                          www.airc.org/reservations/pineridge.html.

                          City of San Antonio Planning Department, Disability Access Office and Enterprise Foundation. (2001). Universal design 2001.

                          City of San Antonio Planning Department, Disability Access Office and Enterprise Foundation. Universal design. Flyer.

                          Hinkel, June. Bureau of Indian Affairs. (September 17, 2002). Telephone interview by Ara Walline.

                          Jacobsen, Donna, U.S. Department of Housing and Urban Development. (October 4, 2002). Telephone interview by Ara Walline.

                          Makoa. (2002). The Architectural Barriers Act and Other Access Laws. Retrieved October 4, 2002, from
                          www.makoa.org/gov/g15.htm.

                          Mni Sose Intertribal Water Rights Coalition. (2002). Oglala Sioux Tribe Community Environmental Profile. Retrieved October 8, 2002, from www.mnisose.org/profiles/oglala.htm.

                          Shuckahosee, Robert, AIDTAC Rural Institute on Disabilities. (2000). Disability issues and Indian housing: Section 504 is a right! Missoula: University of Montana.

                          South Dakota Resource Directory. Retrieved October 23, 2002, from
                          www.state.sd.us/dhs/drs/ADA/resourcedir/stateada.htm

                          U.S. Department of Justice. (2001). A Guide to Disability Rights.

                          White, Jo. (September 9, 2002). Telephone interview by Martina Whelshula.

                          Transportation

                          Background

                          The spectrum of transportation needs and barriers in Indian country is as diverse as the land itself. Among the 550 federally recognized tribes, the size, climate, and infrastructure of tribal lands vary, from the urban-centered Oneida Nation in Green Bay, Wisconsin, to the rural-based Cook-Inlet Tribe in the greater Anchorage area of Alaska. Correspondingly, services range from the dedicated community health representatives who provide primary transportation services for the Yakama Nation in Washington State to the dispatch-operated fleet of fully accessible vans operated by the Pueblo of the Zuni in Northwest New Mexico. In 1995, only 19 tribes had transportation programs funded by the Federal Transit Administration's Section 18 Federal Transit Grant for Non-Urban Areas (Community Transportation Association of America, 2002). Transportation resources and needs remain out of sync in many areas today.

                          Though each tribe is challenged to assess its own needs, match those to the services currently provided, and determine where the gaps in services lie, there are some common struggles among individuals with disabilities across the nation. Transportation for tribal members with disabilities living on tribal lands is complicated by the high cost and in some cases physical impossibility of owning, adapting, insuring, and maintaining vehicles for personal use. Without a reliable tribal public transportation system to rely on, these individuals must rely on friends and family to meet their health, medical, employment, social, and household needs, or go without. An individual's level of independence is thus often determined to a greater extent by community resources, or lack of them, than by his/her own physical capabilities.

                          Barriers to Service

                          • Remoteness and isolation (distance to services)
                          • Limited public transportation services
                          • Lack of accessibility (i.e., roads, providers, accommodations)
                          • Economic hardship in private transportation ownership (no money for car, insurance, maintenance, other transportation)
                          • Driver's license (limited drivers, suspension, inaccessibility)
                          • Limited public transportation operation hours and service area (no evening or weekend transportation)

                          This section will provide tools for assessing your own tribal program, describe strategies that other tribes and service providers have used to overcome the barriers in their communities, and present resources and advocates that are available to assist in the development and implementation of your own action plan to improve transportation and access for people with disabilities in your community.

                          Assessing Service Needs

                          The first step to building a strong framework for services for people with disabilities is to know which services are currently available and which are not. The seven questions that follow were developed by AIDTAC in order to begin this assessment process. It is suggested that they be used within a talking circle or group format to bring together community members with diverse perspectives and to come to a full understanding of the spectrum of needs within your specific community. From these shared experiences, new understanding and wisdom may grow to move the process forward.

                          1. What transportation services are available on your reservation?

                          2. Are people with disabilities able to use these transportation services?

                          3. What is your tribe doing to make sure that people with disabilities have adequate transportation?

                          4. What are the cultural or traditional issues that should be addressed as barriers to transportation for people with disabilities?

                          5. What are the major barriers to making transportation on your reservation accessible to people with disabilities?

                          6. What resources does your tribe need in order to overcome these barriers?

                          7. What guidelines do you suggest for removing transportation barriers on your reservation? (AIDTAC, 2001, pp. 10-11)

                            Definitions

                            The following brief list of definitions developed by the National Transit Resource Center will assist you in navigating the resource information currently available as you look to grow and develop your existing transportation framework (Community Transportation Association of America, 2002). In this section, you will find descriptions of the variety of service structures currently used to meet the needs of individuals with disabilities. For a more complete glossary, the Web site of the National Transit Resource Center, Community Transportation Association of America, provides a good starting point (www.ctaa.org/ntrc/glossary.asp).

                            Accessibility: The extent to which facilities, including transit vehicles, are barrier-free and can be used by people who have disabilities, including wheelchair users.

