**The Journey**

**to**

**Inclusion**

**A Resource**

**for State Policy Makers**

![](media/image1.png){width="1.0069444444444444in"
height="1.0930555555555554in"}**PRESIDENT\'S COMMITTEE ON MENTAL
RETARDATION**

**U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Administration for
Children and Families**

**Washington, D.C. 20201-0000**

October 31, 1995

The President\'s Committee on Mental Retardation (PCMR) is proud to
present, JJ& [Journey to Inclusion, a Resource Guide for State
Policymakers]{.underline}. The Committee is pleased to express its
appreciation to authors Tecla Jaskulski, K. Charlie Lakin and Susan Ames
Zierman for their insightful examination of the many paths being
undertaken by State leaders in each State\'s respective *journey to
inclusion.*

The President\'s Committee recognizes that efforts to promote inclusion
of citizens with mental retardation will be most effective when
articulated by more than the traditional allies of such efforts. The
National Collaborative Academy on Mental Retardation was an effort to
recognize that success in achieving inclusion is dependent upon forming
new coalitions of active and committed leaders at the State and local
level.

That is why state delegations attending the 1995 Academy included such
varied members as State Legislators, State Budget Directors, business
community leaders as well as human service agency personnel,
self-advocates and family members.

Such coalitions are already active in many States and local communities
where people are working everyday to open new paths on the *journey to
inclusion.*

On behalf of the PCMR, I sincerely hope [The Journey to Inclusion, a
Resource Guide for State Policymakers]{.underline} serves as a valuable
resource in your individual journey.

![](media/image2.png){width="1.636111111111111in"
height="0.7166666666666667in"}

Gary H. Blumenthal

Executive Director

> The Journey to Inclusion A Resource Guide for State Policymakers
>
> President\'s Committee on Mental Retardation

Administration for Children and Families

U.S. Department of Health and Human Services

Wilbur J. Cohen Building, Room 5325

330 Independence Avenue, S.W.

Washington, D.C. 20201

Tecla M. Jaskulski

K. Charlie Lakin

Susan A. Zierman

> **TABLE OF CONTENTS**

Foreword

Acknowledgments

Overview

I.  **Changing Responses**

> Why Inclusion?

What People With Mental Retardation Are Saying About Inclusion

What Families Are Saying About Inclusion

Moving From Programs To Individual Supports

National Policy

Supports, Strengths, Choices And Inclusion

Trends In State Leadership

II. **Mental Retardation And Related Disabilities**

> Definitions
>
> Prevalence Of Mental Retardation And Developmental Disabilities
>
> Service Planning Implications

III. **How Inclusion Makes A Difference**

> Inclusion In Early Intervention
>
> Inclusive Education Transition Employment
>
> Inclusive Recreation And Community Connections
>
> Aging And Retirement

**TABLES AND FIGURES**

**[Tables]{.underline}**

Table 1: The Evolution in Services and Supports

Table 2: Mental Retardation/Developmental Disabilities Spending Per
\$1,000 of

Personal Income:1977, 1982, 1987 and 1992

Table 3: Estimated Prevalence of Persons with Mental Retardation in the
Noninstitutionalized and Institutionalized Populations of the United
States As Identified for Persons with Major Activity Limitations with
\"Main Cause\" Indicated

Table 4: Students Served Under IDEA Part B and Related Chapter 1 State
Operated

Programs

Table 5: Portion of Special Education Students by Setting

Table 6: Changes in Employment Services: 1986-1991

Table 7: Summary Statistics on the Size of Residential Settings on June
30, 1994

**[Figures]{.underline}**

Figure 1: Numbers of Large State MR/DD Facilities and Units Closed and

Planned for Closure, 1960-1998

Figure 2: Total and Childhood (0-21 Years) Populations of Large MR/DD
Facilities, 1950-1994

Figure 3: Individuals Served by Size of Residential Setting: FYs 1977
and 1992

Figure 4: MR/DD HCB Waiver Outlays: 1982-1994

Figure 5: HCB Waiver Participants: 1982-1994

Figure 6: Percentage of Children Age 6-21 with Mental Retardation Served
in Different Education Environments, United States, 1991-92 School Year

Figure 7: Supported Employees with Mental Retardation as Their Primary

> Disability: FY 91 vs FY 93

Figure 8: Trends in Family Support

Figure 9: State Self-Advocacy Organizations, 1994

**FOREWORD**

The following report of the President\'s Committee on Mental
Retardation, [The Journey to Inclusion]{.underline} is both a compendium
of information as well as a testimony to the progress toward inclusion
that has been made in the field of mental retardation over the almost 30
years since the committee was established by President Lyndon B.
Johnson.

The purpose of the document is to provide participants at the 1995
National Collaborative Academy on Mental Retardation (September 8 - 11,
1995) with background on the theoretical framework that governs the
provision of services and supports to people with mental retardation,
the best practices that the field endorses, and the changes in the form,
scope and substance that mental retardation systems around the country
have experienced over the past several decades.

The document also highlights the richness and diversity among the States
and the range of innovation that characterizes State leadership and
initiative. Clearly, services for people with mental retardation, while
financed in part at the federal level, have always depended on State
policies and State-level advocacy for their direction.

Most importantly, this report highlights the lives and preferences of
people with mental retardation through their own words and stories. The
voices of their families and the stories of their commitment to the
inclusion of their family members are also given a prominent place in
the narrative. Without these voices and stories, the report and the
Academy would be a hollow exercise.

While the chapters that follow clearly show that the Journey to
Inclusion is well launched, they also point out that too many people are
still leading segregated lives in separate classrooms, sheltered jobs,
special recreational settings, congregate housing and in communities
where their presence and their gifts are unknown.

It is hoped that the resources in this report will help Academy
participants and others create and reinforce those policy directions
necessary to complete this important journey.

Val Bradley

Vice Chair

President\'s Committee on Mental Retardation

**ACKNOWLEDGEMENTS**

The authors wish to acknowledge the assistance of the National
Association of Developmental Disabilities Councils, in particular Kate
Billings, for help in organization and lay-out of the report. Guidance
from the members and staff of the President\'s Committee on Mental
Retardation was invaluable, including in particular PCMR vice-chair
Valerie Bradley, PCMR member Ruth Luckasson, Executive Director Gary
Blumenthal, Marci Whiteman and PCMR Student Intern Elaine Maag. We also
would like to thank the American Association on Mental Retardation for
their generous sharing of resource materials.

Photographs were provided courtesy of the ANCOR (American Network of
Community Options and Resources); Sarah Putnam, Massachusetts; Lilly M.
Blase, Nebraska; the National Association of Developmental Disabilities
Councils; and the Macomb-Oakland Regional Center. Special appreciation
goes to Joe Dzenowagis of Macomb-Oakland for his help in transferring
images of inclusion across mediums.

Finally, we wish to acknowledge the many contributions of our colleagues
and their respective organizations who are participating in the National
Collaborative Academy, and whose previous writings have greatly enriched
this report, as well as to all the others whose works are cited in this
publication. We are all indebted to their many contributions to the
journey to inclusion.

Tecla M. Jaskulski

K. Charlie Lakin

Susan A. Zierman

OVERVIEW

This report is designed to be a resource to the participants in the
National Collaborative Academy convened by the President\'s Committee on
Mental Retardation, as well as to all others interested in policies and
programs affecting people with mental retardation. The focus of the
National Collaborative Academy is on inclusion throughout the lifetime
of individuals with mental retardation, and on the policies, services
and supports that make inclusion a reality-the journey to inclusion.

The report begins with a discussion of the changing responses to people
with mental retardation in order to provide a context for thinking about
the journey to inclusion. It opens with the thoughts of people with
mental retardation and their family members on the importance of
inclusion, followed by an overview of trends toward inclusion in the
service system and the evolution in our understanding of what is
important to people with mental retardation.

Chapter II summarizes the concept of mental retardation as it relates to
people\'s needs for services and supports, including the 1992 definition
of mental retardation developed by the American Association on Mental
Retardation. Information on prevalence is provided to help guide
policymakers in planning for those who may require the most extensive
supports for inclusion, as well as those whose needs are less intense.

Chapter III looks at how inclusion can make a difference throughout the
lifespan, from early intervention with infants and toddlers with mental
retardation, through the school years, into work life and participation
in recreation and community connections, and on into retirement. Stories
about real people with mental retardation and their families highlight
each aspect of inclusion through the lifespan, supplemented by
information on trends, strategies, and resources.

*Inclusion in Community Housing* (Chapter IV) reflects the central
importance of where people live, and the issues facing individuals and
policy makers on the journey to inclusion in community living. Examples
of resources being used by States to finance inclusive housing,
especially consumer­controlled housing, are featured, as well as trends
and milestones in the shift from institutions to supported community
living.

Chapter V focuses on the supports that promote inclusion-supports to
individuals, to families, and to communities and systems. The chapter
includes examples of effective supports at all three levels, from
assistive technology to legislative initiatives at the systems level.

The final chapter emphasizes the importance of empowering and involving
people with mental retardation and their families in policy making and
it includes tools and resources that States can use to plan for and
monitor, inclusive systems. The report finishes as it began, with the
voices of self advocates, to reinforce that people with mental
retardation can be our best guides on the journey.

Information on resources for the development of inclusive systems are
provided in each section, and references are listed in the Appendix
along with a list of the PCMR membership and national organizations
involved in mental retardation. Additional information may be obtained
from the President\'s Committee on Mental Retardation.

**CHANGING RESPONSES**

-   WHY INCLUSION?

-   WHAT PEOPLE WITH MENTAL RETARDATION ARE SAYING ABOUT INCLUSION

-   WHAT FAMILIES ARE SAYING ABOUT INCLUSION MOVING FROM PROGRAMS TO
    INDIVIDUAL SUPPORTS NATIONAL POLICY

-   SUPPORTS, STRENGTHS, CHOICES AND\' INCLUSION

-   TRENDS IN STATE LEADERSHIP

**Message from the President on the Fifth Anniversary of the Americans
with Disabilities Act**

*As we mark the* fifth *anniversary of the Americans with Disabilities
Act, I am delighted to join citizens across the country in celebration.*

*With enactment of this landmark civil rights law, America became the
first country in the world to make equal rights and equal opportunity a
guarantee for its 49 million citizens with disabilities. Across the
nation, our people began coming together to ensure equal access to the
American dream.*

*Today, thanks to these efforts, Americans are recognizing that we all
gain as citizens of a country in which everyone can participate* fully.
*And America is reaping the benefits of a more inclusive society.
Employers have a larger pool of qualified workers. Businesses are
opening doors to new customers. State and local governments are enjoying
broader citizen participation. Most important, individuals are being
judged not by their disabilities, but by their abilities.*

*We have made great strides as a nation in fulfilling America\'s promise
of common sense justice. Still, much remains to be done. My
administration is firmly committed to the vigorous implementation and
enforcement of the ADA. No longer will Americans with disabilities be
kept from realizing their dreams by closed doors or narrow minds.
Building partnerships between government and business and people
throughout the land, we best celebrate this day by rededicating
ourselves to creating a society of equal access and equal rights for
all.*

*/s/ Bill Clinton, July 18, 1995*

***WHY INCLUSION?***

The President\'s Committee on Mental Retardation (PCMR) has chosen
inclusion throughout life as the theme for its National Collaborative
Academies, to be held in 1995 through 1999 to reach all 50 States. This
theme was selected because it resonates for people with mental
retardation and families, because there is widespread interest in
inclusion across the States, and because Federal, State and local
policies increasingly focus on promoting inclusion and participation of
people with disabilities.

*People with mental retardation want to be treated equally, and they
don\'t want to*

*be labeled anymore. They want most of all to close down institutions
and to be a part of their community*.

The opposite of inclusion is exclusion. Although the majority of people
with mental retardation were never institutionalized, many experienced
exclusion from the schools and the social lives of their communities. As
society has become more complex and services more specialized,
opportunities for inclusion may actually have decreased.

Our challenge now is to consider the ways that each individual with
mental retardation can be included rather than excluded, consistent with
that person\'s unique talents, needs and choices. This approach presumes
that there is no single formula for inclusion or definition of inclusion
that fits every person with mental retardation. It does presume that no
one should be excluded arbitrarily, on the basis of their mental
retardation or some other disability label, from being part of their
family and community.

**WHAT PEOPLE WITH MENTAL RETARDATION ARE SAYING ABOUT INCLUSION**

Tia Nelis, a self-advocate from Illinois, is co-chair of the national
organization Self-Advocates Becoming Empowered and an employee of the
University of Illinois at Chicago. In 1994 she told the PCMR conference
on the national reform agenda about an international conference she had
attended, and the two items that stood out on the self-advocates\' list:

> \(1\) People wanted to be treated equally, and they didn\'t want to be
> labeled anymore. They wanted people to call them by their names and
> not by their disability, and to look at their abilities and not their
> disabilities.
>
> \(2\) They wanted most of all to close down institutions and to have
> people be a part of their community.

Ms. Nelis commented, \"I have a job. I am very lucky to have a job
working with people with disabilities and working with people without
disabilities. Most of my friends do not have those opportunities. They
work in a sheltered workshop, and they earn 79 cents every two weeks.
They don\'t get the opportunities that I do\" (PCMR, 1994a).

When representatives of the Wisconsin Council on Developmental
Disabilities conducted a comprehensive statewide survey of individuals
with mental retardation and other developmental disabilities, they asked
each person the following question: If you had one wish, what would it
be? The responses ranged from individual wishes for trips and consumer
goods to personal goals in employment and having a better place to live.
Although there was great variation in the answers to the question,
inclusion in community living, social activities and work was a common
theme throughout many of the responses, as illustrated by the following
examples:

*One Wish:*

• To participate more with others and to be accepted by the community.

• To be together as a family.

• To go to a regular school and participate in normal activities.

• Opportunity for higher education and meaningful work.

• To visit my girlfriend every Sunday.

• Someone to go shopping with.

• To have a community living option.

• To live in an apartment and to have a job saving people\'s lives.

• To live in my own apartment with a friend.

• To move to better living quarters and have more money.

• To be out of a health care center living independently in a supported
apartment.

• That I could get my own apartment and know how the city bus system
works. • Would like to have a \"real\" job.

• To have a full time, good paying job.

• To have a job and earn some money.

• A job so I could make some friends, not be so isolated at my home.

• I wish I could do more things such as have a job and a better school
program.

• Have a full time job and not be at a sheltered work shop.

• To get a job I like that I make enough money to support myself.

• That there was a more handicap-accessible facility to use. Whoever
designed accessible bathrooms did **NOT** use a wheelchair.

• More accessible places to go.

• To be able to communicate and thus socialize more. To be able to show
people what I can accomplish.

• To have a working electric wheel chair.

• To have more opportunity to play and be with other children.

• To be able to do things more with other kids, to be understood and
accepted.

• That we\'d live in an \"understanding\" society.

• That I could be an independent adult, keep my job, have friends and be
able to visit my dad as often as I would like.

• To be as independent as possible and to fit into the mainstream of
society (Wisconsin Council on Developmental Disabilities, 1990).

**WHAT FAMILIES ARE SAYING ABOUT INCLUSION**

The 1994 PCMR national agenda conference also heard from parents of
individuals with mental retardation. Koquese Collins of Detroit,
Michigan, talked about her son Brian, who is 11 years old and has Down
Syndrome. Although he carries the label \"trainably mentally impaired,\"
his mother said it is more important to know that Brian \"is an active,
compassionate, and extremely friendly young man \... He is my son, a
brother, a playmate, a friend, and my family. One could characterize our
household as an inclusive environment that works.\" She talked about her
hopes for Brian as follows:

My sincerest hope-a wish list, if you will-is that Brian will grow up
into an adult who can live as independently as possible; he will have a
job, make sound decisions, fall in love, and start his own family. I
dream of the day that he will bring \"Brian may never his children, my
grandchildren, to visit grandma, and I can spoil them. I know this is
possible because I know Brian the person, not just his disability. Brian
may never be the President of the United States, but he deserves every
chance at as much support available to ensure that he has the brightest
future possible, so that he can become a fully active member in his
community.

Craig\'s parents, Dawn and Don Merriman of Salina, Kansas, also talked
about their hopes for their son\'s future, as well as some of their
struggles in the past. In 1979, when Craig was born, the only
comprehensive services for children with complex disabilities were in
large State-run institutions. The Merrimans and others began asking why
full-service delivery systems couldn\'t be developed in the community
and why children could be covered in institutions under Medicaid
regardless of their family\'s income, but not if they were living at
home. The Merrimans have seen some improvements over Craig\'s lifetime,
and he has been able to stay with his family and to attend local
schools. They described their vision for Craig and for other children
with severe disabilities:

Our dreams are for Craig to own his own home, to own his own car so that
he does not have to rely on a transportation system and he can go where
he chooses when he chooses, for Craig to have a sense of community, that
he appreciates other people and they appreciate him, a job that he loves
like we love our jobs, friends of all ages and all abilities, and that
people in his community will recognize the unique talents, gifts, and
characteristics of one another.

Some parents of institutionalized people with mental retardation see
inclusion somewhat differently. They value the protective institutional
environment as important for their relative, particularly for those who
have profound or severe mental retardation and complex medical care
needs. It is very understandable that families who feel their relative
is happy and getting excellent care will feel uncomfortable about a
total move to inclusion that might undo the choices they have made.

Bertha Atkin, parent of a woman who moved to the community after 20
years in a large State institution, understands these feelings from her
own experience. She described her perspectives on community inclusion as
follows:

> When the court ordered the institution closed, my husband and I led
> the opposition. A few years back, they said the institution was the
> best place for Judy. We were told that her disability was too severe
> for her to stay at home. Now, all of a sudden, it was
> \"inappropriate.\" We were all confused, surprised and many of us were
> angry. Then as we saw people leaving one-by-one, we started to
> investigate a little further. Then we began to understand. Living in
> the community allows Judy to grow more than she could ever grow in the
> institution.

Source: *Deinstitutionalization - From Theory to Practice. A Monograph*

> *for State Legislators* (Records, 1994).

As States and local mental retardation/developmental disability
authorities develop strategies for inclusion, it is important to respect
a full spectrum of feelings about inclusion and individual choice, and
to support those struggling with inclusion to make the best possible
choices.

**MOVING FROM PROGRAMS TO INDIVIDUAL SUPPORTS**

*The aspirations of people with developmental disabilities to individual
empowerment and community membership have brought about a shift from
residential services to community­based supports. This change, however,
continues to meet resistance. To ensure inclusion for all individuals
with disabilities, professionals working in the human services field
need practical strategies based on a community supports paradigm.*

Creating Individual Supports for People with Developmental Disabilities:
A Mandate

for Change at Many Levels (Bradley, Ashbaugh and Blaney, Eds., 1994)

Services to individuals with mental retardation and other developmental
disabilities can be characterized in relation to the dominant approaches
in various periods, and the availability of publicly financed services.
The change in paradigms underlying current and emerging practices in the
field of mental retardation/developmental disabilities is described by
the current vice chair of the PCMF, Valerie Bradley, as follows:

> The initial metamorphosis began in the late 1960s and is frequently
> described as a shift from the medical model of care to the
> developmental model or from the custodial model to the rehabilitation
> model. This transition was the first inkling of. .. a paradigm shift.
> Only now, in the 1990s, is it possible to view the full outlines of
> the shift as the dust raised by a quarter century of constant turmoil
> is beginning to settle.
>
> This evolutionary process can be broken into three distinct stages. In
> the first stage, the era of institutionalization, dependence and
> segregation (ending roughly in the mid-1970s), the governing norms
> were primarily medical and the objective was to separate people who
> were designated sick and vulnerable from the rest of society. This era
> ended with the advent of the developmental model and a growing body of
> research showing the inadequacies of institutional care. This ushered
> in the second stage, the era of deinstitutionalization and community
> development (beginning in the mid-1970s), which was marked by the
> creation of group homes and sheltered workshops that were physically
> integrated in the community but that emphasized the provision of
> specialized services in socially segregated settings. The third and
> emerging stage is the era of community membership, which is marked by
> an emphasis on functional supports to enhance inclusion and quality of
> life as defined by physical as well as social integration (Bradley,
> 1994).

The changes in the approach to individuals and services across the three
eras are summarized in Table 1.

Growing consensus around the paradigm of individual supports,
empowerment of individuals and community membership is reflected in the
increasing availability of individualized supported living arrangements,
the values espoused in Federal and State legislation, and the emergence
of quality assurance systems that measure outcomes related to individual
choices, relationships, community participation, and the person\'s
satisfaction with the supports and services being received.

Table 1 The Evolution in Services and Supports

+-----------------------+--------------+--------------+--------------+
| > Focal Questions     | > Era of     | > Era of     | > Era of     |
|                       | >            | > Deinsti-   | > Community  |
|                       | Institutions |              |              |
+-----------------------+--------------+--------------+--------------+
|                       |              | > tut        | > Membership |
|                       |              | ionalization |              |
+-----------------------+--------------+--------------+--------------+
| > Who is the person   | > The        | > The client | > The        |
| > of concern?         | > patient    |              | > citizen    |
+-----------------------+--------------+--------------+--------------+
| > What is the typical | > An         | > A group    | > A          |
| > setting?            | >            | > home,      | > Person\'s  |
|                       |  institution |              | > home,      |
+-----------------------+--------------+--------------+--------------+
|                       |              | > workshop,  | > local      |
|                       |              | > special    | > business,  |
|                       |              |              | > the        |
+-----------------------+--------------+--------------+--------------+
|                       |              | > school, or | >            |
|                       |              |              | neighborhood |
+-----------------------+--------------+--------------+--------------+
|                       |              | > classroom  | > school     |
+-----------------------+--------------+--------------+--------------+
| How are the services  | > In         | In a         | > Through a  |
| organized?            | > facilities | continuum of | > unique     |
+-----------------------+--------------+--------------+--------------+
|                       |              | > options    | > array of   |
|                       |              |              | > supports   |
+-----------------------+--------------+--------------+--------------+
|                       |              |              | > tailored   |
|                       |              |              | > to the     |
+-----------------------+--------------+--------------+--------------+
|                       |              |              | > individual |
+-----------------------+--------------+--------------+--------------+
| > What is the model?  | Custo        | > De         | > Individual |
|                       | dial/medical | velopmental/ | > support    |
+-----------------------+--------------+--------------+--------------+
|                       |              | > behavioral |              |
+-----------------------+--------------+--------------+--------------+
| > What are the        | > Care       | > Programs   | > Supports   |
| > services?           |              |              |              |
+-----------------------+--------------+--------------+--------------+
| > How are services    | Through a    | > Through an | Through a    |
| > planned?            | plan of      |              | personal     |
+-----------------------+--------------+--------------+--------------+
|                       | > care       | > in         | > futures    |
|                       |              | dividualized | > plan       |
+-----------------------+--------------+--------------+--------------+
|                       |              | >            |              |
|                       |              | habilitation |              |
|                       |              | > plan       |              |
+-----------------------+--------------+--------------+--------------+
| > Who controls the    | > A          | > An         | > The        |
| > planning            | >            |              | > individual |
|                       | professional |              |              |
+-----------------------+--------------+--------------+--------------+
| > decision?           | > (usually   | > inter      |              |
|                       | > an MD)     | disciplinary |              |
+-----------------------+--------------+--------------+--------------+
|                       |              | > team       |              |
+-----------------------+--------------+--------------+--------------+
| > What is the         | > Standards  | > Team       | > A circle   |
| > planning context?   | > of         | > consensus  | > of support |
+-----------------------+--------------+--------------+--------------+
|                       | >            |              |              |
|                       | professional |              |              |
+-----------------------+--------------+--------------+--------------+
|                       | > practice   |              |              |
+-----------------------+--------------+--------------+--------------+
| > What has the        | > Basic      | > Skill      | > Self-d     |
| > highest priority?   | > needs      |              | etermination |
+-----------------------+--------------+--------------+--------------+
|                       |              | >            | > and        |
|                       |              | development, | > r          |
|                       |              |              | elationships |
+-----------------------+--------------+--------------+--------------+
|                       |              | > behavior   |              |
+-----------------------+--------------+--------------+--------------+
|                       |              | > management |              |
+-----------------------+--------------+--------------+--------------+
| > What is the         | > Control or | > To change  | > To change  |
| > objective?          | > cure       |              | > the        |
+-----------------------+--------------+--------------+--------------+
|                       |              | > behavior   | >            |
|                       |              |              |  environment |
|                       |              |              | > and        |
+-----------------------+--------------+--------------+--------------+
|                       |              |              | > attitudes  |
+-----------------------+--------------+--------------+--------------+

Adapted from \"The New Service Paradigm\" (Bradley, 1994).

Fully implementing the new approach will not be easy. As with any other
significant change in thinking, the new era in mental
retardation/develop­mental disabilities challenges beliefs,
organizational structures, relationships and policies that the field has
grown comfortable with. It is also a particular challenge to extend new
approaches to people whose mental retardation is more severe, or who
have multiple disabilities. The words of individuals with mental
retardation and families, however, are a strong reminder that we all
need to work together to make implementation a reality, including facing
up to the need for changes in thinking, relating, and doing. Evolutions
in national policy form some of the support for these necessary changes.

**NATIONAL POLICY**

The transformation of national policy affecting people with mental
retardation over the past 25 years represents one of the great social
reform movements of our time. Policies are now in place at the Federal
level that affirms the basic rights and fundamental human dignity of
Americans with mental retardation. Several States have enacted
legislation further defining these rights.

National policy has been transformed through prohibitions against
discrimination on the basis of disability in the Rehabilitation Act of
1973 and the Americans with Disabilities Act of 1990, policy goals in
the Developmental Disabilities and Bill of Rights Act, education
mandates in the Individuals with Disabilities Education Act, creation of
the Medicaid Home and Community-Based Services waiver program, and
supported work and presumptions of feasibility for vocational
rehabilitation in amendments to the Rehabilitation Act.

As described in *A Journey of Renewal for All Americans: Report to the
President* (PCMR, 1994b), however, great needs still exist. What matters
most to people with mental retardation and their families is that which
is important to all Americans: to belong to a larger community that
endows its members with dignity grounded in a fundamental respect for
each individual. Old service models, based on exclusion, isolation and
individual \"impairments\" or \"deficits,\" are still the primary
resource for too many people with mental retardation and their families.
New models, anchored to the values of inclusion, collaboration and
individual determination, are emerging-but much more needs to be done.

**SUPPORTS, STRENGTHS, CHOICES AND INCLUSION**

Changes in public policy and social attitudes reflect the growing body
of knowledge in mental retardation and other developmental disabilities
that is beginning to shape our service systems at the local, State and
national levels. The Work Group on Long-Term Care Reform at the PCMR
Presidential Forum, April 1994, laid out the following description of
emerging responses and challenges:

> In mapping out future long-term service and support policies, the
> group agreed that one of the major challenges facing the field of
> mental retardation and developmental disabilities is to live
> simultaneously with the consequences of the past, manage the existing
> service system, and plan for the future. Unlike many other areas of
> human services policy, past decisions regarding service modalities and
> program placements cannot be altered easily, since the customers of
> the developmental disabilities service system typically require
> assistance that spans decades, rather than a few months or years. For
> example, the decision during the early years of this century to rely
> on large, multi-purpose residential facilities as the principal
> modality for meeting the ongoing service and support needs of people
> with lifelong disabilities continues to be a major factor in the
> policymaking equation, long after most consumers, parents and
> professionals have embraced the concept of community and
> family­centered services. The most important policy issue the field
> faces, therefore, is to find ways of accelerating the transition to a
> system of services that supports individuals in making meaningful
> choices about how they live their lives as participating, valued
> members of the community, while not abandoning society\'s obligation
> to people who are still being served in facilities and programs which
> no longer conform to contemporary views regarding \"best practices.\"
>
> In order to achieve such a transformation, the work group believes
> that it is essential to begin by articulating a vision of the future.
> It is the work group\'s belief that such a vision should include the
> following elements:
>
> •The provision of services and supports tailored to the needs and
> aspirations of each individual, rather than a \"continuum\" of
> prefabricated long-term care program options;
>
> •An emphasis on consumer choices either made directly or, where
> necessary, through a facilitator;
>
> •The opportunity for people with lifelong disabilities to have dreams
> and the chance to achieve them;
>
> •Outcome-based accountability systems that operate on all levels of
> the service delivery system;

•Children with disabilities should live with families;

> • Independence and productivity are highly valued service outcomes for
> all consumers, and public policy and funding should be directed toward
> eliminating barriers to achieving such outcomes;

•Eligibility should be based upon the individual\'s needs and not
labels;

> People closest to those in need of supports should be empowered to
> help them realize their personal goals, wherever possible;
>
> •Funding should be based on individual needs and wants, not program
> slots;
>
> •Individuals who work directly with consumers and their families
> should be given considerable latitude in designing and carrying out
> support strategies;
>
> •Emphasis should be placed on developing community partnerships in
> which responsibility is shared by individuals with disabilities, their
> families, and friends, as well as the community at large. The role of
> formal services should be modulated to take into account such
> informal, indigenous community support networks; and
>
> • Quality assurance mechanisms should be strengthened, with the
> emphasis on achieving meaningful individual outcomes; people with
> disabilities should be involved in monitoring the quality of services
> and supports that are provided.

*The National Reform Agenda and People with Mental Retardation: Putting
People First* (PCMR, 1994a)

**TRENDS IN STATE LEADERSHIP**

The States have been largely responsible for leadership in meeting the
needs of people with mental retardation and their families, within the
context of Federal programs and policies. A report of the Developmental
Disabilities Task Force of the National Conference of State Legislatures
(NCSL) noted the many innovations that have been developed at the State
and local level. These innovations include supporting people to make
personal choices about where and how they live, focusing especially on
supporting people in \"natural\" settings:

•Children growing up in a home with their family, rather than in an
institution;

> •Children going to a neighborhood day care center or home, instead of
> to a segregated program for children with disabilities;
>
> •Children attending regular preschool and neighborhood school classes,
> rather than being isolated in a \"special\" class;
>
> •Children and adults with disabilities participating in community
> activities with family and friends instead of being isolated with
> others who have disabilities; and
>
> •Persons with disabilities working side by side with persons without
> such disabilities in a competitive job, rather than being segregated
> in sheltered workshops (Wright, King and the NCSL Task Force on
> Developmental Disabilities, 1991).

Although each State is addressing its own agenda for people with mental
retardation, the context for innovation increasingly reflects values of
inclusion, choice and support. These values are often found in the
mission statements of State mental retardation/developmental disability
service agencies, as reflected in the following examples from around the
nation:

> **Alabama**: It is the mission of the Division of Mental Retardation
> to provide for a system of effective and efficient services to the
> citizens of Alabama with mental retardation and/or developmental
> disabilities. This system of services endorses the precepts that
> services shall be consumer and family driven; shall be provided in the
> least restrictive setting; shall maximize consumer and family input;
> shall use existing support systems; shall be outcome oriented; and
> shall utilize family, consumer, and employee satisfaction as major
> indicators of quality.
>
> **Colorado:** The mission of the Colorado Division for Developmental
> Disabilities is to join with others to offer the necessary supports
> with which all people with developmental disabilities have their
> rightful chance to:

•Be included in Colorado community life.

•Make increasingly responsible choices.

•Exert greater control over their life circumstances.

•Establish and maintain relation­ships and a sense of belonging.

•Develop and exercise their competencies and talents.

•Experience personal security and self-respect.

> **Connecticut**: The DMR\'s mission is to join with others to create
> the conditions under which all persons with mental retardation
> experience:

•Presence and participation in Connecticut town life.

•Opportunities to develop and exercise competence.

•Opportunities to make choices in the pursuit of a personal future.

•Good relationships with family members and friends.

•Respect and dignity.

> **Kansas**: The Kansas Department of Social and Rehabilitation
> Services empowers individuals and families to achieve and sustain
> independence and to participate in the rights, responsibilities and
> benefits of full citizenship by creating conditions and opportunities
> for change, by advocating for human dignity and worth, and by
> providing care, safety and support in collaboration with others.
>
> **Massachusetts**: The Department of Mental Retardation is composed of
> people dedicated to creating, in cooperation with others, innovative
> and genuine opportunities for individuals with mental retardation to
> participate fully and meaningfully in, and contribute to, their
> communities as valued members.
>
> **Utah**: The mission of the Division of Services for People with
> Disabilities is to promote opportunities for persons with disabilities
> to participate fully in Utah life.

State expenditures for mental retardation/developmental disabilities
services and supports have significantly increased over the past several
years, considerably beyond inflation rates. The strongest area of
increase has been for home- and community-based services: individual and
family supports, early intervention, educational services, community
residences, supported employment, and, in some States, supports for
recreational activities, making friends, and retirement options.

Increases in the total public spending effort for services to people
with mental retardation/developmental disabilities and, in some cases,
their families, have been tracked by the Institute on Disability and
Human Development, University of Illinois at Chicago since the late
1970s. From 1977 to 1992, total spending grew from \$3.457 billion to
\$17.228 billion, a growth rate of 124% after adjusting for inflation
(Braddock, Hemp, Bachelder, and Fujiura, 1995). Although increases in
spending for institutional services have contributed, the major
increases have been in home- and community-based services.

Looking at mental retardation/developmental disabilities spending per
\$1,000 of personal income reveals growth from \$2.27 per \$1,000 in
1977 to \$3.33 per \$1,000 in 1992. As illustrated in Table 2, the
portion of spending for community services has increased during that
time, exceeding the portion spent on large (16 person or more)
congregate and institutional facilities since 1989.

Virtually every State has reduced the population of its large public
institutions overthe past 25 years. In 1967, State institutions housed
194,650 the 65,735 in State facilities on

institutions over the past 25 years. June 30, 1994. In three States (New
Hampshire, Rhode Island and Vermont) and the District of Columbia, the
State institutions have been closed; altogether, 115 large State
facilities in 32 States were closed between 1960 and 1994, with 79 of
these closed between 1988 and 1994 alone. States project an additional
20 closures between 1995 and 1998 as illustrated in Figure 1 (Prouty and
Lakin, 1995).

