The Arizona resource book on persons with developmental disabilities

              College of Human Services
IN COLLABORATION WITH
The Arizona Drug and Gang Prevention Resource Center
The Arizona Community Foundation
The Governor’s Council on Developmental Disabilities
The Arizona
Resource Book
on Persons with
Developmental
Disabilities
1
TABLE OF CONTENTS
ACKNOWLEDGMENTS 3
INTRODUCTION 4
Purpose and Scope 4
Developmental Disabilities: Defined 5
Resources 6
HISTORICAL PERSPECTIVE 9
Introduction 9
Condensed History of Developmental Disabilities 10
Evolution of the Service System in Arizona 12
STATEWIDE DEMOGRAPHICS 14
Number of Individuals and Status 15
Member Eligibility 15
Age Ranges 15
Documented Disabilities 15
Ethnicity 16
Placement Information 16
Residential Living Situation 17
Performance Survey 17
HOUSING 19
Accessibility 20
Affordability 20
Housing Discrimination 20
“NIMBY” 20
The Right to Fair Housing 21
General Information on Housing Opportunities 22
EMPLOYMENT 23
High Unemployment Rates 24
Employment Gaps 24
What’s Working? 25
EDUCATION AND TRANSITION 29
Arizona Educational Reform 29
ADE/ESS State Improvement Plan 31
Special Education Personnel Needs 34
School to Work Transition Program 34
Advocacy Efforts 36
2
SOCIAL DEVELOPMENT: SELF-DETERMINATION/QUALITY OF LIFE 38
Empowered Lifestyles 38
Areas of Empowerment 39
Programs of Self-Determination 40
Maximizing Potential Through Early Intervention 44
HEALTH CARE 46
ALTCS 46
Implications for Public Policy 46
IMPLICATIONS FOR THE FUTURE 48
Self-Determination 48
Housing 48
Employment 48
Education and Transition 48
Health Care 49
Conclusion 50
3
ACKNOWLEDGMENTS
As with the Arizona Fact Books produced by Arizona State University West’s Partnership for Community
Development, the intent of this volume, The Arizona Resource Book on Persons with Developmental
Disabilities, is to provide a tool for policy makers and service providers. The Resource Book’s aims are
not to advocate for particular programs or political agendas, but to present data and other information to
inform decisions related to the provision of programs and to serve as a reference for public and
community-based organizations. By intention, this book is not an exhaustive discussion of the status of
people with developmental disabilities, but rather a presentation of data and issues that are arranged as a
“snapshot” of the many facets of an increasingly complex matter. In some areas, data were difficult, if not
impossible, to secure and, in other areas, there is much more information than could be responsibly
presented within the purpose and scope of this book.
I am appreciative of the contributions of Mr. Wayne Tormala who researched, compiled, and developed
this volume. Ms. Denise Labrecque, Coordinator of Education & Outreach, ASU West Disability
Resource Center, and Professor Jane Williams, ASU West College of Education, provided invaluable
suggestions for content as well as editing assistance. Dr. Mark Searle, Dean of the College of Human
Services, ASU West, supported this undertaking in numerous ways. In addition, Ms. Maria Palacios,
Ms. Christine Foster, Ms. Mary Flores, and Ms. Lisa Iampaglia of the College of Human Services
contributed to the development of this book. Mr. Geoffrey Boyarsky provided design, production,
and layout preparation.
I also wish to acknowledge the following people who unselfishly provided their time and resources to
assist in the compilation of this book: Andrea Childs and Caroline Chaplain, DES/DDD; Susan Madison,
Jami Snyder and Patricia Serlin-Freedle, Governor’s Council on Developmental Disabilities; Leslie
Cohen, Arizona Center for Disability Law; Rich Carroll, Institute for Human Development; Skip
Bingham, Linda Berg and Jozef de Groot, DES/RSA; Edna and Keith Bonham, People First; and Molly
Dries, AzEIP.
In addition to the individuals who worked to develop and produce The Arizona Resource Book on Persons
with Developmental Disabilities, it is important to recognize the support of its sponsors. The Arizona
Drug and Gang Prevention Resource Center, the Arizona Community Foundation, and the Governor’s
Council on Developmental Disabilities provided funding and support that made the development of this
volume possible and I am grateful for the value to the State of Arizona they saw in producing a volume of
this nature.
John Hultsman, Re.D.
Director, Partnership for Community Development
College of Human Services
Arizona State University West
June, 2000
4
Introduction
There are over 750 million people in the world today who are living with a disability. The number of
disabled people in the world is three times the population of the United States. According to the
Governor’s Council on Developmental Disabilities, there are approximately 83,000 developmentally
disabled people in Arizona.
Many disabilities are highly visible, and many others are not. For most of history, people with visible
disabilities were often viewed as “cast-aways,” and quickly shuffled off to places where they were “safe”
from others. Fortunately, with the support of people with disabilities, their families, community members,
advocates, service providers in the public and private sector, and concerned policy makers, the focus of
care has evolved from protectionism to self-determination. In similar fashion, to maximize the extent to
which care environments are supportive of this movement, the preferred setting has generally moved
from institutionalization to independent living.
Purpose and Scope
The purpose of this book is to provide practical, easy-to-understand information for people who must
make important choices about the quality of life of individuals with disabilities. As such, this book was
created to assist people in their decision-making. This includes those who must make a personal choice
about seeking help, a professional choice about identifying resources, or a political choice about
advocating for responsible legislation and funding.
This book uses statistical information when it is pertinent to the discussion. However, it is important to
note that an emphasis has been placed on discussing those areas that are most critical to maximizing the
quality of life and level of self-sufficiency for anyone with a disability. Thus, at times the reader is
referred to sources where more statistical information can be found.
The areas to be discussed in this book are as follows:
• Historical Perspective
• Statewide Demographics
• Housing
• Employment
• Education and Transition
• Health Care
• Social Development: Self-Determination and the Quality of Life
• Implications for the Future
These categories were developed on the basis of discussions with noted experts in the field, and although
not exhaustive, are viewed as the core areas that are key to any study of developmental disabilities. As
such, it is hoped that this book portrays a snapshot of the status of people with disabilities that is
comprehensive, yet “reader-friendly.” In some instances, sources for additional information are listed.
5
Developmental Disabilities: Defined
The word “disability” means different things to different people. While some view the word as having
medical implications, others associate it with an array of difficulties in performing everyday tasks. In fact,
all of us can experience a disability when we attempt to perform certain functions within the context of
specific environments, and especially when those environments are unfamiliar and/or non-supportive.
While this insight leads to better understanding and improved communication relative to the disabilities of
others, there remains a need to further define the word if we are to discern the specific needs of persons
with developmental disabilities.
The Federal Government (Developmental Disabilities Assistance and Bill of Rights Act of 1990, Public
law 101-496, Section 102) defines “developmental disability” as:
A severe, chronic disability of an individual five years of age or older that:
• is attributable to a mental or physical impairment or a combination of mental
and physical impairments;
• is manifested before the individual attains age 22;
• is likely to continue indefinitely;
• results in substantial functional limitations in three or more of the following areas of
major life activity:
• self-care
• receptive and expressive language
• learning
• mobility
• self-direction
• capacity for independent living
• capacity for economic self-sufficiency
• reflects the individual’s need for a combination and sequence of special, interdisciplinary or
generic services, supports, or other assistance that are lifelong or of extended duration and are
individually planned and coordinated, except that such term when applied to infants and young
children means individuals from birth to age five, inclusive, who have substantial delay or specific
congenital or acquired conditions with a high probability of resulting in developmental disabilities if
services are not provided.
Although the Governor’s Council on Developmental Disabilities uses the federal definition (because it is
funded with federal dollars), the State of Arizona employs a different definition of developmental
disabilities. The Arizona Department of Economic Security, Division of Developmental Disabilities,
defines developmental disability as a chronic disability attributable to mental retardation, cerebral palsy,
epilepsy, or autism. The disability must be manifested before the age of eighteen and result in substantial
function limitations in three or more of the seven areas of major life activity that are listed above in the
federal definition. Also similar to the federal definition, the state requires that the disability reflect the
need for a combination and sequence of special services that are lifelong or of extended duration. Under
the state definition, children below the age of six years may be eligible for services if there is a strongly
demonstrated potential that the child is, or will become, developmentally disabled.
6
For the purposes of this book, unless otherwise noted the reference point for defining developmental
disabilities is the State of Arizona definition.
Resources
There is a wide range of services provided by agencies and individuals throughout Arizona. Most of these
services are available to persons who are eligible as defined by the Arizona Department of Economic
Security/Division of Developmental Disabilities (see above), and address the identified needs of
individuals and families across three major categories: day programs, home and community-based
services, and residential programs. In addition, there are generally three major service methodologies that
are employed in each area of need: information and referral, direct services (e.g., case management, home
health, therapies), and advocacy. There are numerous service providers in each category, and it is beyond
the scope of this book to identify them.
However, it is pertinent to briefly discuss two major resources, which bear heavily on the planning and
funding of developmental disability services. They are:
• Arizona Department of Economic Security/Division of Developmental Disabilities; and
• Governor’s Council on Developmental Disabilities.
The Arizona Department of Economic Security/Division of Developmental Disabilities (DES/DDD),
as authorized by state law, is responsible for providing services and programs to individuals with
developmental disabilities. DES/DDD has developed an array of needs-based services that are generally
provided through contracts with individuals and agencies. As such, services are available to eligible
individuals within state and/or federal guidelines, and according to the availability of funds.
DES/DDD, in partnership with individuals with developmental disabilities, their families, advocates, and
community-based providers, seeks to develop and support environments which enable people to achieve
and maintain physical well-being, personal and professional satisfaction, participation as family and
community members, and safety from abuse and exploitation. Services generally include four major
categories:
Support coordination, in which individuals receive help from a support coordinator in determining
eligibility, assessing needs, obtaining appropriate services, and locating community resources;
Home and community-based services, which promote and enhance the abilities of individuals to live
either alone, with their family, or with others;
Institutional services, which include Intermediate Care Facilities for the Mentally Retarded and Nursing
Facilities; and
Medical services, which are provided to ALTCS eligible children and adults to help them maintain
optimal health. ALTCS (Arizona Long Term Care System) is a federally funded Medicaid research and
demonstration program.
7
The Governor’s Council on Developmental Disabilities works for the benefit of people with disabilities
and their families, friends, employers, and schools. Supported by six advisory councils, the Governor’s
Council seeks to build partnerships, increase understanding, create opportunities, provide services, banish
misconceptions, and change public policy with regard to people with developmental disabilities. In short,
the purpose of the Governor’s Council is to help Arizonans with developmental disabilities achieve
greater independence, productivity, integration and inclusion in all aspects of community life.