                            Coordination: A cooperative arrangement between transportation providers and organizations needing transportation services. Coordination models can range in scope from shared use of facilities, training, or maintenance to integrated brokerages or consolidated transportation service providers.

                            Curb-to-Curb Service: A common designation for paratransit services. The transit vehicle picks up and discharges passengers at the curb or driveway in front of their home or destination. In curb-to-curb service the driver does not assist the passenger along walks or steps to the door of the home or other destination.

                            Demand-Response Service: The type of transit service where individual passengers can request transportation from a specific location to another specific location at a certain time (also called "dial-a-ride"). Transit vehicles providing demand-response service do not follow a fixed route but travel throughout the community transporting passengers according to their specific requests. These services usually, but not always, require advance reservations.

                            Deviated Fixed Route: This type of transit is a hybrid of fixed-route and demand-response services. A bus or van passes along fixed stops and keeps to a timetable; however, the bus or van can deviate from its course between two stops to go to a specific location for a prescheduled request. Often used to provide accessibility to persons with disabilities.

                            Door-to-Door Services: A form of paratransit service that includes passenger assistance between the vehicle and the door of his or her home or other destination. A higher level of service than curb-to-curb, yet not as specialized as "door-through-door" service (where the driver actually provides assistance within the origin or destination).

                            Fixed Route: Transit services where vehicles run on regular, predesignated, prescheduled routes, with no deviation. Typically, fixed-route service is characterized by printed schedules or timetables, designated bus stops where passengers board and exit, and the use of larger transit vehicles.

                            Guaranteed Ride Home: Program that encourages employees to carpool, use transit, bike, or walk to work by guaranteeing them a ride home in case they cannot take the same mode home (e.g., if they need to work late or if an emergency occurs).

                            Medicaid: Also known as Medical Assistance, this is a health care program for low-income and other "medically needy" persons. It is jointly funded by state and federal governments. The Medicaid program pays for transportation to nonemergency medical appointments if the recipient has no other means to travel to the appointment.

                            Paratransit: Types of passenger transportation that are more flexible than conventional fixed-route transit but more structured than the use of private automobiles. Paratransit includes demand-response transportation services, subscription bus services, shared-ride taxis, car-pooling and vanpooling, and so on. Most often refers to wheelchair-accessible, demand-response van service.

                            Rideshare Program: A rideshare program facilitates the formation of carpools and vanpools, usually for work trips. A database is maintained for the ride times, origins, destinations, and driver/rider preferences of users and potential users. Those requesting to join an existing pool or looking for riders are matched by program staff with other appropriate persons. In rural areas, a rideshare program is often used to coordinate Medicaid or volunteer transportation.

                            Service Route: Another hybrid between fixed-route and demand-response service. Service routes are established between targeted neighborhoods and service areas that riders want to reach. Similar to deviated fixed routes, service routes are characterized by flexibility and deviation from fixed-route intervals. However, while deviated fixed routes require advance reservations, service routes do not. A service route can include both regular, predetermined bus stops and/or allow riders to hail the vehicle and request a drop-off anywhere along the route.

                            Technical Assistance: Nonfinancial support to help accomplish program goals, such as training, consulting, research, or evaluation.

                            User-Side Subsidy: A transportation funding structure in which qualified users (usually economically disadvantaged persons) are able to purchase vouchers for transportation services at a portion of their worth. The users then may use the vouchers to purchase transportation from any participating provider. The vouchers are redeemed by the provider at full value and the provider is reimbursed by the funding agency for the full value.

                            Vanpool: A prearranged ridesharing service in which a number of people travel together on a regular basis in a van. Vanpools may be publicly operated, employer operated, individually owned, or leased.

                            Model Approaches

                            Recognizing that a weak transportation infrastructure may limit economic opportunities and pose a substantial barrier to accessing essential health and social services for individuals with disabilities as well as other tribal members, several tribes have developed model transportation systems. In developing these systems, tribes have tapped funding opportunities from a variety of state and federal sources. The end result has been transportation systems that are fully accessible to people with disabilities and that link these individuals to employment centers and health and human services programs.

                            Pueblo of the Zuni

                            The Pueblo of the Zuni is the largest of 19 pueblos in northwest New Mexico. It serves a population of 11,000 people and covers 1,000 square miles. Twelve years ago, Program Director Larry Alflen recognized transportation as one of the community's biggest barriers to service provision (Alflen, 2002). The profile that follows describes the work that has been completed so far.

                            Challenge: Situated 40 miles north of Gallup and 150 miles west of Albuquerque, the pueblo's remoteness and isolation caused considerable difficulty for tribal members to access services, particularly those tribal members with disabilities.

                            Resolution: Today, the Pueblo of the Zuni provides approximately 33,000 trips a year around the community, and up to 200 trips per day. The transportation program operates several 15-passenger vans (some with wheelchair lifts), is accessible to all tribal members, including those with disabilities, and is demand responsive (a dispatcher coordinates transportation requests). It also utilizes peer drivers to meet the needs of the community. In addition, several drivers and their dispatcher are graduates of the VR program.