Mental Retardation/ Developmental Disabilities Spending Per \$1,000 of
Personal Income: 1977, 1982, 1987, and 1992

Table 2

+----+-------------------+--------------------+----------------------+
| >  | > Total Spending  | > Spending Per     | > Spending Per       |
| Ye | > Per \$1,000     | > \$1,000 of       | > \$1,000 of         |
| ar |                   |                    |                      |
|    | of Personal       | Personal Income    | Personal Income for  |
|    | Income            | for                | Care in              |
|    |                   |                    |                      |
|    |                   | Community Services | Congregate           |
|    |                   |                    | Facilities (16       |
|    |                   |                    |                      |
|    |                   |                    | persons +)           |
+----+-------------------+--------------------+----------------------+
| >  | **\$2.27**        | **\$0.57**         | **\$1.70**           |
| ** |                   |                    |                      |
| 19 |                   |                    |                      |
| 77 |                   |                    |                      |
| ** |                   |                    |                      |
+----+-------------------+--------------------+----------------------+
| >  | **\$2.58**        | **\$0.86**         | **\$1.72**           |
| ** |                   |                    |                      |
| 19 |                   |                    |                      |
| 82 |                   |                    |                      |
| ** |                   |                    |                      |
+----+-------------------+--------------------+----------------------+
| >  | **\$2.06**        | **\$1.36**         | **\$1.60**           |
| ** |                   |                    |                      |
| 19 |                   |                    |                      |
| 87 |                   |                    |                      |
| ** |                   |                    |                      |
+----+-------------------+--------------------+----------------------+
| >  | **[\$3.           | **[\$1             | **[\                 |
| ** | 33]{.underline}** | .90]{.underline}** | $1.43]{.underline}** |
| [1 |                   |                    |                      |
| 99 |                   |                    |                      |
| 2] |                   |                    |                      |
| {. |                   |                    |                      |
| un |                   |                    |                      |
| de |                   |                    |                      |
| rl |                   |                    |                      |
| in |                   |                    |                      |
| e} |                   |                    |                      |
| ** |                   |                    |                      |
+----+-------------------+--------------------+----------------------+

Source: *The State of the States in Developmental Disabilities*
(Braddock et al., 1995).

Figure 1

Numbers of Large State MR/DD Facilities and Units Closed and Planned for
Closure, 1960-1998

![](media/image3.png){width="5.999305555555556in"
height="2.5194444444444444in"}

As more States have focused on helping children with mental retardation
to live with their families or in a substitute family home, the
population of children and youth in State institutions has dropped
dramatically. As illustrated in Figure 2, the number of State
institution residents under the age of 21 as of June 1994 was 4,001,
compared to 91,600 in 1965. The drop is particularly significant for
children under the age of 15, even with the national increase in
children surviving with major medical care needs.

> **Figure 2 Total and Childhood (0-21 Years) Populations of Large State
> MR/DD Facilities, 1950-94**

![](media/image4.png){width="5.346527777777778in"
height="1.676388888888889in"}

**250000 225000 200000 175000 150000 125000 100000 75000 -I 50000
25000**

> **0**
>
> **1950 1955 1960 1965 1970 1975 1980 1985 1990 1994**

*Source: Children and Youth in State MRIDD Institutions* **(Lakin,
1995).**

Nearly all States have greatly expanded the availability of community
residential options for people leaving the State institutions and for
others, primarily adults, who do not continue to live with their
families. Although some States have funded services in large private
institutions and nursing homes, the strongest growth has been in the
development of small privately-operated homes in the community. The
number of smaller community residential service sites (i.e. settings in
which 15 or fewer people with mental retardation/developmental
disabilities live, excluding people living with their families) has
grown from 11,008 in June 1977 to 63,654 as of June 1994. Even more
remarkable has been the growth in residential settings with six or fewer
residents, which have increased from 6,876 in June 1977 to 55,784 in
June 1994, and have more than doubled (from 26,664) in just the seven
years between June 1987 and June 1994.

The significance of these changes to the numbers of persons with mental
retardation/developmental disabilities living in residential settings of
different sizes is shown in Figure 3. From 1977 to 1992, the number of
individuals served in one-six bed settings rose from 20,409 (7.0% of the
total number receiving residential services) to 117,920 (34.0% of the
total). This number rose to 145,976 by June 1994, reflecting the growing
preference for small settings that can be inclusive homes in the
community of choice.

During the same period, the number served in large (16 persons or more)
congregate settings declined from 207,363 (71.1%) to 123,633 (35.6%).
Use of nursing home facilities for people with mental retardation also
has declined, while there have been large increases in the use of
residences with 7-15 participants. There are also many differences among
the States in the specific configurations of residential services.
Overall, however, the national trend is clearly in the direction of
smaller, less institutional residential options, especially those
housing six or fewer individuals.

Figure 3

Individuals Served by Size of Residential Setting:

FYs 1977 and 1992

**16+ Bed Settings 207,363 71.1%**

![](media/image5.png){width="1.5534722222222221in" height="1.54375in"}

**Nursing Facilities 43,755 15.0%**

**1-6 Bed Settings 20,409 7.0%**

**7-15 Bed Settings 20,024 6.9%**

1977 Residential Services Total: 291,551

**16+ Bed Settings 123,633 35.6%**

**7-15 Bed Settings 63,892 18.4%**

![](media/image6.png){width="1.55in" height="1.5402777777777779in"}

**Nursing Facilities 41,429 11.9%**

**1-6 Bed Settings 117,920 34.0%**

1992 Residential Services Total: 346,874

Source: *The State of the States in Developmental Disabilities*
(Braddock et al., 1995).

Nationally, the average size of residential settings for people with
developmental disabilities has dropped from 22.5 people per residence in
1977 to 4.9 in 1994. There is great variety among the States, however,
in the extent to which community residences have been developed and the
relative emphasis on small community settings. As of June 1994, the
average number of individuals per residential setting ranged from more
than 12 in Virginia, Illinois, Kansas and Mississippi to less than 2 in
Alaska, Hawaii, New Hampshire, and Vermont. In 1994, a majority of
persons receiving residential services in settings for persons with
mental retardation/developmental disabilities (excluding nursing homes)
lived in settings with six or fewer residents in half (25) of all
States.

**The Medicaid Home and Community Based Services Waiver**

The States\' expanded use of Medicaid Home and Community-Based Services
(HCBS) waivers is a prime example of how States have taken a Federal
policy option and used it to expand service options for people with
mental retardation/developmental disabilities. Through the HCBS waiver
program, States can design flexible services and supports to help people
leave institutions or avoid institutional placement in the first place.
The Medicaid funding for the waiver means that Federal dollars pay a
minimum of 50% of waiver services, based on each State\'s Medicaid
matching rate.

Waiver services are also usually much less costly per person than the
institutional services they replace. A recent (1994) analysis of
annualized the HCBS waiver costs compared with costs for placement in a
Medicaid-funded Intermediate Care Facility for persons with Mental
Retardation and related conditions (ICF/MR), found that waiver costs per
person were 41% of ICF/MR costs. When Medicaid and related costs were
added, the average cost for individuals in the HCBS waiver program was
\$33,444 per year, compared to \$67,681 for those served through the
ICF/MR program (Smith and Gettings, 1994).

States have moved rapidly over the past decade, and especially since the
late 1980s, to expand their HCBS programs, as illustrated in Figure 4.
Combined State and Federal spending on the HCBS waiver services is
projected to reach \$4.5 billion in 1995, and at least \$5.5 billion by
1996 (Smith and Gettings, 1994).

![](media/image7.png){width="5.995833333333334in"
height="2.973611111111111in"}

**Source: *The HCB Waiver and CSLA Programs: An Update on Medicaid\'s
Role in Supporting People with Developmental Disabilities in the
Community* (Smith and Gettings, 1994).**

The number of participating States and the total number of the HCBS
waivers serving people with mental retardation/developmental
disabilities also has increased significantly, rising from 12 waivers in
12 States in 1982 to 80 waivers in 49 States in 1994. Figure 5
illustrates the sharp increase in participants, from 45,203 in 1990 to
134,717 in 1994. Since 1990, the annual compound growth rate in
participants has been 31.4%, with the number of HCBS waiver participants
almost doubling every three years (Smith and Gettings, 1994).

![](media/image8.png){width="5.9944444444444445in"
height="3.513888888888889in"}

Federal policy has facilitated this expansion, by removing some of the
restrictions on State waiver expansion and by efforts to streamline the
approval process. A 1993 survey of the States regarding their current
use of the HCBS program for individuals with mental retardation/
developmental disabilities and their future waiver program plans by the
National Association of State Directors of Developmental Disabilities
Services, Inc. (NASDDDS) produced the following conclusions:

-   States are continuing to expand their HCBS waiver programs for
    people with developmental disabilities at a rapid pace. In 1994,
    States expected to add as many participants as were being served
    nationwide in 1988. Although the rate of growth is likely to
    moderate over the near term, it appears likely that the number of
    the HCBS waiver participants will pass the number of ICF/MR
    residents in 1995 and reach 170,000 by 1996.

-   State-Federal outlays for the HCBS waiver services also have grown
    very rapidly. Per capita spending for waiver services continues to
    be substantially less than spending on ICF/MR services. However,
    wide differences persist among the States in the extent to which
    they use the HCBS waiver program to support community services for
    people with developmental disabilities.

-   Although the primary explanations for the rapid pace of expansion in
    the HCBS waiver services for people with developmental disabilities
    nationwide is the extension of services principally to individuals
    in the community, the program continues to play a very significant
    role in paying for the community placement of residents of large,
    State-operated facilities and, more recently, of individuals served
    in other types of ICFs/MR, such as larger private facilities. In
    addition, States have used the waiver program to help finance the
    community placement of nursing facility residents with developmental
    disabilities. Between 1991 and 1993, nearly 9,000 individuals
    previously served in large, State-operated facilities, other
    ICFs/MR, and nursing ,homes left these facilities to receive
    community services and supports through the HCBS waiver program.
    These individuals account for roughly 18% of the nationwide increase
    in program participants during that two year period.

-   States are reconfiguring their HCBS waiver programs as well as
    expanding they. While States appear to be consolidating the number
    of programs they operate, they also have significantly expanded the
    number of services and supports available to program participants.
    The most noteworthy area of expansion is the ongoing addition of
    community living options. The period from 1992 - 1994 also saw a
    number of States adding alternative non-residential community
    supports to their programs as well as choosing to cover such
    individual supports as home modifications and assistive technology.

-   State program managers expect that HCBS waiver programs will place
    greater emphasis on the delivery of person-centered services, and
    supported living and person-centered planning are taking on greater
    importance in State waiver programs. The waivers also continue to
    play an integral role in helping finance the community placement of
    people with developmental disabilities who are moving out of
    institutional settings. At the same time, they also anticipate
    increased difficulties in securing additional matching dollars to
    pay for program expansions.

*The HCB Waiver and CSLA Programs: An Update on Medicaid\'s Role in
Supporting People with Developmental Disabilities in the Community*
(Smith and Gettings, 1994) describes the HOBS waiver trends as well as
summaries of each State\'s HCBS waivers as of FY 1994. The NASDDDS
analysis noted the following general policy trends among the States in
their HCBS waiver programs:

• The coverage of \"personal supports\" intended to assist people to
participate more actively and regularly in community activities will
become more commonplace.

• More States will over participants the option of having a \"personal
agent\" to assist them in accessing supports and addressing day-by-day
problems associated with living in the community.

• An increasing number of States will discard traditional service
planning methods and adopt person-centered planning instead as their
principal tool for identifying the HCBS waiver services and supports of
greatest value to program participants.

• Quality assurance and enhancement systems will continue to evolve
toward outcome­based approaches, as part of the overall restructuring of
quality assurance systems in mental retardation/developmental
disabilities services (Smith and Gettings, 1994).

NASDDDS also identified the influence of State participation in the
Community Supported Living Arrangements (CSLA) program in these trends,
in particular the emphasis on individual supports, the personal agent
concept, and person-centered planning.

NASDDDS concluded its review of the HCBS waiver program for people with
developmental disabilities as follows:

> For more than a decade, the HCB\[S\] waiver program has served as a
> powerful catalyst in shifting Medicaid financing of community services
> for people with developmental disabilities beyond the confines of
> facilities/programs and into more contemporary and satisfactory
> approaches to supporting people in their local communities (Smith and
> Gettings, 1994).

Related efforts to support individuals with mental retardation in
reaching their goals are described in the rest of this resource.

**The Florida Story**

Independent Support Coordination is offered to participants in the
State\'s HCBS waiver program. It replaces traditional
\"gatekeeper\'/\'service director\" case management with a \"personal
agent\" model. Independent support coordination is designed to provide
people with developmental disabilities with a person-centered,
streamlined, flexible, and accessible method of coordinating services
and supports selected by the individual and involved family members.
Goals include: (a) promoting self-advocacy and community inclusion in
all life areas; (b) promoting the use of natural supports; and (c)
coordinating specialized services with other programs and resources.

Support coordinators work with the person, family members and other
people important to the individual in developing Individual or Family
Support Plans. Coordinators work with the individual and their team in
identifying and implementing the support strategies they select. In
other words, coordinators serve as \"personal agents\" in putting the
support strategy into action.

Support coordinators may not be employed by a service provider agency
and may not furnish other services to the individual. They may be
self-employed or work for agencies, provided that the agency does not
furnish other developmental disabilities services. People with
developmental disabilities select their support coordinator. In addition
to meeting education and experiential requirements, support coordinators
must receive at least 60 days of pre-service training under a curriculum
issued by the Developmental Services Office. Support coordinators may
serve no more than 35 individuals with disabilities, must accept all
referrals, and must be continuously available to consumers and their
families.

Adapted from Smith and Gettings, 1994.

**II. MENTAL RETARDATION AND RELATED DISABILITIES**

• DEFINITIONS PREVALENCE OF MENTAL RETARDATION AND

• DEVELOPMENTAL DISABILITIES

• SERVICE PLANNING IMPLICATIONS

Within the group of people diagnosed as having mental retardation there
is as much variety in abilities, accomplishments and motivation as among
people without mental retardation; arguably, there is more. Equally
important, a substantial number of people who are identified as having
mental retardation at any one time of their lives will not be so
identified throughout their lives. Finally, it must also be recognized
that mental retardation is a highly stigmatizing label; that is, it
suggests to those labeled as well as to the people they meet in daily
life a set of undesirable characteristics, which over the years have
ranged from \"helpless\" and \"childish\" to \"dangerous\" and
\"uncontrollable.\"

Many people labeled with mental retardation and many of their allies
recognize that how people are perceived by others has a strong effect on
how they are treated. They want to do away with the label of mental
retardation, or at least find one that is more positive. Unfortunately,
the history of such efforts suggests changing language often is only a
temporary remedy until the new label engenders old prejudices.
\"Idiotic,\" \"imbecilic,\" \"feebleminded and \"mentally defective\"
are examples of precursors to the term \"mentally retarded,\" and at
least the later term implies slowness in cognitive development, (not a
permanent state of deficiency). Still the search for more positive ways
of distinguishing people who have abilities and potential to be a part
of and contributing to their communities, while still recognizing that
they need special supports to do so, is an important one. Among newer,
less stigmatizing terminologies that may be used instead of mental
retardation are \"cognitively impaired,\" \"intellectually challenged\"
and \"developmentally disabled.\" However, because current service
systems have been and remain constructed around mental retardation (and
related disabilities), some attention to its definition and implications
seems warranted.

**DEFINITIONS**

There was a time when mental retardation was defined strictly in terms
of an individual\'s score on a standardized intelligence measure or
\"IQ\" test. But modern definitions and diagnostic procedures also
require assessment of the person\'s \"adaptive behavior\"-how well the
person accomplishes the basic tasks of daily living and learning-as well
as a measured IQ level, to determine the presence of mental retardation.
The current definition used by the American Psychological Association,
for example, categorizes individuals as having mental retardation if
their IQ is below approximately 70 (statistically about 2.3% of the
population) an if they also have significant deficits or impairments in
adaptive behavior for their age. With standard error of measurement, a
diagnosis of mental retardation is possible through an IQ of 75.

**The AAMR DEFINITION**

Mental retardation refers to substantial limitations in present
functioning. It is characterized by significantly subaverage
intellectual functioning, existing concurrently with related limitations
in two or more of the following applicable skill areas: communication,
self-care, home living, social skills, community use, self-direction,
health and safety, functional academics, leisure, and work. Mental
retardation manifests before age 18.

The following four assumptions are essential to the application of the
definition:

> 1\. Valid assessment considers cultural and linguistic diversity as
> well as differences in communication and behavioral factors;
>
> 2.The existence of limitations in adaptive skills occurs within the
> context of community environments typical of the individual\'s age
> peers and is indexed to the person\'s individualized needs for
> supports;
>
> 3.Specific adaptive limitations often coexist with strengths in other
> adaptive skills or other personal capabilities; and
>
> 4.With appropriate supports over a sustained period, the life
> functioning of the person with mental retardation will generally
> improve (AAMR, 1992).

The AAMR definition is consistent with growing emphasis in the field on
looking at each person as an individual, in relation to their unique
strengths, desires, and needs for support, rather than focusing on
deficits and labels regarding the level of mental retardation. AAMR
guidelines on using the definition describe the importance of supports
and their relation to inclusion (integration) as follows:

> *Appropriate supports* refers to an array of services, individuals,
> and settings that match the person\'s needs. Although mental
> retardation may not be of lifelong duration, it is likely that
> supports will be needed over an extended period of time. Thus, for
> many individuals, the need for supports will be lifelong. For other
> individuals, however, the need for supports will be intermittent.
> Virtually all persons with mental retardation will improve in their
> functioning as a result of effective supports and services. This
> improvement will enable them to be more independent, productive, and
> integrated into their community. In addition, if individuals are not
> improving significantly, this relative lack of improvement should be
> the basis for determining whether the current supports are effective
> and whether changes are necessary (AAMR, 1992).

The new (1992) definition of mental retardation developed and endorsed
by the American Association on Mental Retardation places even greater
emphasis on adaptive behavior, now called adaptive skills. The new AAMR
definition also calls for a much more thorough assessment of the
person\'s interaction with his/her environment and the need for supports
within that environment *(Mental Retardation. Definition,
Classification, and Systems of Supports, 9th Edition,* AAMR, 1992). It
remains to be seen whether this new system will be widely adopted, and
what implications its identification will have on identifying the
prevalence of mental retardation.

As noted, the terminology \"developmentally disabled\" is frequently
used as an alternative to \"mentally retarded.\" In its origins,
however, it is a distinct concept, even if sometimes used as another
term for having mental retardation. The concept of *developmental
disability* moves away from a specific diagnostic label like mental
retardation to a focus on severity, functioning levels, and effects of
disability that originate in childhood. The Federal definition of
developmental disability, as provided in the *Developmental Disabilities
Assistance and Bill of Rights Act (P.L.* 103-230) is as follows:

The term \"developmental disability\" means a severe, chronic disability
of an individual 5 years of age or older that

> \(A\) is attributable to a mental or physical impairment or
> combination mental and physical impairments;
>
> \(B\) is manifested before the individual attains age 22; (C) is
> likely to continue indefinitely;
>
> \(D\) results in substantial functional limitations in three of more
> of the following areas of major life activity
>
> ­(i) self-care;
>
> \(ii\) receptive and expressive language;
>
> \(iii\) learning;
>
> \(iv\) mobility;
>
> \(v\) self-direction;
>
> \(vi\) capacity for independent living; and
>
> \(vii\) economic self-sufficiency; and
>
> \(E\) reflects the individual\'s need for a combination and sequence
> of special, interdisciplinary, or generic services, supports, or other
> assistance that is of lifelong or extended duration and is
> individually planned and coordinated,
>
> except that such term, when applied to infants and young children
> means individuals from birth to age 5, inclusive, who have substantial
> developmental delay or specific congenital or acquired conditions with
> a high probability of resulting in developmental disabilities if
> services are not provided.

The Federal definition of developmental disabilities includes children
and adults with a wide range of diagnoses, including mental retardation,
but also chronic health problems, cerebral palsy, autism, spinal cord
injury and severe head injury, so long as the condition began before age
22 and therefore affected the person\'s development. Amendments to the
definition in 1990 added the language including very young children
(birth through five years of age) who appear very likely to have
developmental disabilities, based on evidence of developmental delay and
relevant diagnosis. It is generally assumed that almost all people who
are actively identified as having mental retardation for the purposes of
receiving services [other than special education]{.underline} could also
be identified as developmentally disabled. But one of the real problems
with the use of the term developmental disabilities as a diagnostic or
eligibility category is that there are no standard agreed upon
operational definitions of when someone has a \"substantial\" functional
limitation.

**PREVALENCE OF MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES**

One reason why it is important to have some understanding of the
prevalence of mental retardation and related disabilities is the
importance in planning and financing services and supports. This is
especially important for adults with mental retardation who need more
intense formal services and supports in housing, work,
leisure/recreation and other activities after they complete their
education and move away from their family home. There is general
consensus that about two percent of the population [could]{.underline}
be labeled as having mental retardation some time during their lifetimes
based on IQ scores. In reality, many people whose IQs might be below 70,
do not exhibit the difficulties in adaptive behavior. And many who
exhibit difficulties in adaptive behavior at some point in their lives
do not exhibit them throughout their lives. As described in the AAMR
definition, mental retardation should not be viewed as a permanent
condition; people can and do \"cure\" themselves by living relatively
independent lives, especially when appropriate supports are available
when needed.

People identified as having mental retardation are almost always so
identified during the school years when academic problems draw attention
to them. Many of these same individuals are not officially recognized as
having mental retardation beyond the school years. (Grossman, 1973;
PCMR, 1970) Therefore, there is a wide variation between the number of
people who will sometime in their lifetimes be labeled as \"mentally
retarded\" and the number who are at any one time being actively
recognized or \"treated\" as having mental retardation.

Those who have examined the \"active\" prevalence (the percentage of the
population identified at any one time) of mental retardation note that
seldom is more than one percent of the population identified. This
considerably lower prevalence of mental retardation reflects that mental
retardation is a permanently recognized condition for only about 0.5% of
the population (\"the stable population of persons with mental
retardation\") and a \"transitory status\" into which falls at any one
time about a quarter of the approximately 1.5% of the population that
will only temporarily be identified at exhibiting mental retardation
(most often exclusively during the school years).

**The \"Stable\" Population of People with Mental Retardation**

For the most part the functional characteristics and associated needs of
adults falling in the profound to moderately retarded range (approximate
IQ of 50-55 or below) are such that, even though some of the more
capable individuals in this group may develop a range o£ important
self-care and employment skills, relatively few achieve full
independence from the support of family members and service providers.
People with this level of impairment constitute approximately 0.4% of
the population. This prevalence is based from an average finding of 0.4%
in 27 epidemiological studies of communities, primarily in the United
States and the United Kingdom, of which 19 were considered reasonably
reliable (Abramowicz and Richardson, 1975). Because these studies were
generally focused on noninstitutionalized persons in the adolescent
years, it is presumed that they would represent persons in a nearly
universal screening for prevalence, that is, in the school years.
Adjustments of these estimates to include institutionalized persons
would make 0.5% a reasonable estimate of the percentage of the total
population falling in the moderately to profoundly retarded range.

There are currently a number of health, social, and demographic factors
that may be affecting the prevalence of this level of disability,
although it is difficult to establish the direction, if any, of the net
effect. For example, in the past two decades, infant mortality has
fallen sharply in the United States, particularly among high-risk
premature babies, many of whom now survive with severe developmental
impairments. Furthermore, advanced medical tech­nologies are increasing
the ages to which people with mental retardation are living. Other
medical and public health technologies, including genetic screening,
improved pre- and perinatal health and medical care, immunizations, and
liberal access to abortions have probably had a general effect of
lowering the incidence of moderate to profound mental retardation. In
New York State, following liberalization of the abortion law, Down
Syndrome births declined by 20% over a five year period (Hansen, 1978).
Epidemiologically, the factors mentioned above may well have lowered the
incidence of moderate to profound mental retardation while maintaining,
possibly even slightly increasing, its prevalence. Demographically, this
causes a trend toward a generally older population of people with
moderate to profound mental retardation. Such trends have important
ramifications for communities, as the primary locus of social responses
to the needs of individuals with moderate to profound mental retardation
will continue to shift from home and school (currently available through
age 21) to a full array of much more costly adult services.

**The Transitory Population of People with Mental Retardation**

Many of the people who are ever identified as having mental retardation
retain that label for only a limited part of their lives. The vast
majority are identified as having mild mental retardation. A sizable
portion of these people are only identified as having mental retardation
while they are in school settings. In the 1992-1993 school year 1.4% of
the school age population was reported by education officials to have
mental retardation or multiple disabilities. This number has actually
been decreasing in recent years (from 1.8% in 1983-1984 and 2.2% in
1978-1979), as less stigmatizing categories (especially learning
disabilities) have been used to authorize and provide specialized
educational services.

In the early 1970s, the substantial role that schools have historically
played in creating and treating the \"active\" prevalence of mental
retardation was shown in a seminal analysis by Tarjan et al., (1973), in
which it was estimated that 75% of the people who at any one time are
identified as having mental retardation are children or adolescents.
These estimates have been supported by other household surveys in
Baltimore, Maryland (72.5% in 1936) and Riverside, California (76% in
1973). Tarjan\'s analyses also demonstrated that virtually all persons
ever identified as having mental retardation are identified before
reaching adulthood, and that two-thirds of the persons so identified
before age 21 do not retain that label in adulthood. So as schools
identify fewer and fewer children and youth who in the past would have
been identified as having mental retardation, two important trends can
be identified. First, the proportion of people who will ever be
identified as having mental retardation has decreased. Second, the
proportion of children and youth among persons who are at any one time
identified as having mental retardation will decrease. But even relying
on somewhat aging school prevalence statistics, the combined prevalence
of \"active\" mild retardation and stable (moderate to profound)
retardation supports the estimate of only about a 0.8% to 0.9%
prevalence of \"active\" mental retardation at any one time.

**Objective Support for the 1% Prevalence Estimate**

Comprehensive studies of prevalence support the 1% prevalence estimate.
The Riverside, California (pop. 85,000) study in the early 1970s,
combining case registries of clinical and service providing
organizations (including schools) with household surveys and respondent
nominations of persons outside the family believed to have mental
retardation, yielded a total estimated prevalence of 1.0% when all
nominated individuals were screened for clinically diagnosable mental
retardation (Mercer, 1973a,b). In a second household-only survey of a
controlled sample of counties in West Virginia in 1974-1976, Lindberg,
(1976) studied the prevalence of multiple developmental disabilities
including mental retardation. The households surveyed had a total
population of over 35,000 people. Based on this survey it was estimated
that 0.82% of the State\'s household population had mental retardation,
although there were regional variations from 0.62% to 1.07%. When the
prevalence of persons with mental retardation in West Virginia\'s
residential facilities on June 30, 1977 was included, the prevalence of
mental retardation was an estimated 0.88% of the State\'s population.

**Variations in Active Prevalence by Age Groupings**

Of particular importance to service systems is the varying size and
severity of disability of this population at different points in the
life span. Infancy and early childhood represent periods when the
prevalence of [identified]{.underline} mental retardation is low (less
than 0.5%) but the proportion with [severe]{.underline} impairments is
relatively high, since most young children are not identified unless
they have substantial cognitive impairments. The school years (6-21)
represent a period when the identified prevalence is high (about 1.4% in
figures reported to the Department of Education by school districts).
But school age individuals with mild retardation constitute a dwindling
majority of this population, and this majority typically does not
receive specialized services outside of the school (hence the term \"the
6-hour retarded child\" coined by PCMR in 1970). Finally, the adult
years are a period when the prevalence again decreases; returning to an
average of about 0.5%, but the proportion of persons with more severe
impairments is again relatively high.

National statistics are generally supportive of the surveys described
above. Table 3 summarizes data from the National Health Interview Survey
on persons living outside of licensed residential settings who were
identified as having a major activity limitations and mental
retardation, by the condition indicated as the primary cause of the
limitations, along with persons in residential settings. As shown the
combined noninstitutionalized and long-term care populations are
estimated as 825,000 or 1.23% among persons under 18 years and 1,974,000
for all individuals. Adjustment to age 21 would yield an estimated
988,000 children and youth 21 years or younger with mental retardation
and 988,000 adults. It would appear that the reduced use of the mental
retardation label in schools has reduced the proportion of all people
identified as having mental retardation from about 70% to about 50% over
the past quarter century.

People with developmental disabilities by definition need some level of
assistance in three or more areas of daily life activity. In addition to
those with mental retardation, there is an additional portion of persons
with developmental disabilities who also need substantial support and
assistance. Because service systems for people with mental retardation
and developmental disabilities have evolved out of traditional mental
retardation systems, they often categorically exclude individuals with
developmental disabilities not also accompanied by mental retardation,
for example, people with physical disabilities without retardation.
People with other developmental disabilities often have had little
interest in mental retardation-oriented services because they were
inconsistent with their goals, aspirations and sense of autonomy and
dignity. However, as traditional service systems evolve, services are
becoming more attractive to a broader range of people with developmental
disabilities. As this happens, there is growing interest in
understanding how many people there are those who have developmental
disabilities/mental retardation. A two-year national survey will be
completed in 1995 to permit estimates of a national prevalence rate for
developmental disability, based on the Federal definition. This is
extremely important because existing estimates are inadequate to
identify the numbers of people with developmental disabilities, and the
nature and extent of their needs for services and supports.

Table 3

> Estimated Prevalence of Persons with Mental Retardation in the
> Noninstitutionalized and Institutionalized Populations of the United
> States As Identified for Persons with Major Activity Limitations with
> \"Main Cause\" Indicated.

+------------------------+----------+--------+-----------+-----------+
|                        | > Under  |        | > All     |           |
|                        | > 18     |        | > Ages    |           |
|                        | > Years  |        |           |           |
+------------------------+----------+--------+-----------+-----------+
|                        | Number   | >      | Number    | > \% Pop. |
|                        |          |  %Fop. |           |           |
+------------------------+----------+--------+-----------+-----------+
| > Noninstitutionalized |          |        |           |           |
| > PopulationZ          |          |        |           |           |
| > 190-419,96 estimates |          |        |           |           |
+------------------------+----------+--------+-----------+-----------+
| > Mental Retardation   | 611,000  | .91    | 1,032,000 | .40       |
+------------------------+----------+--------+-----------+-----------+
| > Cerebral Palsy       | 81,000   | .12    | 155,000   | .06       |
+------------------------+----------+--------+-----------+-----------+
| > Epilepsy             | 65,000   | .10    | 361,000   | .14       |
+------------------------+----------+--------+-----------+-----------+
| S                      | 20,000   | .03    | 77,000\'  | .03       |
| chizophrenia/Psychosis |          |        |           |           |
| (evident               |          |        |           |           |
|                        |          |        |           |           |
| > in childhood)        |          |        |           |           |
+------------------------+----------+--------+-----------+-----------+
| > Total                | 777,000  | 1.16   | 1,625,000 | .63       |
| > Noninstitutional     |          |        |           |           |
+------------------------+----------+--------+-----------+-----------+
| > Institutionalized    |          |        |           |           |
| > Population-1994      |          |        |           |           |
+------------------------+----------+--------+-----------+-----------+
| > MR/DD Settings       | 48,500   |        | 311,000   |           |
+------------------------+----------+--------+-----------+-----------+
| > Nursing Homes ^5^    | 500      |        | 36,000    |           |
+------------------------+----------+--------+-----------+-----------+
| > Psychiatric          | UNK.     |        | 1,600     |           |
| > Facilities           |          |        |           |           |
+------------------------+----------+--------+-----------+-----------+
| > Total                | 49,000   | .07    | 348,600   | .14       |
+------------------------+----------+--------+-----------+-----------+
| > Total Est. MR        | 826,000  | 1.23   | 1,974,000 | [.77]{.u  |
| > Population           |          |        |           | nderline} |
+------------------------+----------+--------+-----------+-----------+
| > [1985 Population     | [67,133, | [      | [257,90   | [1        |
| > Base]{.underline}    | 000]{.un | 26.03] | 0,000]{.u | 00.00]{.u |
|                        | derline} | {.unde | nderline} | nderline} |
|                        |          | rline} |           |           |
+------------------------+----------+--------+-----------+-----------+

\*The statistics on noninstitutionalized populations are drawn from
analysis of the 1983-1986 National Health Interview Survey by Mitchell
LaPlante on the University of California-San Francisco, Institute of
Health and Aging. These statistics represent the prevalence of mental
retardation among persons for whom chronic impairments are identified to
be the \"main cause\" of limitations in major activities (kind or amount
of work, housekeeping, or schooling). Institutionalized populations
represent populations of persons identified as having the conditions
above within institutional populations (1986 in case of MR/DD
facilities). In addition to conditions which represent the main cause of
limitations in major activities, the NHIS included identification of
specific conditions within general classes for 1/6 of the sample
irrespective of limitations that might result. For the three major
conditions causing limitations the following number of cases and
prevalences were estimated for noninstitutionalized populations,
irrespective of major activities limitations: mental retardation, .45%;
cerebral palsy, .11%; and epilepsy, .44%.

^1^ Under 18 years for non institutional population, under 21 for
institutional population.

^2^ From LaPlante (1990). Data on disability from the National Health
Interview Survey, 1983-1986. Washington, DC: U.S. Department of
Education.

^3^ Populations 18 and over with limiting condition estimated from the
prevalence of impairments in under 18 population because of inability to
infer whether adults\' condition of this type occurred in the
developmental period.

° Data from Center for Residential Services and Community Living,
University of Minnesota (excludes generic foster care covered in survey
of noninstitutionalized populations).

^5^ Data from analyses of 1985 National Nursing Home Survey by Center
for Residential Services and Community Living, University of Minnesota.
Includes primary diagnosis of mental retardation or cerebral palsy.