The Governor’s Council plans and advocates on behalf of individuals with developmental disabilities by
monitoring current services, identifying unmet needs and gaps in services, and developing plans to address
those needs. The Council implements its activities through annual contracts with six regional district
councils located throughout the state. The district councils provide local developmentally disabled
citizens with advocacy, information regarding services, and referrals to needed services.
The Council’s current plan identifies four major goal areas, as follows:
Self-determination, to actively support the participation and leadership of persons with disabilities and
their families in advocacy initiative;
Employment, to identify and implement strategies to assist individuals with disabilities to become
employed;
Special education, to promote free appropriate public education for all students with disabilities; and
Family support, to assist state service systems in becoming family-friendly and family/consumer driven.
For additional information on the services and activities of DES/DDD or the Governor’s Council on
Developmental Disabilities:
DES/DDD Central Office
1789 W. Jefferson
Site Code 791A
P.O. Box 6123
Phoenix, AZ 85005-6123
602-542-0419
Governor’s Council on Developmental
Disabilities
1717 W. Jefferson
Site Code 074Z
Phoenix, AZ 85007
602-542-4049
8
References
Developmental Disabilities Assistance and Bill of Rights Act of 1990
Public Law 101-496, Section 102
Arizona Revised Statutes 36-551
The Governor’s Council on Developmental Disabilities
State Plan: 1998-2000
9
Historical Perspective
Introduction
This historical perspective is not intended to be a thorough account of the status of developmental
disabilities throughout the ages, but rather a condensed narrative of the perspectives, influences, and
progress achieved over the last 200 years.
Throughout history there has been evidence of people with developmental disabilities. In those cases
when they were unknown to the public, they were often thought of as “eccentric” or “different” at best,
and as “idiots” and “freakish” at worst. In those cases where people with developmental disabilities were
known, or even famous, they were often regarded as “genius” or “unique.” In fact, many famous people
throughout history are now known to have had developmental disabilities.
To cite just a few of the hundreds of examples:
• The composers Ludwig van Beethoven and Amadeus Mozart, and inventors Leonardo da Vinci and
Benjamin Franklin had attention deficit disorder (ADD).
• Charles Dickens, Julius Caesar, and Vincent Van Gogh had epilepsy.
• Albert Einstein, Thomas Edison, and Winston Churchill were dyslexic.
• Both Beethoven and the famous Spanish artist Goya were deaf.
The famous people noted above are just a few of the many great and famous disabled people in the world.
In their success and creative geniuses, they have shown others that people with disabilities can achieve
great things. These stories are truly inspirational, and while too often the world of developmental
disabilities has been viewed through distorted lenses, they have influenced the progressive movement of
attitudes and programs over the years.
While much progress has been made over the past several years, it is clear that there continues to be an
urgent need for increased public awareness of the many issues facing people with developmental
disabilities. Public attitudes shape public policies. And while there is clear evidence that public attitudes
and corresponding changes in service philosophies and funding levels have expanded over the years, there
is also testimony to the incidence of persons with developmental disabilities being stigmatized, and in the
worst scenarios, being victimized by those who act on the basis of misinformation and who still cling to
derogatory labels.
The condensed history, which follows, is intended to demonstrate the major highlights of the past two
centuries. As such, it will hopefully serve as a mirror for viewing how our country has responded to those
citizens who have developmental disabilities, and how this is further exemplified in the history of services
here in Arizona.
10
A Condensed History of Developmental Disabilities
A brief outline of the history of the treatment of people with developmental disabilities follows:
• In the early 1800s the condition of the “idiot” began to attract caregivers and medical researchers in
Paris. This led to the first school designed specifically for people with disabilities in Paris in 1838,
and represented the first major effort to “humanize” the treatment of people with developmental
disabilities.
• By the mid-1800s, the first institutions in the United States were built. Designed to protect people
with disabilities from exploitation and abuse, they were established as boarding schools and were
generally located in remote, pastoral settings. Again, with the help of vocal leaders in the field, there
were signs that the public perspective was beginning to shift. In 1843, Dorothea Dix addressed the
Massachusetts Legislature by advocating against the inhumane treatment in prisons and asylums of
“helpless, forgotten, insane.....men and women.” In 1848, Samuel Gridley Howe established an
experimental school in Boston for the purpose of testing the capacity of people with disabilities for
instruction. This was soon followed by the creation of numerous schools across the country, as 24
institutions were in operation in the United Stated by 1888. This marked the beginning of a major
shift in the societal treatment of people with disabilities from the asylum to the “special school”
environment.
• In the late 1800s the remarkable progress of the mid-century took a dramatic turn for the worse as the
emphasis changed from “making the deviant undeviant,” to “sheltering the deviant from society,” to
“protecting society from the deviant.” By 1900, persons who were mentally retarded were viewed as a
menace, and laws forbidding marriage were passed in several states. Medical studies at the time
concluded that “social diseases” were inherited, and thus nothing could be done to keep society safe
from people living in the institutions, except to pass legislation permitting or even mandating
sterilization and permanent custodial care. As such, segregation and sterilization characterized the
first half of the 20th Century.
• As World War II approached Nazi Germany passed the Act for the Prevention of Hereditarily
Diseased Offspring. As a result, there were massive sterilizations and “mercy” killings of people
viewed as “mentally defective,” “deformed” and “incurable.” It is estimated that over 100,000
persons with mental retardation were systematically exterminated.
• By the mid-1940s the movement away from the institutional model began. Although still holding to a
custodial care model, many families were beginning to keep their children at home. Buoyed by
positive studies of persons leaving state institutions and exposes of the effects of “warehousing,”
institutional discharges were increasing.
• The 1950s and 60s witnessed a dramatic increase in the advocacy movement. As families became
concerned about the lack of community resources and alternatives to institutional care, there
was a burgeoning of grassroots development for better educational and vocational
opportunities. As a result, specialized schools and vocational workshops began to spring up
11
throughout the United States, and the National Association for Retarded Children (now known as the
Association for Retarded Citizens) was formed.
• By the 1970s, largely as an outcome of the Civil Rights Movement and a landmark court
decision in Kansas (Brown vs. The Board of Education), the issue of inequitable access to
quality education was placed as a national priority. Although this case focussed on racial
segregation, it was later used in successful arguments for the right to free and appropriate education in
the least restrictive environment for all handicapped children.
• Also in the early 70s, the Scandinavian principle of “normalization” came to the U.S., where it
became the major philosophical foundation of the development of services to people with
developmental disabilities for the next twenty years. Briefly stated, “normalization” refers to the
principle that the patterns and conditions of everyday life (i.e., normal routines of life) for persons
with developmental disabilities should be as close as possible to the norms and patterns of the
mainstream of society.
• Not surprisingly, the 1970s became known as the “age of litigation,” as court decisions in support of
the right to education and treatment paved the way for further deinstitutionalization and
mainstreaming of people with developmental disabilities. In 1971, the landmark “Right to
Education” court decision in Pennsylvania became a model for many states to push for the educational
rights of school age children. This eventually led to the passage of Public Law 94-142 in 1973,
which mandated the right to a free and appropriate education for all handicapped school age
children in the least restrictive environment.
• Over the next decade more than 23 states passed “right to treatment” laws, which were based on the
common commitment that no citizen could have their liberty restricted or denied without cause or due
process of law. Since persons with disabilities who were committed to state institutions had
clearly had their liberties denied, and had not broken any laws, states were obligated to provide
the treatment necessary for regaining their liberty. These obligations brought about massive
institutional reform, which was evident in such vital areas as:
• implementation of training and skill development programs;
• facility alterations (less restrictive settings);
• decreased use of physical and medicinal restraints;
• improved staffing levels;
• individualized program plans; and
• protocols for investigating and enforcing complaints of neglect and abuse.
• While the initial thrust of litigation was focussed on institutional reform, the emphasis soon shifted
to the development of community support alternatives so that persons with developmental
disabilities could live and learn within the context of the family, work and community
environment. This led to a movement to group homes, sheltered workshops, special community-based
schools and other training and development alternatives across the country. This movement has
endured until present time, as home and community-based services and family support initiatives have
continued to mark the developmental disability landscape since the 1970s.
• Perhaps the largest movement in the United States during the 1980s and 90s was seen in the self-advocacy
movement, whereby people with disabilities spoke out for themselves and exercised a
12
major “voice” in the direction of their own lives. Building on the earlier Swedish movement for
self advocacy, and embodied in the founding of the People First movement, this movement remains
strong, and has empowered thousands of people in achieving a higher sense of self-esteem and skill
development, and has created a ground swell of public awareness that persons with developmental
disabilities fulfill roles in society that are both valued and highly productive.
• On a parallel course with the self-advocacy movement, there has been a strong movement that
emphasizes family participation in decisions regarding the evaluation, treatment and life planning for
their children. The family-centered movement has shifted much of these decisions away from the
professionals and funding agencies, and placed more value and responsibility on the family.
Concurrently, there has been a movement away from group homes and sheltered workshops, with
increased emphasis on neighborhood schools, real employment, independent living, and total
integration into the local community of friends and neighbors. Beyond merely being a member of the
community, the focus is on enabling persons with developmental disabilities to be an active, viable
part of the community. Of major importance, significant streams of federal funds now flow to the
community, and not just the institutions.
Evolution of the Service System in Arizona
1952 - 1975: Institutional Services
This era was characterized by educational, vocational, preschool and health services being provided
almost entirely within institutions. Institutional programs were built in Coolidge, Tucson, and Phoenix,
and plans for institutions were initiated in Flagstaff and Yuma.
• Arizona Children’s Colony, now known as the Arizona Training Program at Coolidge, was build
in 1952. Starting with a capacity of 350 residents, the population grew to 1,200 in 1969, and now
maintains an ongoing census of about 145 residents.
• The Arizona Training Program was built in Tucson in 1970, starting out with a capacity of 200. It
closed in 1997.
• The Arizona Training Program at Phoenix, built in 1973, began with a capacity of 145, and later
closed in 1988.
1976 - 1985: Community Based Services
On a parallel track with the national movement of deinstitutionalization, this era witnessed several
benchmarks of increasing community responsibility, including:
• more than 250 group homes were developed;
• public schools were mandated to provide special education;
• integrated preschools were developed;
• vocational opportunities expanded to include work stations and supported employment;
• a comprehensive case management system was implemented; and
• “normalization” principles were increasingly visible as the core value in service delivery.
1986 - present: Family and Individual Support Services
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For the past decade and a half, the major advances in the service delivery system can be found in the
increased advocacy for family and individual empowerment, as evidenced in the following:
• increased community input calling for systems changes;
• legislative emphasis on family support;
• major programmatic themes of DES/DDD on strengthening the family;
• decreased resources being allocated to costly out-of-home placement;
• involvement of individuals being required in decision-making;
• introduction of the person-centered planning system;
• pilot projects on community-supported living;
• increased Title XIX funding for individualized services; and
• building consensus of core values among funders, providers, and people with developmental
disabilities.