                            How it happened: The program is funded through a number of grants: Sections 5311 and 5310 of the Transportation Act, otherwise known as the Small Urban and Rural Transportation Grant and the Capital Program for Elderly and Disabled Transportation; demonstration projects sponsored by the Association of Programs for Rural Independent Living (APRIL); a State of New Mexico vocational rehabilitation transportation grant; and endorsement by Medicaid for transportation reimbursement for services provided to individuals with disabilities. Most of these grants require reapplication every year. Developing strong relationships with agency grants administrators is key to understanding how to develop and sustain competitive proposals.

                            Tips from the field:

                            • Look at a variety of different opportunities to meet as many needs as possible.
                            • Develop strong relationships with agency grants administrators in order to understand how to develop competitive proposals.
                            • Explore overlaps in service needs and program opportunities.

                            Confederated Salish and Kootenai Tribes

                            The Flathead Reservation, home of the Confederated Salish and Kootenai Tribes, spans 1.5 million acres in seven communities. VR Program Director Arlene Templer has been working with program staff to develop transportation resources to connect tribal members to employment opportunities (Templer, 2002). The following profile, which is based on a telephone interview, depicts a program that continues to evolve.

                            Challenge: Remoteness and isolation are the primary barriers for this community as well. Many tribal members are as far as an hour away from the tribal complex and tribal health and human service offices where the majority of services are provided.

                            Resolution: Transportation needs were integrated into VR, elderly, and independent living grant proposals. In this way the resolution to the barrier became part of the process of strengthening existing services. The program uses a number of approaches and still recognizes that challenges remain in the implementation of the program even after it is developed and operational. The program uses a voucher system but sees that as a limited option because there are not many service providers. This limitation has led the program director to seek a more long-term resolution. Using accessible buses, vans, and cars, the program is developing a combination fixed-route dispatch service in collaboration with the Salish Kootenai College.

                            How it happened: The Confederated Salish and Kootenai Tribes responded to their transportation need by integrating services and seeking technical assistance through their extensive network of partnering agencies. By taking a two-pronged approach, they can offer temporary transportation services to supplement their VR, elderly services, and services for individuals with a disability while working to develop a more comprehensive service that is tailored to their community's specific need.

                            Tips from the field:

                            • Network with service providers, agencies offering grants, and technical assistance organizations in order to understand the service options available to your community.
                            • Consider integrating transportation services with the programs that transportation supports (e.g., vocational rehabilitation and job employment, education programs, elderly services, and disability services).

                            Other Programs

                            Several other tribes have developed strong transportation programs in their community. Among these are the Navajo Transit System in Arizona, the Choctaw Nation in Mississippi, the Chicksaw Nation Transportation System in Oklahoma, and the Shoshone and Arapaho Nation Transit System in Wyoming. Each of these programs operates fully accessible paratransit vans or vehicles that are ADA compliant. While empirical evidence has not been gathered regarding consumer satisfaction with these services, it is reasonable to believe that these systems have added another degree of independence for individuals with disabilities in these communities as they are more readily connected to employment and health and human services programs (Langwell and Sutton, 2002).

                            Making Plans a Reality

                            A number of organizations (Native and non-Native), federal and state agencies, and publications are available to help in the development of transportation services for your community. Six frequently asked questions have been identified regarding transportation services, the development of programs, and related issues. Find your question, or one that is similar, in the list below.

                            Frequently Asked Questions

                            1. How do you find out about transportation services in your area?

                            2. What do you do if there are no transportation services in your area?

                            3. How do you assess the transportation needs and develop a service network in your community?

                            4. How do you find funding to support transportation services and programs?

                            5. Who provides assistance with compliance?

                            6. What legislation on the horizon could impact transportation service funding? How do you keep informed about the impact of pending legislation on transportation in tribal communities?

                              In the following pages, each question will be presented in bold with a short response and a recommendation of resources to contact for more information on the subject. Much of the contact information presented here was compiled with the assistance of the AIDTAC 2002 Resource Book. If the information you are looking for is not presented here, the AIDTAC Resource Book may provide further insight into your question. AIDTAC can be reached toll free at 1-866-4-AIDTAC (1-866-424-3822), or on the Web at www.aidtac.org. The Internet sites for the agencies listed in this section may also prove useful in your own research.

                              1. How do you find out about transportation services in your area?

                              Begin by contacting your tribe. Transportation programs are most often affiliated with health care services or VR and employment services.

                              When greater distances are involved, a national database can assist you in locating and scheduling transportation and accommodation, whether it be air or ground transportation that you require. The information following provides a more extensive description of this service.