**SERVICE PLANNING IMPLICATIONS**

The emphasis on the more severe levels of mental retardation and related
disabilities in many discussions does not mean that individuals with
mild retardation may not need supports and services once they leave
school, and in some cases, before entering school. Each person\'s (and
family\'s) specific situation and needs are unique, as well as changing
over time. People with mental retardation may need help with housing,
employment, paying their bills, or marriage counseling just like anyone
else. For planning purposes, however, it is generally more helpful to
think in terms of the 0.5-1 % who are most likely to need a combination
of informal and specialized supports, while recognizing that everyone\'s
needs and choices will be different.

As States are moving from a mental retardation service system to a
developmental disability system, some are adopting the Federal
definition of developmental disabilities for service eligibility
purposes (for example, Ohio), or an adaptation. The potential effect of
this shift is to expand service eligibility for some individuals who
have conditions other than mental retardation, and to potentially
decrease eligibility for some people with mild mental retardation who do
not have substantial functional limitations in three or more areas of
activity. The issues around prevalence will become increasingly
important. Many States will likely redefine developmental disabilities.
For example, many will recognize a need to include people with mild
mental retardation and few \"functional limitations,\" but who have
substantial emotional and/or behavioral problems. In considering
adoption of new definitions in determining service eligibility, it is
important that States have the best possible information regarding the
characteristics of those who are presently being served and those *who*
might be newly eligible, as well as providing assurances that
individuals *who* need assistance can continue to have access to the
supports they need.

III. **HOW INCLUSION MAKES A DIFFERENCE**

• **INCLUSION IN EARLY INTERVENTION INCLUSIVE**

• **EDUCATION TRANSITION**

• **EMPLOYMENT**

• **INCLUSIVE RECREATION AND COMMUNITY** **CONNECTIONS**

• **AGING AND RETIREMENT**

![](media/image9.png){width="4.9527777777777775in"
height="3.2465277777777777in"}

Inclusion is part of an overall approach to living with mental
retardation, an approach that focuses more on abilities and
opportunities than on disability and limitations. The PCMR National
Collaborative Academies recognize the significance of inclusion
throughout the lifespan of people with mental retardation and other
developmental disabilities, beginning with supports for inclusion in the
earliest months and years of the child\'s life and continuing through
the school years, work and retirement.

**INCLUSION IN EARLY INTERVENTION**

> *Typical peers and typical settings are the right of all children
> needing early intervention. Staff roles and expertise are stretched
> and altered for the better because of learning to work in context on
> functional and vital skills. Good teamwork in typical settings not
> only addresses primary needs of children, but helps prevent secondary
> handicaps that derive from social exclusion* (Kjerland, 1991).

There are many reasons to make sure that early intervention
services\--the earlier the better-are available to children with mental
retardation and other developmental disabilities, and to their parents.
As a practical matter, early intervention is a cost-effective investment
in children and families. Research has consistently shown that early
identification and intervention reduces developmental delay, helping to
prevent more severe and costly problems later on (Wright, King and the
NCSL Task Force on DD, 1991).

Early intervention services are tailored to meet the needs of individual
children and families, with some requiring only a Everyone benefits from
few hours of support per month and others needing much more early
intervention: the intensive intervention. The array of services includes
screening and assessment, family training and counseling, language
child, the family, the development, physical and occupational therapy,
psychological services, nutrition counseling, nursing services,
assistive community and society. technology, home and vehicle
modifications, and a wide range of support services, such as case
management/coordination support, transportation, respite services, and
other supports to the family.

Key tenets of early intervention are that it is family-focused as well
as child-focused." This means that inclusion is supported right from the
beginning, with home-based services and family supports that help
prevent out-of-home placements. Another important tenet is that early
intervention must be culturally relevant, incorporating supports and
approaches in line with culture-based values, parenting practices, and
communication styles.

Everyone benefits from early intervention:

**Benefits to the Child:**

• More skills acquired more quickly because individualized supports and
training are provided;

• Less need for special education or education in segregated settings;

• Prevention of secondary disabilities;

• Supported in family participation and activities with other children;
and

• Foundation for enhanced independence and productivity throughout
lifetime.

**Benefits to the Family:**

• Skills gained by parents and other family members in implementing
child\'s program at home;

• Reduced stress through supports and increased confidence; and

• Help with costs of special equipment, other disability-related
expenses.

**Benefits to Society:**

• Reduced costs of special education;

• Increased productivity and contributions to society; and

• Prevention and mediation of costly secondary developmental problems
and out-of-home placements.

The importance of the benefits of early intervention was emphasized at
the Federal level in the enactment in 1986 of Public Law 99-457, now
Part H of the Individuals with Disabilities Education Act (IDEA). This
capacity-building program supports State efforts to improve their
outreach and services to infants and toddlers with disabilities,
developmental delays, or at risk of developmental delay.

The Promise of Part H

Part H authorizes financial assistance to the States for the following
purposes:

• Develop and implement a statewide, comprehensive, coordinated,
multi­disciplinary, interagency program of early intervention services
for all infants and toddles with disabilities and their families;

• Facilitate coordination of payments for early intervention services
from various public and private sources; and

• Enhance the State\'s capacity to provide quality early intervention
services and expand and improve existing services.

**Project EDGE: Early Intervention Pioneers**

Early family-based education for infants and toddlers with Down Syndrome
was developed at the University of Minnesota in the late 1960s. The
five-year EDGE (Expanding Developmental Growth through Education)
project supported children and their parents in play activities,
followed by supported participation in a community nursery school from
the age of 30 months to five years of age. At that point, children
entered whatever educational programs their local school districts
provided.

When the children were 11 to 14 years of age, follow-up data collection
found that the children were exceeding traditional expectations for Down
Syndrome. The majority were reading with comprehension at around a
second grade level, with clear potential for becoming functionally
literate; several were avid readers. Social adjustments were very good,
and physical abilities were reflected in sports and recreational
interests.

Holly Colwell was born in 1969 with Down Syndrome. She was enrolled in
Project EDGE when she was six months old. Twenty years later, she had
graduated from her local high school and was getting ready to attend a
technical institute to continue her education. She was \"mainstreamed\"
throughout her education, with many friends. She has a variety of
interests, including figure skating. She won a gold medal at the State
Winter Special Olympics and a silver medal at the International Winter
Special Olympics in 1989.

Her parents feel that Project EDGE benefited Holly both academically and
socially. EDGE helped parents in teaching children \"how-to-do\" and
\"how-to-grow,\" rather than emphasizing what the child was nnl expected
to accomplish. Holly and many of the other EDGE graduates have disproved
the negative predictions of the \"experts\" who recommended that Holly
and other children with Down Syndrome be institutionalized because they
would never be able to move beyond an infantile level of development.

The family focus of the project also was important. Supports were
brought to the home, and were tailored to each family\'s situation. The
parents also became a built-in support system to each other. Holly\'s
parents became a resource to new parents of Down Syndrome children
throughout the area, in part to make sure that families received
information on the child\'s potential.

Adapted from articles on Project EDGE in Impact 2(2), University of
Minnesota, Summer 1989.

The Part H program emphasizes State flexibility and control, with each
State designating a lead agency, an Interagency Coordinating Council,
and developing a State plan. Federal funds are targeted to system
building, not direct services-although some Federal dollars \~ can be
used to create new services. As of December 1, 1993, the Department of
Education reported that 150,000 infants and toddlers were receiving
early intervention services (NEC\*TAS, 1995).

Although this is a discretionary program, States accepting the fifth
year of Part H Federal funding must make a commitment to implement their
plan. As of 1995, all States have elected to participate in fifth year
funding. Because Part H can be interpreted as establishing the State\'s
commitment to provide the services in each child\'s Individual Family
Support Plan (IFSP) once States accept the fifth year of Federal
funding, some States had debated about relying on their own early
intervention programs rather than participating in full Part H
implementation. This and other issues from the State perspective are
discussed in *Implementing Early Intervention Services for Infants and
Toddlers with Disabilities* (Sonnier, 1991), an NCSL publication.

One of the core Part H principles is that families are assisted in
obtaining services that are family­focused and individualized. Each
family\'s IFSP outlines specific goals, how goals will be met, and the
specific services and supports needed to meet each goal.

Another core principle is that early intervention needs to take an
interagency approach, recognizing that children with disabilities and
their families often have needs that cut across multiple systems and
agencies. States are therefore required to have an Interagency
Coordinating Council and to define ways to promote interagency
collaboration at the local level, as well as providing coordination
support to the families.

A recent (April 1995) report submitted to the Federal Interagency
Coordinating Council for Part H summarized seven areas of achievement in
the eight years of Part H implementation:

1\) Early intervention policies, programs and services are benefiting
children with disabilities and their families. States report that their
family-centered services result in:

• Better developmental and social adjustment outcomes for the child;

• Reduced stress on parents as a result of support and assistance in
accessing needed services;

• Recognition of the family\'s role as decision maker and partner;

• Help to families in making the best choices for their children,
through access to comprehensive information on community resources;

• Adaptations to individual, family and community contexts through
creative, flexible and collaborative approaches;

• Children and families being valued for their unique capacities,
experiences, and potential;

• Active family involvement in planning and implementation of early
intervention services; and

• Potential savings in health care costs, through improved monitoring
and referral to care.

2\) Early intervention services are proving to have cost benefits.
States that have conducted evaluation studies have identified general
cost savings/cost benefits (e.g., Florida, Massachusetts and Montana),
as well as reduced need for special education services (e.g., Montana
and Texas), and reduced need for out-of-home placements (e.g., North
Carolina).

3\) Services are improved and streamlined by interagency coordination
and collaboration, including at least 41 States which include local
interagency coordinating councils in their Part H system.

4\) State and local service system development is enhanced, including
expanded outreach and child identification, new options for home- and
inclusive community-based services, and the development of services
which are accessible throughout the community, are culturally sensitive,
and are tailored to individual family priorities.

5\) More children are being identified and served through expanded
services.

6\) More personnel qualified to work with young children with
disabilities are available to provide services, through a variety of
personnel development and training strategies.

7\) Legislation and funding are supporting the continuation of early
intervention services. All States have authorized the operation of a
comprehensive early intervention program, through State legislation,
executive orders, lead agency policies, and/or interagency agreements.
All States also emphasize coordination of multiple funding streams, with
at least 47 States reporting that they use Medicaid to fund portions of
their Part H program (NEC\*TAS, 1995).

**Other Federal Support for Early Intervention**

The Maternal and Child Health (MCH) Block Grant is used by States to
fund health services targeted to low income women and children and
children with special health care needs. The amount of each State\'s
grant is set in a formula based on low income population. States must
provide \$3 match for every \$4 of Federal funds. The Children with
Special Health Care Needs component is a resource to States in
supporting early intervention services. The MCH Block Grant also
emphasizes service coordination and improved access to Medicaid-funded
services.

The Medicaid Early Periodic Screening, Diagnosis and Treatment (EPSDT)
program entitles all low income children who meet State and Federal
Medicaid eligibility criteria to services necessary to meet health needs
identified through their EPSDT assessments. This includes early
intervention services needed by low income children with disabilities.
Medicaid must provide the health services on the child\'s EPSDT
treatment plan even if the specific service is an optional service that
the State does not otherwise include in its State Medicaid plan.

Other Federal programs supporting early intervention include the
Temporary Child Care for handicapped Children and Crisis Nursery
programs, the Preventive Health and Health Services Block Grant, the
Social Services Block Grant, the Technology-Related Assistance for
Individuals with Disabilities program, the Indian Health Service, and
Migrant Health Services.

**Promoting Inclusion in Early Intervention**

*This month our son started kindergarten. He\'s already one of the most
popular boys in school, is learning to share, and is learning to do much
more than we had dared hope. We have the \[community early intervention
program\] to thank for much of his success.*

Parent from Virginia, quoted *in Helping Our Nation\'s Infants and
Toddlers with Disabilities and Their Families* (NEC\*TAS, 1995).

Forchildren with mental retardation and other developmental
disabilities, inclusion begins with family. Early intervention and
support to family members-including brothers, sisters and
grandparents-helps create the \"environment of inclusion\" that Koquese
Collins talks about in describing their (Brian\'s) family.

In Colorado, the Special Education Services Unit is the State\'s lead
agency for Part H. Colorado used its Part H funds in a twofold approach
to empower families in making decisions for their children with
disabilities and to promote availability of services that are more
responsive to their needs. For example, service providers are encouraged
to offer more services in homes and during evening and weekends, to
involve more working parents. The State\'s approach is based on a belief
at \"if the family functions better, the child will function better\"
(Wright et al., 1991).

Several States developed extensive early intervention programs, in many
cases pre-dating Part H." NCSL describes the Texas early childhood
initiative and its Early Childhood Intervention program as models for
the authors of the Part H legislation. Maine also was a national leader
in early intervention and coordinated interagency services for children.

Many States have used Part H planning and implementation activities to
stimulate improvements in interagency collaboration for children and
families in need. In some States Part H is part of a larger initiative,
such as the Ohio Families and Children First Cabinet Council.

There are several initiatives to provide supports to daycare, child care
and early education programs help them feel comfortable including
children with disabilities. Limited availability of special needs
daycare for children with developmental disabilities often results in
severe hardships to families, especially if single parents are unable to
work.

> The North Dakota Developmental Disabilities Council funded the North
> Dakota Early Childhood Training Center to develop training modules for
> daycare providers on programming for children with disabilities. The
> training enables the providers to integrate children with special
> needs. Over a two-year period, 1,145 children\'s day care provider
> staff received training in 24 locations across the State. A survey
> evaluating the impact of the Early Childhood Integrated Training
> Program found that one-third of day care providers responding were
> serving one or more children with disabilities; one-third reported
> that the availability of \"special needs\" day care had increased as a
> result of the training; a majority of parents surveyed were able to
> access and use day care; and both parents and providers felt that day
> care staff were well-trained to serve children with disabilities
> (Zierman, 1995).
>
> Iowa schools have offered Early Childhood Special Education (ECSE)
> services for children from birth to age seven since 1974, and have
> developed a comprehensive, statewide network of ECSE services. To
> increase opportunities for integrated educational experiences for
> young children, the Iowa Bureau of Special Education developed the
> Least Restrictive Environment (LRE) facilitator model. LRE
> facilitators identify programs in their area that are interested in
> and able to serve children with disabilities, including Head Start,
> private preschool and day care programs, as well as public school
> kindergarten programs. LRE facilitators help in arranging for children
> with disabilities to enter a non-segregated program; coordinate
> communication between parents, community program staff and special
> education personnel; and provide ongoing support and assistance to the
> community program.

One of the most important contributions of early intervention programs
is to reach out and find children with disabilities and developmental
delay, so that their needs can be identified and met on a timely basis.
The District of Columbia developed Project ROSE (Reaching Out for
Successful Early Intervention), partially supported by the District\'s
Developmental Disabilities Council. Project ROSE is a collaborative data
collection and child-find initiative of the D.C. Department of Human
Services, in partnership with birth hospitals in the city (Zierman,
1995).

**INCLUSIVE EDUCATION**

*"I do not want the \`retarded corner\' of the school. \"* (Linda
Preston, Illinois)

In its *A Journey of Renewal for All Americans: Report to the President*
(PCMR 1994b), the PCMR noted that while children with mental retardation
are no longer excluded from public education, they continue to be
segregated. For the 1991-92 school year, for example, the U.S.
Department of Education reported that only 5.0% of students with mental
retardation age 6-21 were educated in regular classrooms. As illustrated
in Figure 6, over 70% of the children received their education in
separated classes or facilities (U.S. Department of Education, 1994).

**Figure 6 Percentage of Children Age 6-21 with Mental Retardation
Served in Different Education Environments, United States 1991-92 School
Year.**

**Separate Class** *59%*

***Sowce: 16th Annual Report to Congress (U.S.*** Dept. of Education,
1994)

Sep. **Public Facility 8%**

![](media/image10.png){width="4.320138888888889in"
height="2.276388888888889in"}

**Resource Room** *25%*

Students with mental retardation receiving inclusive education are
reaping the benefits opportunities for friendships as well as enhanced
expectations, as described by their parents hearings conducted by the
National Council on Disability (NCD):

> IDEA \[the Individuals with Disabilities Education Act\] has made a
> difference for Maddie, a difference that translates into her
> attendance at our public elementary school a half block from our home
> with other first and second graders in her neighborhood. Her regular
> presence in school means that kids of all ages greet her on the
> playground, acknowledge her in stores, and expect that she is a part
> of the community. (Colorado Parent)
>
> My daughter is eleven years old. She has autism and mental retardation
> and up until last year \... was in self-contained classrooms. Last
> year we decided to attempt inclusion with lots of support through our
> \[University Affiliated Program\] and our local school district. Kara
> had a remarkably successful year. We saw more progress in that one
> year of inclusion than we saw in six or seven years of very intensive
> one-on-one special education. (Alaska Parent)
>
> A friend of mine has a child with Down Syndrome. It was difficult for
> her to have the child go into an inclusive classroom. She was very
> nervous and concerned about it. The first day that her Jennifer came
> home, she came in just bubbling and said, \"Mommy, I\'m a real second
> grader now!\" That\'s the whole point: to let children like Jennifer
> know they\'re regular kids, too. (Margaret C. Daley)

Inclusion benefits children beyond their school years as well. A 1994
series of forums and teleconferences conducted by the President\'s
Committee on Employment of People with Disabilities (PCEPD) described
the link between inclusive education and later success as follows:

High quality education and vocational training from pre-school to
post-graduate levels is the best way to ensure that people with
disabilities integrate effectively into the economic marketplace and
become full citizens and active, productive members of society. This can
be most effectively achieved through the inclusion of people with
disabilities into mainstream education\...

The main aim of persons concerned with education issues and of parents,
is to facilitate full integration of children with disabilities to the
greatest extent possible into the classroom. Most participants stressed
that integration, or \"inclusion,\" is the best way to raise the
self-esteem and self-expectations of children with disabilities, and to
accustom their peers to work and live with them side by side throughout
their lives. *(Operation People First. Toward A National Disability
Policy,* PCEPD 1994).

Supporters of inclusive education also have noted the benefits to
children without disabilities. As described by a California parent, \"In
every step of \[my daughter\'s\] education, there have been other
parents who came to me privately and thanked me for allowing their
children a first-hand human experience of the children who for so many
years were relegated to special classrooms, other campuses, for
separate-but not equal-education\" (NCD, 1995).

**The Individuals with Disabilities Education Act**

In 1975, Congress enacted the Education for All Handicapped Children
Act, P.L. 94-142, now Part B of IDEA, the Individuals with Disabilities
Education Act. P.L. 94-142 recognized that State and local educational
agencies had a duty to educate all students with disabilities, that they
lacked the financial resources to do so, and that it was in the national
interest for the Federal government to assist in meeting the educational
needs of students with disabilities in order to assure equal protection
under the law (20 USC Sec. 1400(b)(8) and (9)). The purposes were
defined as follows:

> • To assure that all children with disabilities receive a free and
> appropriate public education;
>
> •To ensure that their rights and those of their parents and guardians
> were protected;

•To assist State and local agencies in providing for their education;
and

> •To assess and assure the effectiveness of those agencies\' efforts to
> educate students with disabilities. (20 USC Sec. 1400(c))

This statement of purpose has been reaffirmed through reauthorizations
and amendments during the last 20 years. Court decisions and regulatory
clarifications have further strengthened IDEA\'s mandate to support
individual students in inclusive education. As summarized by the
National Council on Disability (1995), \"The Court has made it clear
that IDEA is not one of the so-called

\"unfunded Federal mandates,\" but is a Federal grant program that is
entirely justified under Congress\' power and duty to implement the
equal protection guarantees of the U.S. Constitution. More than that,
the Court has acknowledged in the most unequivocal terms that IDEA
provides Federal aid to the States to help them carry out their own
legal obligations to educate all children, including those with
disabilities\" (NCD, 1995).

Two Massachusetts parents summarized the importance of IDEA in testimony
at regional NCD hearings:

Before IDEA, the vast majority of children with disabilities had no
future. IDEA has created a future with real opportunities. It must be
reauthorized. As we\'ve heard, it\'s a great success in human terms, but
it\'s also a great success in cold, hard economic terms because educated
children with disabilities are growing up and becoming productive adult
taxpayers.

I love IDEA. It\'s a wonderful law. Keep it \... Strengthen the ability
to monitor and enforce the laws, take out of the way the barriers that
don\'t allow for the integration imperative to be realized, provide
incentives to help teachers keep abreast of the state-of-the­art
technologies (instructional, as well as assistive), that are allowing
our young people to achieve so much (NCD, 1995).

A recent background paper on inclusive education prepared by the
Developmental Disabilities Task Force of the National Conference of
State Legislatures (NCSL) summarizes the six key principle of IDEA:

1\. The right of access to public education programs.

2\. The individualization of services.

3\. The principle of \"least restrictive environment.\"

4\. The scope of broadened services to be provided by the schools and a
set procedures for determining them.

5\. The general guidelines for identification of a disability.

6\. The principles of primary state and local responsibilities. (NCSL,
undated)

IDEA is being reauthorized in 1995, in the context of educational
reform. State and local education systems are trying to improve
educational outcomes for all children, including those with disabilities
as well as those who are poor, educationally disadvantaged, from diverse
racial and cultural backgrounds, or who have limited proficiency in the
English language. A coalition of advocacy groups, including the National
Parent Network on Disabilities, has urged that IDEA\'s protections to
students with disabilities not be weakened, especially in a time of
change, so that these children can continue to receive the education
they are entitled to (Advocates for Children of New York, Center for Law
and Education, Disability Rights Education Defense Fund, et al., 1994).

**Outcomes of Inclusive Education: A Summary of Research Findings**

The National Center on Educational Restructuring and Inclusion looked
across a wide body of research on inclusive education, to identify
outcomes and the practices associated with positive outcomes. For
preschoolers, they noted conclusions through Nisbet\'s research summary
(1994), that integration had positive effects on social competence,
interactions, and some skills.

Overall, children with mild or high incidence disabilities, such as
speech impairment or specific learning disabilities, were found to do as
well or better in full time regular classroom than in resource room
options. Classroom options also were generally more cost-effective.
Children with moderate and severe disabilities in general education
settings also were generally found to do as well or better than those in
more segregated settings, especially in social competence. These
findings were confirmed in several statewide and local district studies,
as well as findings regarding the positive benefits to students without
disabilities. There was also evidence of the benefits of co-teaching,
i.e., collaborative teaching by a general educator and special educator
with a heterogeneous group of special and general education students.
Examples of positive changes were reported by school districts in
California, Florida, Georgia, Indiana, Maryland, Michigan and Texas. For
example, the Brevard County School District in Florida reported:

> We have seen a lot of caring and acceptance from the regular education
> students toward our more challenged students. They are very protective
> and understanding of them. The special needs students are growing
> tremendously. There are \[students with emotional handicaps\] that are
> excited by learning. The parents of our \[students with Down
> Syndrome\] and \[students with autism\] report a tremendous growth in
> vocabulary and communication. Students that came from a self-contained
> setting and exhibited a lot of anxiety about the regular classroom
> appear to be relaxed and comfortable with their new placement.

In summary, the research and evaluation data on inclusion indicate a
strong trend toward improved student outcomes (academic, behavior, and
social) for both special and general education students. As summarized
from a report on inclusive education in Michigan, \"When one contrasts
such indications with the fact that there appears to be little, if any,
evidence in research to support superior student outcomes as a result of
placement in segregated settings, one must seriously question the
efficacy of spending ever-increasing sums of money to maintain a dual
system\" (Michigan Department of Education, 1993).

Adapted from Lipsky and Gartner, 1995.

Over the past 20 years, IDEA and its predecessors have brought
educational opportunities to tens of millions of students with
disabilities who have received special education and related services.
Currently, over five million children and youth with disabilities are
receiving special education, including approximately 534,000 with mental
retardation (11.5% of special education students age 6 - 21). The
increases in the number of children is shown in Table 4.

Overall, there has been an increase in the number and portion of
students being educated in less segregated settings. Between the 1977-78
and 1989-90 school years, for example, the portion of students with
disabilities in general education public schools increased 0.5% overall,
and 17% for children with orthopedic impairments. At the same time, the
portion of students with mental retardation in general education public
schools [declined]{.underline} 1.5% during that period, as did the
portion of students with multiple disabilities in general education
public schools, which declined 5.9% (NCSL, undated).

Table 4

Students Served Under IDEA Part B and Related

Chapter 1 State Operated Programs

+----------------+----------------------+-----------------------------+
| School Year    | Total Served         | Change in Total Number      |
|                |                      |                             |
|                |                      | Served from Previous Year   |
|                |                      | (%)                         |
+----------------+----------------------+-----------------------------+
| 1976-77        | 3,708,588            | \-                          |
+----------------+----------------------+-----------------------------+
| 1977-78        | 3,777,286            | 1.8                         |
+----------------+----------------------+-----------------------------+
| 1978-79        | 3,919,073            | 3.8                         |
+----------------+----------------------+-----------------------------+
| 1979-80        | 4,036,219            | 3.0                         |
+----------------+----------------------+-----------------------------+
| 1980-81        | 4,177,689            | 3.5                         |
+----------------+----------------------+-----------------------------+
| 1981-82        | 4,233,282            | 1.3                         |
+----------------+----------------------+-----------------------------+
| 1982-83        | 4,298,327            | 1.5                         |
+----------------+----------------------+-----------------------------+
| 1983-84        | 4,341,399            | 1.0                         |
+----------------+----------------------+-----------------------------+
| 1984-85        | 4,363,031            | 0.5                         |
+----------------+----------------------+-----------------------------+
| 1985-86        | 4,370,244            | 0.2                         |
+----------------+----------------------+-----------------------------+
| 1986-87        | 4,421,601            | 1.2                         |
+----------------+----------------------+-----------------------------+
| 1987-88        | 4,485,702            | 1.4                         |
+----------------+----------------------+-----------------------------+
| 1988-89        | 4,568,063            | 1.8                         |
+----------------+----------------------+-----------------------------+
| 1989-90        | 4,675,619            | 2.4                         |
+----------------+----------------------+-----------------------------+
| 1990-91        | 4,807,441            | 2.8                         |
+----------------+----------------------+-----------------------------+
| 1991-92        | 4,986,075            | 3.7                         |
+----------------+----------------------+-----------------------------+
| 1992-93        | 5,170,242            | 3.7                         |
+----------------+----------------------+-----------------------------+

Source: *Sixteenth Annual Report to Congress (U.S.* Dept. of Education,
1994).

Similarly, data available from the Department of Education on more
recent trends reflects gains in inclusion for the overall population of
students with disabilities from the 1998-89 school year to the 1991-1992
school year (most recent data available at the national level). As
illustrated in Table 5:

• More children with disabilities are in regular classes.

• Slightly fewer children with disabilities are in separate classes and
facilities.

Although there are major differences among the States, even the States
with the lowest rates of inclusion are improving. The lowest percentage
of students with disabilities in regular classes among the States rose
from 1.08% in the 1988-89 school year to 6.23% in 1991-92, while the top
inclusion percentage in regular classes rose from 79.37% to 87.41%.

Table 5

Portion of Special Education Students by Setting (%)

All Disabilities MR Orth. Impmt. Mult. Dis.

+-------------+-----+-----+-----+-----+-----+-----+------+-------+
| Setting     | 88  | 91  | 88  | 91  | 88  | 91  | 8    | 91-92 |
|             | -89 | -92 | -89 | -92 | -89 | -92 | 8-89 |       |
+-------------+-----+-----+-----+-----+-----+-----+------+-------+
| Regular     | 30  | 34  | 5   | 5   | 29  | 32  | 7.05 | 6.20  |
| Class       | .50 | .90 | .91 | .04 | .23 | .39 |      |       |
+-------------+-----+-----+-----+-----+-----+-----+------+-------+
| Resource    | 38  | 34  | 22  | 25  | 18  | 21  | 1    | 18.05 |
|             | .99 | .90 | .42 | .44 | .58 | .00 | 4.03 |       |
| Room        |     |     |     |     |     |     |      |       |
+-------------+-----+-----+-----+-----+-----+-----+------+-------+
| Separate    | 24  | 23  | 58  | 59  | 33  | 34  | 4    | 47.11 |
| Class       | .27 | .52 | .89 | .20 | .46 | .35 | 6.20 |       |
+-------------+-----+-----+-----+-----+-----+-----+------+-------+
| Separate    | 6   | 5   | 12  | 10  | 18  | 12  | 3    | 28.64 |
|             | .24 | .28 | .78 | .32 | .73 | .26 | 2.72 |       |
| Facility    |     |     |     |     |     |     |      |       |
+-------------+-----+-----+-----+-----+-----+-----+------+-------+

Source: *Thirteenth Annual Report to Congress (U.S.* Dept. of Education,
*1991),* for the *1988-89* school year, and *Sixteenth Annual Report to
Congress (U.S.* Dept. of Education, *1994),* for the *1991-92 school*
year.

As illustrated in Table 5, however, recent gains in inclusion have been
less for students with mental retardation than for students with
disabilities in general. There have also been minimal gains for special
education students with orthopedic impairments, and for students
categorized as having multiple disabilities. Because IDEA serves many
students whose disabilities may be mild (e.g., some students with
specific learning disabilities-51.1 % of the total, and some with speech
or language impairment 21.6 % of all special education students), the
overall statistics on inclusion can be misleading regarding the
inclusion of students with more significant disabilities.

At the same time, there are also great variations across the States in
the inclusion of students with mental retardation, orthopedic
impairments, and multiple disabilities. For example, students with
mental retardation in regular classes ranged from 0.09% to 59.40% in the
1988-90 school year, and from 0.25% to 70.45% in the 1991-92 school year
(U.S. Dept. of Education, 1991 and U.S. Dept. of Education, 1994,
respectively). Although the general trend toward inclusion is apparent,
it is also clear that there are only minimal opportunities for inclusive
education in some States.

There are also significant differences among the States in the portion
of students designated in special education, the portion of students
within specific diagnostic categories used in the special education
system, and the age range of mandatory special education availability.

**Promoting Inclusive Education**

The National Council on Disability and others have identified several
strategies to make inclusive education work. In its report *Inclusionary
Education for Students with Disabilities: Keeping the Promise* (NCD,
1994), the NCD described strategies at the local, State and Federal
levels, beginning with a school district\'s vision that \"all students
are welcomed and valued learners in the schools and classes they would
attend if not identified as disabled.\" Other strategies may be
summarized as follows:

• Focus on the whole school.

• Changes in the curriculum, in particular a unitary (regular and
special education) curriculum, with modifications made as needed on an
individual basis.

• Grading policy changes.

• Instructional change, such as whole language and literature
techniques, hands-on instruction, active rather than passive learning,
multi-cultural content and processes, increased sensitivity in the
approach to learners, more thematic/integrated curriculum, more in-depth
instruction, more cooperative learning, and more opportunities to learn
in the community.

• Creative use of resource and personnel, such pairs of regular and
special education teachers sharing equally in the planning, instruction
and student evaluation, and moving both consultative and direct related
services into the regular education activities.

• Collaborative planning teams.

• Addressing the need for changes in relationships across all school
personnel, and between the school and parents.

• Training and staff development.

• Time for team-building, planning, creating and training.

• Peer preparation on an as needed basis.

• Opportunities to celebrate accomplishments.

***Anne\'s Story***

Anne was the first student with severe mental and physical disabilities
to be fully included in her neighborhood kindergarten and first grade
class in the Mounds View School District \[Shoreview, MN\]\...During the
first three years of her life Anne received therapy and other
programming services through the \[area specialized early intervention
center\]. After she turned three, new legislation went into effect that
required local school districts to provide programming for children with
disabilities. Our school district contracted with Special District 916
to provide services to Anne at a segregated site. Although we were
pleased with the programming that Anne was receiving, we found the
segregated site lacking in many ways. Since none of the children in
Anne\'s classroom talked or were ambulatory, the only verbal
communication and role models for her were her teacher.

Her life was without playmates or friends. Since her pre-school
experience was outside of the neighborhood setting, she did not have
opportunities to make friends with other children in her neighborhood.
We decided we wanted more for Anne when she entered kindergarten and
elementary school. This decision began a process that spanned over one
year to convince Mounds View School District officials to provide
services for Anne in her neighborhood school. The process of expressing
our vision for Anne resulted in a very positive team approach to
beginning an inclusive education project in our district.

Anne began kindergarten and then first grade by riding to school on the
same bus as her classmates and joining them full time in the regular
classroom. Our pain watching the isolation of Anne\'s life changed to
the excitement of seeing her surrounded by other children who were drawn
to her uniqueness and enjoyed her friendship.

How is the integrated learning process working out in the classroom? It
is benefiting all the children. For instance, since Anne uses sign
language to communicate, there has been great interest from her
classmates to not only learn her signs but sign language in general.
Students often come up to Anne and show her the new signs they have
learned. Students also have been actively involved in adapting Anne\'s
environment to fit her needs. One day in art class Anne was having
difficulty gluing paper together. A classmate came up with the idea of
using a paintbrush to apply the glue. In addition, Anne\'s classmates
have really learned the art of patience as well as tolerance. They not
only wait for Anne to respond rather than answer for her, but appear to
be more tolerant to the differences of other peers in class. Very seldom
are negative things said about other people in the class. Along with the
interaction with her peers at school, we have been pleasantly surprised
to find that Anne has new friendships outside of school. She has been
invited to the birthday parties of her friends, boys and girls alike.
When we attend school or community functions, children come over to say
hello to Anne and to introduce her to their families.

We have been amazed to see the many changes taking place in Anne. She
has become more interested in communicating her needs, both verbally and
with sign language. She is also more motivated to be upright and to
learn to walk. We believe this increased motivation is due largely to
the role models of her peers and her desire to interact with them.