Today, there continues to be a need for increased public awareness of the many facets of developmental
disabilities. There are still too many people who cling to negative biases toward people with
developmental disabilities; there remains a need to increase the funding levels of critical gaps in services;
and there is still a strong call to advocate for public policy, which upholds the self-determination of
individuals and families.
However, there is also a sustained momentum that promotes a better future. There is an evolving
consensus on what constitutes a quality of life for people with developmental disabilities, and it is the
same list of desires that all people have:
• personal choice in making life decisions (e.g., jobs, friends, leisure, housing);
• control of relationships, finances, and services;
• permanent liberty to live in a community;
• protection from harm and stigma;
• freedom of movement;
• opportunity for financial success;
• sense of personal dignity and respected status;
• healthy relationships with friends, family and partners;
• recognition of abilities;
• privacy of personal matters and living space;
• authentic participation in community matters; and
• passionate advocacy of human rights and life’s dreams.
References
History of Treatment of Persons with Mental Retardation, prepared by Lyn Rucker, DES/DDD, 1990
Disable Hotline: http://www.delphi.com/disable/famous.html
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Statewide Demographics
It is often difficult to provide accurate counts that reflect the true population of people with disabilities.
This is due to the fact that different definitions of disabilities are used by different sources, and that
usually reports are limited to only those persons who have received services.
For example, according to the Governor’s Council on Developmental Disabilities, there are approximately
83,000 developmentally disabled people in Arizona; the Census Bureau counts people with disabilities as
those persons with any limitations in mobility and/or self-care (169,259 people); and the DES/DDD
Management Report of September, 1999 indicated that there are 17,591 individuals who are eligible for
services (including 228 persons who had applied and were waiting for eligibility determination).
For the purposes of this book, the statewide demographics of people with disabilities will focus on
persons who are receiving services for developmental disabilities. However, it remains instructive to see
that similar patterns are found across different sources.
According to the 1990 Census of Population and Housing, Arizona residents reported the following:
• 58,909 people had only a mobility limitation;
• 62,838 people had only a self-care limitation; and
• 47,512 people had both a mobility and self-care limitation.
The majority of the people with disabilities lived in the urban settings of Maricopa and Pima counties, as
they accounted for a combined population of 120,482, or 71.2 per cent of Arizonans with mobility and/or
self-care limitations. A total breakdown of the full census figures relative to disabilities follows:
County Mobility Self-Care Both Total Percent
Apache 831 4,358 1,673 6,862 4.1%
Cochise 1,545 1,318 1,309 4,172 2.5%
Coconino 947 2,374 1,094 4,415 2.7%
Gila 878 1,285 675 2,838 1.7%
Graham 506 591 376 1,473 0.9%
Greenlee 77 50 79 206 0.1%
La Paz 248 397 349 994 0.6%
Maricopa 32,334 32,016 24,608 88,958 52.6%
Mohave 1,559 1,898 1,620 5,077 3.0%
Navajo 1,062 3,235 1,286 5,583 3.3%
Pima 12,496 9,422 9,606 31,524 18.6%
Pinal 2,324 1,423 1,699 5,446 3.2%
Santa Cruz 239 879 324 1,442 0.9%
Yavapai 2,456 1,377 1,641 5,474 3.2%
Yuma 1,407 2,215 1,173 4,795 2.8%
Totals 58,909 62,838 47,512 169,259 100%
15
According to the Institute for Human Development, in 1993 Arizona ranked 31st for persons per 1,000
with mobility or self-care limitations, 37th for persons per 1,000 with a severe work disability, and 18th
for persons per 1,000 with major activity limitations.
The following statewide demographic information was reported in the DES/DDD Management
Report of September 30, 1999:
Number of Individuals and Status:
Eligibility Status Total
Eligible “Open” for DDD Services 17,363
Eligibility Pending 228
Total 17,591
Member Eligibility of Open Individuals:
Membership Total Percent
ALTCS 10,422 60%
DDD 6,941 40%
Total 17,363
Age Range of Open Individuals:
Age Range Total Percent
0 – 3 2,070 12%
3 – 6 2,510 14%
6 – 18 5,064 29%
18 – 21 910 5%
21 – 55 6,207 36%
55 and over 602 4%
Total 17,363
Documented Disabilities for Open Individuals:
Disability Total Percent
At Risk 5,184 30%
Autistic 840 5%
Cerebral Palsy 2,140 12%
Epilepsy 1,250 7%
Mental Retardation 7,949 46%
Total 17,363
16
Ethnicity of Open Individuals By Age:
Age Asian Black Caucasian Hispanic Native
American
Unknown Total %
0-3 26 97 967 722 197 61 2,070 12%
3-6 22 138 1,301 750 242 57 2,510 14%
6-18 51 282 2,771 1,319 555 86 5,064 29%
18-21 12 40 553 213 84 8 910 5%
21-55 59 294 4,056 1,279 488 31 6,207 36%
55+ 3 27 416 118 37 1 602 4%
Totals 173 878 10,064 4,401 1,603 244 17,363
1% 5% 58% 25% 9% 2%
Placement Information of Open Individuals:
Placement DD ALTCS* Total %
Home 2,020 6,637 8,657 50%
Institution 3 132 135 1%
Adult Development Home 45 254 299 2%
Group Home 210 1,863 2,073 12%
Case Management 4,663 1,536 6,199 35%
Totals 6,941 10,422 17,363
40% 60%
*DES/DDD participates in the Arizona Long Term Care System (ALTCS), a research and
demonstration program emphasizing home and community-based services and medical care within a
capitated, managed care approach. Eligibility for ALTCS is determined by the Arizona Health Care
Cost Containment System (AHCCCS) on the basis of financial and medical/functional criteria.
17
Residential Living Situation of Open Individuals: (According to DES/DDD, Arizona ranks 6th
nationally in the number of people served in home and community-based settings per 100,000 of the
general population.)
Living Situation DD ALTCS* Total %
Individually Designed Living 61 98 159 1%
Family Home 6,576 7,868 14,444 83%
Child Development Foster Home 46 185 231 1%
Adult Development Foster Home 14 130 144 1%
Group Home 205 1,641 1,846 11%
Skilled Nursing Facility 0 78 78 1%
Residential Treatment Center 1 1 2 0%
Transitional Group Home 0 3 3 0%
Nursing Support Setting 0 31 31 1%
Habilitation – No Room & Board 35 328 363 2%
Room & Board – No Habilitation 1 6 7 0%
Totals 6,941 10,422 17,363
40% 60%
Performance Survey
In providing support and services for more than 17,000 individuals per year, DES/DDD contracts with
over 250 agencies, 600 group homes, and more that 1,750 individual providers. To assess performance
levels, DES/DDD recently conducted a survey of 552 consumers of services for developmental
disabilities. The following results were obtained:
82% had a physical examination in the last year.
66% had a dental examination in the last year.
52% of the women had a gynecological examination in the last year.
The average weekly wage was $49.31.
56% liked living in their home.
45% reported they could be alone when they desired.
45% stated they had their rights explained to them.
38% reported they had friends they liked to socialize with.
28% said they felt lonely in the last month.
58% had received assistance in learning new things they regarded as important.
11% reported they chose where they live.
32% chose their daily and weekly schedules.
12% chose whom they live with.
36% of family members had received information about services and supports.
27% of families chose their service provider.
57% of families felt the supports received reflected family needs.
58% of families felt they were getting the support they needed.
18
References
Arizona Department of Economic Security: DDD Management Report, Statewide Totals as of 9/30/99.
19
Housing
���The Woman Who Wouldn’t Give Up”
More than once, they had almost given up. After looking for a home of their own for more than four years,
and not finding one that served their needs, or one they could afford, Alice and her family were ready to
give up. Then one day, Alice attended a Home Fair in Phoenix and picked up a booklet from the
Governor’s Council on Developmental Disabilities. The headline read: “If you’ve ever wanted to have a
home of your own....we can help you open the door!”
For the first time, Alice had hope. She called the Governor’s Office, who put her in touch with
Community Housing Resources of Arizona (CHRA). She met with CHRA staff and explained that she
wanted a home for her family that could accommodate their special needs. Her son Shane had been born
with Spina Bifida, and needed wheelchair accessibility and freedom of movement with his crutches. This
is when she learned about the “Home of Your Own” program. To her great surprise, Alice qualified for
the program, which provides for loans well below the market rates. This meant Alice and Shane could
now afford the home they needed.
Even though the loan was approved, barriers still loomed. It was difficult to find the right home, in a
suitable neighborhood, and some realtors were reluctant to tackle the project. But finally a realtor
stepped forward, and after looking at many homes, Alice and Shane found the home of their dreams. With
plenty of room to accommodate Shane’s special needs, and with a monthly mortgage payment within their
financial ability, he and his mother were able to conquer the two major barriers that many people with
developmental disabilities encounter: physical accessibility and financial affordability.
And while there was still considerable work to be done to achieve maximum accessibility and comfort, the
“Home of Your Own” Program, Bank ONE, and friends continued to support them until they realized
their dream. They now live in close proximity to support services, schools and work, and Shane has
become active in community activities. When all appeared so dim and distant, Alice never gave up. She
found support in her friends and a program designed to address her needs, and persevered until their
dream came true.
(Note: The Arizona “Home of Your Own” Program is supported by the Governor’s Council on
Developmental Disabilities, DES/DDD, Arizona Department of Commerce, HUD, and various housing
agencies and financial institutions across the state.)
The Arizona Department of Commerce estimates that there are approximately 27,000 persons in the state
who are homeless. Using conservative estimates based on average populations, at least 20%, or 5,400 of
those individuals have disabilities. According to the Arizona Bridge to Independent Living (ABIL), over
one-third of all calls they receive are related to housing issues.
The major issues affecting the lives of people with disabilities fall into four general areas: accessibility,
affordability, housing discrimination, and neighborhood exclusion.
20
Accessibility
The usability of a housing unit is related to size, layout, door width, absence of barriers such as stairs, and
the materials used in construction. Most of these affect usability by persons with disabilities. Accessible
housing, even in the broadest sense, is a scarce resource across the entire state. Accessible units are most
often found in high-cost newer apartment complexes which were built after the enactment of Fair Housing
amendments regarding people with disabilities. As such, most of them are not affordable.
Affordability
Since a high percentage of persons with disabilities are on fixed and/or low incomes, their ability to pay
market rents and mortgage costs is extremely limited. There are subsidy programs, but many have waiting
lists averaging one to four years.
Thus, at a time when “normalization,” person-centered service plans, and “empowered” decision-making
are at the core of service philosophies and program designs, there remains a paramount struggle for people
with developmental disabilities in achieving the status of independent living. Simply put, housing that is
accessible is usually not affordable, and vice versa.