                              Project ACTION Accessible Traveler's Database

                              Phone: (202) 347-3066; (800) 659-6428
                              TTY/TDD: (202) 347-7385
                              Web site: www.projectaction.org/paWeb/index.htm

                              This database provides information about availability of local public transit systems (including private shuttle and taxi services) that are paratransit compatible. The database organizes service information by state and city, aiding travelers in planning and scheduling transportation at unfamiliar destinations as well as assisting individuals with disabilities in identifying existing services within their own communities. More specifically, the database includes seven types of service providers:

                              • Public urban and rural transit operators
                              • Accessible van rental companies
                              • Private bus/tour companies with accessible vehicles
                              • Accessible taxis
                              • Airport transportation
                              • Hotel-motel shuttles
                              • National 800 numbers (domestic airlines, Greyhound Intercity Services, Amtrak, companies with accessible car rental, and major hotel chains)

                              Each entry contains contact information for the service provider as well as hours of operation, paratransit fare, eligibility, service route, and advance reservation requirements. If you do not have access to the Internet, you may contact Easter Seals Project ACTION directly for assistance.

                              2. What do you do if there are no transportation services in your area?

                              If your community has not developed a transportation assistance program that is accessible to you or a family member with a disability, it does not mean that you or your friend or family member is alone in this need. Contacting your tribal health, education, or VR program will still be a good starting point. Using the tips in the Advocating Change section of this Toolkit and the resources of your tribe's program staff, identify and meet with other members of the community who may have similar transportation concerns.

                              This grassroots approach was incredibly successful for members of the Hopi Nation in Arizona. The early intervention program, special activity day, and newly formed VR program all grew out of the passionate commitment of a core group of parents and community members who identified a service need, educated themselves about the topic, formed a plan, and worked for change.

                              3. How do you assess the transportation needs and develop a service network in your community?

                              For help in assessing the service needs of your community and developing a program suited to those needs, a variety of organizations are available to guide you through the process. The following groups can direct you to resources, inform you about meetings and conferences on the topics you are interested in, and designate a technical liaison to work with you one-on-one in answering your questions. Groups specializing in independent living services, such as APRIL, may also provide assistance on transportation development (see Independent Living section).

                              American Indian Disability Technical Assistance Center (AIDTAC)

                              The University of Montana Rural Institute: Center of Excellence in Disability Education, Research and Services
                              52 Corbin Hall
                              Missoula, MT 59812-7056
                              Phone: (866) 4-AIDTAC; (866) 424-3822
                              Fax: (406) 243-2349
                              Web site: www.aidtac.org

                              AIDTAC is a Native American organization whose mission is to provide information and technical assistance to AI/AN tribes as they build their capacity to develop and implement culturally appropriate laws and policies, cross-cutting infrastructure, and direct program services for tribal members with disabilities. AIDTAC provides excellent information about funding opportunities, training seminars and workshops, and Internet research links. Eight staff members and five subcontractors are currently employed by the organization to provide assistance to consumers.

                              The National Transit Resource Center

                              Community Transportation Association of America (CTAA)
                              1341 G Street NW, 10th Floor
                              Washington, DC 20005
                              Phone: (202) 628-1480
                              Fax: (202) 737-9197
                              Web site: www.ctaa.org/ntrc/is_nativeamerican.asp
                              Contact: Chris Zeilinger; Phone: (202) 661-0217

                              The Resource Center recognizes the transportation needs and barriers in Indian country and offers specific resources for tribal governments and programs in addition to meeting its larger charge to support public and community transportation efforts serving community planners, transit providers, and on-the-move citizens with instructional briefs, studies, and reports, collected data, legislative facts, professional peer support, advice, and mobility assistance. In addition to the USDA program described below, the CTAA also works with the Labor and Transit Administrations to provide service support. Every January, it updates and publishes a joint funding and resource guide for tribal programs. Its publications include "Transportation in Indian Country: Getting Started," with worksheet guides to assist program developers; "American Indian Transportation: Issues and Successful Models," with extensive program and funding information; and "Welfare Reform in Indian Country: Current Trends and Future Directions."

                              USDA Tribal Passenger Technical Assistance Program

                              National Transit Resource Center
                              Community Transportation Association of America
                              Phone: (202) 628-1480, ext. 119
                              Fax: (202) 737-9197
                              Web site: www.ctaa.org/ntrc/usda/projects/tpttap_brochure.asp

                              This program is designed to help tribal communities enhance economic growth and development by improving transportation services. It provides planning assistance for facility development, transit service improvements and expansion, new system start-up, policy and procedure development, marketing, transportation coordination, training, and public transit problem-solving activities. Federally recognized tribes are eligible to receive assistance. Tribes must complete and submit an application to CTAA for review, scoring, and ranking. Projects are initiated according to this approval process.

                              Easter Seals Project ACTION

                              (Accessible Community Transportation in Our Nation)
                              700 13th Street NW, Suite 200
                              Washington, DC 20005
                              Phone: (202) 347-3066; (800) 659-6428
                              TTY/TDD: (202) 347-7385
                              Fax: (202) 737-7914
                              E-mail: project_action@opa.easter-seals.org
                              Web site: www.projectaction.org/

                              Funded through a cooperative agreement with the U.S. Department of Transportation and the Federal Transportation Administration, Easter Seals Project ACTION (ESPA) promotes cooperation between the transportation industry and the disability community to increase mobility for people with disabilities under ADA and beyond. Project ACTION offers various resources, as well as training and technical assistance, in an effort to make ADA work for everyone, every day. Congressionally mandated priority areas include transportation needs assessment of people with disabilities in local communities; outreach and marketing strategies, training for transit providers and consumers with disabilities, and technology to eliminate barriers to transportation accessibility.