These experiences have certainly convinced us of the value and
naturalness of integrated programming. It is a constant challenge to
facilitate this learning process and we are thankful for the enthusiasm
and dedication of the professionals who have been part of Anne\'s team.
Most of all we are very proud of Anne who plays the key role in all of
these efforts. Her \[ten year old\] sister Marlo wrote about Anne in a
way that sums up all of our sentiments: \"I am thankful for my sister. I
think that if my sister was not handicapped, I wouldn\'t be half the
person I am. My parents have helped me learn more about disabilities. My
sister gets into my stuff like any first grader would.\"

Another major strategy area is financing. The National Council on
Disability found that \"Most current State funding systems create
barriers to inclusion by financially rewarding school districts for
segregated placements\" (NCD, 1994). The NCD identified Pennsylvania\'s
approach to questions about the affordability of inclusive education.
Pennsylvania uses a flat-rate allocation of dollars to districts for the
education of children with disabilities, removing incentives for
districts to keep students in expensive, segregated placements. As
described by Dr. Douglas Kane in the NCD report (NCD, 1994):

> The Pennsylvania system basically says that we assume that 17% of the
> students in the school district require some kind of extra help. We
> assume that 1 % of the students in the district require a lot of extra
> help. So, we\'re going to give you an extra \$525 for 17% of your
> kids; we\'re going to give you \$7,000 for 1% of your kids. Go and do
> a good job. Then we also have a special fund set aside for those who
> really need a lot of extra help and we\'re going to deal with those on
> an individual basis.

Dr. Kane also applied the Pennsylvania funding strategy in a simulated
examination of special education costs in another large State, finding
that if they had used the Pennsylvania formula, State special education
costs would have been almost cut in half, from \$529,343,080 to
\$292,100,100 (NCD, 1994).

Some States also have made strides in addressing cultural diversity
within special education, including efforts to avoid over-representation
of cultural minority students or mis-categorizing of children and youth
due to cultural differences. In Alaska, school districts have relatively
low special education child counts, despite a large portion of the total
student population from mixed or non-English speaking homes. The regular
education program accommodates a wide range of student diversity, and
disability identification proceedings respect that students\' cultures,
languages and life experiences are different from those assumed by
Anglo-based traditional measures and procedures (NCD, 1995).

There are many organizations, programs and written resources on
inclusive education. The Federal Office of Special Education Programs
includes a research center on inclusive education. Statewide Systems
Change projects on inclusion have been funded since 1987. The center
also funds research projects that identify educational and environmental
characteristics associated with effective inclusive education, and
outreach projects that help States expand their capabilities to bring
inclusive education to more children with disabilities. Annual Reports
to Congress provide information on national and State special education
statistics, including the age and number of children with mental
retardation and other diagnostic categories receiving special education
services and the educational settings where they are receiving services.

The National Center on Educational Restructuring and Inclusion is a
major resource on programs, practices, evaluation and funding. Its goal
is to promote and support educational programs where all students (i.e.,
both those with and without disabilities) are served effectively in
inclusive settings.

Additional resources targeted to parents include the National Parent
Network on Disabilities, Fiesta Educativa for Latino parents, the PACER
Center and Schools Are For Everyone (SAFE).

**Vermont\'s Efforts in Inclusive Education**

Vermont has been recognized repeatedly for its strong record in
inclusive education. A statewide plan for inclusion has been in place
for a number of years. Approximately 85% of children with developmental
disabilities are educated in regular classrooms. To help integrate the
children who still remain in segregated settings, the Center for
Developmental Disabilities at the University of Vermont has developed a
number of programs, in collaboration with the State Department of
Education:

• *The "I\" Team.* Teams of specialists help the students with the most
severe handicaps across the State to be educated in regular schools. The
State is divided into five regions. Each has a regional education
specialist, a part-time paid support parent, and an occupational or
physical therapist. In addition, a core team, based at the Center for
Developmental Disabilities, covers the State as needed. Assistance may
be requested by the regional specialist, the educator, or parents.

• *The Homecoming Model.* This collaborative, statewide approach relies
on teams to develop the support services needed to transfer students
from regional special education regular and special educators comprise
the team.

• *Project Wrap-Around.* This program provides intensive home- and
school-based support services to families who have children at home who
are at risk of being placed in an alternative residence. The program
\"wraps\" services around the child, providing whatever is necessary to
keep the child in the home and in an integrated educational setting. For
example, a coordinator may provide from five to 30 hours a week of
training to help parents care for their children. Other support includes
respite services, support groups, marriage counseling, and substance
abuse counseling-anything necessary to relieve the stress caused by
caring for a child with a severe disability in the home. The
school-based training includes child counseling.

Source:*What Legislators Need to Know About Mental Retardation and
Developmental Disabilities* (Wright, 1990).

**TRANSITION**

The transition from school to the world of work and adult
responsibilities is critical for all young people, and especially so for
youth with mental retardation and other disabilities. Most of the
opportunities associated with inclusion as adults builds on the
preparation for community living and involvement, citizenship and
employment that take place through the educational experience, and the
transition experience in particular.

***Fred\'s Story***

Fred was born with developmental disabilities, and was in special
education classes during his school years as well as some mainstream and
vocational classes. His transition planning began in earnest about two
years before he was to leave high school. By that time Fred had a county
Developmental Disability Social Worker and a Counselor from the State
Division of Rehabilitation Services (DRS). He spent part of each school
day at the Secondary Technical Center of the County Technical College,
working on vocational skills. The local high schools in the county bus
students to the technical college for \"shifts\" of vocational programs.
Fred received training in the Food Industry Careers program where
students learn food preparation, busing, dishwashing and cleaning
skills. This program provided the background for Fred\'s next vocational
step-the McJobs Training Program.

Fred had long envied people who worked at McDonald\'s, his favorite
eating establishment. When he was given the opportunity to go through
the McJobs Training Program, a structured eight-week program for persons
with special needs, he jumped at the chance. He couldn\'t have been
prouder when he got his uniform, especially the baseball-type cap. Since
he was still in school, the training was jointly funded by DRS and the
State Vocational Education-Special Needs program; Fred\'s local high
school provided transportation because this program was on Fred\'s
\[Individual Education Plan\].

There were some ups and downs, but Fred made steady progress and
completed his training goals. He was hired as a regular employee at
McDonald\'s. After a few months, the manager suggested that with
training on more job stations, Fred could work more hours. The McJobs
job coach spent an additional two weeks at the store to provide the
additional training. Fred is now working 32 hours a week at his
\"dream\" job.

Fred\'s foster mother described her pride in his accomplishments, his
hard work and the opportunities McDonald\'s has given him. She
remembered that \"When we got Fred, we were told that he \[had severe
and profound mental retardation\] and would never walk, talk, or do
anything. And now here is supporting himself, and he loves his job.
He\'s a real success story!\"

*Adapted from Impact 5(3), Fall 1992.*

The NCSL\'s Task Force on Developmental Disabilities placed particular
emphasis on transition planning in its *Americans with Developmental
Disabilities: Policy Directions for the States* (Wright et al., 1991).
It describes transition planning as \"a partnership involving students
with disabilities, their families, school and post-school service
personnel, local community representatives, employers, and neighbors.\"
Although community employment is one outcome of effective transition
planning, others include ensuring that students with disabilities
graduate with the community living and other functional skills needed
for adulthood.

Approximately 40,000 students with developmental disabilities exit
special education programs each year. In addition to an individualized
transition plan, specific mechanisms need to be in place to link
individuals to community services and supports appropriate for adults.
Unfortunately, far too many young adults move from the special education
system, where educational and related services are required, to
unemployment, idleness, lack of supports, and long waiting lists for
adult services.

IDEA requires that each student have an Individual Education Plan (IEP),
and that the plan address transition for all special education students
by age 16, and for others as early as age 14, as appropriate. In
addition, IDEA now mandates that specific transition services be
provided to these students, with an emphasis on coordinated activities.

Some States and local school districts developed transition initiatives
even prior to the Federal requirements. Suggested strategies for
effective transition from these experiences include:

• Keeping students in some type of educational setting.

• Improving competence in basic skills.

• Improving competence in the vocational and community living skills
needed for success in adult life.

• Developing a transition plan with long term goals.

• Building self awareness, self determination and self-advocacy skills.

• Building post-school support need to meet goals (Thompson, 1992).

Minnesota passed legislation in 1986 requiring a transition initiative
and creating a state-funded Interagency Office on Transition Services in
the Department of Education. The office staffs the State Transition
Interagency Committee (STIC), which sets policy and facilitates
coordination among local and state agencies. STIC includes
representatives from the Departments of Education, Human Services, and
Jobs and Training; the community colleges; and parent/advocacy groups.
The legislation also requires that each student\'s IEP must address
transition needs by grade nine or age 14.

*Teresa\'s story*

Last year, Teresa graduated from her local high school. She had received
special education

*and* related *support* services since elementary *school.* At age *13,*
Teresa started participating in school-sponsored training activities in
the community with her teacher and a small group of other students. She
learned to shop at a grocery store, take a bus, and order from fast-food
restaurants. When she reached age 14, Teresa spent at least two hours
during each school day in community-based job training. In school, she
had trained in occupations such as food service, domestic home cleaning,
and clerical and custodial assistance. When she was ready to leave
school, Teresa knew she wanted to be a clerical worker. She already knew
how to run a copy machine and felt confident that she could do the job.
The transition program was able to match her with an employer, and she
moved directly from school to an office job. Now Teresa works 20 hours a
week and takes the bus to work, a 30-minute ride. \"I\'m so glad she was
able to get a job so she won\'t forget all the things she learned in
school,\" says her mother. \"It\'s amazing, really, what she can do.
I\'m proud of her, but more importantly, she\'s proud of herself.\"

*Source: Americans with Developmental Disabilities: Policy Directions
for the States (Wright et al., 1991).*

In 1991, Minnesota was awarded a five-year statewide Systems Change
grant by the U.S. Department of Education, to improve transition
services for youth with disabilities. The project\'s focus includes
collaboration with youth and their families as primary partners, with an
integral part in planning and decision-making. Community Transition
Interagency Committees have been formed, to promote collaborative
transition efforts at the local level. Project activities include:

• State-level policy development and planning, including community
forums and other activities to obtain broad input.

• Consumer and family participation in the transition planning process.
Professional development and training.

• Demonstration projects and related technical assistance to Community
Transition Interagency Committees.

• Information exchange, including a quarterly newsletter, *What\'s
Working in Transition.*

In the early 1990s, Maine developed an innovative voucher system to fund
transition services for individuals with mental retardation between the
ages of 20 and 26 who were exiting the public school system and living
at home. Up to \$12,000 per year, paid for by the State\'s Bureau of
Mental Retardation, was available for services such as evaluation, job
placement, counseling and follow-up, job coaching, supported employment,
transportation, respite care, recreational and leisure activities, and
post-secondary education. The services must be defined in an
individually-designed transition program, and must not be available
through other funding sources.

\"Suggestions for legislators\" on transition are provided in the
NCSL\'s *Americans with Developmental Disabilities: Policy Directions
for the States* (Wright et al., 1991). Additional information on
effective transition is available from the National Transition
Implementation Institute (NTII), funded by the U.S. Department of
Education. The NTII is a collaborative venture of the Institute on
Community Integration of the University of Minnesota, the University of
Vermont, Colorado State University, University of Illinois at
Urbana­Champaign, and the University of Arkansas, as well as a national
network of Regional Resource Centers, various Federal and State
agencies, and consumer, advocacy and education organizations. The NTII
is assisting Minnesota and other systems change grantees in improving
their State transition policies and services. The feature issue of
*Impact (5(3)* Fall 1992) on transition summarizing the Minnesota
systems change project described above also lists resources on
transition.

**EMPLOYMENT**

It has long been recognized that having a job contributes to a person\'s
self esteem and how society defines an individual\'s worth. People with
disabilities are the most unemployed and under-employed group of
Americans. A recent Harris poll found that 69% of working-age
individuals with disabilities are unemployed, despite the fact that most
people with disabilities want to work and to be as economically
self-sufficient as possible. With appropriate training, job
opportunities and supports, people with mental retardation and other
disabilities are often model employees, miss fewer work days than other
employees, and have less turnover.

Traditional employment and adult services for people with mental
retardation were based on a continuum model. Individuals were placed in
adult day activity centers and sheltered workshops, with the idea that
they would progress from adult activity to sheltered employment and on
to community employment, with sufficient training. For most people,
however, the activity center or sheltered workshop became the permanent
\"job placement.\"

More recently, supported employment has emerged as a new approach to
moving people into jobs in regular settings. Supported employment looks
at individual skills, interests and aptitudes, and matches them with an
appropriate job. A job coach works closely with the individual, the
employer and others who are part of the person\'s life to help get the
employment experience off to a good start. Supports provided by the job
coach and others, including co-workers, include training in the work to
be performed, worksite or job modifications, assistive technology, and
counseling. The job coach also supports the employer, supervisors and
co-workers, to solve problems that may arise. Especially if the person
has severe disabilities, the job coach may work side-by-side for an
extended period before cutting back on the hands-on support. Gradually,
however, the job coach is less involved as the supported employee gains
in skills and confidence.

***Mike\'s Story***

Mike is a 34-year-old data entry clerk with a county personnel board in
Alabama. An employment specialist helped Mike assess his personal
interests and vocational skills and find his current position. Because
he has severe disabilities as a result of cerebral palsy, Mike benefits
from several assistive technology devices to perform the demands of his
job and to live independently. At work, Mike uses a modular work station
system and an augmentative communication device that generates printed
speech through a computer. Using a head pointer, Mike can type, operate
a computer, dial a telephone, turn pages, and operate his television,
VCR, microwave oven, and other home appliances. For mobility, he either
pushes a manual wheelchair with one foot or uses a power wheelchair
which he operates with his chin and mouth.

Mike\'s lifestyle today is dramatically different from his 15 years in a
nursing home, which he entered at age 15 because he felt that he
overburdened his mother. He needed assistance with mobility, feeding,
dressing, bathing, toileting and other daily activities. The nursing
home was the only place considered appropriate within the service system
for Mike during those years. Fortunately, he was able to relocate to a
transition living center, where he took classes in personal and
community living skills, personal care attendant hiring, and basic
computer skills. Since his employment, Mike has moved to his own
apartment and uses part of his wages, supplemented with State and
Federal benefits, to pay for his personal attendant.

**Adapted from** *Americans with Developmental Disabilities: Policy
Directions for the States* **(Wright et al., 1991).**

***Katherine\'s Story***

Katherine describes herself as 25 years old, living in a group home, and
having mental retardation. She has worked at Wendy\'s as a dining room
attendant/hostess for 2 1/2 years, where she has been Employee of the
Month. She and her job coach looked for a job she would be interested
in, explained the supported employment program to the people at
Wendy\'s, and helped Katherine learn how to do her work. As Katherine
explains, \"She stayed with me and did the job along beside me. Little
by little, as I learned how to do the job myself, she would step aside
and watch me and make. sure I knew how to do it. Finally, I could do the
job all by myself, so she left. She hasn\'t left me by myself though.
She comes back every so often for my evaluation. If Wendy\'s feels I
need to add more to my list of jobs, she will help train me to learn how
to do it.\"

Katherine works four hours a day, five days a week. She is using her
earnings to pay rent, groceries, bills, clothing and gifts for others.
She saved enough to buy her own bedroom furniture, a TV and
stereo/CD/tape player. Her enthusiasm for her job is contagious:

I love my job coach! She gives me life! If I didn\'t have my job coach,
I wouldn\'t have found work. I wouldn\'t have been so well trained, and
Wendy\'s wouldn\'t have such a great hostess. I would still be at home.
I wouldn\'t have my own money. I wouldn\'t have my friends at Wendy\'s.
I wouldn\'t have a place to go and help out every day. Wendy\'s needs
me! I\'m a valuable person to them! The customers love me and are like
family to me.

Katherine\'s mother also is enthusiastic about her daughter\'s job and
the positive changes in her life. When Katherine finished her high
school at age 22, she had a diploma but no job skills and no job
opportunities. She was at home, mostly watching television, with no
challenges or projects and no money of her own. In combination with a
move to a group home, Katherine began working with the job coach who
helped her find and get the job at Wendy\'s. Her mother\'s pride mirrors
Katherine\'s:

Katherine loves her job. She has a purpose. She has a reason to get up
each day. She has a place to go. She has people who need her. She earns
her own money and uses it to support herself. She takes great pride in
that \... and so do I. She likes being like her older brothers and
sisters-working, living on her own.

Source: Conversion: The Time is NOW! (RRTCNCU, 1994).

At the Federal level, there is policy to support increased opportunities
for employment. The Rehabilitation Act provides grants to States for
supported employment services, and places special emphasis on serving
persons with severe disabilities. The Americans with Disabilities Act
(ADA) prohibits job discrimination on the basis of disability, and
requires reasonable accommodations for employees with disabilities. A
recent study found that job opportunities and income levels had
increased significantly for some people with mental retardation since
the passage of ADA. Average monthly income rose from \$63 per month in
1990 to \$387.50 per month in 1993, above the inflation rate. Not
surprisingly, increased earnings were associated with greater
independence and life satisfaction (Blanck, 1995, summarized in News and
Notes 8(2), March/April 1995). Work incentive programs administered by
the Social Security Administration make it possible for people receiving
disability benefits-Supplemental Security Income (SSI) and Social
Security Disability Income (SSDI)

-to transition gradually into employment without losing the safety net
of income support and related eligibility to Medicaid (SSI recipients)
or Medicare (SSDI beneficiaries).

PCMR has charted the unemployment of individuals with mental retardation
since its beginning. In its 1967 Report to the President, PCMR estimated
that the potential annual earnings lost because of unnecessary
unemployment among people with mental retardation ran into the billions
of dollars. In 1983, the PCMR report noted that hundreds of thousands of
employable people with mental retardation were unemployed because of
misconceptions and low expectations. Although there have been some
advances, the 1994 PCMR report indicates that unemployment rates among
adults with mental retardation exceed 70%; 70% of persons served in day
and employment programs are served in segregated programs; and 80 cents
of every State dollar and 90 cents of every Federal dollar continue to
support segregated rehabilitation and employment services (PCMR, 1994b).

**Trends**

Supported employment has grown rapidly over the past decade. Data
compiled by the Rehabilitation Research and Training Center on Supported
Employment at Virginia Commonwealth University (RRTCNCU) indicate that
supported employment has grown nationally from under 10,000 participants
in 1986 to 105,380 participants in 1993. People with mental retardation
continue to be the primary consumers of supported employment
services-approximately 70% of the total. Although most of these
individuals are people with mild or moderate mental retardation, there
has been an increase in the portion with mental retardation at the
severe or profound level, rising to nearly 13% of supported employees
with mental retardation in 1993 (RRTC/VCU, 1995).

Figure 7

**Supported Employees with Mental Retardation as Their Primary
Disability:** FY 91 vs FY 93

**46.8 44.7**

![](media/image11.png){width="6.2131944444444445in" height="2.5in"}

> **Borderline Mild Moderate Severe/Profound**

**Source: Prelimininary Comparison of National Supported Employment Data
for Fiscal Years 1991-1993 (RTCNCU, 1095).**

An earlier survey, conducted by the Training and Research Institute for
People with Disabilities at the Children\'s Hospital in Boston, compared
findings from agencies in 20 States for 1986 and 1991, as well as
projections for the future. As shown in Table 6, the portion of
individuals in competitive employment and supported employment increased
significantly from 1986 to 1991, while the portion in facility-based
work declined. The researchers noted, however, that the
[number]{.underline} of individuals in facility-based work increased,
commenting that \"we appear to be adding integrated employment as a
service component rather than replacing segregated services with
integrated ones\" (McGaughey, 1993). It was also noted that the portion
of individuals with mental retardation and other developmental
disabilities in competitive and supported employment is lower than in
the facility-based work supported by the agencies in the survey.
Overall, however, the agencies planned major increases in the numbers
served in integrated employment, and a slight decrease in those
receiving facility-based employment services (McGaughey,1993).

Although the majority of State resources continue to support segregated
employment and adult services, there has been a significant increase in
expenditures for supported employment services by State developmental
disabilities agencies. These agencies typically finance the long term
supported employment services for individuals with mental retardation,
while funds for the initial period (up to 18 months) may come from the
State vocational rehabilitation agency.

Based on data from 42 States, growth in supported employment spending by
State developmental disabilities agencies grew more than threefold from
1988 to 1992, rising from \$62 million to \$220 million. Similarly, the
number of individuals being supported rose from approximately 14,000 in
1988 to 58,000 in 1992 (Braddock et al., 1995). There were also
substantial differences among States regarding the level of
expenditures, with large programs funded by developmental disabilities
agencies in 16 States accounting for about 75% of the supported
employment resources (Braddock et al., 1995).

There also has been considerable growth in the use of Social Security
work incentives among SSI and SSDI beneficiaries with disabilities. At
the same time, these programs are reaching a relatively small portion of
individuals receiving disability benefits. There are also significant
differences among the States regarding the extent to which work
incentives are being used. The 1619 work incentive program helps SSI
recipients with mental retardation and other disabilities to retain a
portion of their SSI benefits (1619(a)) and to stay eligible for
Medicaid even if their earnings exceed what is allowable to continue
receiving a cash benefit (1619(b)). As of June 1988, there was a total
of 32,556 participants in the 1619 program. This had risen to 69,087 by
June 1995 (SSA, 1995).

> **Table** 6 **Changes in Employment Services: 1986 -1991**

+------------------------------------+-------------+------------------+
| > **Type of Employment**           | > **1991    | > **1986         |
|                                    | > Survey**  | > Survey**       |
+------------------------------------+-------------+------------------+
|                                    | **Mean**    | **Mean**         |
+------------------------------------+-------------+------------------+
| > **Competitive Employment**       |             |                  |
+------------------------------------+-------------+------------------+
| > **- Percentage of agencies       | > **70%**   | **67%**          |
| > offering**                       |             |                  |
+------------------------------------+-------------+------------------+
| > **- Percentage of consumers in   | **18%**     | **16%**          |
| > competitive**                    |             |                  |
+------------------------------------+-------------+------------------+
| > **employment**                   |             |                  |
+------------------------------------+-------------+------------------+
| > **Supported Employment**         |             |                  |
+------------------------------------+-------------+------------------+
| > **- Percentage of agencies       | **90%**     | **42%**          |
| > offering**                       |             |                  |
+------------------------------------+-------------+------------------+
| > **- Percentage of consumers in   | **29%**     | > **7%**         |
| > supported**                      |             |                  |
+------------------------------------+-------------+------------------+
| > **employment**                   |             |                  |
+------------------------------------+-------------+------------------+
| > **Facility-based Work**          |             |                  |
+------------------------------------+-------------+------------------+
| > **- Percentage of agencies       | **90%**     | **90%**          |
| > offering**                       |             |                  |
+------------------------------------+-------------+------------------+
| > **- Percentage of consumers in   | **51%**     | **77%**          |
| > facility-based**                 |             |                  |
+------------------------------------+-------------+------------------+
| > **work**                         |             |                  |
+------------------------------------+-------------+------------------+

> Source: \"National Trends in Day and Employment Services\" (McGaughey,
> 1993).

There are major differences across the States in the rate of 1619
participation among SSI recipients. Some States (for example, Texas)
have enacted legislation mandating relevant service agencies to provide
access to information on work incentives. Data provided by the Social
Security Administration in the *Quarterly Report on SSI Disabled Workers
and Work Incentive Programs* includes information on each State\'s level
of participation. These data should be reviewed in relation to the
State\'s profile of SSI recipient demographics, including the portion
who are working age, the availability of State Supplementation Payments
(SSP), and the interaction between SSI and SSDI benefits. For the most
part, however, there are very few States which could not increase the
1619 program participation rates of adults with mental retardation.

**Making Community Employment Work**

The Washington Division of Developmental Disabilities has encouraged its
county service systems to develop job programs in community employment
settings with opportunities for inclusion. As of 1991, 1,400 of the
3,440 people receiving vocational program services were in supported
employment. The initiative was supported by a grant from OSERS, with
long range goals of changing the way unions and businesses think about
people with disabilities, and of looking beyond entry-level and high
turnover to greater opportunities for better-paying and more challenging
jobs.

An OSERS systems change grant in Maryland 1985-1990 led to conversion of
approximately 50% of day program positions to supported employment.
Maryland coupled project activities with a policy of targeting 85% of
all expansion money to supported employment. As the program entered its
fifth year, approximately 1,100 people with disabilities had supported
jobs with 268 employers, including Marriott Hotels, Pizza Hut, Radio
Shack, J.C. Penney, Red Lobster, and Ramada Inns. Earnings averaged
\$3.68 per hour, with supported employees working an average of 29.7
hours per month (Wright et al., 1991).

In West Virginia the Developmental Disabilities Planning Council funded
Community Access, Inc., a supported employment agency that places people
with severe disabilities in jobs in the community. Placements during the

first year included a full-time position in the State Department of
Highways, one in an auto parts store, and several other non-traditional
jobs. The Council also funded two projects to convert facility-based
work programs to community employment, providing day program staff with
extensive training in supported employment and personal futures planning
to help tailor employment options to individual interests and strengths.
In addition, the program includes opportunities for volunteer work, with
individuals now volunteering at the Salvation Army, a nursing home, and
a VA hospital (Zierman, 1995).

The Wood County Board of Mental Retardation/Developmental Disabilities
in Bowling Green, Ohio, provides comprehensive services to individuals
with developmental disabilities. In 1985 the Board began Wood Lane, a
community employment services program, to provide an alternative to
sheltered workshops. Services include a career development group,
occupational work sampling, work evaluation, short term transition
sites, a mobile work crew, work enclaves in community job settings, job
development, training, habilitation services, case management,
psychological services, follow-along services, and employee support
options. The program is funded by a variety of Federal, State and local
sources, including education Chapter 1 funds for student transition
training, the State vocational rehabilitation agency, ,and the Private
Industry Council. Most of the individuals have been placed in individual
placements and are working with coworkers without disabilities, allowing
them to use the natural supports of the employment setting.

***Terri\'s Story***

When Terri was 17 years old, she was having difficulty finding services
to meet her needs. She had no previous vocational experience, limited
verbal communication skills, autistic-like behaviors, and did not like
being in school. She was referred to Wood Lane for job exposure
opportunities.

The support plan for Terri was to expand her repertoire of work skills
and appropriate behaviors slowly by demanding slightly more of her at
each successive job site. Through a series of five transitional work
experiences, Terri continued to make great strides. Work became the
focal point of her day. She proved herself to be a competent worker as
well as increasing her personal living skills. She also learned to use
an electronic communication device with the help of her job coach.

Now Terri is 21, and has recently celebrated her one year anniversary as
a sorter for a local mail service. She has learned to pack her lunch,
use public transportation, and even to adjust her routine at home to
meet fluctuations in her work schedule. Her goal now is to maintain
employment and to move into a more independent living arrangement.

Adapted from Fulk and Slusser, 1993.

The Rehabilitation Research and Training Center at Virginia Commonwealth
University focuses on supported employment. In surveying States
regarding their move to supported employment and the conversion of
segregated (sheltered) employment to supported community employment,
researchers identified three States with above average percentages of
conversion: Michigan (42.7%), New Hampshire (27.5%), and Vermont
(32.6%). Through discussions with representatives in these States, they
identified characteristics which seem to promote successful expansion
and conversion to supported employment:

• Demonstrated commitment to the value of community integrated
employment, regardless of the degree and type of disability. States are
demonstrating commitment through incentive grants for conversion,
through funding strategies that reimburse fairly for services and allow
for resources to follow the individual.

• Leadership demonstrated by a continuing investment in building
consensus around the importance of community integrated employment
services among direct service staff, board members, and consumers.

• Cooperation, including close State/local cooperation in using
resources such as the Medicaid Home and Community Based Services (HCBS)
waiver.

The VCU Center also reported on information from Florida on their use of
the Medicaid HCBS waiver to expand supported employment. Florida\'s
policy of appropriating funds specifically for supported employment and
performance objectives for conversion ran into problems when State

Developmental Services funds were reduced. Supported employment was not
included as a billable service under the State\'s existing HCBS waiver,
further reducing resources available. A new expanded HCBS waiver has
been approved, however, which focuses on independent support
coordination, with waiver funds now following the individual. This means
that when people leave a facility-based work program, the dollars go
with them to supported employment. Implementation of the new approach
broadens the concept of conversion to include a variety of transition
activities, including start-up funding, flexible requirements for using
current funding during transition, relaxing of monitoring standards
during transition, and targeted development funds or incentives (Allen,
1994).

**Resources**

There are a wide array of resources that can help States and agencies to
enhance community employment opportunities for individuals with mental
retardation. The Fall 1993 issue of Impact listed several organizational
and print resources, including the President\'s Committee on Employment
of People with Disabilities Information Line: (800) 232-9675 and (202)
376-6205, for TDD. The PCEPD also sponsors the Job Accommodations
Network (JAN), a resource to employers and employment service programs
on how reasonable accommodations can be made to enable people with
disabilities to work in competitive employment. State Developmental
Disabilities Councils also add a resource in promoting community
employment.

Information on reasonable accommodations also is part of the technical
assistance available through the Disability Business Technical
Assistance Centers (DBTACs) in each Federal region. The DBTACs receive
Federal grants to promote compliance with the Americans with
Disabilities Act through education and technical assistance to the
business community and to individuals with disabilities. The RRTC at
Virginia Commonwealth University was funded in October 1993 for a third,
five­year period by the National Institute on Disability and
Rehabilitation Research to provide research, training and leadership on
supported employment for individuals with the most severe disabilities.

Resources on Social Security work incentive programs have been developed
in several States, often supported by the State Developmental
Disabilities Planning Council. Nationally, a Robert Wood Johnson
Foundation project has worked with 12 States on expanding access to work
incentives. Considerable resource information on work incentive
expansion strategies is available from Allen Jensen at the
Intergovernmental Health Policy Project, the George Washington
University in Washington, DC. The Social Security Administration also
has published information summarizing the features of the various work
incentive programs.

**INCLUSIVE RECREATION AND COMMUNITY CONNECTIONS**

Leisure, recreation, friendships and community connections are as
important to people with mental retardation as they are to everyone. An
essay on integrated community recreation by Schleien and Rynders (1989)
summarized this as follows:

> Leisure and recreation activities are an important part of American
> life. They promote physical health, social interaction, skills
> development, and self-esteem. Unfortunately, these activities have
> historically received relatively low priority in programs for persons
> with developmental disabilities. This long-standing neglect is
> distressing because appropriate participation in leisure/recreation
> activities is associated with development of collateral skills
> important in daily life, such as independent living and work skills.
> The possession of these skills can play an important role in the
> successful community adjustment of individuals with disabilities.
>
> Individuals with disabilities often form negative self-concepts and
> low expectations for themselves as a results of society\'s devaluation
> of their contributions \... Participation in community based
> integrated leisure/recreation activities offers a natural setting for
> overcoming these problems through fostering competence, autonomy, and
> confidence, as well as improved social interactions with peers who do
> not have disabilities\...
>
> \[Innovative leisure/recreation\] programs provide evidence that
> individuals with disabilities not only benefit greatly from community
> recreation, but also that their presence in integrated programs makes
> an important contribution to the experiences of participants who do
> not have disabilities. It\'s through integrated leisure/recreation
> activities that many of the ideals implied by the concepts of
> normalization and least restrictive environment can be realized
> (Schleien and Rynders, 1989).

Although opportunities for community leisure and recreation seem to be
increasing, especially for children in inclusive education, many people
with mental retardation and other developmental disabilities express a
need for these activities and for the connections they bring. Findings
from the person-to-person National Consumer Survey of people with
developmental disabilities include:

• 55% of individuals (all ages) expressed a need for recreation and
leisure services and supports.

• Less participation in ordinary community living activities such as
going to a food store or supermarket and going to the movies than people
with less severe disabilities.

• Adults much more apt to feel very lonely or remote from other people
than adults in the general public, as well as less likely to have
visited or even to know the names of the families living close to them
(Jaskulski and Metzler, 1990).

***Emily\'s Story***

Emily is a 16-year-old girl with mental retardation. She is vivacious
and enjoys socializing tremendously. In June 1990, she joined a Girl
Scout troop that meets near her home. Before her first meeting, she had
already read the entire handbook and identified the badges she wanted to
earn. Within two months, she earned two badges: pet care and toddler
tending.

When Emily\'s enthusiasm and sometimes unpredictable behavior
disconcerted some of the other Scouts, the troop leader tactfully
explained about Emily\'s disability. It relieved the other girls to know
that there was a reason for her behavior. She began making friends
within the troop and spending time with them outside of Scouting. She
also enjoyed numerous troop activities, including writing letters to
members of the Armed Services during the Persian Gulf War, selling Girl
Scout cookies, and attending a sleepover with other Scouts at the local
science museum. She also has been nominated for a national Scouting
experience, providing further opportunities to broaden her horizons.

Emily\'s adventures in Girl Scouting are complemented by her broadening
horizons in other activities. She has begun volunteering at a local
hospital one afternoon a week where she helps out in the marketing
office and delivers beverages to patients. On hospital days Emily is
quick to come home from school, get her hospital ID, and get on her way.
Her mother is proud of her growing maturity and optimistic about her
transition into employment, based on her success in Scouting and
volunteer work.

Adapted from Friendships and Community Associations (Reidy, 1993).

Friendships and community connections for people with developmental
disabilities go beyond physical integration through living in the
community to actually being of the community. No matter how severe their
disability, people benefit from having friends who know and care about
them as individuals. Like everyone else, people with mental retardation
value friendships because of the intimacy and affection, companionship,
support and help in feeling important and valued. People with
disabilities also indicate that their friendships with nondisabled
community members are very important, both directly and indirectly.
There is also considerable evidence of positive growth and changes in
behavior when people who have difficulty speaking or expressing
themselves have a chance to interact with community members (Amado,
1993).

Recreation, friendships and community connections have received
increasing attention over the past several years. \"Circles of friends\"
and related efforts to help people with developmental disabilities build
and maintain friendships and caring relationships with community members
have been developed by numerous service agencies. Special Olympics and
other specialized recreational programs have been augmented by expanded
opportunities in most communities for some degree of integrated
recreation. At the national level, implementation of the ADA is reducing
barriers for people with disabilities at Despite these trends, however,
much more needs to be retardation are supported in making friends,
having

private as well as public recreation sites. done to see that people with
mental community connections, and enjoying integrated recreation and
leisure.