Housing Discrimination
Housing discrimination often occurs against people on the basis of their disability. The most common
discriminating practices are:
• Refusal to Deal: People refuse to sell, rent, or negotiate.
• Different Terms and Conditions: Rental rates and security deposits are increased above market
rates and/or Social Security Income levels.
• Misrepresentation: Housing units are represented as not available when in fact they are.
• Steering/Assigning: People are directed to areas for discriminatory reasons.
• Unequal Financing: Loans and/or financial terms and conditions vary for different individuals.
• Adults Only: Families with children are excluded in an illegal manner.
• Accommodations: Physical accessibility is not provided in a reasonable, appropriate manner.
NIMBY (“Not In My Back Yard”)
In increasing fashion, neighborhood associations and community groups are rallying against the inclusion
of group home settings. This poses a considerable impact on the availability of appropriate residential
treatment for those people with developmental disabilities who requires the closer supervision that is
provided in such environments, and deter the capacity for people to live in the “neighborhood of choice.”
21
The Right to Fair Housing: Housing Advocacy and Legal Assistance Resources
Under the law, a landlord (owner, manager, broker, realtor or company representative) is responsible for
applying fair housing practices in dwellings such as the following:
• apartments that are rented or leased
• houses that are sold or rented
• boarding and rooming house rentals
• condominiums
• mobile home parks
For more information on the availability of housing, or housing discrimination:
Housing Discrimination:
City of Phoenix Equal Opportunity Department
Compliance and Enforcement Division
251 W. Washington, 7th Floor
Phoenix, Arizona 85003-2295
602-262-7486
TDD 602-534-1557
fax 602-495-0517
Arizona Fair Housing Center
13201 N. 35th Avenue, Suite 19
Phoenix, Arizona 85029
602-548-1599
800-868-3315
Civil Rights Division - Phoenix
Arizona Attorney General’s Office
1275 W. Washington
Phoenix, Arizona 85007
602-542-5263
Civil Rights Division – Tucson
Arizona Attorney General’s Office
402 W. Congress
Tucson, Arizona 85701
520-628-6500
Southern Arizona Housing Center
1525 N. Oracle Rd, Suite 107
Tucson, Arizona 85705
520-798-1568
22
Arizona Center for Disability Law - Phoenix
3839 N. 3rd Street, Suite 209
Phoenix, Arizona 85012
602-274-6287
Arizona Center for Disability Law – Tucson
3131 N. Country Club, Suite 100
Tucson, Arizona 85716
520-327-9547
General Information on Housing Opportunities:
To contact DES/DDD or the Governor’s Council on Developmental Disabilities, refer to the information
provided in the Introduction Section of this book.
Statewide Independent Living Council
2765 N. Scottsdale Rd, Suite 104L
Scottsdale, Arizona 85257
602-542-6049
“Home of Your Own” Program
602-542-4049
800-889-5893
602-542-4000 (TTY)
Arizona Bridge to Independent Living (ABIL)
602-296-0520
602-254-6407 fax
23
Employment
Successes and Challenges
Terry Podel
As an autistic adult, Terry possesses some unusual talents that are strikingly similar to the character
Dustin Hoffman portrayed in the movie “Rainman.” He can recite the ZIP codes of every city in the
United States, works well with numbers and can memorize items after looking at them only momentarily.
However, Terry needed assistance finding appropriate employment, and was successful as an employee
only after receiving supportive services from a vocational rehabilitation counselor.
Terry’s successful journey began several years ago as a sheltered workshop employee at Cactus
Industries and later at Garden Park. Once his confidence and social skills improved, he could be
considered for placement in supported employment. Eventually, with the diligent assistance of his VR
counselor, the City of Glendale Library employed Terry. His job placement began with a 30-day trial
period followed by a 90-day contract between DES/Division of Employment and Rehabilitation Services
(RSA) and the Glendale Library. RSA provided him with a job coach who spent time with him every day.
His self-confidence continued to progress to the point to where he was honored by the City of Glendale as
“Employee of the Year” by the Mayor’s Committee on Persons with Disabilities. Indeed, both Terry and
his co-workers realized how much his work was valued.
Mark Ramirez
On any day in Douglas, Arizona, you can find Mark Ramirez running his own small landscaping business,
and doing most of the work himself. A participant in the entrepreneurial program of the Governor’s
Council on Developmental Disabilities, Mark has learned how to organize his business, prepare for
future growth and get the help he needs from an ever-growing network of resources and support services.
Mark loves working with his hands and being outdoors in the sunshine. He loves seeing a job through
from start to finish, and seeing his work develop and mature, and takes pride in making Douglas look
better. Being his own boss also means Mark can organize his schedule to spend time with his family and
as an active member of the Governor’s Council.
Because of his desire to live life to its fullest, Mark’s disability is almost invisible as he serves as a great
inspiration to others.
The value of work to both the individual and society is a common core value that guides the efforts of
advocacy groups, service providers, and people with developmental disabilities throughout the country. It
is a commonly held planning assumption that if people are to attain their highest level of self-sufficiency,
there must be full access to employment opportunities for all people with developmental disabilities.
Access to appropriate level jobs, and to the supportive services required to maintain employment, are
considered as basic rights.
24
High Unemployment Rates
The two case examples cited above are but two of countless success stories involving people showing
unending courage and perseverance in achieving a sense of independence and self-determination.
However, it is also true that insufficient funds and delayed attention to the employment potential of people
continue to pose major challenges to the employability of people with developmental disabilities. This
assertion is bolstered by the fact that, nationally, the unemployment rate of people with developmental
disabilities is estimated to be 70%. Here in Arizona, the Governor’s Council on Developmental
Disabilities states that approximately 75% of persons with disabilities are unemployed. In addition, 37%
of adults with disabilities earn an annual income of $15,000 or less.
Employment Gaps: Major Employment Issues Facing People with Developmental Disabilities
In the 1998 Harris Survey of Americans with Disabilities, it became evident that while there have been
considerable gains in many areas over the years, the overall employment outlook continues to harbor
significant concerns. Commissioned by the National Organization on Disability (NOD), the study by
Louis Harris & Associates involved 1,000 individuals with disabilities.
The largest margin of disparity between disabled and non-disabled persons was found in the employment
statistics. Only 29% of working-age adults with disabilities were working full or part-time, compared to
79% of individuals without disabilities. This 50% gap was attributed to inadequate jobs, experiences of
job discrimination, and an increase in the number of individuals with severe disabilities. Over half of the
working adults with disabilities reported that their jobs did not fully allow them to utilize their skills and
abilities, and inadequate compensation was cited by 47% of the working individuals surveyed.
As an additional obstacle to appropriate employment, many of the participants reported that a lack of
employer-provided health care insurance was an obstacle to accepting employment. Many jobs held by
people with disabilities do not provide health care coverage or wages that can cover their medical needs.
According to the Harris report, 57% of individuals with disabilities currently not working would lose their
health care insurance benefits if they were employed full time.
Respondents also reported that they still experience discrimination in the workplace. One-third of the
participants believed that workplace discrimination is a leading reason for their unemployment, and 58%
believed that they were denied job interviews based on their disabilities.
Finally, 43% of the respondents felt that they had not been awarded more responsibility or considered for
promotions because of their disabilities, and one-third of the individuals reported that they received lower
wages than their non-disabled co-workers performing equivalent duties.
Note: The complete N.O.D./Harris Survey of Americans with Disabilities is available from the National
Organization on Disability, by phone (202-293-5960) or e-mail (newsome@nod.org).
25
What’s Working? A Snapshot of Current Programs
Rehabilitation Services Administration (RSA) Programs
In July, 1993, the Division of Developmental Disabilities employment programs were transferred to RSA.
Based on a Project SLIM recommendation, responsibility for all employment programming for persons
with developmental disabilities who were clients of DDD were transferred to RSA. An entity within the
Department of Economic Security, RSA provides an array of programs for persons with disabilities. As of
this writing, RSA Employment Programs had 2,420 open cases on people with developmental disabilities,
including 656 clients (27%) in the Vocational Rehabilitation Program, and 1,764 clients (73%) in the
Employment Support Services Program.
Vocational Rehabilitation Program (VR)
The VR mission is “to work with individuals with disabilities to achieve gainful employment through the
provision of jointly-developed and individually-planned rehabilitation services in a partnership with the
Governor’s State Rehabilitation Advisory Council, Community Rehabilitation Programs, and all other
stakeholders.” With the transfer of DDD clients to RSA for employment services in 1993, more than
1,400 individuals were transferred to RSA to receive services from the Vocational Rehabilitation
program. Successful rehabilitation means that the individual is successfully placed and maintains a
specific job for at least 90 days. One acceptable successful VR outcome for people with very severe
disabilities is employment that is supported with extended employment support services (ESS).
Employment Support Services Program (ESS)
The majority of the people transferred to RSA in 1993 graduated to the Employment Support Services
(ESS) program by 1996. Individuals are referred to ESS based on the following criteria:
�� the individual is in school (age 16-21); and
• needs long-term support.
The mission of ESS is to work with individuals with the most severe disabilities to maintain employment
through the provision of employment support services. When ESS resources are not available for a person
for whom a service program has been initiated, the VR counselor must either terminate his/her
employment placement or maintain the VR program until this resource becomes available. The impact of
the latter is to increase VR costs and exhaust VR resources that would otherwise be available for other
individuals who can benefit in terms of achieving an employment outcome.
During SFY2000, RSA projected that 315 new applications would be referred to the ESS Program. As a
result of a growing caseload and level funding, RSA expects the waiting list for appropriate services to
grow, resulting in several people being denied long-term employment supports.
School to Work Transition
RSA has been involved in agreements with school districts since the early 1980’s. These agreements
enable RSA to increase resources for services to students with disabilities who are transitioning from high
school to adult life. The majority of people with disabilities who do not have a job upon leaving high
school are still unemployed three years later. Through RSA-school district agreements, more students can
be contacted prior to exiting school.
26
Transition programs allow students to consider vocational options, make decisions on obtainable goals,
and acquire skills and job experience.
Note: For further information on RSA programs and priorities, contact:
RSA Administration
1789 W. Jefferson
Phoenix, Arizona 85007
602-542-3651
602-542-6049 TDD
602-542-3778 fax
Comprehensive Employment Reform for People with Disabilities
On December 18, 1999, one of the most far-reaching federal employment initiatives, the Ticket to Work
and Work Incentives Improvement Act of 1999 was signed into law. This act establishes changes in
the Social Security system that are designed to remove employment barriers and put more control in the
hands of people with disabilities and their families. The provisions of the act, combined with those in the
Workforce Investment Act, can return millions of people with disabilities to gainful employment. The act
offers the following enhancements in employment opportunities for people with disabilities:
• more opportunity to retain critical health care coverage at the state and federal level;
• consumer choices among public and private employment services providers;
• non-intimidating access to accurate and timely information in making informed choices;
• the option of trying work and not having to reapply for benefits if a work attempt fails;
• work does not trigger a Continuing Disability Review that could potentially lead to termination of
benefits and discouragement to work;
• appointment of a consumer-controlled advisory panel to work directly with the Social Security
Commissioner to ensure a user-friendly program; and
• demonstration projects to eliminate the $700 per month “earnings cliff.”