                              ESPA has created a solid outlet for information dissemination through the development of a resource center, clearinghouse, an 800 number, and Web site and participation in technical assistance conferences. All training curricula, manuals, models, and videotapes are available at no cost. Funding has been mandated for this project through 2003 under the Transportation Equity Act for the Twenty-first Century.

                              Transportation Research Board (TRB)

                              2001 Wisconsin Avenue NW, Green Building
                              Washington, DC 20007
                              Phone: (202) 334-2934
                              Fax: (202) 334-2003
                              Web site: http://trb.org/

                              The TRB is a unit of the National Research Council, a private, nonprofit institution whose mission is to promote innovation and progress in transportation by stimulating and conducting research, facilitating the dissemination of information, and encouraging the implementation of research results. Cooperative research programs fund research projects that seek to answer transportation problems solicited by community programs-research ideas can be directed to this agency for consideration. The TRB is funding an ongoing research project entitled "Increasing Native American Participation in Programs and Services of the Federal Transit Administration." The TRB also hosts an annual conference on transportation issues that attracts as many as 8,000 professionals from throughout the United States and abroad.

                              U.S. Department of Transportation (DOT)

                              400 7th Street SW
                              Washington, DC 20590
                              Phone: (202) 366-4000
                              Web site: www.dot.gov

                              DOT oversees the formation of national transportation policy and promotes intermodal transportation. It administers the budget authority for a number of grant programs accessible to AI/AN tribes. Several agencies under this authority such as the Federal Highway Administration also have Native American liaisons that work directly with tribes. Resources such as the toll-free Hotline to Assist Air Travelers with Disabilities (operated between the hours of 7 AM and 11 PM EST daily at 1-800-778-4838 or TTY 1-800-455-9880) have been implemented to fulfill the responsibility of DOT under ADA and other applicable legislation.

                              National Rural Transit Assistance Program (RTAP)
                              Federal Transit Administration
                              TransNet Program
                              Phone: (800) 527-8279

                              Current information on American Indian transportation issues and practices and how you can replicate them in your community is available via the TransNet service at the hotline above. This service will match you to a networker whose particular experience will be relevant (Shawn, 2002, p. 9).

                              In addition to this service, each state operates a rural transit assistance program to provide training, technical assistance, and resource information to transportation providers. The National Transit hotline may be accessed at 1-800-527-8279. It can provide you with a variety of information: answers to simple or complex questions, how to solve a transit problem, written materials, and referrals to peers with expertise in the start-up and operation of tribal transportation services (Shawn, 2002).

                              4. How do you find funding to support transportation services and programs?

                              According to the issue brief developed by the World Institute on Disability and excerpted by APRIL, in 1999, only 5 percent of transportation dollars were allocated to serve the 27 percent of the population living in rural America (including those living on tribal lands), a disproportionate number of which are disabled (Gonzales, Seekins, and Kasnitz, 1999). Clearly, identifying funding sources and completing a competitive application are challenges for many new and developing transportation systems in rural locations. Tribal programs are no exception.

                              Tribes with successful transportation programs, like those profiled above, develop a budget through a combination of funding sources: grants from multiple agencies and organizations, tribal revenue, and creative collaborations. Funds can be made available to transportation programs through federal and state agencies or as a result of legislative authority. The legislation authorizing transportation for individuals with disabilities as well as the primary agencies providing funds to programs is described below. These descriptions can serve as leads for you to follow up with and identify funding sources specific to your unique program needs.

                              Laws Addressing Transportation Rights of Individuals with Disabilities

                              Many of these descriptions are based on the references provided by the NTRC Web site Glossary. Please visitwww.ctaa.org/ntrc/glossary.asp for more information.

                              Americans with Disabilities Act (ADA): Passed by Congress in 1990, this Act mandates equal opportunities for persons with disabilities in the areas of employment, transportation, communications, and public accommodations. Under this Act, most transportation providers are obliged to purchase lift-equipped vehicles for their fixed-route services and must ensure system-wide accessibility of their demand-responsive services to persons with disabilities. Public transit providers also must supplement their fixed-route services with paratransit services for those persons unable to use fixed-route service because of their disability.

                              Transportation Act: Section 5310: The section of the Federal Transit Act that authorizes capital assistance to states for transportation programs that serve the elderly and people with disabilities. States distribute Section 5310 funds to local operators, in both rural and urban settings, who are either nonprofit organizations or the lead agencies in coordinated transportation programs.

                              Section 5311: The section of the Federal Transit Act that authorizes capital and operating assistance grants to public transit systems in areas with populations of less than 50,000.