**Building Friendships and Community Connections**

One of the leaders in the field of friendships and community
connections, Angela Novak Amado, recently summarized several projects
that have developed effective strategies for helping people with
disabilities to meet and form friendships with other community members
and to be more fully included in their communities (Amado, 1993). In the
Friends Project, for example, 23 individuals with various levels of
developmental disability were assisted in having more friendships with
persons without disabilities and to be more fully included in their
communities. Agency staff working with these individuals were helped to
become \"community connectors,\" and agency practices were modified to
be more supportive of relationship and community connection building.
Each consumer was supported through a \"focus group\" to design and
follow up on individually tailored strategies. Funded by the Minnesota
Developmental Disabilities Planning Council, the project also has
produced a \"how to\" manual: *Friends. A Manual for Connecting Persons
with Disabilities and Community Members* (Amado et al., 1990). Similar
approaches were used in Chicago, IL; Louisville, KY; Powell River, BC
(Canada); and various communities in western Massachusetts.

Amado stresses three basic principles associated with the success of
these projects:

•Act as if almost anything can happen.

•Start small-one-to-one.

> •Plan and implement the program based on a capacity-based view of the
> individual (Amado, 1993).

The coordinator of the western Massachusetts project also has summarized
the experience of successful programs through emphasis on integration
into recreational and leisure activities, religious congregations, the
development of personal relationships with and without disabilities, and
through such routine activities as becoming regular visitors at
libraries, bakeries, coffee shops, and other public places (Reidy,
1993).

A neighborhood association in Illinois sponsors a Community Building
Project designed to invite community members to include people with
disabilities in their everyday lives-to go to church, a ball game, or
dinner together. Many people with disabilities spend most of their time
with other people with disabilities in programs set up for \"them.\" The
Community Building Project tries to change the \"them\" to \"us,\"
recognizing also that people with disabilities have much to offer
community life. The project is a commitment to the inclusion of people
with disabilities in everyday life within a particular community. People
who join a Community Building group develop a relationship with a person
with disabilities and help him or her be an active part of the
community. The key to community building is making connections and
building relationships through family, friends, neighbors, small
businesses, places of worship, associations, libraries and clubs. People
with developmental disabilities are becoming active members of their
communities, assuming responsibilities, and making lasting friendships
through the Community Building Project.

In Oregon, Polk Community Living (PCL) provides community-based services
to adults with mental retardation and other disabilities. The agency is
committed to providing the services necessary for people to become
\"totally integrated,\" of which helping people meet and develop
relationships with community members is an important part. They have
found the following approaches to be effective:

> •**Meeting others through common interests**: Staff spend a lot of
> time learning about each person\'s interests and using interests as
> the context for helping people to develop friends and acquaintances.
>
> • **Support to make it happen**: Once activity interests have been
> determined, staff provide whatever supports are necessary to make them
> happen. Sometimes this results in an individual\'s signing up for a
> class or joining an organization. Some of the best relationships have
> developed through participation in civic organizations or adult
> education classes.
>
> •**Supporting established relationships**: Prior to people\'s receipt
> of PCL services, the agency tries to learn all about them and the
> people who are involved in their lives. Once they are in their new
> community residence, the agency believes it has the responsibility to
> help the individual maintain these relationships. They follow through
> on this commitment with resources, including transportation, support
> to consumers in entertaining family and friends, and letting people
> know about upcoming events.
>
> •**Using staff as a model**: Staff play one of the biggest roles in
> the development of friendships. Staff are encouraged to develop
> personal relationships with the people they support. The agency has
> found that community members are often afraid of or don\'t know how to
> interact with people with developmental disabilities, so staff
> behavior becomes a model that other community members follow. Some
> people also have made community connections as a spin-off from
> relationships with staff. It is not unusual for someone to become
> acquainted with a staff member\'s family and friends, and some of
> these contacts have developed into lasting relationships (Paradigm
> Systems, Inc., 1992).

*Friendships and Community Connections between People with and without
Developmental Disabilities* (Amado, 1993) presents several descriptions
of successes in supporting friendships, connections and other inclusive
activities, as well as an extensive bibliography. The *Impact* series
from the Institute on Community Integration, University of Minnesota,
includes feature issues on integrated leisure and recreation (Volume
2(3), Fall, 1989) and on integrated outdoor education/adventure (Volume
4(4), Winter, 1991-92). Both of these issues include examples of
inclusive recreation and resource information. An issue on challenging
behavior (Volume 4(1), Spring, 1991) includes information on how
relationships and community connections have been effective in reaching
and supporting individuals with challenging behavior in ways that
greatly increase their inclusion. Organizational resources include TASH,
The Association for individuals with Severe Handicaps, and the Arc/US.
Both groups have developed resource information on inclusive recreation
and leisure activities.

***Robert\'s Story***

Learning basketball skills from the other young adults who regularly
play at the local community center, going out to dinner, visiting the
science museum, and playing soccer are some of the activities that
Robert now enjoys. This was not always the case. Because of challenging
behaviors, he rarely had the opportunity to engage in integrated social
and recreational activities prior to reaching adulthood. As a result, he
was rarely exposed to peers without disabilities except for other
children in the foster family with whom he had lived since infancy. He
had few interests common to young adults his age. He also had minimal
communication skills, further isolating him from peers and the
community, and likely contributing to his having challenging behaviors.

During his final year of school, Robert participated in a Community
Service Training Program. He worked closely with two facilitators whose
responsibility was to promote development of the social skills Robert
needed to be able to interact with young men his own age.

Working with Robert was difficult at first because of his challenging
behavior and his poor communication skills. The facilitators soon found,
however, that Robert was attempting to communicate with others and
express his preferences in the best manner in which he know how.

As Robert and facilitators got to know each other, his positive
responses to people and activities increased. His communication skills
improved dramatically and he significantly reduced his challenging
behaviors. He interacts with other young adults and engages in a variety
of community activities. The communication skills which Robert\'s
teachers thought he couldn\'t learn are now used everyday. With a
combination of oral speech and signing, he initiates and respond to
others to indicate his likes and dislikes and becomes involved in more
social conversations.

After 18 months, his new social and communication skills allowed Robert
to make friends with a group of young adults at his local community
center. These experiences have set Robert on a path to initiate social
relationships, building a network of others he can rely on. These skills
will also help him in supported employment and supported community
living in the future.

Adapted from \"At Home in the Community,\" Impact 4(1), Spring 1991.

**AGING AND RETIREMENT**

People with mental retardation are living longer, along with everyone
else who has benefited from improved nutrition and medical care.
Although life expectancy continues to be shorter for individuals with
severe and profound levels of mental retardation who are non-ambulatory,
the vast majority of people with mental retardation now have lifespans
nearly the same as individuals without mental retardation (Eyman and
Borthwick-Duffy, 1994). Regardless of their choice to retire or to keep
on working or participating in daily program activities, they need
services and supports that address their move into being \"senior
citizens.\"

***Jan's Story***

Jan is 59 years old. She lived in a large State mental retardation
facility from the age of 14 until the age of 55, when she and her best
friend wrote the Governor asking for help to move into the community.
Now she and her friend share an apartment in a small city near where Jan
lived as a child. They get along with support from their case manager
and community living support staff, who help them with shopping, cooking
and meal planning, money management, and keeping track of the benefits
they are entitled to. Jan is not interested in working at this point in
her life. She spent two years at a sheltered workshop when she first
moved into the community, but requested the opportunity to retire.

Adapted from Jaskulski, 1994b.

General demographic trends in aging, coupled with social trends of adult
children living with parents, caring for elderly parents, and
single-parent families, are converging with longer lifespans for people
with mental retardation. It is increasingly common for family members
\"to have lifelong rather than time-limited responsibility for a
relative with retardation, for caregivers to have more than one family
member dependent on them at the same time, and for caregivers to have
less marital support\" (Seltzer and Krauss, 1994). Recognizing the need
for supports as individuals with mental retardation age and involved
family members become unable to provide care is an important component
in the journey to inclusion, especially for those who have always been
included in the family and community.

States and local service systems are providing supports through senior
centers and other programs funded by the Older Americans Act, through
Medicaid HCBS waivers and Social Services Block Grant programs, and
collaboration between mental retardation/developmental disabilities and
aging services at the State and community level.

Moving into retirement can be problematic for older adults with mental
retardation, especially those who have not worked in competitive or
community employment. Although the availability of retirement
preparation and support is increasing, many older individuals with
mental retardation continue in sheltered employment and adult activity
programs beyond their mid-50s to mid-60s when most workers leave the
workplace (Sterns and Sutton, 1993). Some service programs have run into
problems with regulations that are interpreted as requiring people to
participate in work-related activities, even if they are past retirement
age. Older individuals with mental retardation also may not be familiar
with activities and supports that would be an alternative to continuing
in the daily programs they have been attending.

There are indications, however, that States are developing strategies
specifically to meet the needs of the growing numbers of older adults
with mental retardation. A survey in the mid-1980s, for example,
identified 327 community-based programs targeted to this population in
40 States (Seltzer and Krauss, 1987). The survey also found that several
supplemental retirement programs had developed, primarily since around
1980. These programs provide part-time day programs for elderly people
with mental retardation and serve as retirement options, with a primary
focus on recreation rather than employment or vocational activities. At
the time of the survey in 1984, 30 programs were identified in 15
States, serving an average of just under 20 people (Seltzer and Krauss,
1987).

Including older adults with mental retardation in generic aging service
programs requires attention to individual support needs as well as
supports needed by both the mental retardation and aging service
systems. Although collaboration between the aging and mental
retardation/developmental disabilities systems is still limited,
examples are increasing. Collaborative activities include shared
training opportunities, supporting participation of older adults with
mental retardation in community senior centers and activities,
coordinated assessments of support needs, and pooling resources.
Examples of approaches in supporting collaboration include the
following:

*Teaming to Promote Inclusive and Appropriate Aging Experiences for
Persons with Developmental Disabilities* is a two-year initiative funded
by the Federal Administration on Aging, being carried out jointly by the
Hawaii Developmental Disabilities Council, the State Executive Office on
Aging, and the University of Hawaii/UAP. The project focuses on
collaboration among agencies serving aging persons, direct care staff,
community members, family members of aging individuals, and aging people
with and without developmental disabilities. Teams have been established
to focus on three areas: inclusion in generic seniors programs; day care
programs and services; and supports for family caregivers (Zierman,
1995).

The North Carolina Developmental Disabilities Council provided funding
to the Developmental Disabilities Training Institute to develop a
statewide interagency training program. The *Training Approach to
Improving Community Services for Older Citizens is* cross-training
representatives of developmental disabilities and aging networks on
supporting older persons with developmental disabilities. Central to
this initiative is a model training curriculum which has been piloted in
four sites, with two additional sites planned. The result of the
training is an environment in which professionals work together to
improve access to generic aging services and supports for older adults
with developmental disabilities. The project also is helping local
communities to explore innovative and individualized approaches for
including older adults with developmental disabilities in generic aging
services (Zierman, 1995).

***Bill\'s Story***

Bill was one of the first people to receive services from Comprehend,
Inc., a program created in 1985 to serve people with mental
retardation/developmental disabilities, age 55 and older. The program
focuses on providing opportunities for choices of social, recreational,
residential and economic services available in the community.

At the time he joined the program, Bill was 64 years old and living
alone on his Social Security income. He had mild mental retardation and
multiple medical problems, including a coronary pacemaker. He was unable
to read or write other than his name. Bill had lived all his life in the
same town and worked as a laborer at local businesses for many years. In
retirement, he spent his leisure time aimlessly wandering the business
district and making spontaneous visits to offices and stores. He was a
lonely man, well received by everyone, but considered a \"likeable
nuisance.\"

As a first step in the Comprehend program, Bill received support in
identifying his needs and improving his living situation. Comprehend
helped him to move into a three-person home within walking distance of
the business area, including support in personal care and financial
guidance. Bill paid off debts he had accumulated with local stores and
learned better management of his personal funds, an area that had caused
problems for him in the past. His case manager provided transportation
for his medical care, and also encouraged him to attend senior citizen
centers three days per week. Bill became involved as a helper at the
senior center and was there for nearly every event.

As a result of the support available through the Comprehend program,
Bill found a more productive and socially valued place in his community.
His wandering around the town decreased to a minimal level, he
contributed to the operation of the senior center, he dated, and he made
new friends who accepted him for what he had to offer.

Adapted from Arnold, 1993.

In Nebraska the Developmental Disabilities Council funded the Eastern
Nebraska Office on Aging to enhance services to older adults with
developmental disabilities and to older caregivers of adult children
with developmental disabilities. The *Mainstream: Eldercare for the
Older Adult with Developmental Disabilities* project encouraged
inclusion of elderly persons with developmental disabilities in regular
senior programs. Specialized services, including a case manager, were
provided; 145 individuals received aging program services, including
participation at a multi-purpose senior center, home delivered meals,
and homemaker services. An innovative aspect of the program is the
inclusion of five volunteers with developmental disabilities, all over
age 60. They provided 1,226 hours of volunteer service to the Omaha
community during 1994 as Senior Companions and Foster Grandparents. The
project also improved the Office on Aging\'s assessment of elderly
individuals\' long term care needs, taking into account an individual\'s
cognitive level. There is also a \"how to\" manual available for
replication of the approaches that were successful in promoting
inclusion (Zierman, 1995).

***Irving\'s Story***

Irving has a clear idea about what older persons with developmental
disabilities deserve: \"I believe that everyone should be challenged to
the best of their ability level.\" That is certainly what is happening
for Irving. At the age of 54 he works at the job he has held for the
past 19 years, lives in his own home, and is improving the world for
persons with disabilities through his self-advocacy activities.

The motivation for Irving\'s self advocacy is his vision for people with
disabilities: for people to feel comfortable making decisions for
themselves, and secure in the knowledge that people are listening to
them. He was the first self-advocate to be on the national Arc Board of
Directors, and he has been on several other boards and advisory
councils. Irving received the Citizenship Award from the Arc in
recognition of his \"overcoming obstacles toward achieving success as a
leader and contributing member of the community.\" He is also involved
with the self­advocacy group People First.

Irving attended the signing of the Americans with Disabilities Act with
a friend who was excited that it would help immediately. Irving was more
excited, however, for the children who will benefit from the ADA in the
years ahead. \"When I was young, parents never knew what was out there.
Today the situation is better. The public doesn\'t try to hide the
situation.\"

Irving feels fortunate to have had opportunities for personal
fulfillment and to make a difference in the world. He\'s working through
his advocacy to ensure that all people with mental retardation and other
disabilities have those same opportunities.

Adapted from Kloos, 1993.

Respect for individual choices and preferences are an essential
component of designing programs for older people with mental retardation
and other developmental disabilities. Just as people without mental
retardation, some people choose retirement while others prefer to keep
on working, of to part-time employment. Some individuals may need help
in exploring retirement options, and support in moving into new
activities. Prospects are improving, however, for older people with
mental retardation to be included in activities of their choice.

The *Person Centered Later Life Planning Project* has been developed by
the Rehabilitation and Research Training Center Consortium on Aging and
Developmental Disabilities, based at the

Institute on Disability and Human Development, University of Illinois at
Chicago. Although the project also works with family members and program
staff, the focus is on training older individuals with mental
retardation and other developmental disabilities to examine later life
options and to guide their own support planning process. Exploration of
new experiences in leisure activities and opportunities to participate
in community activities help participants make informed choices about
retirement and aging. In addition, several participants have developed
new interests and abilities (Heck, Heller, Factor et al., 1993).

***George\'s Story***

Several times a week, George, a man in his mid-forties, spends his
evenings at the local Knights of Columbus (K of C) Hall near his home.
Weekly, he helps with the bingo games. He likes to work in the kitchen
preparing the meal they serve on bingo nights. Sometimes George shares a
meal with fellow Knights. Other times, George attends by himself and
visits with other members. He has rarely missed a meeting. He also
marches in the annual Saint Patrick\'s Day parade, and participates
actively in all fund-raising activities.

George has been a Knight since 1988. He is a Third Degree Knight, a very
respectable position to hold with the organization, as Fourth Degree is
the highest level. He also recently sponsored another man to join the
organization.

George\'s involvement with members is not limited to his time at the K
of C Hall. Other members have invited George to their homes, and he has
reciprocated. In 1990, when it came time for him to move to a new
apartment, several of his friends from the Knights came over to help.

George\'s contribution to the organization is significant. The Grand
Knight commented on his helpfulness: \"George is always willing to help
out with any project.\" In fact, he was commended in a recent issue of
their newsletter for selling a large number of raffle tickets. He works
tirelessly at bingo games, and he recently worked 12 hours straight at
the summer picnic.

Up until a few years ago, George, diagnosed with mental retardation,
spent most of his life living in a State institution. He then lived in a
community residence for several years before moving into a staffed
apartment with a roommate. During the day, he works at a sheltered
workshop. Before joining the Knights, most of his free time was either
spent watching television or riding his bicycle up and down the street
near his house. He had few interests and fewer friends outside his
service program.

Although George is not a talkative man, his \"before\" and \"after\"
photographs, along with testimonies from staff and friends, highlight
the change in his personality. One photo, taken the night of his
initiation into the Knights, shows George with a serious, almost
fearful, expression on his face. A recent photo, taken at the K of C
Hall, shows him relaxed, smiling, with a warm twinkle in his blue eyes.
Another photo shows George proudly wearing his K of C pin on his lapel.
Other members describe George as being very shy when he first joined.
They say he is much more outgoing now, and participates in the joking
and bantering that is part of the atmosphere.

When George is asked about what he enjoys about being a member, he says,
\"I like that they ask me to help. I like joking around with them; we
joke about my cat.\" For George, his initiation into the Knights of
Columbus has also been a true initiation into community life.

Source: \"Friendships and Community Associations\" (Reidy, 1993).

IV. **INCLUSION IN COMMUNITY HOUSING**

•ASPECTS\' OF COMMUNITY LIVING

•SUPPORTED COMMUNITY LIVING

•TRENDS IN FINANCING AND HUMAN RESOURCES

•SUMMARY

One Man\'s Walk Through Modern History of Residential Services

by Kevin Otley

When I lived at Lake Owasso State institution in Minnesota, you had to
ask for everything: \"Can you let me out?\" \"Can I have a can of
pop?,\" \"Can I stay up a little bit longer?\"

When I moved into a group home, I had to follow all of the rules. I had
to go to bed at a certain time, and when I was in bed, I had to be
asleep; that was that. I lived with two other guys. We were being
watched all the time, 24 hours a day, seven days a week.

Two years ago I got married. My wife and I moved into our own apartment.
Now that I have my own place, I make the decisions. I have my own keys.
I can let myself out, and let myself back in.

Now I can come and go when I want. I can make my own food, and I decide
whether I want to have breakfast or lunch, or when I\'m ready for a
snack. We can invite friends to stay over. My wife and I decide when the
staff comes over. They help us with some things, but we make our own
decisions.

Reprinted from *The Guidebook on Consumer-Controlled Housing (1995),*
Fields and Lakin (1995).

With remarkable brevity and clarity Kevin Otley describes the evolution
in housing and related support services for persons with mental
retardation and developmental disabilities. He identifies three major
phases in this evolution: institutions, supervised community living, and
supported community living. He also captures well the experiences that
many people associate with each phase. While we should probably let well
enough alone (Mr. Otley pretty much says it all), this chapter outlines
some of the concepts, accomplishments, challenges, and future directions
in community housing and related support services.

**ASPECTS OF COMMUNITY LIVING**

Most definitions of community focus on aspects of mutuality and
reciprocity, as reflected in shared interests, interpersonal
relationships, interdependent roles and involvements, and common
expectations. Similarly, the goals of community living for people with
mental retardation and other developmental disabilities are linked to
how people define a quality of life within their respective communities.
For the purposes of this overview, six broad aspects of satisfying
community living are considered: 1) presence in the community; 2)
health, safety, and basic comfort; 3) personal growth and development;
4) social relationships; 5) valued community participation; and 6)
personal self-determination.

**Community Presence**

Community presence refers simply to the opportunity for people to have
physical presence in the community. This might go without note if it
still were not being denied to so many people.

***Out of Institutions and into the Community***

In recent years people with mental retardation clearly have had
substantially increased access to community living. In 1967, State
institutions housed 194,650 individuals with mental retardation and
related developmental disabilities; in June 1994, they housed 65,735
people. Along with the \"deinstitutionalization\" has come tremendous
growth in community services. In June 1977 only 20,409 (8.2%) of the
247,796 individuals receiving residential services outside their natural
or adoptive homes from State-licensed or State-operated residential
services were in places of six or fewer residents. Seventeen years later
in 1994, 145,976 (47.0%) of the 310,911 individuals receiving
residential services were in places with six or fewer residents.
Conversely, in 1977 83.6% of persons receiving residential services
lived in MR/DD institutions of 16 or more residents as compared with
34.6% in 1994.

Another indicator of changing patterns of residential care is the
average number of people living in each residential setting in which
people with mental retardation receive residential services. That
average decreased from 22.5 residents in 1977 to 4.9 residents in 1994.

**Broad Indicators flnlers1a1e Variability**

There has been great variation in the extent to which people living in
various States are provided the opportunity to live in community
settings. As Table 7 shows, the range of variability among States is as
follows:

• Average size of residential settings, from 1.3 to 20.7 individuals;

• Percentage of people living in seifings of 1S or fewer residents, from
19.0% to 100.0%; and

• Percentage of those in places with six or fewer residents, from 4.7%
to 100.0% (Prouty and Lakin, 1995).

***Community Services for People with Severe Impairments***

Individuals with severe developmental, behavioral, and health
disabilities are living in the community all through *the United States,
and their numbers are growing rapidly. But providing adequately
supported access to community* services for people with significant
medical and behavioral needs still presents challenges, and as a result
community services for people with the most severe disabilities have
been slower to develop. This discrimination and delay have caused a
situation in which it is estimated that over 80% of the people who are
living in public and private residential institutions and nursing homes
are people with severe intellectual, medical and behavioral
disabilities, despite the evidence that community living is working well
for others with severe and complex conditions. On June 30, 1994 nearly
two-thirds (65.5%) of State institution residents were reported to have
profound mental retardation. Similar patterns exist for persons with
medical or behavioral impairments. There are many examples of successful
community housing and support services for persons with severe
disabilities, and these services are growing rapidly. There is also
well-documented evidence of the developmental benefits of community
living (Larson and Lakin, 1989). Despite these factors, institutional
placement still prevails for people with severe disabilities in many
States. Denial of access to community living benefits amounts to
systematic discrimination, yet continues to be an all too common
practice.

**Health, Safety and Basic Comfort**

One of the important concerns in community living, especially in States
that have developed commitments to community membership for everyone,
has been basic health, safety, and comfort *needs.*

Table 7 Summary Statistics on the Size of Residential Settings on June
30, 1994

+-----------------+----------+----------+--------------+-------------+
| Total           | Total    | >        | > Percent in | > Percent   |
|                 |          |  Average | > Settings   | > in        |
| Settings        | R        | >        | > with       | > Setting   |
|                 | esidents | > R      | >            | > with      |
|                 |          | esidents | > 1-15 Res.  | >           |
|                 |          | /Setting |              | > 1-6 Res.  |
+-----------------+----------+----------+--------------+-------------+
| > AL 212        | 2,182    | > 10.3   | > 47.7%      | > 16.5%     |
+-----------------+----------+----------+--------------+-------------+
| > AK 303        | 576      | > 1.9    | > 93.4%      | > 81.3%     |
+-----------------+----------+----------+--------------+-------------+
| AZ 1,503e       | 5,229    | > 3.5    | > 96.8%      | > 90.5%     |
+-----------------+----------+----------+--------------+-------------+
| AR 348e         | 2,172    | > 6.2    | 33.6%        | > 19.8%     |
+-----------------+----------+----------+--------------+-------------+
| 7,232\*         | 42701    | > 5.9    | 72.9%°       | > 65.2%     |
+-----------------+----------+----------+--------------+-------------+
| CO 1,474\*      | 3,876    | > 2.6    | > 89.2%      | > 72.6%     |
+-----------------+----------+----------+--------------+-------------+
| CT 1,698        | 5,571    | > 3.3    | > 75.9%      | > 66.2%     |
+-----------------+----------+----------+--------------+-------------+
| DE 199          | 705      | > 3.5    | > 54.6%      | > 54.6%     |
+-----------------+----------+----------+--------------+-------------+
| DC 227          | 1,084    | > 4.8    | > 100.0%     | > 66.5%     |
+-----------------+----------+----------+--------------+-------------+
| 1,143           | 9,107    | > 8.0    | 56.3%        | 36.1        |
+-----------------+----------+----------+--------------+-------------+
| GA 734          | 3,639    | > 5.0    | 42.3%°       | > 42.3%     |
+-----------------+----------+----------+--------------+-------------+
| HI 830          | 1,118    | > 1.3    | 91.4%        | > 90.8%     |
+-----------------+----------+----------+--------------+-------------+
| ID 505          | 1,665    | > 3.3    | > 79.8%      | > 49.5%     |
+-----------------+----------+----------+--------------+-------------+
| IL 1,042        | 15,768   | > 15.1   | > 35.4%      | > 4.7%      |
+-----------------+----------+----------+--------------+-------------+
| **IN \'1,689**  | 7,626    | > 4.5    | 69.5°1°      | > 32\'.9%   |
|                 | \'\'     |          |              |             |
+-----------------+----------+----------+--------------+-------------+
| IA 1,544\*      | 5,839    | > 3.8    | 66.6%°       | > 34.4%     |
+-----------------+----------+----------+--------------+-------------+
| KS 233          | 3,002    | > 12.9   | > 50.8%      | > 19.5%     |
+-----------------+----------+----------+--------------+-------------+
| KY 1,064        | 2,705    | > 2.5    | 57.0%        | > 50.0%     |
+-----------------+----------+----------+--------------+-------------+
| LA 1,003        | 7,953\*  | > 7.9    | 47.1%        | > 38.5%     |
+-----------------+----------+----------+--------------+-------------+
| 481             | 1,553    | > 3.2    | 82.8%        | > 63.0%     |
+-----------------+----------+----------+--------------+-------------+
| MD 1,223        | 4,483    | > 3.7    | 77.4%°       | > 77.4%     |
+-----------------+----------+----------+--------------+-------------+
| MA 1887         | 8,324    | > 4.4    | > 74.5%      | > 64.0%     |
+-----------------+----------+----------+--------------+-------------+
| MI 2,247e       | 9,130    | > 4.1    | 95.5%        | > 95.5%     |
+-----------------+----------+----------+--------------+-------------+
| MN 2,591e\*     | 1        | > 4.0    | > 78.9%      | > 60.3%     |
|                 | 0,256e\* |          |              |             |
+-----------------+----------+----------+--------------+-------------+
| 231             | 2,836    | > 12.3   | > 25,1% \"   | > 14.4%°    |
|                 | \'\'     |          |              |             |
+-----------------+----------+----------+--------------+-------------+
| MO 1,116        | 6,218    | > 5.6    | 61.9%        | > 38.3%     |
+-----------------+----------+----------+--------------+-------------+
| MT 690          | 1,472    | > 2.1    | > 88.9%      | > 52.9%     |
+-----------------+----------+----------+--------------+-------------+
| NE 323          | 1,694    | > 5.2    | > 59.5%      | > 47.2%     |
+-----------------+----------+----------+--------------+-------------+
| NV 240          | 608      | > 2.5    | > 75.3%      | > 75.3%     |
+-----------------+----------+----------+--------------+-------------+
| 2,137e          | 3,348e   | > 1.6    | 98.4%        | > 91:2°1°   |
+-----------------+----------+----------+--------------+-------------+
| NJ 1,306        | 9,930    | > 7.6    | 44.7%        | > 44.7%     |
+-----------------+----------+----------+--------------+-------------+
| NM 210\*        | 1,130\*  | > 5.4    | > 67.7%      | > 43.6%     |
+-----------------+----------+----------+--------------+-------------+
| NY 6,100\*      | 30,938   | > 5.1    | > 82.4%      | > 25.1%     |
+-----------------+----------+----------+--------------+-------------+
| NC 756          | 6,893    | > 9.1    | > 57.4%      | > 47.1%     |
+-----------------+----------+----------+--------------+-------------+
| 595             | 1,854    | > \"     | 87.8^6^/o    | > 59:0%\`   |
|                 |          | >        |              |             |
|                 |          | > 3.1    |              |             |
+-----------------+----------+----------+--------------+-------------+
| OH 2,257        | 13,312   | > 5.9    | > 54.5%      | > 34.1%°    |
+-----------------+----------+----------+--------------+-------------+
| OK 811          | 3,838    | > 4.7    | 41.2%        | > 34.7%     |
+-----------------+----------+----------+--------------+-------------+
| OR 991          | 3,803    | > 3.8    | > 83.5%      | > 68.9%     |
+-----------------+----------+----------+--------------+-------------+
| PA 4,219        | 14,998   | > 3.6    | > 59.2%      | > 53.6%     |
+-----------------+----------+----------+--------------+-------------+
| 324             | 1,290\'  | > 4.0    | 96.7%        | > 72.2%     |
+-----------------+----------+----------+--------------+-------------+
| SC 898          | 4,686    | > 5.2    | > 57.4%      | > 26.6%     |
+-----------------+----------+----------+--------------+-------------+
| SD 500e         | 1,769    | > 3.5    | > 80.2%      | > 41.2%     |
+-----------------+----------+----------+--------------+-------------+
| TN 538          | 4,248    | > 7.9    | > 54.6%      | > 17.0%     |
+-----------------+----------+----------+--------------+-------------+
| TX 1,207        | 13,742   | > 11.4   | > 36.4%      | > 29.3%     |
+-----------------+----------+----------+--------------+-------------+
| UT 534          | 2,163    | > 4.1    | 57.8%        | > 43.4^6^/6 |
+-----------------+----------+----------+--------------+-------------+
| VT 566          | 770      | > 1.4    | > 100.0%     | > 100.0%    |
+-----------------+----------+----------+--------------+-------------+
| VA 155          | 3,207    | > 20.7   | > 19.0%      | > 7.0%      |
+-----------------+----------+----------+--------------+-------------+
| WA 1,726        | 6,675    | > 3.9    | > 75.5%      | > 63.9%     |
+-----------------+----------+----------+--------------+-------------+
| WV 405\*        | 1,214\*  | > 3.0    | > 78.7%      | > 43.7%     |
+-----------------+----------+----------+--------------+-------------+
| 3,066\'\`       | 11,248   | > 3.7    | 67\'.2%      | > 58.4°,6   |
+-----------------+----------+----------+--------------+-------------+
| WY 341          | 763      | > 2.2    | > 79.6%      | > 71.2%     |
+-----------------+----------+----------+--------------+-------------+
| U.S. Total      | 310,911  | > 4.9    | > 65.4%      | > 47.0%     |
| 63,654          |          |          |              |             |
+-----------------+----------+----------+--------------+-------------+
| > e indicates   | > \*     |          |              |             |
| > estimate      | > i      |          |              |             |
|                 | ndicates |          |              |             |
|                 | > 1993   |          |              |             |
|                 | > data   |          |              |             |
+-----------------+----------+----------+--------------+-------------+
|                 |          | 76       |              |             |
+-----------------+----------+----------+--------------+-------------+

**Access to Appropriate Medical Care**

As people with mental retardation test and extend their abilities to
live as independently as possible in their communities, they must be
assured of appropriate attention to their health and wellness. National
and State studies have shown that persons with mental retardation in
community residential settings almost universally receive medical and
dental services at least annually (Hill et al., 1989). Care providers
and family members overwhelmingly report satisfaction with services
received; even the community, medical and dental services for persons
with very extensive health care needs generally receive positive reviews
(Lakin, Burwell, Hayden and Jackson, 1992).

The general satisfaction with the adequacy of available medical services
is perhaps not surprising, since they are similar to those used by the
increasingly older, more often disabled \"general public.\" But problems
exist. Increasingly people who use Medicaid report problems in obtaining
medical care and related services. People with modest incomes that
exclude them from qualifying for Medicaid are frequently without health
insurance or excluded from private insurance because of pre-existing
condition exclusions, high premiums and copayments, or are provided
benefit packages that limit specific benefits they need. People from
rural areas who need specialized medical services often have difficulty
accessing them. In a number of States managed care enrollments of
Medicaid recipients, including those with developmental disabilities,
are being developed. Rhode Island has proposed a particularly innovative
approach that would bundle both service users and service providers into
a single managed care buyer pool.

**Providing for Basic Safety and Well-Being**

Assuring safety and well-being of people in community housing is
increasingly challenging for several reasons. First, there are more and
more community living arrangements: community residential services were
provided in almost 64,000 different sites in 1994, an increase from
11,000 in 1977. Second, there is increasing development of, living
arrangements with less than full time supervision, which permits people
to enjoy their greatest possible liberty, but reduces monitoring of
their well-being. Third, \"caseloads\" for service coordinators/case
managers are often too large for careful attention to people\'s lives
(i.e., often 50 or more), and most State licensing and certification
programs provide for only annual surveys.

Assuring safety in an increasingly dispersed service delivery system,
especially when coupled with emphasis on individual preference and
choice, requires new ways of thinking about \"quality assurance\" and
related quality enhancement activities. As noted in the previous
chapter, supports to individuals in establishing and maintaining ongoing
mutual relationships, involvement, and commitments among people with
mental retardation, their families and friends, neighbors, advocates and
others, are gaining in importance. These relationships further enhance
individual safety and well-being, by increasing the circle of people who
know and care about each person in community living.

**Guaranteeing Basic Rights**

To paraphrase Martin Luther King Jr., people with mental retardation
have the same rights as other citizens, they are just waiting for those
rights to be recognized. Societal attitudes towards persons with mental
retardation hinder recognition of their basic rights. Certainly the low
expectations of the \"qualifications\" of citizens with mental
retardation represents one of the most substantial barriers to
benefiting fully from the Americans with Disabilities Act. A critically
important protection for the rights of people derives from being
accepted and valued as full members of the society. Such acceptance is
fostered by opportunities to fulfill valued roles in their community as
neighbors, coworkers, purchasers of goods, community volunteers, and
friends.