Can’t Afford to Work: A Catch 22
Many people, including those with significant developmental disabilities, want to work and possess
considerable experience, skills, and knowledge to offer prospective employers. However, too often they
find themselves trapped in social support programs that are costly to the public and restrict their ability to
be employed. While Arizona’s economy offers a wide range of employment opportunities, VR offers
education and training opportunities, and the Americans with Disabilities Act (ADA) offering
discrimination protection, there remains an unemployment rate of 70% for persons with disabilities.
The unemployment rate for persons with significant disabilities who need long-term care is even higher,
as they can not afford to work and lose the necessary supports. Simply put, people are unable to earn
enough to pay for the entire cost of the vital supports they need. Consequently, they remain unemployed
and dependent upon a variety of social programs such as food stamps, subsidized housing, etc.
27
Currently, there is no mechanism that allows people with disabilities and their spouses to work and
maintain ALTCS eligibility by paying a share of the cost, based on their income, until they can earn their
way off of the program. Without a buy-in option, the talents and skills of persons with significant
disabilities will continue to be unrealized, and Arizonans will continue to unnecessarily bear the full cost
of the community supports for the lifespan of that person.
With the passage of the Ticket to Work and Work Incentives Improvement Act of 1999 (discussed above),
states are encouraged to develop Medicaid buy-in programs for people needing long-term care. While
some states have already implemented buy-in options, Arizona has yet to draft a program.
Other Issues in the Arizona Public Policy Arena
• Currently, federal funds are available to assist vocational training programs in Arizona at the matching
rate of 3.69 federal dollars to 1.0 state dollar. However, the State of Arizona has not appropriated
sufficient funds to secure the available federal funds. Full funding of the matching vocational training
program would effectively transfer 2,200 persons with disabilities from public assistance to the pool of
gainfully-employed, tax-paying citizens.
• The State of Arizona continues to not provide adequate incentives for employers to provide vocational
training programs.
• Although there are approximately 97,000 Arizonans with mental disabilities, Arizona is one of only
two states that does not extend the protection of the Americans with Disabilities Act (ADA) to persons
with mental disabilities under state law.
Increasing Employment Opportunities Through Employer Incentives
Considerable progress has been made across the country in obtaining increased job placements by
providing incentives to prospective employers. In the Employer Job Training Tax Credit, as proposed by
the Governor’s Council on Developmental Disabilities, any employer or potential employer who provides
remedial or basic skills training for recipients of Temporary Assistance to Needy Families (TANF),
General Assistance or SSDI/SSI is eligible for a State Employer Job Training Tax Credit (EJTTC) that is
equal to the actual cost of the training. In this format, potential employees can receive marketable skills in
a real work setting, and thus acquire work culture values as well as job skills. Employers are guaranteed a
return on their investment, and thus the perceived risks are minimized.
Other employment-related recommendations of the Governor’s Council include:
• advocate for changes in public policy on critical employment issues, including employment
discrimination and funding increases for RSA waiting lists and extended employment supports;
• increase the employment of individuals with disabilities through training and demonstration of
entrepreneurship opportunities through collaborations with the business industry;
• increase initiatives in transition and post-secondary education to enhance employment opportunities;
and
• assess employment needs of businesses/industries and communicate those labor market trends to
schools and employment training programs.
28
To contact DES/RSA:
DES/Rehabilitative Services Administration
1789 W. Jefferson
Phoenix, Arizona 85007
602-542-3651
602-542-3778
References
1998 National Organization Disability/Harris Survey of Americans with Disabilities. Louis Harris and
Associates, Inc.
29
Education and Transition
“Holding on to Your Dream”
Sherry gives new meaning to the term “perseverance.” Disabled as a young adult with Charcot Marie
Tooth Disease,” a form of muscular dystrophy, she quickly sought help and received training from
Vocational Rehabilitation services and was successful in finding employment. But within a few years,
Sherry sustained a closed head injury in an accident, and returned once again to VR for assistance.
Unsure about her physical and intellectual abilities, she underwent a new evaluation and enrolled at
Glendale Community College. In her first semester, she had not only earned a perfect GPA of 4.0, but
was performing many hours of volunteer work at the Good Samaritan Medical Center and at HOPE
Center for Head Injured.
It took Sherry many years of study at Glendale Community College and Arizona State University, but she
finally attained her educational goal: a Master’s in Social Work degree. During her schooling years, her
muscular dystrophy continued to progress, and as a result of her increased muscle weakness, she went
from using a three-wheel motorized chair to and electric wheelchair. She received assistance in paying
for her van modifications so that she could drive herself to work and maintain the independence she
cherishes.
Sherry became successfully employed as a social worker, and has served on the Governor’s Task Force
on Head Injury. She has conducted family support groups and appeared as a public speaker on several
occasions. Her commitment to help people with disabilities find the help they need has served as an
inspiration to others, and been a vital part of her own journey to empowerment.
Sherry’s story is truly one of perseverance, and stands as clear testimony for the role of education in
promoting the independence and self-confidence of people with disabilities. However, too often
individuals with disabilities and/or their families do not receive all of the supportive services they need to
successfully complete their education. And too often they do not receive adequate training to learn how to
effectively obtain those services.
The call for access to a high caliber, free public education for all students with disabilities can be heard
across several arenas, including:
• educational reform;
• State Improvement Plan (Arizona Department of Education and Exceptional Student Services);
• special education personnel needs;
• School to Work Transition Program; and
• special advocacy efforts.
Arizona Educational Reform
The Arizona Department of Education (ADE) is restructuring the state’s public education system.
Educational reform is being occurring in a comprehensive manner, and addresses virtually all facets of the
ADE. With a strong focus on “achievement” and “accountability,” all state systems are undergoing
substantial change. This can be seen in four major initiatives:
30
• State Academic Standards for All Students;
• Arizona Instrument to Measure Academic Standards (AIMS Test);
• Performance-Based Teacher Certification System; and
• Student Information and Accountability System (SAIS).
State Academic Standards for All Students
Through the participation of parents, students, educators, and concerned citizens, the State Board of
Education assumed responsibility for establishing content standards in nine areas: arts, comprehensive
health, foreign language, language arts, math, science, social studies, technology, and workplace skills.
Each content is divided into five learning levels, ranging from readiness level (kindergarten) to distinction
level (students who have mastered the grades 9-12 proficiency level).
Exceptional Student Services (ESS) has partnered with parents, teachers, administrators and
state/community agencies to develop a functional skill level of achievement to be included in the State
Academic Standards for students with disabilities. The Arizona State Board of Education has approved
alternative performance objectives in self-care, health/safety, daily living skills, language arts, math, art
and recreation/leisure, and technology.
Arizona Instrument to Measure Standards (AIMS)
The AIMS was designed to determine whether students are meeting academic standards. Administered to
sophomores in 1999, the AIMS is to become the graduation requirement of the class of 2002. As a
standardized tool for benchmarking student progress, the AIMS is a tool for holding education
stakeholders accountable for student growth and achievement.
ADE/ESS is currently developing alternative assessments to measure functional achievement levels for
students with disabilities in the areas of listening/speaking, reading, writing, and math. It is important to
note that all students are be assessed with the AIMS, regardless of their disability. The IEP Team
(Individual Education Plan) is responsible for determining the course of study leading to graduation for
students with disabilities. The team decides the appropriate AIMS level test that each student will be
required to pass, and may also decide whether an alternative assessment is the more appropriate in as a
graduation requirement.
Performance-Based Teacher Certification System
This system, which was revised in 1998, is designed to ensure that teachers possess the knowledge and
skills to teach in their certification areas. Using a combination of requirements which include formal
education and scores on knowledge and certification portions of the Teacher Proficiency Assessment,
teachers receive either a Provisional or Standard Certificate. It is feared that such rigorous requirements,
combined with no provisions for reciprocity with other states, will deepen the already existing teacher
shortages. This will have particular impact on Special Education area, where teacher shortages and
recruitment problems are major barriers in ensuring quality education for students with handicaps.
31
Student Accountability and Information System (SAIS)
SAIS is a centralized database/information system that streamlines electronic data exchange and on-line
data processing. This allows statewide connectivity via the internet, and ensures that information about
student, school and financial matters is accurate and timely.
ADE/ESS State Improvement Plan
The ADE/ESS State Improvement Plan was developed within the context of the ADE initiatives discussed
above. To seek improved achievement and accountability in the education of students with disabilities.
the plan identified the needs, barriers, and the corresponding strategies for addressing them. To ensure a
comprehensive set of needs and barriers, a broad range of stakeholders were enlisted to identify and
discuss those areas that must be addressed if statewide improvements for students with disabilities are to
be achieved. The group discussed critical areas of early intervention, general and special education
programs, student outcome measures, and system outcome measures. All of these areas were viewed as
critical to making systemic changes that would have a long-term affect.
The major findings of the ADE/ESS State Improvement Plan area as follows:
Lower percentages of children were being served for all ages and disability groups under IDEA in
Arizona than nationally. This is in contrast to the fact that , according to the Arizona Special Education
Census from 1994-1998, there was an overall increase of 22% in the numbers of students with disabilities.
The most common disability categories served in Arizona in 1998 were reported as follows:
Disability
Percent of
Enrollment
Specific learning disability 57.7%
Speech/language impairment 20.0%
Mild mental retardation 6.1%
Emotional disability 5.5%
Moderate mental retardation 2.1%
Other health impairment 1.5%
Orthopedic impairment 1.4%
All mental retardation 8.6%
In the 1998-99 school year, 47% of the 73,529 students enrolled in special education in Arizona were
in regular education classrooms, 34% in resource rooms, 18% in separate classes, and less than 1%
were in separate schools. Most (75%) of the students with mental retardation were in resource rooms.
Typically, students with health impairments (e.g. hearing and visual impairment, autism, orthopedic)
were served in regular classrooms. Students with emotional disabilities, specific learning disabilities,
multiple disabilities, and traumatic brain injuries were evenly distributed between regular classrooms
and resource rooms.
In regular classrooms, speech and language disorders represented 50% of the 6-11 year olds receiving
special education, while specific learning disabilities accounted for 40%. Among the 12-17 year olds,
specific learning disorders represented 78% of the special education students in regular classrooms,
while speech and language disorders accounted for 8%. The study found that separate classrooms and
32
schools have a much higher proportion of students with mental retardation, and that the number of
students being placed in separate settings increased as the students get older.