                              Workforce Investment Act: This 1998 legislation consolidates the former Job Training Partnership Act and many other federal job training programs into state-managed block grants. This law also replaces Private Industry Councils with Workforce Investment Boards. The Act authorizes the provision of supportive services (e.g., transportation) to assist participants receiving the other services and the provision of temporary income support to enable participants to remain in training.

                              Older Americans Act: First passed in 1965, this federal law established a network of services and programs for older people. This network provides supportive services, including transportation and nutrition services and works with public and private agencies that serve the needs of older individuals.

                              Transportation Equity Act for the Twenty-first Century (TEA-21): This 1998 legislation authorizes approximately $217 billion for highways, highway safety, and mass transportation until fiscal year 2003.

                              Intermodal Surface Transportation Efficiency Act of 1991 (ISTEA): Administered by the Federal Transit Administration, this Act is the principal source of federal financial assistance for public transportation. Additional DOT funds may be available through ISTEA's flexible funding provisions, which allow states to transfer federal highway funds to transit programs for capital projects. Many states have found ISTEA to be a valuable mechanism for acquiring additional vehicles and facilities for their rural transit activities, including some American Indian transit programs (Shawn, 2002).

                              Social Security Act, Title XIX: This section of the Social Security Act describes, among others, the eligibility determination and transportation services offered by Medicaid programs for individuals with disabilities and elderly individuals with low income (see Centers for Medicare & Medicaid Services contact information on following page).

                              Funding Sources for Programs

                              Federal Transit Administration (FTA)

                              400 7th Street SW
                              Washington, DC 20590
                              Phone: (202) 366-4043
                              Fax: (202) 366-3472
                              Web site: www.fta.dot.gov/office/regional/

                              A component of the U.S. Department of Transportation that regulates and helps fund public transportation, FTA provides financial assistance for capital and operating costs and also sponsors research, training, technical assistance, and demonstration programs. FTA was created by the passage of the Urban Mass Transportation Act of 1964. In addition to the national office referenced above, 10 regional offices and 5 metro offices provide contact points.

                              Administration on Aging

                              330 Independence Avenue SW
                              Washington, DC 20201
                              Phone: (800) 677-1116 (Eldercare Locator: finds elder services in locality); (202) 619-7501 (National Aging Info Center: technical info and public inquiries); (202) 401-4541 (Office of Assistant Secretary for Aging: congressional and media inquiries)
                              Fax: (202) 260-1012
                              Web site: www.aoa.gov

                              The Administration on Aging agency within the U.S. Department of Health and Human Services oversees the implementation of the Older Americans Act, which provides funds to meet the needs of American Indian elders. Services provided under Title VI include nutrition, information, and referral and transportation services. The Area Agency on Aging is the local entity that plans senior services and advocates for the elderly within their communities, administering provisions of the Older Americans Act on this level.

                              Centers for Medicare & Medicaid Services

                              7500 Security Boulevard
                              Baltimore, MD 21244-1850
                              Phone: (410) 786-3000
                              Web site: www.hcfa.gov

                              Also known as Medical Assistance, this is a health care program for low-income and other "medically needy" persons. It is jointly funded by state and federal governments. The Medicaid program pays for transportation to nonemergency medical appointments if the recipient has no other means to travel to the appointment. Developing a local reimbursement relationship with the Medicaid program office can be an important strategy for tribes to build self-sustaining transportation systems.

                              Temporary Aid to Needy Families (TANF)

                              Administration for Children and Families
                              U.S. Department of Health and Human Services (HHS)
                              Division of Tribal Services
                              370 L'Enfant Promenade
                              Washington, DC 20447
                              Phone: (202) 401-9214
                              Web site: www.acf.dhhs.gov/programs/dts/rcontact.htm

                              Spurred on by the passage of the landmark welfare reform legislation--the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (P.L. 104-193)--TANF is a program of block grants to states to help them meet the needs of poor families. It replaces Aid to Families with Dependent Children, JOBS, Emergency Assistance, and some other preceding federal welfare programs. Because of TANF-imposed time limits, states trying to place TANF recipients in jobs as quickly as possible often use program funds to pay for transportation, child care, and removing other barriers to workforce participation.

                              Other sources of funding may include the following: Vocational rehabilitation grants; APRIL (has provided demonstration project funding for transportation projects in past); the Veterans Administration; the U.S. Department of Agriculture (agency with primary responsibility for rural economic and community development); HHS (funds a variety of human services transportation through the AOA, Head Start, Medicaid, and other programs); the Administration for Native Americans (another HHS agency with a limited amount of funding available for American Indian social and economic development activities, which can include transportation); and DOT (Shawn, 2002).

                              5. Who provides assistance with compliance?

                              When service obligations provided for by the legislation of the Federal Government are not met, certain departments field these concerns. Access to transportation services for individuals with disabilities has been established as a requirement under ADA as well as other legislation detailed above. The following contact points should be used when initial attempts to resolve a concern at the time and place of the experience are not successful.