**Equal Opportunities for Children to Grow Up in a Family**

For children in this culture the basic right to live in a family is
generally recognized. The national commitment to this right is reflected
in the policy of permanency planning, outlined in the Adoption
Assistance and Child Welfare Act of 1980. This law requires States to
make an effort to prevent out-of-home placements through support and
services to natural families. Plans are developed to return the child
home as soon as possible when out-of-home placement is unavoidable, and
to secure adoption or permanent foster family placement when returning
home is no longer viable. Through family supports and the guarantee of a
free appropriate education in the community where children live, this
country has made great strides in reducing the number of children and
youth with mental retardation living outside natural or adoptive homes
(from about 91,000 in 1977 to 48,500 in 1988). But while permanency
planning is a guarantee for children and youth in child welfare/social
service systems, it is not mandated for children and youth whose
services are funded by Medicaid, education and other programs serving
children and youth with mental retardation. Therefore, significant moral
challenges in guaranteeing equal protections for typical family living
for all children and youth remain.

**Freedom from Discrimination on the Basis of Severity of Disability**

Basic protection should mean freedom from discrimination in opportunity
for community living based on the severity of disability, in standards
for guardianship which frequently deny people control over the most
basic aspects of their lives, and in freedom from repressive and
punitive environments. New promises of programmatic access (not merely
physical access) to activities sponsored by public funds under the
Americans with Disabilities Act offer tremendous opportunities to reduce
discrimination in access to community activities. It also provides
significant challenges in developing the training and technical
assistance co-involvements needed to help community agencies meet their
new responsibilities. Reconsideration and reform of guardianship laws is
another area in which efforts are being made to end discrimination and
to give adults with mental retardation control over their own lives,
which have often been unnecessarily handed to others or to the State.

Progress has been made in recognizing the rights of people with
challenging behavior to enjoy less restricted, less punitively
controlled lives in the community. As services to individuals with
challenging behavior become increasingly dispersed across community
settings, some States (e.g., California, Minnesota, Vermont) are moving
to establish, expand, and integrate ongoing training, behavioral
support, and crisis response services for families and community
agencies to avoid (re)institutionalization.

**Opportunity for Personal Growth and Development**

All people need to learn new skills that add to their competence, and
that fulfill their interests. Research consistently shows that the
functional skills of living in our society are better developed through
community living than in institutions. In fact, 18 studies conducted
between 1976 and functional 1988 comparing the development of functional
skills by people moving from institutional to community living All
develop better through showed positive gains for the people moving to
the community (Larson and Lakin, 1989). The most obvious explanation of
this outcome is that learning is an interactive process involving both
the individual and his/her environment. An individual learns the skills
of the society by participating in it.

Increasingly the focus of personal growth and related supports is
shifting from \"professional\" opinions about what is best for people,
to what people need to know and do to fulfill their personal goals and
desires. Personalized individual planning approaches such as those of
Mount and Zwernik (1989), O\'Brien and Lyle (1988), and Smull and
Harrison (1992), as well as heightened sensitivity to people\'s desires,
are being used to identify and realize personally valued outcomes in
areas like housing, social relationships, recreation/leisure activities,
and other components of daily life. As a result, substantial evidence
has been produced in recent years of people\' with mental retardation
achieving levels of independence, inclusion and self­determination that
were rare 10 to 15 years ago.

**Social Relationships**

Social relationships are a key to personally satisfying lives for all
people, with family relationships often being the most important. For
adults with mental retardation there are especially compelling reasons
to promote sustained family involvement. Frequently family involvement
entails more than the typical support and nurturance of families, by
providing important protections, monitoring and individual advocacy by
family members (Lutfiyya, 1991). And while family involvement in the
lives of persons living in the community is notably higher than for
persons in institutions (Hill et al., 1989), many families express
dissatisfaction with the quality of communication between support
service providers and family and the extent to which the family
involvement is facilitated.

Social relationships with people other than family members are as
important for persons with mental retardation as for others. Like most
people, individuals with mental retardation derive most of their social
relationships from people *who* share their residence, work place, and
day program with them. Despite the improved opportunities for
relationships in the community, most non-family social relationships for
persons with mental retardation are with paid staff (Hayden et al.,
1992). For example, Minnesota\'s HCBS waiver service recipients are
actively engaged in recreation and leisure activities, but only about 5%
of them participated in these activities during a one-month period with
people other than family members, other people in their residential or
day programs, or paid staff members (Lakin et al., 1992). Indeed, many
people in community settings appear as isolated as their counterparts
who live in institutions (Bercovici, 1983).

As described in the previous chapter, people have begun to document
experiences of individuals and agencies demonstrating effective methods
of promoting and sustaining meaningful social relationships (also see
Taylor and Bogdan, 1989). Efforts to establish sustained interactions
over prolonged periods, such as Minnesota\'s \"Friends Project\" (Amado,
1992), appear particularly important, given evidence that programs of
simply pairing people for peer interaction (\"buddy programs\") tend to
have limited lasting effects (Hirsch and DuBois, 1989).

**Valued Participation**

Nothing is more important to people than being valued community members,
as part of normal variety of individuals *who* make up and contribute to
a community. When there have been years of segregation and
discrimination, recognition of people\'s full citizenship often requires
proactive involvements. Actively using the resources and venues of
community life (schools, libraries. parks, restaurants, stores, etc.) is
an important way of communicating membership. Employmer is another
important expression of membership, since in our society work is the
most comm­and probably most consistently valued, way for adults to
contribute to their communities.

Other culturally valued roles are being assumed by people with mental
retardation. For example, the involvement of people in the selection,
purchase/rent arrangement and/or maintenance of their own homes not only
engages them in a valued social role, but increases their skills in
areas that are basic to increase independent living and maximum control
over their own homes. It also makes the person, not an agency, the one
paying for the housing and contributing to the local economy. People
with mental retardation are increasingly visible not only as workers and
householders, but as consumers of goods and services, volunteers,
representatives on boards and committees, spokespersons and political
activists, participants in community organizations and
recreation/leisure activities and so forth. These efforts contribute
substantially to the valuing of people with mental retardation by others
in their communities.

**Personal Autonomy and Self-Determination**

Self-determination and \"empowerment\" are increasingly recognized as
important goals and aspects of daily life for people with mental
retardation. These terms subsume a wide variety of skills and
opportunities in the areas of independence, self-expression,
choice-making, problem solving, self-management, and
self-representation. Supporting and enhancing self-determination is an
essential part of providing the opportunities for people to benefit
fully from community life. Recent efforts to educate parents, policy
makers, professionals, and others about the importance of self-advocacy
to empower people to gain control over their personal lives and to be
the primary agents in insuring quality in their daily lives and services
is a growing force. More and more local, State, and national
self-advocacy organizations are organizing self-advocates to increase
the opportunities for these organizations to develop local, State and
national chapters. Hundreds of State and local \"People First\" or
similar organizations are operating across the United States. Without
question these organizations have created more pervasive general
expectations that people with mental retardation must have a significant
role in making not only the personal decisions in their lives, but also
the policy decisions that affect their lives.

**SUPPORTED COMMUNITY LIVING**

In recent years these various components of a rich and rewarding
community lifestyle have been brought together in a new approach to
services called \"supported community living.\" This new concept of
community living is having major effects on the goals and desired
outcomes of services for people with mental retardation. Many of basic
principles, challenges and experiences of supported living are described
in IMPACT: *Feature Issue on Supported Living* (1995). In the supported
living concept, human services are viewed as means for supporting the
unique desires, abilities, circumstances, and needs of each individual.
Supported community living includes several basic premises, including
the following:

> •All people need and deserve a home of their own where they can be
> themselves, choose to do what they want, be with whom they choose to
> be;
>
> •Funding for housing should be separated from the funding for services
> so that they can change one without changing the other;
>
> •The natural supports and relationships available to people through
> family, community and friends should be sustained and fostered;
>
> •Services should be planned around and support each individual\'s
> personal preferences and desired lifestyle;
>
> •People should have a choice in the services they receive and from
> whom they receive them;
>
> •Services should be deliverable in different ways to different people
> in different places, including recognition of cultural differences;
>
> •Service providers should find less intrusive ways to bring services
> and supports into people\'s homes and be more sensitive and respectful
> of being in another person\'s home; and
>
> •Service providers need to adjust to a \"market\" in which \"clients\"
> become \"customers\" and revenues to an agency are determined by
> demand for specific services by the \"customers\" rather than a total
> number of people who are \"awarded\" to an agency to be provided
> comprehensive care (Adapted from Impact 8(3), Sept. 1995).

Each of these premises implies significant changes from the traditional
facility-based service delivery system. But this new expectation of how
things could be and should be is steadily becoming how things will be in
the future as States like Alaska, California, Michigan and Rhode Island
made significant policy shifts and system reforms to honor the basic
right of people to shape their own lives and destinies.

***Jim\'s Story***

The Alaska Developmental Disabilities Services program works closely
with individuals with mental retardation, families and community members
to help people stay in their communities. These efforts include people
like Jim, who live in remote Alaskan Native villages. Jim was going to
have to leave because his family and the village couldn\'t deal with
him. He was having a hard time getting along with others, and people
were teasing him and he was teasing others. He had some major hygiene
issues and was extremely overweight. He also has a severe seizure
disorder.

State staff worked with Jim, his brother, and the village council to
solve problems and to find him the supports he needed. Service dollars
were used to purchase custom clothes that were tailored to fit him. The
village council helped him to get regular baths at the health clinic.
Someone was hired to spend time with him during the day, to help him
learn how to deal with other people criticizing him, and also how to
have conversations with people that were polite. Someone also is helping
him cook, and he is in the process of learning how to cook for himself.

Jim lives in a cabin next to his brother\'s. He was helped to get a fuel
oil stove that was safe and could heat the cabin, as well as insulated
windows to reduce the fuel bills. His brother got the materials, with
the freight fees donated, and did the installation.

Getting all these supports has taken a lot of heat off the family, and
the community looks at Jim in a much more positive way. He looks very
good and is happy being able to socialize without being teased. All of
these supports were needed to keep him in his home community.

Adapted from Anderson and Gross, undated.

Because supported living is a set of principles more than a type of
program, it is difficult to count how many people may be receiving
services in a manner that equates to supported living. It is probably
the case that thorough analysis of people\'s lifestyles would find that
\"supported living\" in its ideal is enjoyed by a relatively small
fraction of adults with mental retardation. As one indicator, only about
42,600 people were reported to be living in homes that they rent or own
in their own names in June 1994, or only about 12% of all residential
and nursing service recipients with mental retardation. But that was an
increase of 25% over the previous year as supported living more and more
becomes the standard against which the quality of community housing and
supports is evaluated. Indeed, in this role the supported living concept
is continuously contributing to the personalization of community
services, whether in people\'s own homes, in foster homes, in group
homes and even in some institutional settings. The supported living
concept is causing heightened attention to basic aspects of the quality
of life, including:

• Control over one\'s own home or personal space;

• Freedom to shape one\'s daily life;

• Choice in services, service providers and service goals;

• Autonomy from formal service systems through opportunities to exercise
independence and to use informal natural supports and generic community
services as available; and

• Opportunities and support in building and sustaining meaningful,
enjoyable relationships with other community members.

**TRENDS IN FINANCING AND HUMAN RESOURCES**

Systems for people with mental retardation are undergoing a continuing
evolution from residential services primarily in large congregate
settings, to one in which people live in typical community housing with
varying levels of staff support. This transformation often puts
traditional service systems, their funding, their monitoring and other
existing practices in considerable disharmony with what people need for
the lifestyles they want. These conflicts are often evident in the
nature, amounts and conditions of available financing for housing and
services.

**Key Funding Programs and Issues**

Until 1971, there was essentially no Federal participation in the
financing of housing and related services. Most people lived with their
families or in State institutions which were generally underfunded, with
State only revenues. As has been well documented, these institutions
typically housed people in overcrowded settings which generally violated
their most basic civil rights. The Federal government entered the
picture in a significant way in 1971 when it provided States the
opportunity to cost-share certain residential services that meet
specific standards of quality (as quality was then defined).

**Medicaid Long-Term Care Services**

*Intermediate Care Facilities for Persons with Mental Retardation and
Related Conditions(ICF/MR).* The first Federal program targeted to
residential services for people with mental retardation was the Medicaid
ICF/MR program, initially authorized in 1971. Almost half (45%) of all
persons with mental retardation who are receiving services while living
outside their family homes currently reside in this congregate care
setting (four or more residents). Under the current (1995) Medicaid
program, the Federal government pays from 50%-80% (depending on a
State\'s per capita income) of facility costs for ICFs/MR that comply
with highly detailed administrative, environmental, personnel, treatment
and rights requirements.

**Ten Reasons Why People Should Rent or Own Their Own Homes**

All across the United States more and more people with developmental
disabilities rent or purchase their own homes. The common thread in this
\"consumer-controlled housing\" is that the people have the homes they
want with the services and other supports they need brought to them, not
them being forced to live in the \"homes\" of their services. Thus they
are able to live life more on their own terms. They can become the
\"kings and queens of their own castles,\" no longer just guests in
places that are owned by or rented and controlled by the agencies that
provide needed services. There are at least ten very significant
advantages to people who live in consumer-controlled housing:

1\. [Permanency]{.underline}: The risk is reduced that other people will
decide one must move from one\'s own home. People who live in their own
homes are free to choose new service providers or even to reject service
providers without also losing their homes.

2\. [Community Inclusion:]{.underline} People who control their own
housing have greater choice in living near people and places that
support their participation in the community*.*

*3.* [Freedom]{.underline}: People who live in homes they control make
their own rules. The basic right to privacy desired by all human beings
is more easily met in one\'s own home. The place where one can *\"be*
oneself\' is more easily achieved in one\'s own home.

4\. [Respect]{.underline}: A home of one\'s own is a typical and
important achievement of American adults. It gives the owner or
leaseholder a valued social role. Both owners and renters contribute to
the local economy.

5\. [Responsibility]{.underline}: A home of one\'s own makes an
individual responsible for a number of economic and domestic activities.
Responding to these responsibilities helps people to grow in social
competence, both in actual terms, and as they are seen by others in
their community.

6\. [Economic gain]{.underline}: People who buy their own homes have
found that careful purchase and long-term residence can yield an equity
build-up that increases an owner\'s financial resources. Those who rent
often can choose housing and housing arrangements at costs that free
funds for other economic decisions.

7\. [Location]{.underline}: People who choose their own homes can live
where it is most convenient to their jobs, families, friends, stores,
transportation, and so forth. They can live close to places they enjoy
and thus be able to participate more frequently and with less dependence
on others.

8\. [Choice]{.underline}: To most people, the prospect of spending their
whole lives with strangers whom they have had no voice in selecting is
dismal at best. Yet this is the typical experience of persons with
developmental disabilities. Controlling one\'s home includes controlling
not only where one lives but, also, with whom.

9\. [Self-Determination]{.underline}: People should have a right to
control as much of their lives as possible. Few areas are more basic and
unambiguous in self-determination than selecting the housing one wants
within one\'s resource limits.

10\. [Independence]{.underline}: People who live in their own homes can
exercise independence in seeking a new service provider. In contrast,
people who live in buildings owned by a service-provider agency must
weigh the loss of home, neighborhood, and proximity to friends against
seeking services from another individual or agency (Adapted from Fields
and Lakin, 1995).

The total population of ICFs/MR in June 1994 was 142,118, compared with
140,752 in 1982. Although most (88.6%) ICFs/MR are relatively small
(i.e., have 15 or fewer residents), the great majority of ICF/MR
residents still live in large facilities. In 1994, 66.0% of ICF/MR
residents lived in facilities with more than 16 residents. Virtually all
units in State institutions for persons with mental retardation are
certified as ICFs/MR (96% of State institution residents live in ICF/MR
units). Only 23.3% of people living in community settings with 15 or
fewer residents and only 13.4% of people living in settings with 6 or
fewer residents live in ICFs/MR.

ICF/MR care is expensive. In 1994, the average annual cost (Federal and
State combined) to the Medicaid program of an ICF/MR recipient was about
\$65,000, with the average costs of large public ICFs/MR reaching
\$82,300 per year. Total ICF/MR expenditures have grown from \$3.6
billion in FY 1982 to \$5.9 billion in FY 1988, and to \$9.2 billion in
FY 1994. ICF/MR care brings substantial Federal reimbursements back to
the States (\$5.3 billion in Fiscal Year 1994), although the \"return\"
varies remarkably from State to State due to great variation in State
use of the ICF/MR program as well as differences in Federal matching
rates.

As a congregate care program, the ICF/MR program is considerably out of
step with the evolving approaches to community housing and services. Not
only is it an institution dominated program in an era committed to
community services, it is also a program that provides little
flexibility to respond to individual differences and preferences. The
program often is interpreted as requiring people to live in congregate
care homes while receiving an essentially identical set of services,
regardless of personal needs or desires, as well as having incentives
for non-work day activities. The ICF/MR program also has hundreds of
regulatory requirements, almost none of which is related to
understanding and responding to people\'s personal preferences and
goals.

Despite its lack of congruence with the evolving goals of community
services, the number of ICF/MR residents grew slowly (on average of 0.5%
per year) from 1982 to 1993, with total expenditures growing at about
10% per year. In Fiscal Year 1994, ICF/MR enrollments decreased (by
5,800) for the first time in program history, while program expenditures
remained essentially unchanged from Fiscal Year 1993 at \$9.2 billion.
One year does not make a trend, but it seems reasonable to expect that
the program\'s inconsistency with the evolving goals of community
housing and supports will result in continuing decline in utilization.

***Medicaid Home and Community Based Services (HCBS**).* The Medicaid
Home and Community Based Services (HCBS) waiver has been a highly
popular alternative to the institutional orientation of the ICF/MR
program. Section 2176 of the Omnibus Budget Reconciliation Act of 1981
(P.L. 97-35) established the option for States to provide Medicaid HCBS
to people with mental retardation and related conditions. This program
allows \"waiving\" certain Medicaid requirements and allows States to
finance \"non-institutional\" services for Medicaid-eligible individuals
who, in the absence of alternative services, would remain in or might be
placed in a Medicaid institution (i.e., a Nursing Facility or an
ICF/MR). Non-institutional services that can be provided under the HCBS
program include case management, personal care services, adult day
health services, habilitation services, respite care, or any other
service that a State can show will lead to stable or decreased costs for
Medicaid funded long-term care. Although not allowed to use HCBS
reimbursements to pay for room and board, virtually all States offering
HCBS to people with mental retardation do provide services to people in
their homes under the categories of personal care, habilitation, and
homemaker services, while in most instances using cash assistance from
other Social Security Act programs (e.g., SSI) to fund the room and
board portion of the residential program. Given both its flexibility and
its potential for promoting the goal of community based care and
habilitation, the HCBS program has generally *been* of great assistance
to States in providing community services.

In the more than a decade between enactment of the Medicaid HCBS program
in August 1981 and June 1994, 50 States chose to provide Home and
Community Based Services. The number of HCBS program participants grew
from 1,381 on June 30, 1982, to 22,689 on June 30, 1987, to 62,462 on
June 30, 1992, to 122,075 on June 30, 1994. Approximately 3.0 billion
dollars was expended on the HCBS program in Fiscal Year 1994, up from
\$1.6 billion just two years earlier. As noted above, the average
expenditure per recipient of about \$28,500 (with adjustments from
partial year participants) was less than 50% of the average ICF/MR cost.
In June 1994, based on statistics on 61.3% of HCBS recipients, it was
estimated that about 23.8% lived with their natural family, 51.5% lived
in housing owned or rented by the agency providing services to them,
13.6% lived in \"foster\" home arrangements, 23.8% lived in homes that
they themselves owned or rented (8%) and 1 % in other types of
arrangements.

***Medicaid Community Supported Living Arrangements**.* In 1990 Congress
amended the social Security Act to allow up to eight States to provide
Community Supported Living Arrangements (CSLA) to Medicaid-eligible
people with developmental disabilities. Separate from, but in many ways
similar to the Medicaid HCBS program, CSLA provides greater flexibility
in service provision, permits specific targeting of services to eligible
groups and geographic areas within a State, does not require
demonstration of ICF/MR or nursing home level-of-care need for
eligibility and allows each State to develop its own quality assurance
plan within defined Federal standards. Total cost of the CSLA program
was capped on an annual basis in each of the program\'s five years and
at a five year total of 100 million. Proposals from the eight States
selected to provide CSLA (California, Colorado, Florida, Illinois,
Maryland, Michigan, Rhode Island, and Wisconsin) varied in target
populations, projected numbers of recipients, services to be included,
per recipient costs, and in other aspects. The CSLA program offered
participating States the potential to enhance quality of services by
integrating a number of programmatic elements which consumers,
advocates, providers and other professionals have long argued are
necessary to such an effort, including variety and personalization of
services, choice of services and vendors and consumer involvement in
\"quality assurance\". In general, program development as defined by the
number of individuals served was considerably slower than States had
originally projected, reflecting the complex challenges in creating
\"systems\" that can administer the supported living ideal. But at the
end of the 5-year pilot project about 4,000 people were being served.
These pioneers have provided a wealth of learning about how to design
and implement supported living programs, and this learning is now being
transferred to HCBS programs in the eight participating States as well
as with other States sharing their ideals.

***Medicaid Nursing Facilities (NF).*** As of June 30, 1994 an estimated
36,200 persons with mental retardation were living in Medicaid NFs. This
number has been steadily declining in recent years, influenced in part
by the 1987 Omnibus Budget Reconciliation Act which stipulated that
States must screen persons with mental retardation in nursing homes for
the appropriateness of their placement. States were required to submit
\"Alternative Disposition Plans\" regarding the

findings of those reviews. Medicaid HCBS financing is available to the
individuals leaving nursing homes, as well as institutional ICF/MR
placements. Between June 1989 and June 1994, the number of nursing home
residents with a primary diagnosis of mental retardation decreased by
6,500 (or 15.2%).

***Other Medicaid Services.*** In addition to the specific programs for
people with mental retardation described above, Medicaid finances
medical services, personal care services and other \"generic\" services
used by people with mental retardation who live in community settings.
For example, most service recipients with mental retardation have a
designated case manager/service coordinator, which may be a
Medicaid-financed service through a Medicaid targeted case management
program or an HCBS service, or may be a State and local funded service.
Most ICF/MR and HCBS recipients also receive transportation services
(e.g., to and from their day activities), which may be provided by a
residential, day activity, an independent provider, or by using public
transportation. For ICF/MR residents transportation costs are generally
included within the per diem rate for the day or residential program.
For Medicaid HCBS recipients, transportation is sometimes an independent
service in a State\'s HCBS program and paid for as such, or imbedded in
per diem rates for residential or day programs.

***The Rhode Island Story***

In 1994 Rhode Island officials submitted an innovative five-year
research and demonstration proposal to the Federal Health Care Financing
Administration (HCFA) that will test the applicability of a capitated
managed care model for acute and long term care services for people with
developmental disabilities. Entitled CHOICES (Citizenship, Health,
Opportunities, Interdependence, Choices, Environments, Supports), the
waiver will combine current Medicaid and other State funding streams
into a single, coherent system in order to promote more streamlined and
cost-efficient service delivery as well as accelerate the transition of
Rhode Island\'s current delivery system from one which is provider
driven to one that is more consumer driven.

Rhode Island\'s CHOICES initiative lays out a five-year plan to test a
new framework for employing State and Federal dollars in tandem to pay
for consumer-driven community services and supports. CHOICES breaks out
of the mode of \"facility-based\" funding methods by emphasizing
individually-based capitation payment methods, coupled with a high level
of flexibility and consumer empowerment in selecting and obtaining
services and supports.

Over the five-year time frame covered by the waiver, Rhode Island
officials estimate that State­Federal Medicaid outlays for long term
supports and acute care services for adults with developmental
disabilities will be \$97 million lower than would be the case if the
current system were continued. These savings are expected to arise from
the application of managed care principles, improved and streamlined
service delivery, and the exercise of consumer choice.

Source: \"Choices: Rhode Island Proposes to Revamp State and Federal
Funding to Promote Consumer-Driven Services,\" Community *Services
Reporter, April 1994.*

**Other Programs**

There are two primary payment sources of support for non-Medicaid
services for people with mental retardation: (1) individual SSI/SSP
benefits and Medicaid State plan services; and (2) State and local MR/DD
agency funds (including funds originating with the Federal Social
Security Block Grant).

***Social Security/ Medicaid***. The great majority of individuals with
mental retardation living in non-ICF/MR living arrangements are adults
with little or no private income. They are therefore eligible for
Supplemental Security Income (SSI ). The Federal SSI benefit level in
1995 is about \$450 per month. Many states further supplement the
Federal SSI benefit with State supplementation payments (SSP) for people
in various categories, which vary from State to State. As result of
their SSI eligibility they are also eligible for Medicaid and their
State's Medicaid State Plan services. Medicaid services include 12
"mandatory" services, including physician services, inpatient and
outpatient hospital services, laboratory services, home health services,
Nursing Facility services, and others. At the State's option, the vast
majority of States also offer dental services, physical services,
optometrist services, eyeglasses, prescribed drugs and speech and
language services, and other services of substantial benefit.

The room and board of non-ICF/MR housing, including that of HCBS and
CSLA recipients, is usually financed through SSI/SSP income. Adults with
employment income also must contribute part of their earnings in most
programs. Conceptually, payment of SSI/SSP income by residents to
residential providers is generally perceived as a tenant/landlord
relationship, in which the SSI/SSP payment is considered a \"rent
check\" to cover the costs of room and board. In many cases, the
residential provider is the \"representative payee\" for the resident,
so that the SSI/SSP is sent directly to the provider. Concerns have been
raised about this practice in that SSI/SSP is a payment for basic
necessities to an individual with disabilities, not a residential
prepayment program in which people\'s money is controlled by other
people, with individuals unable to influence how their money is spent.
Treatment of SSP also influences access to the 1619 work incentive
program.

***State Financing**.* State mental retardation/develop­mental
disabilities agencies are the primary payment source for non-Medicaid
services. These funds are made available from State revenues and certain
Federal flow through programs, most notably the Social Services Block
Grant (SSBG). Analysts of the potential effects of Medicaid block grants
have examined the history of continual decreases in the amounts and
significance of the SSBG in the lives of people with mental retardation.
Following consolidation of Social Security Title XX into the SSBG,
States experienced decreases in SSBG funding from 8% to 20% over the
next three years, with even greater real dollar decreases. These
coincided with significant growth in the use of the ICF/MR option to
fund community housing and supports. Although the SSBG still provides
about \$600 million for community services in 1995, it represents barely
a tenth of the \$6 billion that States spend for ICF/MR, HCBS, CSLA and
NF Medicaid match in total, and less than a quarter of State match for
ICF/MR and HCBS community services.

Other sources of State funds also contribute to a wide range of housing
and community supports. Among these are many State and local housing
authority administered benefits that may be tapped to assist the
financing of a residence. The most beneficial of these for individuals
with mental retardation has been the HUD Section 9 subsidies and
vouchers. Although a number of other HUD programs have assisted service
providers in financing group homes, such programs are increasingly
viewed as out of step with the goals of people who aspire to have their
own homes, not to live in a home owned by their service provider.

**State Initiatives in Consumer Controlled Housing**

Several States have developed programs to help people with mental
retardation and other developmental disabilities move into
individualized housing under their control, either as home owners or as
tenants. *A Guidebook on Consumer Controlled Housing* (Fields and Lakin,
1995) describes the following State initiatives:

Michigan\'s State Housing Development Authority is currently operating
the MI Home (More Independence through Home) program to assist nonprofit
agencies to acquire one­to four-unit residential properties for rental by
people with disabilities. One goal of the MI Home project is to make
rental housing affordable to people with modest incomes, with rent set
at a maximum of 30% of each individual\'s income. Prospective tenants
are primarily those with a history of residence in an institution or
adult foster home. Funding is through the Federal HOPE Program
administered by the Department of Housing and Urban Development.

The State of Rhode Island has made \$600,000 available for home
ownership by people with development disabilities in a one-year
demonstration project, the Mortgage Program for Persons with
Developmental Disabilities. Staff from the Rhode Island Housing Mortgage
Finance Corporation are available to help consumers in searching for
property. Staffs from the Department of Mental Health, Mental
Retardation and Hospitals evaluate properties relative to needed
community service, structural condition and maintenance needs. There is
also a home buyer counseling component, through the purchase process and
following. New and existing single family homes and condominiums
requiring minimal maintenance are eligible for purchase. Funds for the
demonstration project have been made available through a State bond
issue.

The New Hampshire Home of Your Own demonstration has been implemented
through a collaborative initiative of the State Mental Health and
Developmental Services Department, the New Hampshire Housing Finance
Agency, the University of New Hampshire\'s Institute on Disability/UAP,
the Developmental Disabilities Council and the State\'s Disability
Rights Center. The Housing Finance Administration set aside \$1.5
million of its standard first time buyer program especially for people
with developmental disabilities. The agency also budgeted an additional
\$100,000 for down payments and closing costs, which was matched by the
Mental Health and Developmental Services Department. These funds are
made available to participants as grant-like second mortgages. Federal
funds from the HOPE Program also are being used for down payments,
closing costs, necessary general repairs, and accessibility
modifications.

Financing has been structured through an unconventional use of the
individuals\' HOBS Medicaid waiver dollars. The Housing Finance Agency
originates the mortgages.

Ohio\'s Community Capital Assistance project purchases housing for
people with developmental disabilities *who* require supportive living
services. Individuals take an active role in selecting the type and
location of the housing, *who* their roommates will be, and how the home
is furnished. Existing properties are acquired with the help of local
real estate brokers. The County Board of Mental
Retardation/Developmental Disabilities is responsible to select or set
up the local nonprofit organizations, such as a local Arc chapter, to
assist consumers in their selections. When properties are sold, the
proceeds must be reinvested in other acceptable housing. By 1994, 144
properties had been acquired, providing housing to 370 people. Total
value of these properties was \$9 million, with State participation
valued at \$6.5 million. The program is operated by the Ohio Department
of Mental Retardation/Developmental Disabilities, using funds raised by
the Ohio Public Facilities Commission.

Additional information on strategies to promote consumer-controlled
housing, from the community to the State systems level, is available
from the National Home of Your Own (HOYO) Alliance, a technical
assistance center at the University of New Hampshire Institute on
Disability/UAP. The Alliance works with State coalitions of housing
finance and disability organizations to develop pilot projects of home
ownership and control. A *Guidebook on Consumer Controlled Housing*
(Fields and Lakin, 1995) provides information on additional State and
local strategies, as well as guidance to individuals and family members
on home ownership and control.

**Major Related Challenges Limiting Access to Services**

Large numbers of people with mental retardation are currently being
denied community services. In 1993 reports from 41 States yielded a
national estimate of 56,300 persons with mental retardation currently
waiting for community residential services, in [addition]{.underline} 1Q
people waiting to move from institutions to the community (Prouty and
Lakin, 1995). The most serious problems with respect to access to
services and other programs appear to be for adult children who have
remained at home beyond the age that most family members typically leave
to reside in the community. Two periods are notable: 1) early adulthood
at the time when children typically leave the family home and when
special education entitlements end; and 2) as aged parents are no longer
able to care for a middle-aged child who has spent much of his/her
adulthood living in the family home.

There are a number of resource factors contributing to limited access to
community services. First, as noted earlier, institutional costs have
continued to rise steadily (although recently stabilized) despite
steadily decreasing populations. The inability to reduce institutional
costs significantly, even as populations are decreased is a major factor
in the rapid increase in institution closures noted in Chapter I. In
addition, some States face similar problems as they try to rid
themselves of the group homes and private institutions that were
capitalized as part of the first generation of community services
development. These factors are compounded in many States by general
constraints in State revenues and competing budget priorities.

The quality of community experiences of people with mental retardation
is largely dependent on their receiving personal support and
instruction. Informal support from family, friends and neighbors is
extremely helpful, but some people require substantial support from paid
individuals. Clearly the recruitment, training, and retention of these
community support personnel will be a great challenge in the next
decade. Annual staff turnover among the over 150,000 full-time
equivalent direct care staff in community residential settings averages
55%­75% nationwide. Only a small minority have had any specialized
training prior to employment, and yet work in an increasingly dispersed
social services system with much greater personal responsibility and
less direct supervision than in similar roles in institutions. And still
their wages remain only about 75% of their institution counterparts.
Most of these individuals are young, a demographic segment which will
experience a 20% decrease in size over the next decade. Obviously there
is a substantial need for the development and improvement of systematic
and proactive approaches to personnel recruitment, training and
retention for such roles. These efforts must be system-wide, creating
efforts that increase the potential pools of support providers.

***Redefining/Redesigning Quality Assurance to Reflect New Standards* of
*Excellence****.* Finally, as community service goals and financing are
redefined, an important related policy issue concerns the development of
new definitions of quality and related systems of quality assurance. The
ICF/MR program evolved as a heavily-regulated program to respond to the
abuses found in many large institutions. Although less regulated, the
HCBS programs in some States look more like \"son of ICF/MR\" than a
system to protect people\'s rights and fulfillment of their personal
goals. On the journey to inclusion, however, the pendulum is swinging
back to less-regulated, less controlled systems of care. People with
mental retardation are gaining more control over where and how they
choose to live. States and local governments and provider agencies have
begun to experiment with new approaches to quality, assurance and
enhancement (see, for example, Blake, Prouty, and Lakin, 1993). The
Accreditation Council on Services for People with Disabilities has
totally redesigned its accreditation process around outcome objectives
and indicators based on the value of services to the recipients
(Accreditation Council, 1993). There is strong support for these new
approaches, tempered by recognition that publicly financed programs must
also protect people\'s health and safety. Careful definition, program
development, and evaluation of quality and quality assurance that
balances choice and self-determination with reasonable attention to
health and safety will receive growing focus in the near future.