Overall dropout rates across all grades remained fairly constant from 1994 to 1998, ranging from 8.5 to
9.5 percent, with the overall rate higher for boys (9.3%, compared to 7.6% for girls). Not surprisingly ,
the high school dropout rates for both boys and girls was substantially higher, with rates ranging from 11.5
to 12.8 percent.
As discussed in the chapter on Employment, the transition from school to employment (and college)
remains the greatest area of discrepancy between people who are disabled and those who are not. Many
special education students have reported that they lacked education in daily living skills such as money
management and job/career seeking. Both students with disabilities and their parents consistently report
that more transitional services are needed.
Based on their findings in the “Follow Along Project,” the authors (Love and Malian, 1998) identified
increased commitment to potential dropouts as one of the most important strategies in preventing
joblessness, imprisonment and drug use. Bolstered by high rates of unemployment, the authors strongly
recommended early identification of students at risk of dropping out to ensure that they receive
appropriate transition services.
In a study of transition services available to youth with disabilities, the Institute for Human Development
at Northern Arizona University found the following:
• most students did not have paid employment as a transition goal;
• most students included college as a transition goal;
• most students were not working in the community as they neared graduation.
The programs reporting the most successful transition practices reported the following as essential
components:
• community involvement and support;
• collaborations between schools and employers; and
• school-agency partnerships.
Recommendations for improving transition outcomes included:
• increasing in-service and pre-service opportunities;
• increasing the number of transition specialists in school districts;
• following-up with students after graduation; and
• improving communications and collaborations among all stakeholders (i.e. all levels of education,
state agencies, employers, and families).
The survey also revealed that there is inadequate communication and collaboration between secondary and
post-secondary programs for young adults with disabilities. In addition, the survey indicated the
following:
33
• overall, people with disabilities have not been successful in post-secondary programs, with
enrollment rates at 50% lower than the general population;
• post-secondary students with disabilities are often solely responsible for their own educational
accommodations;
• linkages between secondary and post-secondary entities are often limited to one-time events or
distribution of materials; and
• post-secondary disability programs/specialists have few linkages with adult service agencies.
In a study involving college disability support coordinators, the two most significant barriers identified
were the lack of appropriate evaluation data (to substantiate eligibility for campus disability support
services), and the lack of funding for evaluations of students who are no longer IDEA eligible. It was
determined that each year there are about 400 students seeking disability support services who have no
current evaluations and insufficient financial resources to obtain evaluations.
Other barriers reported by the support coordinators included:
• lack of skills for self-advocacy, independence, and problem solving among students with
disabilities;
• failure of secondary school documentation to identify the types of accommodations needed by
students;
• a tendency of high schools to waive college preparatory courses rather than provide
accommodations in classes;
• poor preparation (e.g. study skills, syllabus comprehension) for the academic rigors of higher
education;
• a tendency of high schools to focus on remediation rather than compensatory skills and the use of
accommodations; and
• limited awareness among teachers, parents, and students about higher education as an option for
students with disabilities.
There is an increasing number of students with disabilities receiving education in secure facilities (i.e.,
correctional facilities). As of September, 1999, 46 secure facilities in Arizona were serving
approximately 315 special education students, with the majority being served by the Departments of
Corrections and Juvenile Corrections. This number should continue to increase statewide as there is more
awareness of the role of education in reducing recidivism and the requirements of IDEA of 1997 are
implemented.
Special Education Personnel Needs
Over the next decade, there will be a dramatic shortage in teacher supply. According to the National
Center for Education Statistics (NCES), expected increases in student enrollment, accompanied by
increased teacher attrition as the baby boom generation approaches retirement, will cause unprecedented
teacher shortages. In special education, the highest shortages, in rank order, are expected in: learning
disability, multiple handicapped, audiology, physically handicapped, hearing impaired, and visually
impaired.
34
In August, 1999, the Northern Arizona University Social Research Laboratory conducted a survey of
personnel needs of charter and district schools to ascertain their needs relative to special education and
transition personnel. The survey revealed that the most needed category of personnel were teachers,
followed by related services personnel and teacher aides. Schools reported the greatest need for teachers
with multiple certifications, with 41% indicating learning disabilities as the most needed area. The most
needed related services personnel was speech therapists.
Nearly all Arizona school districts experience shortages of speech and language pathologists, and many
employ personnel who do not have full qualification. In the 20th Annual Report to Congress on IDEA,
Arizona ranked fourth in the nation in the number of vacant positions for speech/language pathologists.
It is estimated that there are 256,000 children and youth who are of Hispanic origin, out of which about
47% live in homes in which Spanish is the primary language. Current data indicate that the incidence of
speech and language disorders is about 18%, and when applied to Arizona statistics, suggest that over
21,657 Hispanic youth may have speech and language disorders. With the recommended maximum
caseload of 40 students per pathologist, it can concluded that Arizona is in need of at least 541
speech/language pathologists who can address the needs of these language-minority students. While the
actual number of Spanish-English bilingual speech-language pathologists in Arizona schools is unknown,
it is estimated that there are between 25 and 50 statewide.
There is a national concern about teacher retention that is even further displayed here in Arizona. The
American Association of Employment in Education reports that almost half of the education majors do
not enter teaching upon graduation. Furthermore, about 22% of all new teachers leave the profession with
the first three years. DES estimates that of the more than 41,000 employed teachers in Arizona, 20,000
will be eligible for retirement in the next ten years.
School to Work Transition Program
If one of the primary purposed of high school is to guide and prepare students to successfully negotiate
their transition into their emerging adulthood, then it is of particular importance that attention be paid to
the outcomes generated on behalf of those who have disabilities.
As with the general population, students with disabilities emerge into an array of adult roles: employees,
higher education students, community members, renters/home owners, relationship builders, etc.
Successful transition into these roles requires the support of school programs, support service agencies,
and a broad range of supports within the greater community. To be successful, transition efforts should
begin much earlier in life, during elementary school years.
In a 1999 status report commissioned by the Governor’s Council on Developmental Disabilities, the
Institute for Human Development (IHD) at Northern Arizona University found that Arizona has made
significant progress in its transition services delivery system between 1991 and 1997, with particular
mention of the numbers of students having some level of transition planning in their Individualized
Education Program (IEP) documents.
IHD also found that program limitations and gaps continue to demand stronger linkages between
educators, adult agency providers, higher education officials, community members, and state and local
administrators. The most important continuing concern centers on the need to establish self-
35
determination training for at-risk students, especially those with disabilities, beginning in the elementary
school years. As the core value in addressing this need, there is a strongly-held belief that “.....a self-advocating,
self-determined, self-aware student who facilitates his/her IEP and/or school-to-work
transition plan will develop into the best long-term transition investment for all stakeholders.”
Many students with disabilities are also at risk because of an array of conditions: poverty, limited
language proficiency, early pregnancy, and criminal behavior. Successful transition practices must
provide resolution to all issues that students encounter.
Based on their survey of secondary and post-secondary representatives, there is a variable degree of
transition programming and successful practices throughout Arizona. However, the survey respondents
indicated that those practices are far from comprehensive or statewide. The survey revealed that:
• there are not enough trained providers in special education and adult service agencies;
• most educators are aware of the need for transition programming, but have had difficulty “selling”
it to their colleagues or administrators, and do not obtain sufficient training, materials and partners;
• employers, community members and post-secondary institutions are supportive of transition
programs, but are typically not linked to each other;
• there is not a consensus regarding the concept of transition being a community responsibility; and
• communication and collaboration among stakeholders has not yet gained momentum.
Finally, IHD put forth a set of core recommendations aimed at maximizing statewide efforts to assist
people move from high school to the workforce. They are:
• Establish an Interagency Director’s “working group” to ensure that common values and goals exist
that will further efforts for a statewide transition program.
• Address the many gaps and inter-agency “disconnects” that exist in transition services.
• Plan and develop a coordinated statewide system to provide training and technical assistance to the
full range of professionals who are key to effective transition services.
• Ensure that students with disabilities, families, advocacy and support groups receive training and
support to ensure informed and active participation.
• Implement a self-determination curriculum for all high-risk students, beginning in elementary
school.
• Ensure that every student has a Transition Plan and Portfolio, beginning at least in middle school.
• Develop and monitor junior high/middle school curriculum and transition practices.
• Advise universities and credentialing bodies about specific transition competencies for inclusion in
pre-service curriculums and graduate coursework.
• Create a statewide management information system to collect, analyze and disseminate
information about transitioning youth in all areas.
• Consider support for legislation that provides resources to alleviate lengthy waiting lists for young
adults needing adult services.
Advocacy Efforts
While many of the issues have been presented earlier in this chapter, it remains important to emphasize
the role of advocacy groups in promoting the public policies and educational practices that are known to
maximize the probability that people with disabilities will lead meaningful and productive adulthoods.
36
To quote the Governor’s Council on Developmental Disabilities: “Individuals with disabilities and/or
their families are not currently receiving all of the services and supports that they need to successfully
complete their education, nor are they receiving adequate advocacy training to learn how to effectively
demand those services.”
Subsequent to interviewing several agency representatives, advocates, and persons with disabilities about
the barriers and solutions to effective statewide education, the following concerns were most often
presented:
There are insufficient funds to ensure an effective statewide effort in providing adequate support
services, work/school opportunities, and special education.
Transition services often occur too late to ensure effective emergence into adulthood for persons
with developmental disabilities. It is frequently documented that the most successful programs
throughout the country are those that provide early intervention.
Although considerable progress has been made in the last decade, there remains a tendency to
isolate students with disabilities (e.g., self-contained classrooms, portable units).
There is a need for more training of teachers and families on issues related to behavior management
plans and IEPs.
More advocacy is needed at the post-secondary levels, as students with disabilities are “on their
own,” and must prove their disability to gain access to special needs accommodations.
Efforts must be put forth to increase public awareness of the benefits of investing in educational
and support services for students with disabilities. This includes positive media campaigns relative to
the benefits of special education.
References
Transition from School to Work and Adult Life: Arizona Status Report. Institute for Human Development,
Northern Arizona University, November, 1999
Special Education Personnel Needs Survey. Social Research Laboratory, Northern Arizona University,
September, 1999
37
Social Development: Self-Determination
and the Quality of Life
“Free at Last”
John moved from Chicago to Phoenix in 1991. He remembers the exact day, and can even tell you the
flight number of the plane that brought him here, because for John, that was a very important day. To
John, that day represented the final release from what John calls the “warehouse for the mentally ill.”
This is because John had lived for nearly 35 years in institutions. And once he arrived in Phoenix, he
moved into a small guesthouse and began to exercise his newfound independence.