                              The Access Board

                              1331 F Street NW, Suite 1000
                              Washington, DC 20004-1111
                              Phone: (202) 272-5434; (800) 872-2253
                              TTY/TDD: (202) 272-5449; (800) 993-2822
                              Fax: (202) 272-5447
                              E-mail: info@access-board.gov
                              Web site: www.access-board.gov

                              The Access Board is an independent federal agency devoted to clarifying standards and requirements to provide accessibility for people with disabilities. It operates with about 30 staff and a governing board of representatives from federal departments and public members appointed by the President. The Board has three key responsibilities: developing and maintaining accessibility requirements for the built environment, transit vehicles, telecommunications equipment, and electronic and information technology; providing technical assistance and training on these guidelines and standards; and enforcing accessibility standards for federally funded facilities.

                              6. What legislation on the horizon could impact transportation service funding? How do you keep informed about the impact of pending legislation on transportation in tribal communities?

                              Developing relationships with grant program administrators and working closely with state agencies and transportation organizations will go far in keeping you informed about legislation that may impact your transportation program. Because many applications are competitive and must be reapplied for annually, continuing to develop and evaluate your program, being responsive to your community's needs, and maintaining open communication lines with your grant administrators are all the more important. Maintaining a diverse funding portfolio will also help you to weather any unforeseen budget cutbacks.

                              By advocating at the state and federal levels through participation in boards, councils, associations, and related transportation organizations, you can also ensure that the needs of your community are understood by those who work to shape legislation and develop grant programs in the first place. Each year, there are opportunities to impact legislation and work for change. Sen. Max Baucus (D-Mont.) and several of his colleagues recently introduced a bill entitled the Maximum Economic Growth for America through Rural, Elderly and Disabled Transit Investment Act (MEGA RED Act). This bill seeks to improve transit service in rural areas, including for the elderly and persons with disabilities. This bill also has provisions that would positively impact tribes operating transportation systems on tribal lands.

                              References

                              Alflen, Larry. (September 24, 2002). Telephone interview by Martina Whelshula.

                              American Indian Disability Technical Assistance Center (AIDTAC). (2002). AIDTAC Resource Book. Montana: The University of Montana, Rural Institute on Disabilities.

                              American Indian Disability Technical Assistance Center (AIDTAC). (2001). A Short Guide to Developing Disability Infrastructure on Reservations. Missoula, MT: The University of Montana, Rural Institute on Disabilities.

                              Community Transportation Association of America, National Transit Resource Center. (2002). Transportation in Indian country: Getting started. Edited by Intersoft Corporation. Retrieved October 1, 2002, fromwww.ctaa.org/ntrc/ctap/pubs/tribe.asp.

                              Gonzales, Linda, Tom Seekins, and Devva Kasnitz. (1999). Taking on rural transportation. Excerpt from Issue Brief in Independent Living and Disability Policy, 1(4). World Institute on Disability. Retrieved September 25, 2002, fromhttp://april.umt.edu/Taking.htm.

                              Langwell, Kathy, and Janet Sutton. (2002). People with Disabilities on Tribal Lands: Education, Health, Rehabilitation, and Independent Living. Washington, DC: National Council on Disability.

                              National Transit Resource Center. (2002). Public and community transportation glossary. Edited by Intersoft Corporation. Retrieved September 30, 2002, from www.ctaa.org/ntrc/glossary.asp.

                              Shawn, Kelly. American Indian Transportation: Issues and Successful Models. RTAP National Transit Resource Center, Technical Assistance Brief Number 14. Edited by Intersoft Corporation. Washington, DC: Community Transportation Association of America. Retrieved October 1, 2002, from
                              www.ctaa.org/ntrc/rtap/pubs/ta/am-ind.asp.

                              Templer, Arlene. (September 10, 2002). Telephone interview by Martina Whelshula.

                              Zeilinger, Chris. (September 24, 2002). Telephone interview by Ara Walline.

                              Key Elements of Promising Programs

                              Background

                              Indian country embodies some of the most diverse cultures, communities, political structures, and natural environments the nation knows. Therefore, it stands to reason that each tribe addresses the unique circumstances of tribal members with disabilities in very different ways. The project task was to find those tribes in the nation that demonstrated leadership in creating awareness, developing programs, adopting tribal laws, and meeting the needs of its tribal members with disabilities. Leaders and advocates in the Indian country disability movement recommended tribes that best exemplified successful practices. Of the 16 tribes recommended, 10 were selected for follow-up interviews.

                              The interview questions addressed tribal government support through the development of disability laws, support services, major barriers for people with disabilities, access and barriers to health care, children with disabilities being treated differently, available employment services through the tribe, and what types of information or resources would be helpful to tribes. The responses by tribal programs were overwhelmingly positive, producing a wealth of information and wisdom.

                              Throughout the interviews, certain themes emerged that reached across each tribe. These themes appeared to be the key elements of success for their programs. This rich information is to be shared with all tribal communities desiring to improve their tribal community environment for members with disabilities. The following section summarizes key elements for these promising practices in tribal communities.

