UNDERSTANDING DISABILITIES IN AMERICAN INDIAN AND ALASKA NATIVE COMMUNITIES:
TOOLKIT GUIDE August 1, 2003
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
This
report is also available in alternative formats and on NCD's award-winning
Web site at www.ncd.gov
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
Independent Living
Vocational Rehabilitation and Employment Resources
Assistive Technology
Background
Model Approaches
ASSIST! to Independence
Native American Advocacy Project (NAAP)
Resources
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
Background
Barriers to Service
The Basics of Universal Design
Assessing Service Needs
Model Approaches
Making Plans a Reality
Frequently Asked Questions
References
Transportation
Background
Barriers to Service
Assessing Service Needs
Definitions
Model Approaches
Pueblo of the Zuni
Confederated Salish and Kootenai Tribes
Other Programs
Making Plans a Reality
Frequently Asked Questions
References
Key Elements of Promising Programs
Background
Leadership
Leadership Characteristics
Responsiveness to the Needs of the Consumer
Innovation in Removing Barriers
Effective Collaboration
Advocacy Strength
Support from Tribal Leadership
Conclusion
Advocating Change
Self-Advocacy
Self-Advocacy.What Is It?
Giving Voice to Your Life Choices
Speaking Up About Services
Step 1: Targeting
Step 2: Preparing
Step 3: Influencing
Step 4: Following Through
What Would You Do As a Self-Advocate?
GuidelinNational Initiatives, Federal Agencies, and National Organizations
153es for Writing a Resolution
Purpose of Submitting a Resolution
Resolution Format
Sample Resolutions
References
Federal Disability Laws and Tribes
Background
Understanding Government-to-Government Relationships
The Americans with Disabilities Act (ADA)
and Tribes
The Rehabilitation Act and Tribes
The Individuals with Disabilities Education Act (IDEA) and Tribes
Advocacy
References
Disability Etiquette Handbook
Dos and Don'ts
Conversation Etiquette
Glossary of Acceptable Terms
Preparing for Sign Language Interpreters
Resources Regarding Interpreters
Service Animals
What Is a Service Animal?
Service Animal Access
Service Animal Etiquette
Service Animal Resources
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:
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
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