In 1993, John rented a small studio apartment. He also remembers it well, as it was the first time in his
entire life that he had lived on his own. He loved it, but was not content to stop there......he wanted
more.......he wanted to own a home. John established a good credit history, received professional advice
and assistance from a realtor, financial lender, and friends, and by 1996 had moved into his own home, a
condominium on a quiet residential street in Phoenix.
John is employed in the food service industry, and thoroughly enjoys his duties, which include serving
lunch to school-age children, who like him very much. After work, he likes to work on his home, and often
works part-time cleaning homes. He is an accomplished model-maker, and likes to use the exercise and
clubhouse facilities as the condominium complex where he lives.
John is proud to be investing in his own future, building equity, and securing his continued independence.
Social Development and Empowered Lifestyles
It is easy to assert that most people, both disabled and not disabled, seek to participate in those life
activities (e.g., employment, socializing, money matters, health) that have a direct impact on their quality
of life. Indeed, if our lives are to be viewed as “self-determined,” it requires a sense of participation and
ownership in the decisions and directions that brought us to the moment and place where we stand.
As has been discussed in this book, the lives of people with developmental disabilities are especially
sensitive to the many decisions that must be made relative to education, work, health, social participation,
and general quality of life issues. And, as reported in the Harris Survey of Americans with Disabilities in
1998, large gaps still exist between adults with disabilities and other adults with regard to these issues.
According to the Harris survey, these gaps, along with gaps in frequency of socializing and entertainment,
can arguably be linked to the gap that exists in life satisfaction. Only about 33% of people with disabilities
say they are very satisfied with life in general, compared to 61% of people without disabilities.
As stated by the Governor’s Council on Developmental Disabilities: “Many Arizonans with disabilities
have not had the opportunity to actively participate in or direct the decision-making process regarding
their service programs, supports or basic life decisions. In many cases they have not known the facts to
enable them to make those decisions.” Clearly, as more value is placed on the need to affect one’s own
future, it is easy to see the correlation between self-determination, self-advocacy, and life satisfaction.
38
For purposes of this discussion, the following four areas of empowerment will be briefly presented:
• self-determination;
• community inclusion; and
• leadership development.
Following that section, four programs will be presented that illustrate self-determination paradigms:
• People First;
• Person-Centered Planning;
• Family Support; and
• DES/DDD initiatives that empower consumers and families.
Areas of Empowerment
Self-Determination
People experience self-determination when they have direct participation and authority in their own life
decisions. This does not mean that the “right” or best decisions are always made, but rather that there is
ownership in both the decisions and their consequences. Simply put, self-determination is indicated when
there is freedom to choose. Thus, it becomes imperative that the range of consequences are known, that
choice options are known, and that as a bottom line, informed decisions are being made.
If people with disabilities are to seek and achieve a level of independence, they must have the opportunity
to make their own decisions. With increased control over their lives, they also must receive adequate
information about their choices. In this sense, self-determination can also be viewed as self-advocacy.
Whether they have control and choice about their housing options, employment possibilities, and/or social
relationships, people with disabilities must have access to accurate information, supportive training, and
technical assistance in acquiring the tools they need to exercise responsible decision-making.
Community Inclusion
According to the Harris Survey, a majority of adults with disabilities feel that access to public facilities
(75%), the quality of life for people with disabilities (66%), public attitudes toward people with
disabilities (63%), how the media portrays people with disabilities (62%), access to pubic transportation
(60%), and including people with disabilities in advertising (57%) have all improved over the past four
years. In addition, 69% of people with disabilities claim to have voted in the 1996 presidential election.
As people with disabilities become more independent, and feel a stronger sense of control over their own
lives, they are also more likely to identify as a real member of the community. Self-determination and
self-advocacy lead to self-confidence and a sense of pride, which are vital tenets of community
involvement. For all people, with and without disabilities, activities aimed at self-improvement and
empowerment will also have an immediate impact on the community context in which they live. And, as
people become invested in the quality of community life, they are more likely to identify as a member of
that community.
39
Leadership Development
Self-determination, self-advocacy, and community inclusion are naturally entwined with leadership
development. If people with disabilities are to acquire control over their own lives, engage in decisions
based on knowledge and skill, and relate to the larger community context, they are necessarily embarking
on a path to leadership.
If individuals with disabilities and their families are to have an effective voice in the policy-making and
service delivery strategies that affect them, they leadership development programs must be accessible and
affordable. This is clearly seen in the activities of the Governor’s Council on Developmental Disabilities,
whereby they seek to increase the number of individuals with disabilities and/or their families who are
involved in systems change efforts. Such activities must be translated into board memberships, work
group experience, and legislative work in advocating on disability issues.
Programs of Self-Determination
People First of Arizona
As noted in the discussion of the history of developmental disabilities, the People First movement was
founded in the 1960s in Sweden as a core component of the self-advocacy movement. As such, it brought
strong representation to the need for people with disabilities to speak out for themselves and have a major
“voice” in the direction of their own lives.
Since the early 1980s, the Arizona movement has served to empower people with disabilities to become
self-advocates in obtaining the necessary supports to fulfill their dreams and lead productive lives of their
own choosing. People First, as a self-advocacy movement by and for people with disabilities, promotes
the following:
• self-advocacy;
• self-determination;
• leadership opportunities;
• personal growth and financial control;
• consumer-driven programs and services; and
• education and training.
People First of Arizona strives to fulfill three major goals:
• Teach self-advocacy skills to people with disabilities.
• Promote self-determination and Person-Centered Planning.
• Influence public policy decisions at all levels by developing the leadership of persons with
disabilities.
For more information on People First of Arizona, contact:
40
People First of Arizona
P.O. Box 6123-791A
Phoenix, Arizona 85005
602-542-6825
Person-Centered Planning
Person-centered planning refers to an approach in which people with disabilities direct their own services.
As such, it is a service delivery approach that is based on a fundamental belief in the right of self-determination,
and is characterized by having the services and funds flow as directed by the client.
In person-centered planning, the services are determined in accordance with the “preferred future” of a
person with disabilities and/or his/her family. The preferred future is what the person and family want to
do in the future, and is based on their strengths, capabilities, lifestyle, and cultural background. In
essence, person-centered planning is based on the awareness of and sensitivity to the lifestyle and cultural
background of the consumer and his/her family, and is fully grounded in the principles of self-determination
and self-advocacy.
In Arizona, DES/DDD has established the Design Team for the purpose of furthering self-determination
principles in the planning and delivery of services to people with developmental disabilities. Comprised
of people with developmental disabilities, their parents and family members, service providers, and
DES/DDD staff, the Design Team is charged with taking a comprehensive view of services, and
examining the extent and ways is which member-directed services can occur.
The Design Team has recommended that “a person/family-centered planning process be implemented
throughout the system in FY 2000 and serve as the basis for determining funding levels in FY 2001.” As
its first major focus, the Design Team is examining the issue of fairness and equity in service costs. Thus
far, the team has also been working on the following areas:
• development of a personal payment system;
• making the system less complicated;
• making more information available;
• making planning more meaningful;
• improving training in planning; and
• measuring changes.
While person-centered planning is not suited for all consumers and/or families, it does represent a larger
nation-wide movement toward increased consumer participation and independence. And while the
program requires careful steering to safeguard against budgetary and service quality concerns, it does
serve as a looking glass to the future of an ever-evolving continuum of care for people with disabilities
and their families.
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Family Support Act
If people with disabilities and/or their families are to realize self-determined futures that are based on their
own personal preferences, then service delivery systems must be “family-friendly.” If services plans are
to allow for individual and/or family control, then they must be driven by consumer/customer priorities.
And, if services are to be flexible in meeting varied needs and cultural contexts, then they must provide a
breadth of options and opportunities for choice.
The Family Support Act, enacted by the Arizona Legislature in 1993, requires that DES/DDD take action
to expand decision-making opportunities for families and persons with developmental disabilities. It
encourages the availability of choices in services, innovation in service delivery, and gives families and
individuals more authority and responsibility in determining needs and developing service plans. The
Family Support Act also calls for the availability of cash subsidies and vouchers, which enable families
and individuals more authority and choice in carving out their own service delivery system.
DES/DDD is responsible for administering the Family Support Act, and has empowered the Family
Support Steering Committee to develop, implement and monitor the family support programs of the
Division. The Steering Committee is comprised of family members, advocates, service providers, DDD
staff, and representatives of the Department of Health Services and the Arizona Health Care Cost
Containment System.
The guiding principles adopted by the statewide Family Support Steering Committee of DES/DDD are as
follows:
Family Empowerment: Family control, responsibility, and decision-making regarding the family member
with a developmental disability should be encouraged and increased.
Family Integrity: Services should promote and enhance family unity, competence, and independence
while minimizing dependency.
Family Needs: Services must be based upon the issues identified by families and be flexible enough to
meet the unique needs of each family.
Family Values: The values of mutual support and interdependence, long-term caring relationships, and
unconditional acceptance of all family members should be promoted throughout the service system.
Community Development: When families have needs which can not be met through state-funded services,
schools, churches, neighbors, and local community organizations must be integrated with the family
support services network.
A Family Support Planning Retreat was held early in fiscal year 2000. As a result of the input from the
participants, who included a diverse group from across the state, the Office of Advocacy, Family Support
and Self-Determination was formed. The activities of this office, which includes consumers and family
members, support the visions of the Steering Committee with a particular focus on the following:
• individual/family-driven supports;
• self-determination;
42
• information dissemination;
• increasing collaboration across and between different service systems; and
• creating more flexible systems.
DES/DDD Initiatives
In addition to the formation and activities of the Family Support Steering Committee, DES/DDD has
promoted other initiatives aimed at consumer and family empowerment, including:
Robert Wood Johnson Foundation Grant: Individual Decision
This project, titled “This is My Life: Arizona’s Response to Consumer Control, Choice and
Responsibility,” seeks to enhance consumer control and self-determination by empowering people with
disabilities and their families to control their own service budgets, live how and where they choose,
contract directly with service providers, and enhance their quality of life through expanded opportunities
for community integration and inclusion. Using a mentoring approach, DES/DDD has committed to
continuing this project beyond the grant cycle.
Home of Your Own
This project assists people with disabilities in buying their own homes by providing down payment or
closing costs, without jeopardizing their eligibility for federal and state subsidies and services. The
Division’s goal is for 100 people to purchase their own homes per year.
Core Indicators Project
Arizona is one of seven states to participate in this project to establish and pilot a set of quality measures
called “core indicators.” These indicators, which focus on individual choice and quality outcomes, are
intended to assess the following:
• community integration;
• choice and self-determination;
• independence;
• quality of relationships;
• quality of life;
• satisfaction with service coordination and service providers;
• access to supports and services;
• safety;
• health; and
• respect and rights.