                              Leadership

                              In the course of interviewing the tribes, it became increasingly evident that the program took on the qualities and characteristics of its leadership. Common elements shared by each program director were as follows:

                              • Passion
                              • Each of the program directors demonstrated this trait in shared thoughts and action. Their passion was conveyed not only through descriptions of their program and the services delivered, but in the difficulties many programs transcended over time.

                                 

                              • Perseverance
                              • In the face of many challenges and obstacles, the program leaders' belief in their work helped individuals to keep moving and fighting for changes when the task seemed almost impossible.

                                 

                              • Vision
                              • Each program leader believed in the possibilities for change in their tribal communities and seemed to have mental pictures and plans demonstrated by the many unique and innovative approaches to addressing the huge gaps in services for tribal members with disabilities.

                                 

                              • Commitment
                              • The majority of program leaders had worked in their program for several years; they were determined to create change to improve the quality of life and services for tribal members with disabilities.

                                 

                              • Change Agents
                              • These program leaders pushed for creative and different ways of doing things that sometimes made them unpopular with others who favored the status quo.

                                 

                              • Consistency
                              • Program leaders who stayed with their programs for many years provided a sense of reliability, stability, and consistency. The element of consistency nurtured the slow process of growth and occurred in ways that build upon the many lessons learned through the years.

                                 

                              • Connection to Consumer
                              • These program leaders strive to know their consumers despite some complex circumstances and multiple variables surrounding programs.

                                 

                              • Agents of Hope
                              • Many of the conditions surrounding the whole issue of disabilities in Indian country are severe enough to leave consumers and advocates feeling a sense of hopelessness. Some program leaders have described the bleak realities of tribal members with disabilities. In the face of some very real and despairing conditions, these program leaders try to embody a positive sense of hope, inspiring consumers to hang in there; change is coming.

                                 

                              Most program leaders will tell you that they hold only one part of the total effort needed to improve the quality of life for tribal members with disabilities. The leaders described the many people who have given so much to the success of the services. Humility was evident as these leaders expressed excitement in how segments of their tribal community fought long and hard for change that resulted in improvements. When they speak of success, they do not speak solely in terms of a personal success; rather, they speak of success in terms of a collective effort by other community members who have expressed their own passion in the work.

                              Leadership Characteristics

                              A program leader who embodies the qualities and characteristics of passion, perseverance, vision, commitment, change, consistency, and connection, and who is seen as an agent of hope, can influence the success of a program greatly.

                              Responsiveness to the Needs of the Consumer

                              Successful programs require staff to know their consumers well. This requires moving beyond the initial identification of consumer needs to the development of personal relationships with consumers in order to truly understand the realities experienced by tribal members with disabilities. These programs tailor their services around the unique needs presented in each tribal community and around each consumer.

                              Innovation in Removing Barriers

                              "Necessity is the mother of invention" is a phrase that exemplifies the motivation behind many innovative programs throughout Indian country. The personal diligence and leadership of individuals with disabilities and/or their family members have helped to reshape tribal communities and create more awareness, break down barriers, and push for expanded services and advocacy. Through their advocacy, tribal programs have realigned programs to create seamless services and more comprehensive support.

                              Effective Collaboration

                              A key factor for a successful program rests in the program's ability to effectively collaborate between agencies, programs, and funding sources. Those programs whose staff have extensive knowledge and awareness of other programs and services were able to develop the most comprehensive and innovative programs. All 10 of these tribes have demonstrated how their creative collaborations increased the success of their programs in serving tribal members with disabilities.

                              Advocacy Strength

                              Advocacy is another key program success factor. Advocacy seems to be an inherent process of the work in Indian country. It is a primary source of support for tribal members with disabilities who don't know how to or can't advocate for themselves. Advocacy comes in many forms and is multidimensional. It is evident from the many voices of program leaders that it is essential to successfully serve people with disabilities.

                              Support from Tribal Leadership

                              Every tribal program included in this report noted that tribal leader support was an important factor in the success of the program. However, tribal leader support looked very different from tribe to tribe. Although not all tribes have laws protecting the rights of tribal members with disabilities, some have personnel policies and procedures, while other programs feel supported by their tribal leadership in some way.

                              Conclusion

                              Combinations of the elements identified from promising practices observed in existing programs seem to be aligned with comments by tribal leader Chief Joseph, Nez Perce: "The earth is the Mother of all people, and all people should have equal rights on it." In the development of local policies, processes, and programming to serve and protect the rights of tribal members with disabilities, the power of collaboration and overarching awareness of local tribal culture must be considered. Unless programs are culturally responsive, consumers will not patronize the services offered. Knowing the consumer through meaningful inclusion in planning and hiring and risking innovation in an attempt to design a program that fits consumer needs rather than making the consumer fit the program design are also critical for success. Combined support from tribal leadership, committed and culturally responsive program staff, and positive results for people with disabilities in Indian country can enhance their empowerment.