**SUMMARY**

Major changes have taken place in community housing and related services
for people with mental retardation throughout the last decade. These
changes include:

> • A shift from serving individuals in larger facilities to serving
> individuals in the community
>
> • Increased emphasis on individually tailored services, leading to
> greater diversity in the places where people live and in how they
> spend their time;
>
> • Continuing efforts by States to secure Federal Medicaid cost-sharing
> of community services outside of ICFs/MR, in particular through the
> Medicaid HCBS program;
>
> • More creative financing of community service programs, drawing upon
> multiple funding sources to meet the specific needs of individuals for
> housing, personal assistance, vocational opportunities, medical
> services and specifically designed supports;
>
> • Improving efficiency, including institutional closures to free up
> resources for the tens of thousands of unserved individuals; and
>
> • Reinventing the definitions and measures of quality and the
> procedures of quality assurance to reflect the goals of community
> living.

V.  **SUPPORTS FOR INCLUSION**

•**SUPPORTS TO INDIVIDUALS**

**•SUPPORTS TO FAMILIES**

**•SUPPORTS TO COMMUNITIES AND SYSTEMS\'\'**

***Bev\'s and Art\'s Story***

Bev and Art have been married for four and one-half years. Both work
full time, and in their spare time they enjoy going for walks, visiting
friends, going to the movies, or going out for dinner. Occasionally they
attend city council meetings and offer their opinions on issues.

Bev and Art both have mental retardation. Art also has epilepsy, for
which he takes daily medication. They met and fell in love in a group
home. Now they live in a comfortable, one­bedroom apartment. Art does not
read, so the push-button telephone and his daily epilepsy medication are
color *coded. Initially, the newlyweds* received daily assistance from a
service provider in a semi-independent living program, but now it\'s
only every other day, or about eight hours per week. Art reports that he
likes to wake up to a clock radio instead of a staff person yelling at
him. In a group home, he could not leave unless a staff person
accompanied him; now he goes out whenever he wishes. Both Bev and Art
agree that they prefer living with each other, rather than with 13
strangers (Wright et al., 1991).

Making inclusion a reality for people with mental retardation throughout
their lives requires the availability of supports, on three levels:

> 1\) **Supports to individuals**, to help each person reach his or her
> goals and to be included in desired activities.
>
> 2\) **Supports to families and friends**, to provide them with the
> assistance they need in their love and concern for the individual with
> mental retardation, and in their efforts to support that person.
>
> 3\) **Supports to communities and systems**, to help schools,
> community resources, businesses, and governmental systems in planning
> and implementing strategies for inclusion.

As illustrated in the examples of inclusive early intervention through
aging and retirement, inclusion doesn\'t \"just happen.\" When people
with mental retardation and other developmental disabilities are
meaningfully included, it is the result of plans, policies, and programs
that are designed to support inclusion.

**SUPPORTS TO INDIVIDUALS**

***Flexible and Individualized Supports***

With individualized and flexible supports, all natural environments can
be open to people with disabilities, including persons with severe
disabilities. These supports are critical to facilitating social
integration. Documented best practices in the field have shown that
individuals with developmental disabilities, when provided with
supports, can be fellow classmates, good neighbors, contributing
coworkers, and involved citizens (Bradley, 1994).

Individual supports associated with inclusion include the following:

*• Communication support,* including assistive devices, interpreters for
people with deafness, caring individuals who understand and encourage
people\'s unique forms of communication, and communication therapies.

*• Mobility support,* including individually tailored wheelchairs,
accessible transportation, mobility training, and access to
transportation for recreation and leisure activities as well as for
school or work.

*• Counseling and training support,* based on individual needs for
support in enhancing skills in such areas as community living, personal
care, and interpersonal relations.

*• Educational support,* including educational and related services
provided as part of student\'s Individual Educational Plan (IEP) through
IDEA, such as adaptations of curriculum and assignments, supplementary
learning opportunities, and specialized therapies provided at school so
children can go to the same school as the other children in their
neighborhood.

*• Personal assistance services,* often provided by a personal care
attendant whose help in getting dressed, cleaned up and out of the house
can make the difference between isolation and inclusion.

*• Community connection support,* including supports through circles of
friends, personal friendship ­building strategies, and uniquely designed
supports to community involvement in religious, cultural, recreational
and civic activities.

*• Employment supports,* including job exploration, supported
employment, and opportunities for productive activities.

*• Environmental modifications* at home, school, work, and throughout
the community as needed to eliminate barriers to inclusion.

*• Advocacy support,* including support of self-advocacy efforts as well
as access to personal and legal advocacy.

Cutting across all the possible supports for inclusion is
person-centered planning and coordination support: learning about each
person\'s unique talents, goals, preferences, and idiosyncrasies as well
as his or her disabilities; working with the individual -and involved
family members and friends, as appropriate-to plan ways to reach
personal goals in approaches that make the best possible sense for that
individual; to empower people with disabilities to have real control
over their lives, through listening, providing information and training,
and supporting the achievement of personal goals; and by checking up
periodically to make sure that supports are still working, with the
ability to help arrange for modifications as needs change over time.

Planning and coordination support is the \"glue\" that holds services
and supports together. Planning support that focuses on inclusion is
often associated with *personal futures planning,* or similar planning
models that start with what\'s important to the individual rather than
what a team of professionals think is important. Personal futures
planning:

> •Is based on a positive view of people with disabilities, rather than
> seeing them as having \"defects\" and impairments to be \"fixed;\"
>
> •Is comprised of goals that anticipate that positive changes,
> activities, and experiences will increase, rather than focusing on
> decreasing specific negative behaviors;
>
> •Uses ideas and possibilities for community sites and settings, and
> for valued roles in those settings; and
>
> •Includes goals that are important to the individual even if some of
> them seem outlandish, unrealistic, and impractical or require major
> changes in existing patterns (adapted from Mount, 1994).

An individualized support plan lays out the specific supports,
strategies, and milestones for reaching the goals in the personal
futures plan or equivalent.

**Trends and Resources for Individual Supports**

There is growing emphasis on supports to individuals throughout the
field of mental retardation and of disabilities in general. The new
definition of mental retardation adopted by the AAMR (1992) incorporates
the concept of supports as an integral component of the assessment
process, along with the concept of five valued accomplishments: 1)
community presence; 2) choice, autonomy, and control; 3) competence,
including the opportunity to express one\'s gifts and capacities; 4)
respect and having a valued place in one\'s community; and 5) community
participation/network of personal relationships (Luckasson and
Spitalnick, 1994). As developed by the AAMR, supports relate to these
desired accomplishments as follows:

Supports refer to an array, not a continuum, of services, individuals,
and settings that match the person\'s needs\... \[and\] should be
matched in the context of the person\'s desires. Supports are resources
and strategies that promote the interests and causes of individuals \...
that enable them to secure access to resources, information and
relationships as part of inclusive work and living environments and that
result in enhanced interdependence, productivity, community inclusion,
and satisfaction. Support resources are individual resources, skills,
and competencies and the ability and opportunity to make choices, manage
money, manage information, and the like. These resources are also other
people, whether family, friends, coworkers, people one lives with,
mentors, or neighbors. Technology might also be a form of support
resource and includes assistive devices, job or living accommodations,
or even behavioral technology. Another support resource encompasses
habilitation services that may be needed if the other naturally
occurring resources are either not available or not sufficient to assist
the person in a desired living, working or school environment. Clearly,
these services, whether provided by a specialized disability agency or a
generic service agency, are a subset of supports (Luckasson and
Spitalnick, 1994).

Although rhetoric about moving to a supports focus is not always
accompanied by real changes in the service system, there are growing
signs that supports are becoming central to designing new approaches and
revamping existing programs:

> • Early intervention services through IDEA Part H require Individual
> Family Support Plans.
>
> •States have expanded the use of Medicaid optional services to finance
> supports to individuals, including personal care/personal assistance
> services, rehabilitative services, coordination and related support
> through the targeted case management option, and prosthetic devices.
>
> •Trends in the Medicaid HCBS waiver reflect the expanded availability
> of supports such as case management, personal assistance,
> environmental modifications and adaptive devices when States renew
> their waivers, as well as significant growth in the number of
> individuals covered.
>
> • Supported living and supported employment continue to grow, as
> described in the previous chapters.
>
> •The Technology-Related Assistance for Individuals with Disabilities
> was reauthorized in 1994, continuing a program of grants to States to
> increase coordinated access to assistive technology, as well as
> information and assistance to individuals provided by the National
> Institute on Disability and Rehabilitation Research (NIDRR).

Assistive technology has special importance for inclusion, as it removes
communication and accessibility barriers that keep people isolated. Bob
Williams, the current Commissioner of the Administration on
Developmental Disabilities (ADD), uses a \"Liberator,\" a communication
device that allows him to speak through his computer. He relies on the
Liberator in managing a more than \$122 million Federal agency, as well
as to organize and communicate information in other activities. He is
helping ADD to collaborate with NIDRR and other Federal agencies to
promote access to assistive technology, including training, ongoing
support, and opportunities for self-instruction, as well as hardware and
software (Williams, 1995).

In Ohio, the Developmental Disabilities Council brought together a
coalition to improve and expand personal assistance services. The
Coordinating and Expanding Personal Assistance Services project supports
consensus building on an advocacy action plan that is supported by
funding agencies as well as consumers and advocates. The project works
closely with a program funded by ADD, administered by United Cerebral
Palsy Associations, Inc., to train 30 people with disabilities to
advocate for personal assistance services (Zierman, 1995).

The Maine Developmental Disabilities Council supported the Maine Meeting
Place, an on-line service to link people with developmental disabilities
and family members with each other and with the service system. A
keyboard and a small box linking the keyboard with the phone line and
the television is all that is needed; a computer is not required. During
the first year the network expanded to 1,500, including many people in
rural areas, and tens of thousands of messages have been placed on the
board. The project has demonstrated that people can communicate using
low-cost (\$25-\$75) low-tech equipment obtainable on the surplus
electronic market, and that desire for information and assistance
overcomes people\'s fears of technology (Zierman, 1995).

***Melvin\'s Story***

Melvin is a 52 year old man with cerebral palsy and mild mental
retardation. He is unable to walk and has only limited use of his upper
extremities, making him dependent on others for most of his daily care.
Melvin has difficulty articulating words clearly, but he cheerfully
manages to make himself understood.

Melvin grew up in a close family, with seven brothers and sisters. All
of his family took part in his care, but his mother was the primary
caregiver who pushed his wheelchair, bathed and toileted him, and put
him to bed. Melvin lived with his mother until she died from a heart
attack in 1985. After her death, he lived for a short time with one of
his brothers, but after less than a year the brother became ill and
Melvin had no choice but to move into a nursing home.

In the nursing home, Melvin\'s independence was severely curtailed. He
couldn\'t shower or use the toilet when he chose. There was no one to
push his wheelchair, so Melvin spent a lot of time sitting in the day
room or the hallway. After a few years his wheelchair broke, and rather
than pursue proper replacement, the nursing home loaned him one that
didn\'t fit him well. The nursing home did not encourage independent
mobility, and after a while Melvin\'s upper extremity function decreased
to the point that he could no longer feed himself or turn on his radio.
He had a few friends in the nursing home, but there was not much for
them to do.

In 1991, Melvin was selected for Illinois\' CILA (Community Integrated
Living Arrangements) program. In preparation for community placement, he
was referred to the Assistive Technology Unit at the University of
Illinois at Chicago for seating and wheeled mobility, augmentative
communication, environmental controls, and any other equipment that
might increase his independence. Through the assistive technology
support, Melvin was fitted with a head-controlled power wheelchair while
he was still in the nursing home. His new mobility immediately made him
more optimistic. He was no longer dependent on others to move him
around, and he didn\'t have to sit in one place all day long. He gained
additional independence through assistive devices that enabled him to
feed himself again, to use the toilet without assistance, and to control
lights, his radio, television and a fan.

In October 1994, Melvin finally moved into his community residence. He
lives with two other men and an aide who helps them with activities of
daily living, shops and cooks, and provides transportation. Melvin loves
his new home. He is beginning to feel like a home owner and takes pride
in paying his bills and share of the rent. The best part of the new
residence is the opportunity it offers for self-determination. Now
Melvin can visit his family whenever he wants. He can decide for himself
whether to go to work or take off a day. If he wants to go the park,
baseball game, or a show, he goes by himself using his new wheelchair.
As Melvin sums up his new situation, \"I can go anywhere and I can do
anything.\"

Adapted from Mendelson, 1995.

United Cerebral Palsy Associations, Inc. has worked with its local
affiliates and private foundations to create TECH TOTS Libraries across
the country. TECH TOTS Libraries are parent-run centers with toys and
equipment that can be borrowed by families with infants and young
children with disabilities, to use at home. Trained Parent Coordinators
are available to help other parents and their children choose toys and
equipment, learn how to get the most out of using the items, and compare
notes with other families (Gradel and McMeekin, 1995).

**SUPPORTS TO FAMILIES**

The term \[family support\] is best defined as an array of practical
supports that are determined by individual family needs. Ideally, family
support is flexible, focuses on the entire family, changes as family
needs change, encourages families to use natural community supports, and
provides a convenient and central access to services and resources.

Source: Family Support *Services in the United States. An End of Decade
Status Report* (Knoll et al., 1990)

Families want to keep their children with developmental disabilities at
home. Home families need various supports and services to strengthen
them as primary caregivers; to prevent inappropriate out-of-home
placements and maintain family unity; and to reunite families with
members who have been placed out of the home, whenever possible.
Families and their family members with disabilities benefit most from
access to a flexible array of supports that can be used on an as-needed
basis, including:

• Respite care

• Help with special disability-related expenses

• Training and counseling

• Home and vehicle modifications

• Peer support

• Information and coordination support

• Advocacy

Although most family support programs focus on families with children
with disabilities, many adults with mental retardation still have
parents as their primary caregivers. The National Consumer Survey found,
for example, that this was the case for 71% of adults with mental
retardation aged 18-21 years, 41% of those 22-34 years, 28% of
individuals 35-49 years of age, and 13% of those aged 50-64 years. The
portion of adults with cerebral palsy still cared for by their parents
in these age groups was even higher (Knapp, 1994).

The Human Services Research Institute (HSRI), a leader in research and
technical assistance on family support, summarizes information on
families and their need for support as follows:

> No two children or families are exactly alike. Each has unique needs,
> strengths, capabilities, and preferences. Many families, however, find
> that the \"ordinary\" challenges faced by others can become
> \"extraordinary\" when providing care to a child at home with
> disabilities. Families who provide care at home must learn how to
> implement specialized care routines while attending to normal family
> functions. Because of the added pressure, these families can face a
> variety of challenges over and above the normal responsibilities
> associated with raising a child.

Available research suggests that the difficulties actually experienced
by individual families are related to multiple factors including the
seriousness of the family member\'s disability, the presence of
challenging behavior, family characteristics, specific parenting
patterns, the family\'s capacity for coping with adversity, and the
availability of community support services. As a result, though not all
families who provide care at home have extraordinary problems, all are
more \"at risk\" for having difficulties than families without members
with disabilities (Agosta and Melda, 1995).

Most family supports are financed with State funds. A national survey in
1992 (Melda and Agosta, 1992) identified a total of 69 programs in 46
States, with 27 States expending \$1 million or more on family supports.
States reported that a total of nearly 199,000 families received family
support services, based on the last year for which data were available.
Based on data for 66 programs in 43 States:

> • 38 programs were funded with 100% State dollars
>
> • 11 programs were funded with 75-99% State dollars
>
> • 17 programs were funded with less than 75% State dollars

The 38 programs funded with 100% State funds alone represented more than
\$79 million in State funds (Melda and Agosta, 1992).

Family supports promote inclusion in particular by helping families
avoid out-of-home placements, and by supporting community connections.
Although providing care at home to a child with disabilities brings many
challenges, most families reject out-of-home placements (Agosta and
Melda, 1995).

Family supports make sense from a broader public policy perspective as
well as for the families involved. A recent analysis of family costs in
caring for their adult son or daughter with mental retardation or
related disabilities noted that \"Out-of-pocket expenditures devoted to
home-based care represent demands not placed upon public resources \...
The marginal costs of supplementing and encouraging family-based care
may represent a far more efficient use of limited service resources than
the outright purchase of additional out-of-home capacity \...
Family-based care of adults with \[mental retardation/developmental
disabilities\] may be central to the national portrait of services for
both demographic and economic reasons\" (Fujiura, Roccoforte and
Braddock, 1994).

***Aaron's Story***

Aaron was born prematurely with cerebral palsy and sensory impairments.
He needs a tracheotomy tube to help him breathe; a gastrointestinal tube
to help him eat; and other extensive medical, health, and social
supports. Aaron\'s mother, father and brother want him to live with them
at home. Because no single funding source is flexible enough to meet all
of Aaron\'s and his family\'s unique needs, the family uses a
combination of private, local, State and Federal resources.

Private health insurance covers medical and dental care,
hospitalization, some medicines, Aaron\'s special food formula, his
wheelchair, and some other equipment. Aaron is eligible for some
Medicaid waiver program home-based services and equipment that the
family\'s private insurance does not cover, such as a home health aide
to be with him after school. The State\'s Family Support Program
allowance of \$250 per month covers physical therapy at home, with his
parents assisting, and other special needs, such as the wheelchair lift
on the family van. Aaron and his family also receive supportive home
care under their State\'s Community Options Program and respite care
through the county developmental disabilities agency. Aaron now attends
a typical class in a regular neighborhood school, with supports for both
himself and his teacher. Even though it\'s complicated, the funding
puzzle helps ensure that Aaron lives at home and not in an institution,
which could cost more than \$50,000 annually, and that he and his family
get the quality services they need.

Adapted from Wright et al., 1991.

The National Conference of State Legislatures suggests the following
points to consider in developing policy for family support programs:

> • Assistance with at-home care enhances a family\'s capacity to
> provide care and improves the quality of life for the entire family,
> including the member with a disability.
>
> • Responsive family support programs provide a wide array of support
> services for families, whether they are biological, foster, or
> adoptive families. Families\' needs vary, and each family should be
> encouraged to select those services that are most appropriate to build
> upon its strengths and to meet its needs.
>
> • Support services should be available to families from the onset of
> the disability and should be designed to reach out to families.
>
> • Access to family support services should be timely and convenient
> for families.
>
> • As the person with a disability reaches adulthood, the focus of
> support programs should shift to choices for the individual, whether
> he or she lives with the family or is in another community setting.
>
> • The public sector cannot be counted on to meet all family needs.
> Support services should build on the framework found in the family,
> the neighborhood, and the community. Employers and private health
> insurance carriers also should be called on to provide support.
>
> • Families should be allowed to control resources, making the system
> less \"provider ­driven\" and more \"consumer-driven.\"
>
> • Children with disabilities benefit most from training in natural
> settings where they can learn independent living and work skills that
> will enable them to live in the community once they become adults or
> choose to live away from the family home.
>
> • Strengthening the family structure may be less costly to the State
> than funding expensive alternative residential options (Wright et al.,
> 1991).

**Trends and Resources for Family Supports**

> *\"You have no idea what it takes to raise an autistic child with
> mental retardation. It is not easy. We do it because we love our
> child, not for the SSI check.\"*

Parent, quoted in The Arc (1995).

Family support resources and numbers of families receiving supports
continue to increase as more and more States make a commitment to
helping families that include children with disabilities. Between 1988
and 1992, for example, family support expenditures increased from
\$157.9 million to \$279.4 million, and the number of families increased
from 168,300 to 193,800, as illustrated in Figure 8.

Figure 8 Trends in Family Support

**0 277.3**

![](media/image12.png){width="4.410416666666666in"
height="2.933333333333333in"}

**0\~**

**1988 1990 1992**

Source: Supporting Families (Bauer, 1994).

• Spending (in \$millions)

• Families Served (in thousands)

A recent (1995) national survey suggests that all States provide at
least some supports to families with a child with disabilities, although
many reach only a small number of families (Agosta and Melda, in
preparation).

The ultimate flexibility in supporting families is being achieved
through subsidy and voucher programs. These approaches are often favored
because of the diversity in family needs, the opportunity for families
to purchase less expensive informal supports, and the simplicity in
administration. As of 1995, over 25 States have implemented some type of
cash assistance program to help meet family needs (Agosta and Melda,
1995). HSRI has conducted extensive reviews of these programs and their
effects on families. Comments from parents receiving cash subsidies in
three such programs include the following:

• Illinois:

\- The program helped us to buy the equipment we needed to help our
child develop.

\- Our family member was able to get high quality hearing aids that we
would not have been able to afford.

•Iowa:

\- It is the only program that has been willing to help us financially
and recognize our needs.

\- The extra money helps us to keep our child at home.

•Louisiana:

\- Having a child who is quadriplegic is very expensive. money helps us
get through everyday living.

\- It enables me to afford to keep my daughter at home.

Although most family support programs are funded primarily with State
dollars, resources also are available through the Medicaid program, in
particular the HCBS waiver program. States are offering respite care,
case management/coordination support and home- and community-based
services through their HCBS waiver programs:

> •The New Mexico HCBS waiver covers respite, homemaker, personal care,
> psychosocial services, private duty nursing, physical therapy and case
> management for children with disabilities.
>
> •The Maryland HCBS waiver covers case management, private duty
> nursing, and durable medial equipment and supplies.

•The Texas HCBS waiver funds respite care.

The waiver also can be used to expand Medicaid eligibility to children
with disabilities and their families. In addition, Medicaid Model 50/200
waivers are being used to cover family supports and specialized services
to individuals who would otherwise be in a hospital or institution.
States with the TEFRA Medicaid eligibility option can finance family
supports and services with combined Federal/State Medicaid dollars by
ignoring parental income when determining a child\'s eligibility for
Medicaid services, if the child would otherwise be institutionalized
(Bauer, 1994).

Families also receive flexible support through the Federal Supplemental
Security Income (SSI) program. Low income children with disabilities are
eligible to receive cash payments adjusted to family income level, as
well as possible State supplementation in 27 States (Agosta and Melda,
1995). As the Social Security Administration has revised childhood
disability determination to respond to a Supreme Court ruling on
procedures used in the past, the number of children with disabilities
receiving SSI benefits has risen from 296,000 in 1989 to 847,000 as of
June 1994. A significant portion of new awards have gone to low income
children with mental retardation. SSI also makes the child eligible for
Medicaid, a major benefit in making services affordable. As summarized
by the parent of a child receiving SSI in a recent survey:

If *my son loses any-services, I* will not be able to care for him and
then he may be institutionalized. I have no future right now. I pray
that I may someday soon be able to work and get insurance and that I
will be able to take care of my son. But he needs SSI now (The Are,
1995).

Virtually every State has success stories to share in family support
strategies, while acknowledging that more needs to be done. State
Developmental Disabilities Planning Councils have been active in several
States to demonstrate the benefits of family support programs and to
support family­ focused policies:

> The Idaho Developmental Disabilities Council sponsored a successful
> demonstration of family support services. The Family Support
> Initiative provided a forum for families and professionals to define a
> comprehensive, family-directed and community-centered system of
> support services to meet the unique needs of families all over the
> State. Public awareness activities and the Family Support Network have
> heightened understanding among policy makers and the general public of
> the need for family support, and legislation has been readied for
> introduction with endorsements from key organizations. Idaho\'s system
> is expanding to strengthen the role of the family and reunite and/or
> retain the family unit through flexible policies, information, and
> financial and personal support (Zierman, 1995).

***The Minnesota Story***

When a class action lawsuit forced Minnesota to deinstitutionalize
services for children with developmental disabilities, the State
redefined its public policy to conform with the philosophy that all
children, regardless of disability, have a right to grow up in a family
home and that families need support in their efforts to care for their
children with disabilities.

In the ten years (1980-1990) that the Disability Law Center collected
data on the effects of deinstitutionalization, the number of children
residing in Minnesota regional treatment centers (State institutions)
dropped from 245 children to only three. The number of children living
in private ICFs/MR dropped from 585 to 161; 127 children were placed in
an alternative living arrangement through some type of Medicaid HCBS
waiver. The total number of children living in alternative out-of-home
arrangements decreased from 830 in 1980 to 291 in 1990. In addition,
more than 1,800 Minnesota children and their families were receiving
necessary supports in the community through the State\'s Family Subsidy
program, Medicaid HCBS waiver services for in­home supports, and
aggressive use of the TEFRA option.

The State also realized significant cost savings through the
deinstitutionalization and family support initiative. Although overall
expenditures increased 20 percent, the number of children with
developmental disabilities and families being supported increased by 240
percent.

(Adapted from Bauer, 1994).

Family support legislation was enacted in Louisiana following
broad-based advocacy and consensus building, actively supported by the
Louisiana Developmental Disabilities Council. In 1994 the Legislature
appropriated \$1.4 million for family support subsidies, reaching 500
additional families of children with severe disabilities. Families
receive a cash subsidy of \$258 per month to help offset the
extraordinary costs of carrying for some children at home and to reduce
the need for institutionalization. Louisiana also adopted the Medicaid
TEFRA option, bridging the service needs for many children who would
otherwise not be eligible for Medicaid while living at home (Zierman,
1995).

The Michigan Developmental Disabilities Council joined with the
Association for Retarded Citizens (now The Arc) and other advocacy
groups to support passage of the Family Support Subsidy Act in 1983. A
primary rationale for the legislation was the need for children with
disabilities to remain with their families, coupled with the hope that
the State would realize cost savings by preventing out-of-home
placements. Michigan has been successful in reducing institutional
populations, and has virtually no children in its remaining State
institutions. The Michigan program provides direct cash subsidies of
approximately \$225 per month to families of children with severe
disabilities who would otherwise require expensive institutional care.
Families with taxable incomes above \$60,000 are not eligible. Officials
believe the program is cost-effective. The average cost of the subsidy
per child per day is \$7.50, compared to \$200 or more per day for
institutional care (Wright, 1990).

Wisconsin\'s family support program began in 1984 as a demonstration
project funded by the Developmental Disabilities Council, followed by
legislation to make it a statewide program in 1985. The program is noted
for its flexibility and family/consumer orientation. Families of
children with severe disabilities are eligible for up to \$3,000 worth
of services annually, regardless of their income. The program pays for
services and supports tailored to the unique needs of each child and
family. Families can choose services such as child care, counseling,
architectural modifications, unreimbursed medical and dental expenses,
nutritional supplements, clothing, special equipment and supplies,
homemaker services, in-home nursing, in-home training, respite care, and
vehicle modifications. The program is administered at the county level,
where staff work with families to encourage creative use of community
resources. The program requires that 90 percent of the family support
funds allocated to the counties be spent for services (Wright, 1990).

The NCSL Task Force on Developmental Disabilities has developed the
following recommendations to State Legislatures on family support:

1\. Create and fund family support programs for those families who
provide care at home for their children with developmental disabilities,
adhering to the following guiding principles:

• The program should support the family rather than the service
provider;

• All children, regardless of disability, have the right to grow up with
a family, biological or otherwise, and need enduring relationships with
adults;

• The role families pay in providing care at home must be recognized and
supported so that family members are enabled and empowered to make
informed decisions; and

• The means for supporting family efforts should build on existing
support networks and natural sources of support within the community and
should be culturally sensitive.

2\. Provide flexible programs to meet the needs of individual families,
recognizing that their needs change over time.

3\. Require coordination of all family support-related activities
undertaken by State agencies, such as departments of developmental
disabilities, education, human resources, public welfare, and mental
health.

4\. Use all public and private sector resources available to families,
including government agencies, private employers and private health
insurers.

5\. Ensure adequate training for persons who provide family support.

6\. Design all family support initiatives to promote the integration of
persons with disabilities into the community.

7\. Monitor the quality and effectiveness of all service programs
through systematic reviews, which should include input from consumer
families.

8\. Define family support as a benefit program that is not included as
income for purposes of State taxation.

9\. Provide independent living and work training to youth with
disabilities to facilitate transition into adulthood and to promote
independence (Wright et al., 1991).

**SUPPORTS TO COMMUNITIES AND SYSTEMS**

As defined in the Developmental Disabilities Assistance and Bill of
Rights Act, community supports are activities, services, supports, and
other assistance which help communities respond to the needs of
individuals with developmental disabilities and their families, develop
local networks of informal supports and make communities accessible and
better able to offer their resources and opportunities to people with
developmental disabilities (Zierman, 1995). Communities and systems need
to be supported in making inclusion a reality for people with mental
retardation and other developmental disabilities, just as individuals
and families need supports. Supporting inclusion means providing
supports to:

• Day care centers and schools,

• Employers and co-workers,

• Businesses and services,

• Governmental agencies,

• Religious and civic organizations, and

• Media.

People who are familiar with the benefits of inclusion and who are used
to participating in activities that include people with mental
retardation/developmental disabilities may not yet be in the majority in
all communities and settings. Those concerned about inclusion need to
acknowledge that some community members, especially adults, may not feel
comfortable in interactions with people with disabilities. They may be
unsure how to relate to someone with mental retardation through lack of
experience, and may be afraid of doing something wrong or inappropriate.
Without losing sight of the expectation of inclusion and the commitment
to reject discrimination, support and encouragement can be offered, with
confrontation as the last resort.

People with developmental disabilities have long been the object of
negative attitudes and stereotypes. They have been pitied, shunned, and
seen as having little to contribute to their communities. These beliefs
have been perpetuated by the segregation and isolation of people with
developmental disabilities. Fortunately, there are indications that
attitudes may be changing, at least regarding disability in general. As
people with disabilities, their families and friends have demanded to be
included in the mainstream, the public has seen that people with
disabilities are valuable friends, neighbors, classmates and co-workers.
A 1991 Harris poll of the general public found that half of those
surveyed knew someone with a disability. Of those individuals, more than
half had a friend with a disability, one-fourth had a family member with
a disability, and one-fifth a co-worker with a disability. In addition:

• 92% of those surveyed believe that society will benefit economically
if people with disabilities are assimilated into the workforce, and

• 82% see the employment of people with disabilities as a \"boost\" to
the nation, not a \"threat\" to others\' jobs (Zierman, 1995).

Public awareness and education activities are a mayor support to
communities -in promoting inclusion and in combating the negative
attitudes of the past.

Supporting communities and systems also encompasses infrastructure
development, including funding initiatives, curriculum development,
training programs, and ongoing quality enhancement activities. In
Nebraska, the Legislature and Governor agreed in 1995 on a Blue Print
for Action, calling for \$27 million in new funding for community
services and supports to people with mental retardation and other
developmental disabilities over the next biennium. The plan will be used
to implement the State\'s Developmental Disabilities Services Act of
1991 (LB 830). The act broadened eligibility to include individuals with
developmental disabilities other than mental retardation, established an
entitlement to developmental disability services following graduation
from special education, reformed systems for coordination support (case
management) and quality assurance, and provided for overall enhancement
of the community service system. Implementation was deferred from July
1993 to July 1995 due to State budget constraints.

Nebraska\'s *Blue Print for Action* was enacted to reduce waiting lists
for community-based services and to fund services under the entitlements
in the Developmental Disabilities Services Act. New funds of \$27
million earmarked for service expansion, funded through a combination of
increased Federal funds in an expanded Medicaid HOBS waiver program,
fees paid by service recipients, and other sources. State general
revenue sources reflect only about 10 percent of the new money. The
additional resources will be used to:

• Meet the needs of an expected 370 youth who will be transitioning out
of special education programs over the next two years;

• Extend service coordination to an additional 1,255 individuals;

• Purchase services and supports for over 1,000 people with
developmental disabilities currently on waiting lists; and

• Establish outreach and intensive training services to meet the needs
of people going through behaviorally-related crises.

The plan also calls for cost-sharing on a sliding scale, with fees being
paid by individuals and families of those receiving services (NCSL,
1995).

**Trends and Resources in Supports to Communities and Systems**

The Americans with Disabilities Act (ADA) challenges businesses,
employers, communities, and public agencies to break down barriers to
inclusion. Since July 26, 1994, all provisions of the ADA have been in
effect. Title I of the ADA prohibits discrimination in employment in all
businesses and programs with 15 or more employees, and requires
reasonable accommodations in hiring, training and promoting people with
disabilities. Other sections of the ADA address access to services and
employment in State and local government; require accessible public
accommodation in, stores, hotels, commercial operations and recreation
and cultural activities; and mandate equal access in telecommunications
for individuals with hearing and/or speech impairments. Accessibility
and non-discrimination under the ADA includes people with mental
retardation.

Many State Developmental Disabilities Councils and other advocacy
organizations have worked with Federally funded resources to promote
compliance with ADA, to inform people with disabilities about their
rights under ADA, and to provide consultation on cost-effective
compliance. ADA compliance also is supported in each Federal region by a
Disability and Business Technical Assistance Center (DBTAC).

> ***The Indiana Story***
>
> The Indiana Developmental Disabilities Council actively promotes the
> month of March as Disabilities Awareness Month, focusing on grass
> roots participation in consciousness-raising activities through
> statewide media coverage. Seventeen different information packets were
> offered in the 1994 campaign, including: Editorials, Art Contest,
> Awareness in the Classroom, IndiciaBank Receipts Campaign, Library
> Display and Story Hour, Mayoral Proclamation, Print Media Public
> Service Announcement (PSA), Radio Breakfasts, Radio PSA, Recognition
> Awards, and Special Events-Working with Local Clergy. Orders for
> nearly 3,900 packets were filled. The Council also widely distributed
> its *Awareness Activities* booklet and Interacting with People *with
> Disabilities* brochure.
>
> The private sector joined the Council in these efforts. The cost of
> printing the posters and bookmarks on disability was covered by
> Ameritech. Eight Indianapolis-area grocery stores, banks and utility
> companies agreed to participate in the campaign and use the
> Disabilities Awareness Month logo. A news release announcing
> Disabilities Awareness Month was sent to every daily and weekly
> newspaper in the State. Three million logo impressions were created.
>
> The annual campaign has grown from year to year. In 1994, 33
> newspapers participated, up from 20 in 1993, and orders for materials
> also increased. The total number of impressions measured for 1994 was
> over 3 million, compared to 2.5 million the previous year. An
> estimated two million more people were reached through television and
> radio PSAs, newsletters, mail stuffers, grocery bags, posters, and
> brochures.
>
> The Indiana Developmental Disabilities Council also collaborated with
> the Calumet County Boy Scouts of America to develop and distribute
> Scoutvideo93. The video is a training resource for adult and youth
> Scout leaders on disabilities awareness and effective techniques for
> including youth with disabilities in Scouting. It has been distributed
> to Scout leaders throughout Indiana, and is available to Scouting
> leadership nationwide (Zierman, 1995).