Results of the pilot should allow states to develop practical strategies to improve the quality of supports
and services.
43
Voucher Program
With more than 1,000 people using vouchers to purchase services, individuals and families are being
empowered to choose providers. This program improves efficiency and effectiveness of services, and by
increasing the level of family involvement, leads to increase responsibility and satisfaction in service
quality.
Maximizing Potential through Early Intervention
The development potential of people with developmental disabilities can be maximized if developmental
delays and/or conditions known to be associated with delays are identified very early in life. To maximize
the development potential of Arizona children from birth to three years of age who show signs of
developmental delays, the Arizona Early Intervention Program for Infants and Toddlers (AzEIP) has been
established, which is based on and funded by the Individuals with Disabilities Education Act (IDEA).
Consistent with the operating philosophy of other family-empowerment models, AzEIP utilizes a family-centered
philosophy that is based on the premise that families know what their children need as well as
what the family as a whole needs. Using a “strengths-based” approach, AzEIP recognizes that the family
is the constant in a child’s life and that services and programs must support, respect, encourage and
enhance the strengths and competencies of the family.
Utilizing a network of early intervention services administered by a wide range of agencies, AzEIP seeks
to develop and implement a comprehensive, coordinated, community-based delivery system that is family-focused
and culturally appropriate. In this manner, families can be assisted in identifying and making
informed decisions about the early intervention services that are most suitable to their needs. These
services typically include audiology, nursing, nutrition, occupation and physical therapy, psychological
services, individual and family counseling, specialized instruction, transportation, speech and language
pathology, vision, and many other services that are designed to help children become ready to learn.
To advise and assist DES in carrying out its responsibilities relative to AzEIP activities, the Governor has
appointed the Interagency Coordinating Council (ICC), which is comprised of parents and representatives
of public and private agencies. In Arizona, there is an interagency agreement between DES, the
Department of Health Services (DHS), the Department of Education (ADE), AHCCCS, and the Arizona
School for the Deaf and the Blind.
AzEIP has established a public-awareness program focusing on early identification of eligible infants and
toddlers, and strives to inform the public and referral sources about how to make referrals and how to gain
access to evaluation and support services. It has established a comprehensive child-find system for
hospitals, physicians, parents, day care programs and others to refer children to the early intervention
system for evaluation and assessment. Other mechanisms have also been operationalized (i.e.,
Community Advisory Councils, local Interim Service Coordinators) to facilitate the implementation and
coordination of community resources.
Each year, approximately 3,000 infants and toddlers receive early intervention services in natural settings
such as home or in day care. Whenever a family has a disagreement, complaint or grievance relative to an
early intervention service or program, AzEIP provides for procedures to ensure that the rights of families
in the early intervention system are protected.
44
For more information on Early Intervention Services, contact:
Arizona Early Intervention Program
3839 N. Third Street
Phoenix, Arizona 85012
602-532-9960
602-200-9820 fax
References
1998 National Organization Disability/Harris Survey of Americans with Disabilities. Louis Harris and
Associates, Inc.
45
Health Care
If people with disabilities are to strive for and realize their full potential for living self-determined
lifestyles, they must have access to medical and dental care that maximizes their health status. If people
with disabilities are to live independently, pursue educational goals, be a member of the workforce, and be
maintain community inclusion, they must receive medical and dental services that are responsive and
appropriate to their needs.
Arizona Long Term Care System (ALTCS)
In its efforts to provide effective, quality health care, DES/DDD provides medical services to people with
disabilities who are eligible for the Arizona Long Term Care System (ALTCS), a federally funded
Medicaid research and demonstration program. Services are provided through contracted health plans, and
are coordinated by a primary care physician.
ALTCS, provides eligible recipients both acute and home/community-based medical services, including,
but not limited to, the following services:
• augmentative communication devices
• attendant care
• Early Periodic Screening Diagnosis and Treatment (EPSDT)
• health plan (acute care) services
• home health aides and nurses
• hospice
• mental health (in coordination with ADHS and regional behavioral authorities)
• non-emergency transportation
• physical and respiratory therapy
• respite care
• speech/hearing therapy
Health Care Concerns: Implications for Public Policy
The eligibility for ALTCS services is determined by the Arizona Health Care Cost Containment System
(AHCCCS), the Arizona system for Medicaid. When people with disabilities are referred for eligibility
determination under ALTCS, they must cooperate in the determination or, according to state law, will not
receive other services from DES/DDD.
In Arizona, Medicaid health care services for people with disabilities can only be provided if they are
determined as a “medical necessity,” but the Arizona definition of “medical necessity” often prevents
people from receiving services, pharmaceuticals, and equipment. In addition, Medicaid often will not
cover certain dental services such as dentures, because they are considered “cosmetic.” This creates a
major policy dilemma when medical procedures considered as only “cosmetic” often pose insurmountable
barriers to people’s plans for employment and community inclusion. This stands in direct contrast to the
program movements toward “person-centered” plans and “preferred futures.”
46
According to the 1998 Harris Survey, Although nine out of ten (90%) of adults with disabilities are
covered by health insurance, they are nearly twice as likely (23% to 13%) to report that they are not
satisfied with the health care services they and their family have used. Among those who are insured, one
out the three (32%) say they have special needs because of their disability (e.g., special therapies,
equipment and/or medicine) that are not covered by their health insurance.
The Harris study also reported one out of five (21%) adults with disabilities did not get medical care that
they needed on at least one occasion during the previous year, which is also twice the rate of people
without disabilities. One out of four (28%) of adults with disabilities postponed getting health care they
thought they needed as a result of not being able to afford it. Furthermore, among adults with disabilities
who were not covered by health insurance, nearly one in five (18%) were not able to get insurance due to
their disability or pre-existing health condition.
As is true throughout the country, the assurance of appropriate health care for all people, and in particular
for at-risk populations such as people with disabilities, can only be provided through substantive reforms
in the public policies. In this sense, if people with disabilities are to have guaranteed access to appropriate
health and dental care, it will only be achieved through supportive legislation.
To this end, in Arizona, the Governor’s Council on Developmental Disabilities supports legislation that
protects the rights of people with developmental disabilities to secure access to appropriate health and
dental care in the following areas:
• expanding Medicaid services to include dental and vision services;
• developing a Patient Protection Bill of Rights; and
• requiring of private insurance companies to include both mental and physical health care coverage.
References
1998 National Organization Disability/Harris Survey of Americans with Disabilities. Louis Harris and
Associates, Inc.
47
Implications for the Future
As stated in the Introduction, the purpose of this book is to provide information for people who must
make important choices about the quality of life of individuals with disabilities. This book has
intentionally not provided advocacy for the agenda of particular organizations. However, as is the case
with any examination of human needs and levels of response, this book has necessarily brought attention
to many areas that require both immediate focus and future actions. These areas can be briefly
summarized as follows:
Self-Determination
Over the past couple of decades, there has been a growing movement which advocates for the real
participation and self-determination of people with disabilities and their families in making their own
decisions about support services and future planning. This major trend will continue in the coming years.
Thus, it is imperative that the larger service delivery networks provide seamless efforts to provide
accurate information, increased breadth of services (i.e., culturally appropriate options), and
flexible financial policies. To ensure individual and family control and that services are customer-driven,
continued emphasis should be placed on developing programs and services that are
consistent with the values of the Family Support Act.
Housing
People with disabilities continue to face overwhelming barriers in securing housing that is accessible and
affordable. Housing discrimination continues to exist on the basis of disability, and community exclusion
is still evident in many neighborhoods. With the help of advocacy organizations and the major public and
private stakeholders, it will be important to bring high visibility to the right to fair housing and legal
assistance resources for people with disabilities. In addition, innovative programs and practices
such as the “Home of Your Own” program will play an increasing role in promoting creative
solutions the call for self-sufficiency and independent living arrangements.
Employment
With nearly 75% of Arizonans with disabilities being unemployed, the need to provide adequate
funding for vocational training and employer incentives, so that jobs are both attainable and
sustainable.
Education and Transition
Although there have been sweeping advances in the overall state of education for all people, including
people with disabilities, too often school-age children and their families do not have adequate access to
high quality, free education and academic support services. The major stakeholders of public
education and people with disabilities must seek to continue in their efforts to bring remedy to the
need for academic accountability and barrier-free education (as evidenced in the ADE/ESS State
Improvement Plan). Transition programs must shift toward earlier intervention, and more attention
must be placed on partnering among schools, employers, and institutions of higher education. In
addition, special efforts must be made to promote increased interest and hiring of special education
48
teachers who are trained in the needs of people with disabilities and appropriate behavioral
management practices.
Health Care
Similar to the housing needs of people with disabilities, the major barriers to health care needs are
accessibility and affordability. If people with disabilities are to receive adequate, affordable health
care, there will have to be a streamlining of access procedures and a broadening of health care
choices within the state-contracted health plans. At the same time, it will be important to promote
better education in the medical community of developmental disabilities so that they can successfully
prescribe the appropriate medical supports to the funding mechanisms. Similarly, the correlation between
prescribed medications, their adverse affect on dental health, and subsequent employability requires
extensive attention.
In addition to the major areas noted above, there are several implications for services that cut across all
areas. They include, but are not limited to the following:
People with disabilities are living longer. This necessarily affects the design and delivery of support
services in the areas of housing, employment, health care and social development, and means that more
attention must be given to emerging programs aimed at transitioning people from independent to group
living situations, and from the workforce to retirement. There will an increased need to the view the
needs of people within the natural context of aging, conservatorship, and guardianship. Transition issues
related to aging are also the result of the “graying of the care-giver population,” which draws attention to
the gaps in support that await the aging person with disabilities.
People with disabilities have limited access to transportation. With the passage of Transit 2000, and
renewed attention to mass public transit in the communities, which border Phoenix, there is some
optimism regarding the development of a seamless regional system across city boundaries. As a key to
employment and community participation, this development is paramount for people with disabilities. It
will be important for advocates to ensure that the special needs of people with disabilities (e.g.,
accommodations for attendants, accessibility) remain visible during the planning and implementation
phases of new transit systems.
49
Conclusion
As the State of Arizona continues to witness dramatic growth, especially in the urban areas, there will be
corresponding increases in all populations, including people with disabilities. Accordingly, the demand
for services and funding levels will also grow, requiring the steadfast attention of service providers,
planners, funders, and policy makers. As identified in this book, there are several major initiatives (most
of which support the movement towards family support, self-determination and advocacy) that can have
an enormous positive impact on the quality of life for thousands of Arizonans, their families, their
communities, and the socio-economic health of Arizona as a whole.
Thus, while considerable progress has been made, much work remains to be done. If the living conditions
for people with disabilities are to be truly comparable to those without disabilities, then information,
dialogue, and collaborative commitments must occur that bring community leaders, service providers, and
policy makers to a common ground of vision and action.