The Pacific Disability Business Technical Assistance Center (Pacific
DBTAC) is one of ten centers set up around the nation through the
funding of a five year grant from the National Institute on Disability
and Rehabilitation Research. The Pacific DBTAC serves Federal Region IX,
which includes Arizona, California, Hawaii, Nevada and the Pacific
Basin. Its purpose is to promote compliance with the ADA by building a
partnership between the disability and business communities in order to
promote full and unrestricted participation in society for persons with
disabilities through education and technical assistance.

The Center operates a toll-free 800 technical assistance hotline,
conducts region-wide dissemination of ADA-related materials, coordinates
and conducts regional conferences, individual state training workshops,
and local trainings and presentations. Pacific, DBTAC also maintains a
technical assistance library, publishes a newsletter and coordinates the
provision of on-site technical assistance (Jones, 1995).

***Supporting Rural Communities in Alaska***

HOPE Cottages, one of Alaska\'s mental retardation service provider
agencies, developed Community Resource Teams to help people remain in
their home communities. The purpose of the Community Resource Teams is
to allow local communities to develop and control developmental
disability services that are desired by the community. HOPE started this
concept about seven years ago, as a result of requests for services by
rural communities where there were generally no or only a few services.
These teams were started so that local communities could make decisions
about what services were needed, and to be involved in planning and
managing those services. There are three Community Resource Teams:
Dillingham, Unalaska, and Kodiak.

In Dillingham, the CRT is made up of parents, family members and
individuals with disabilities. This group, in cooperation with HOPE,
responded to a Request for Proposal from the State, and received funding
for several services, including natural home supports, foster
care/shared care, employment and residential supports. They were able to
help one man return home to his family after living many years in an
institution and a temporary placement in Fairbanks. He is now living in
his own apartment in his home community and sees his family often. In
Unalaska, respite and home care services have been established through a
CRT. In Kodiak, public meetings were being held to determine what
services the community wants and to establish a CRT.

The agency\'s preference is that each of these CRTs will become part of
a local organization and that HOPE\'s involvement will only be in
assistance in getting started, or to provide technical assistance later
on an as needed basis.

Adapted from Anderson and Gross, undated.

Compliance resource information for States, communities, employers, and
individuals with disabilities is available through several Federal
agencies and programs, including the Civil Rights Division of the
Department of Justice, the Department of Transportation, the
President\'s Committee on Employment of People with Disabilities, the
Equal Employment Opportunities Commission, the Architectural and
Transportation Barriers Compliance Board, and the National Institute on
Disability and Rehabilitation Research (NIDRR). Technical assistance on
ADA compliance is available through NIDRR on (800) 949-4232. The Arc\'s
Access ADA Initiative, funded by the Department of Justice, focuses
specifically on the application of the ADA to people with mental
retardation and other cognitive disabilities. The Americans with
Disabilities Act. Developmental Disabilities Councils Implementation
Activities (Musheno, 1994), available through the National Association
of Developmental Disabilities Councils, provides additional information
on resources and strategies to promote inclusion through ADA compliance.

Legislative committees and task forces have played a major role in
developing supports to systems and communities. In Utah, for example, a
Legislative Task Force for Persons with Handicaps challenged the State
agency, the Utah Division of Services for People with Disabilities
(DSPD), to focus more clearly on people\'s quality of life. The DSPD
worked with the HSRI to develop a new quality assurance system. They
formed the Quality Assurance Academy of developmental disability
stakeholders, including two members of the Utah Legislature, to design
their approach. The Academy began by defining choice, community
membership, individualization, and opportunities for full participation
in Utah life as the value base. The State developed standards that
emphasize internal provider quality assurance systems. This is coupled
with external assessments of developmental disability services based on
four standards:

1\) Personal growth and development of individuals served;

2\) Consumer participation in his/her own individual program plan;

3\) Consumer participation in Utah life; and 4) The provider\'s own
quality assurance plan.

At the same time, Utah has shifted the focus of its program survey
process from paper^,^ and process compliance to observing the quality of
real world outcomes for the individuals receiving services, including
consumer satisfaction surveys. DSPD also is expanding its technical
assistance activities, to help providers enhance the quality of
developmental disability services being provided (Jaskulski, 1994a).

***The Kansas Story***

The Kansas Developmental Disabilities Reform Act signed on June 6, 1995,
culminates three years of consensus building on State policy. The Act
states that it will be the policy of the State to assist people who have
developmental disabilities to have:

• Services and supports which allow people opportunities of their
choosing to increase their independence and productivity, as well as
integration and inclusion in the community;

• Access to a range of appropriate services and supports; and

• The same dignity and respect as people who do not have a developmental
disability.

The Developmental Disabilities Reform Act also creates a single point of
entry in each region. The current community mental retardation centers
are being re-designated as Community Developmental Disabilities
Organizations to serve that function. They will be responsible for
determining eligibility as well as serving or arranging for services as
needed by individuals with developmental disabilities in the area,
within the limit of legislative appropriations.

State Developmental Disabilities Councils are a significant resource to
States in public education and consensus building activities. Many
Councils also have directly supported infrastructure enhancements,
including the development of training curricula for service system
personnel, research on financing options, and designing reforms to
quality assurance systems:

> The Louisiana Developmental Disabilities Council provides staff
> support to the Louisiana Coalition for Inclusive Education, and the
> Council\'s Assistant Director serves as the Co­chairperson. Several
> Council members are also Coalition members. In its three year
> existence, the coalition has been successful in moving inclusive
> education to a major State agenda item. The Louisiana Human
> Development Center, a Developmental Disabilities University Affiliated
> Program, was funded by the State Department of Education to establish
> and operate the Louisiana Clearinghouse and Technical Assistance
> Project on Inclusive Education. The Program in Severe Disabilities at
> the University of New Orleans joined with the State Department of
> Education to obtain a Federal systems change grant in inclusive
> education. Both projects provide training and technical assistance to
> school systems. The two universities and the Department of Education
> are all members of the coalition. The Developmental Disabilities
> Council expands access to the resources on inclusive education by
> providing funds to reimburse local school systems for travel expenses
> and substitute teachers for faculty to attend workshops on inclusive
> education and to visit schools where inclusive education is working
> (Zierman, 1995).
>
> The Texas Developmental Disabilities Council produced *The ABC\'s of
> Inclusive Child Care,* a videotape about three children with
> disabilities in regular child care settings. Also featured are two
> child care center directors, two teachers, a teacher\'s aide, two
> parents and two case service coordinators. The video uses imagery and
> story-telling to convey that children with disabilities who are
> included learn to develop the relationships that will benefit them
> throughout their education and on into employment and adult
> responsibilities. The Council has distributed over 700 copies of the
> videotape and continues to respond to requests (Zierman, 1995).
>
> In Kentucky, emergency response personnel do not receive any
> standardized training in disability-related issues. Graduates of
> emergency training programs had difficulty recognizing specific
> disabilities and in interacting with persons with speech, hearing or
> other limitations. Contact often was frustrating for both the
> responding personnel (fire, police, and emergency medical staff) and
> individuals with disabilities. People with disabilities sometimes were
> arrested as a result of misperception and misunderstanding by the
> responding officers. The Kentucky Developmental Disabilities Council
> developed \"Project Aware\" to address these issues, providing
> training to over 1,000 police, fire and emergency medical staff. The
> project has led to discussions on how to incorporate this training in
> the standard curriculum for all emergency response personnel (Zierman,
> 1995).

Another source of support to communities and systems has been the
increasing opportunity for interaction between people with and without
disabilities, and the related visibility of individuals with
disabilities in the media. Children without disabilities are
increasingly able to have classmates with disabilities, who are also
their friends and playmates. A young man with Down Syndrome starring in
the television series \"Life Goes On\" brought home the message of the
capabilities of people with mental retardation, in real life as well as
in the fictional descriptions of his accomplishments. Although barriers
of attitude and segregation are a long way from being torn down, there
is much reason to be optimistic for the future.

VI. **DEVELOPING POLICY FOR INCLUSION**

> **•EMPOWERMENT AND INVOLVEMENT**
>
> **•PLANNING THE JOURNEY TO INCLUSION**
>
> **•RESOURCES FOR INCLUSION STRATEGIES**

*The passage of the Americans of Disabilities Act signals a national
policy that dependency, charity and welfare for people with disabilities
are vestiges of the past. The emphasis now is on empowering people with
disabilities with self-sufficiency, independence and the ability to make
their own choices.* **Evan Kemp (1990).**

Policy makers at all levels of government are looking at ways to promote
inclusion of people with mental retardation and other disabilities, as
community members, co-workers and neighbors. Planning for inclusion
encompasses the frank assessment of current policies that affect
inclusion, identifying barriers to inclusion, and building consensus on
policies and strategies to make inclusion a reality. One of the most
powerful resources to policy makers in the journey to inclusion is the
empowerment and involvement of individuals with mental
retardation/developmental disabilities and their families. Their active
participation ensures that services and supports are cost ­effective
responses to the **customer\'s** needs, as well as reflecting the values
of those most affected.

People with mental retardation and their families are increasingly
involved in making decisions about their lives, in determining the
services they need, and in shaping the policies that affect their access
to supports. Although much more progress is needed, involvement is
increasing at local, State and national levels.

Some of the most exciting activity in empowering and involving
individuals with mental retardation is in self-advocacy. Over the past
20 years, self advocacy groups have formed from the community to the
national level. People First, the first such group, began in Oregon in
1973, and grew rapidly throughout that State and beyond. A 1984 study
identified 152 self-advocacy groups in the United States and British
Columbia, the site of the conference attended by people with mental
retardation from Oregon that inspired what became the first People First
group (Browning, Thorin and Rhoades, 1984). The 1990 Self-Advocacy
Directory (Association for Retarded Citizens \[the Arc\], 1990) listed
380 groups in the U.S. By 1994, a survey conducted by People First of
Illinois and the University of Illinois at Chicago identified a total of
505 active self-advocacy groups in 43 States, with groups in formation
in two additional States (Longhurst, 1994). Although most self-advocacy
organizations are local groups, the survey identified 15 States with
statewide self-advocacy organizations directed by people with
developmental disabilities, as illustrated in Figure 9. Three additional
States were reported to be in the process of developing statewide
organizations (Longhurst, 1994).

Figure 9

**State Self-Advocacy Organizations, 1994**

**States with Self-Advocacy Groups and a State Organization**

**States without Self-Advocacy Groups**

**States with Self-Advocacy Groups but Not a State Organization**

![](media/image13.png){width="4.623611111111111in"
height="2.8534722222222224in"}

**Source: Longhurst, N.,** *1994. The Self-Advocacy Movement by People
with Developmental Disabilities. A Demographic Study and Directory of
Self-Advocacy Groups in the United States.* **Washington, DC: American
Association on Mental Retardation.**

Self-advocates also have formed a national umbrella organization,
Self-Advocates Becoming Empowered. The definition of self-advocacy
adopted by this group is as follows:

Self-Advocacy is teaching people with a disability how to advocate for
themselves and to learn how to speak out for what they believe in. It
teaches us how to make decisions and choices that affect our lives so
that we can become more independent. It also teaches us about our
rights, but along with learning our rights, we learn our
responsibilities (Hayden and Shoultz, 1991).

There is evidence that growth in self-advocacy organizations is
continuing. The most recent directory, the Self-Advocacy Groups 1995
Directory for North America, lists over 700 groups in the U.S. as well
as additional groups in Canada (University of Minnesota, 1995). This
directory was originally compiled by the University of Minnesota with
support from the Kennedy Foundation, and is now maintained by
Self-Advocates Becoming Empowered.

Individuals with mental retardation also are increasing their
opportunities for self-determination. Policy makers and program managers
who are listening to consumers are beginning to meet the challenge of
supporting self-determination without abrogating their responsibilities
to keep vulnerable people as safe and healthy as possible.

***TJ.\'s Story***

When I was 8 years old, I went to a State institution for 11 years in
the State of Connecticut, and the name was The Training School. There
was another State institution there, and it was closed by Brian Lensink
and Charlie Garroway and a lot of other people who fought to close the
institution.

What I understand about empowerment is that we are people first. We want
people to look at us as a person but not as a label. That is happening
at the PCMR. I like the PC but not the MR. The truth is the President\'s
Committee is very important, but MR not, because that is a label that we
are always going to have on people, and we don\'t want that label
anymore. Certainly, you people have the control. You are experts. You
are experts in your field, but I am an expert too, in my own field. I
lived in the institution, and I lived in a group home \...I want you to
look at me as a person, like I am going to look at you as a person. I am
going to look at you as an expert, but I want you to look at me as an
expert because who is going to make it work? You and People First and
people with other disabilities\...

I know you are experts in this field because of your schooling,
training, family, and professional experiences. I am also an expert in
this field because of my firsthand experience: living in institutions
and the community, fighting for a good education, getting a real job,
searching for good health care, struggling to pay my bills, looking for
long-term support, and speaking up for my needs and my rights to
lawmakers.

Excerpted from speech by self-advocate T.J. Monroe to the PCMR
conference on the National Reform Agenda (PCMR, 1994a).

Self-determination can be encouraged from early intervention through
aging and retirement; self­ determination is relevant regardless of
people\'s level of mental retardation. As described in a discussion of
self-determination as an educational outcome, \"Although many skill
areas related to self-determination are more applicable to older
students or students with mild disabilities, self­ determination is not
the sole domain of secondary education or students with mild
disabilities. Making choices, indicating preferences, and developing
self-awareness and confidence involve lifelong experiences and
instruction, independent of level of disability\" (Wehmeyer, 1994).

Federal policies encouraging self-determination include a requirement
under the Individuals with Disabilities Education Act that students\'
preferences and interests be included in their transition plan from
school to work and that they be invited to their IEP/transition plan
meeting (Thompson and Corbey, 1994). The 1992 amendments to the
Rehabilitation Act defined policies in support of self-determination,
requiring that each person\'s Individualized Written Rehabilitation Plan
be developed jointly by the consumer and his/her vocational
rehabilitation counselor, focusing on the person\'s career goals and
specific job preferences (West, Kregel and Revell, 1994).

State policies are encouraging self-determination through such
activities as supports to self­ advocacy organizations (often done
through State Developmental Disabilities Planning Councils), State
education policies requiring collaboration with students planning, as
well as with their parents, and incorporating choice, self-determination
and consumer satisfaction in State quality assurance systems. In the
State of Washington, for example, \"having power and choice\" is one of
six benefits (outcomes) expected for people with mental
retardation/developmental disabilities who receive community residential
services. The State\'s *Residential Service Guidelines* are used to
assess the degree to which consumers are experiencing power and choice
as well as health and safety, personal value and positive recognition,
experiences helping people participate in the physical and social life
of their communities, good relationships with friends and relatives, and
competence to manage daily activities and pursue personal goals.

Washington\'s service program assessment criteria include evidence that
individual planning *efforts* focus on listening to the person and the
person\'s friends and allies to discover individual goals and
preferences, that the environment allows people to express preferences
and to make decisions, that staff demonstrate respect for choices and
encourage the expression of personal power, and that the program
encourages participants to seek information about their rights and
responsibilities, and to act on what they learn. The State\'s underlying
concepts of quality in residential services include the following
beliefs about power and choice:

• People should experience power, control and ownership of their
personal affairs. Expression of personal power and choice are essential
elements in the lives of people. Such expressions help people gain
autonomy, become self-governing and pursue their own interests and
goals.

• People grow and develop by expressing their own unique preferences; by
choosing and trying for their own important objectives, whether or not
they succeed in getting them. People also learn by being able to say
what they want and figuring out how to obtain other people\'s
cooperation.

• In order to respond effectively, residential programs and their staff
must listen carefully to what each individual expresses in terms of
desires, plans and preferences. By listening carefully, programs and
staff will also be able to discern how each person expresses those
choices (Washington Developmental Disabilities Services, 1994).

***Mike\'s Story***

Mike is a 24 year-old self-advocate who lives happily with three other
men. He and his housemates receive support from the local social service
agency as they need it, to live in the house and to do what they want in
personal and community activities. Mike is politically involved through
his various self­ advocacy activities, and his participation on the
Advisory Council of the Institute on Community Integration, University
of Minnesota.

Mike thinks his life is much improved compared to the past, when he
lived in various foster homes where he wasn\'t given the opportunity to
say or do what he wanted. Things are much better since he has become
better informed about his rights and has moved into a supported living
situation.

Mike explains his views on self-direction as follows:

> For me, a good service provider lets persons with developmental
> disabilities be in charge of their lives. They do more than just pay
> attention to licensing requirements. They recognize when someone can
> make their own choices and let people give some input into the
> services they want \... What it all boils down to is to let the
> consumer have choices about their jobs, and where and how they live.
>
> The main way a service provider can meet my needs is by asking me what
> I want, and not assuming what I want. Service providers need to let
> each individual have choices as far as how they want their services
> provided \...A good service provider knows the capability of each
> consumer which whom they work. Every individual is given the
> opportunity to have some degree of self-determination. Providers need
> to work with individuals instead of for them.
>
> The most important aspect of self-determination for me is respect:
> respect the individual, allow them to make choices if they are able
> and willing to do so, and then respect those choices. Ultimately, I
> would like to own my house and choose who works for me and what
> agencies and providers I hire. I hope service providers in the future
> will be able to support me in this dream.

Adapted from Williams, 1994.

One way local, State and the Federal governments are promoting
self-advocates\' participation in the policy-making process is by
appointing individuals with disabilities to governing boards as well as
to advisory committees and task forces. Legislation in Illinois
specifically mandates the inclusion of individuals with disabilities on
all governing bodies that affect such individuals, including entities
such as zoning commissions, health boards and social services boards. At
the Federal level, key

appointments of individuals with disabilities include Susan Daniels,
Associate Commissioner, Social Security Administration; Bob Williams,
Commissioner of the Administration on Developmental Disabilities,
Department of Health and Human Services; Judy Heumann, Assistant
Secretary of Education and Rehabilitative Services; Fredric Schroeder,
Commissioner of the Rehabilitation Services Administration; Katherine
Seelman, Director, National Institute on Disability and Rehabilitation
Research, Department of Education; and Elizabeth Savage, Special
Assistant to the Attorney General for Civil Rights, U.S. Department of
Justice. Individuals with disabilities also have been appointed as staff
and members of the Equal Employment Opportunity Commission, the National
Council on Disability, and the President\'s Committee on Employment of
People with Disabilities. Most important of all, for the first time in
its history, the PCMR membership now includes two self-advocates, Ann
Forts and T.J. Monroe.

**Partners in Policymaking**

The Minnesota Developmental Disabilities Council pioneered the
\"Partners in Policymaking\" program in 1987. It has been replicated
successfully in over 35 States. Partners in Policymaking provides
information, training and skill building to people with developmental
disabilities and family members, so they can become more effective
partners with professionals and policy makers in planning and developing
services at the local, State and Federal levels.

The Minnesota Council has maintained a leadership role in providing
training to self-advocates and family members of people with
developmental disabilities which promotes their active involvement in
developing a consumer-driven service system. The Council has also
provided support and guidance to numerous other States, who have
replicated this program to increase consumer involvement across the
country.

During 1994 the Minnesota Partners in Policymaking program provided
outreach to rural communities to seek potential Partners who are
geographically isolated and unable to travel to the Minneapolis/St. Paul
area on a regular basis. The initiative was successful in linking rural
residents with disabilities and family members with the statewide
network. The rural graduates of the Partners program are now more
connected, less isolated, and richer in resources (Zierman, 1995).

Some State Developmental Disabilities Councils have provided advanced
Partners in Policymaking training, to further significant consumer
involvement. In Iowa, for example, the Council designed an advanced
Partners program specifically to help people with disabilities who had
been appointed to policy-making boards increase their skills to
participate effectively.

Supports to self advocates in policy-making are important in obtaining
the maximum benefits from their participation. For individuals with
mental retardation, this may mean assistance with reading materials,
providing additional time for discussion and questions, and making sure
that people have resources for travel and meeting-related expenses.
These kinds of supports are being made available to the self advocates
who are members of the President\'s Committee on Mental Retardation.

Supports are available in Colorado from the Consumer Involvement Fund of
the Colorado Developmental Disabilities Planning Council. The Fund
provides funds for people with disabilities, their family members or
their guardians to participate in conferences, training events, public
forums, task forces, hearings and other similar activities. The Council
designed the Fund \"to empower people with disabilities and their family
members with the opportunities, experiences and information they need to
meaningfully participate in the decisions that are being made which
affect their lives\" (Colorado Developmental Disabilities Planning
Council, undated).

Family involvement and empower­ment are equally important in supporting
the journey to inclusion. The value of family-centered supports is
increasingly recognized in designing family support programs. Policy
makers are realizing that listening to what parents say they need makes
sense in making decisions about family support programs. In Alaska, for
example, the State developmental disabilities agency decided to ask
families on the waiting list for residential and other specialized
services what it would take for them to get off the list. Much to the
agency\'s surprise, the limited budget was able to stretch much further
than projected, when families asked for such relatively inexpensive
supports as home modifications and respite care. Most of the waiting
list was eliminated, with significantly reduced use of out-of-home
placements. This experience became the basis for a new person- and
family-centered service system, in which the dollars follow the
individual, and family and consumer satisfaction is the primary
criterion for service quality (Renfro, 1995).

Although family focus is increasing, many services continue to be
dominated by professionals who do not always convey respect for
parents\' knowledge and loving concern for their children with
disabilities. Families also may need support in dealing with
professionals, such as help with in the IEP process.

Families as well as professionals also struggle with the transition from
parental decision-making to self-determination as young people with
mental retardation move into adulthood. Systems that include families as
well as consumers in the transition process and in planning for
community living arrangements have found that solutions can be developed
that all parties can support.

***Leslie\'s Story***

Leslie is a 34 year-old young woman with autism and mild mental
retardation. Her mother reports that she has made every effort to
incorporate Leslie\'s choices into daily activities, but that choice was
often difficult for her. When she reached the age when her brothers had
moved out of the family home, her mother had explained to Leslie that
she needed more time (and skills) before that could be considered.

With help from Leslie\'s case manager, her mother started a group home
for her, where she is now living successfully. Her mother reports that
Leslie has made more progress in the three and one­half years she has
lived there than she had ever dreamed possible:

She has mastered self-care skills that she never would have at home and
taken pride in her mastery. She has learned to do household chores such
as washing her own clothes and cleaning her bathroom-because now she
lives in a cooperative setting, not her parent\'s home. Without a
particularly rigorous diet and with some judicious exercise that others
around her were also doing, she has lost over 80 pounds and now loves to
shop for \"thin\" clothes. Leslie has also been taught and now practices
some valuable self-regulatory skills; when she feels herself becoming
agitated or annoyed, she often asks if she can go relax for awhile or
responds to that suggestion from a staff person.

There is still a ways to go before Leslie will be able to take full
personal control of her residence, job and other activities. That time
may never come in its entirety. But she has been given the opportunity
to learn what choices she can make and to see what choices are out
there. I am extremely proud of the progress she has made. And I know how
important it is for her to continue to learn to make her own choices for
that time when I will no longer be here to be involved in her life.

Adapted from Polister, 1994.

Family members are participating in policy-making alongside
self-advocates, as members of State Developmental Disabilities Councils,
governing boards, and Partners in Policymaking training sessions. In
Philadelphia, PA, for example, Family Advisory Committees and a
city-wide Steering Committee, composed of family and agency
representatives, participate in program design and development. Each
agency\'s family-driven family support program is developed with input
from the Family Advisory Committees. In another Pennsylvania county,
family members sit on a review committee that reviews applications for
innovative family supports that are outside current State guidelines for
expenditures.

Resources to family involvement and empowerment in addition to Partners
in Policymaking include the PACER Center in Minneapolis, MN, and the
Beach Center on Families and Disability, based at the University of
Kansas. The Beach Center has developed several resources on family (and
individual) empowerment through its research on supports.

**PLANNING THE JOURNEY TO INCLUSION**

One of the first steps States are taking on the journey to inclusion is
the review of current policies and the resultant outcomes in the lives
of people with mental retardation and their families. An important
starting point is listening to consumers and family members, to be clear
on what outcomes are important to them.

States also are taking a systematic look at the outcomes of current
policies. For the National Collaborative Academies, for example, States
are reviewing the degree of inclusion currently present in their
educational system, community living options, and employment options.
Indicators include trends in the:

• Portion of students with mental retardation in regular classrooms and
resource rooms, as opposed to segregated classes and facilities.

• Number of children with mental retardation/developmental disabilities
in institutions.

• Development of community living arrangements, including supported
living options, small settings, and the related decreasing use of State
and private institutions.

• Use of Medicaid waivers and optional services to finance supports to
inclusion.

• Number of people with mental retardation in supported employment.

States also are looking at their expenditures, and the relative portions
that finance inclusive and non-inclusive supports. Major resources to
States in reviewing outcomes and expenditures include:

• The Annual Report to Congress on the Implementation of The Individuals
with Disabilities Education Act published by the U.S. Department of
Education, which provides State and national data on the number of
children receiving special education services and the portion in each
type of educational setting, for all special education students and for
those with mental retardation and other types of disabilities.

• The longitudinal data and analysis of residential services to
individuals with mental retardation/developmental disabilities published
by the Institute of Community Integration at the University of
Minnesota/University Affiliated Program (UAP). The multi-year series of
reports include profiles of national and State trends in institutional
and community services, including an annual profile since 1977,
differences among the States in use of the Medicaid ICF/MR program, and
characteristics of residents of State­ operated facilities.

• Data on trends in adult services and employment options, maintained by
the Training and Research Institute at Children\'s Hospital in Boston.

• Vocational data specific to supported employment, including
longitudinal analysis of the level of mental retardation among supported
employees, available from the Rehabilitation Research and Training
Center, Virginia Commonwealth University.

• Periodic reviews of trends in family support services developed by the
Human Services Research Institute, including types of supports being
funded, source of funding, numbers of families, and principles
associated with effective family support programs.

• Ongoing analysis of the ways States are using the Medicaid HCBS waiver
program, published periodically by the National Association of State
Developmental Disabilities Services Directors.

• Data published by the Social Security Administration on numbers of
individuals with mental retardation and other disability diagnoses
receiving Supplemental Security Income and Social Security Disability
Insurance, as well as those participating in Social Security Work
Incentive programs and the number of individuals receiving Supplemental
State Payments in various living arrangements.

• Medicaid program information published annually by the Health Care
Financing Administration on each State\'s array of optional services and
use of the medically needy option, and periodic publication of Medicaid
program participation trends by the Ways and Means Committee of the U.S.
House of Representatives.

• The primary resource on trends in public expenditures for mental
retardation/developmental disabilities services, developed by the
Institute on Disability and Human Development, University of Illinois at
Chicago/UAP. The longitudinal analysis includes national and State
expenditure data comparing institutional and community service
expenditures, relative level of effort in relation to State population,
local government expenditures, and special initiatives in early
intervention, family support, aging, supported employment, supported
living, assistive technology, and personal assistance services.

States are using these resources to examine outcome and expenditure
trends over time, as well as comparing their State profile with national
averages and with other States in their region or of comparable size.
State analysis of outcomes and expenditures also requires meshing
national reports of State data with current information from the State
budget and program agencies. Because most nationally published data is
one or more years old, States need updated information on inclusion
outcomes and expenditures to be clear on the current picture.

In addition, States need to obtain additional clarification on specific
outcomes and expenditures that is available only from the relevant State
program agencies. For example, States with the Medicaid rehabilitative
services option may be using it to finance a significant array of
services to individuals with mental retardation, including home- and
school-based services, or may reach only a small portion of the
population because of the State\'s limits in amount, scope and duration,
or limits on the service settings where Medicaid rehabilitative services
are typically available.

States also are reviewing their policies on inclusion and the ways that
policies are implemented in relation to inclusion outcomes. An important
starting point is the official statement of mission, goals and
principles, in State legislation, on mental retardation/developmental
disabilities services, as well as the relevant State agency policy
statements. Although \"walking the walk\" is ultimately more significant
than \"talking the talk,\" official policy statements can form the basis
for planning and taking the journey to inclusion.

It is helpful to look across agency and State budget policies, to see if
they are consistent in their support of inclusion. For example,
pressures to maximize Federal Medicaid revenues may inadvertently
contribute to the use of more restrictive (and often more expensive)
service options than State-funded family supports and informal services.

Input from individuals with mental retardation, family members, and
those providing supports and services also helps identify barriers to
inclusion as policies are currently being implemented. The Three Year
Plans published by each State\'s Developmental Disabilities Council
provide a summary of strengths and weaknesses in the service system from
the perspective of people with developmental disabilities and their
families. Most Councils hold public hearings prior to developing their
Three Year Plans, and all Councils include consumers and family members
on the Council. The most recent Three Year Plans cover Federal fiscal
years 1995-1997.

The input of stakeholders also is helpful in clarifying the messages
being given by State funding priorities and financing mechanisms. For
example, States with stringent limits on family supports and extensive
approval requirements by professionals send a message to families that
their knowledge and concern for their son or daughter with mental
retardation is not recognized as valid. Conversely, States with family
subsidies or programs that emphasize family choices on the supports they
need send a message of family empowerment and appreciation of the
tremendous contribution families make in caring for their loved ones
with disabilities.

***The Colorado Story***

The values of community inclusion, responsible choice, control,
belonging, relationships, competencies, talent, security and
self-respect are encompassed in the mission statement of the Colorado
Division for Developmental Disabilities, and reflected in legislation on
developmental disabilities services. The Colorado Progress Assessment
Review (COPAR) was developed to evaluate outcomes based on these values,
for individuals receiving State-funded supports. The program began in
1986 in response to a legislative mandate that the State Auditor\'s
Office do an independent evaluation of the progress of individuals with
developmental disabilities.

The State contracts with a private research firm to conduct in-person
interviews with people receiving services, family members and service
providers. Surveyors question people to find outcomes, differences
across programs, settings and regions, and other factors. They also ask
questions about experiences before and after new service initiatives, to
determine the effect on people\'s quality of life. Studies also are
conducted of the decision-making, satisfaction, community inclusion,
relationships, talents, security and self-respect of people in
Colorado\'s general public. These findings serve as standards for
services provided to people with developmental disabilities.

The Division for Developmental Disabilities uses COPAR reports to
monitor how well its mission is being carried out, determine
satisfaction of its customers, recognize exemplary services, and
demonstrate cost-effectiveness of State expenditures.

Summary information from COPAR surveys on service outcomes is submitted
to the State Legislature as part of the annual budget request, and is
used to guide the State in making decisions about the success of its
programs and to support allocation of resources to new program models.

Adapted from Ruth (1994) and Jaskulski (1994a).

Another way States send messages on inclusion is through the quality
assurance systems that monitor services to individuals with mental
retardation/developmental disabilities. The questions asked in the
quality review process have a powerful effect on the services being
provided.

Legislative task forces on quality issues and legislation calling for
reforms in quality assurance systems to place more emphasis on inclusion
outcomes, satisfaction and quality of life for individuals with mental
retardation are a significant tool in the journey to inclusion. A major
resource to States in looking at quality assurance strategies is the
series *Innovations in Quality Assurance,* published through the
University of Minnesota/UAP in *1993, 1994* and *1995.* The 1994 edition
leads off with a keynote address by Clarence Sundram, executive director
of the New York State Commission on Quality of Care for the Mentally
Disabled, and recently nominated for a Federal judgeship, including the
following observations on inclusion and quality:

\[Recent\] changes in values emphasized the right to live in the
community. Policies changed. Programs for funding community placement
increased. Monitoring and evaluation, licensing and certification
processes proliferated.

Now the voices of consumers, their families and their allies, are
pushing us to an acceptance of fundamentally different values; values
rooted in an appreciation of the same human dignity that animates every
human life. We are beginning to acknowledge more explicitly that the
same self-determination, preferences, and choices that we value in our
own lives are also valuable in the lives of people with disabilities.

We are increasingly coming to appreciate that the lives of people with
developmental disabilities can be limited by other people\'s decisions
and confining expectations. By ignoring, discounting or underestimating
their abilities, countless lives have been relegated to a wasteland
barren of expectations and opportunities. Yet our quality assurance
activities have traditionally dwelt in the world of standards designed
to avoid abuse and neglect, and have rarely addressed this systematic
deprivation of autonomy and opportunity for greater self-direction, for
a chance to live a life with a meaning. But isn\'t this the essence of
what quality is? This latter aspect poses a much more formidable
challenge than dealing with incident reporting and similar QA
activities.

These insights are leading us to policies that unequivocally proclaim
that segregation in separate residences and separate programs based on
disability alone is wrong. That in turn will lead us to programs that
provide housing, supports and opportunities guided by the individual
preferences of people with disabilities. The changes that service
systems are undergoing, although they may seem painfully slow to
impatient advocates, are mercurial when viewed in the broader historical
context. In twenty short years, we have come to a point of abandoning
institutions that took us 200 years to establish (Sundram, 1994).

**RESOURCES FOR INCLUSION STRATEGIES**

There is no lack of suggestions and examples of \"what works\" in making
inclusion a reality for people with mental retardation. The resources
and references highlighted throughout this report provide hundreds of
possible strategies for States, communities and organizations to
consider in designing their own journey to inclusion. Resources within
the State, particularly individuals with mental retardation, family
members, advocates for inclusion throughout the disability network, and
those who have already made inclusion work, can provide expertise that
is particularly relevant to each State\'s political and social context.

The National Conference of State Legislatures continues to be a major
resource to States in developing strategies for inclusion. The NCSL
Developmental Disabilities Task Force, a group of over 130 State
legislators from 43 States, meets two or three times a year, in
conjunction with NCSL national meetings, to exchange information on
legislative strategies and best practices and to advise relevant NCSL
policy committees. With voluntary support from participating
Developmental Disabilities Councils, through the National Association of
Developmental Disabilities Councils, the Task Force also publishes
resource materials such as the recent monograph on family support
(Bauer, 1994). Earlier the Developmental Disabilities Task Force
sponsored publication of Americans with Developmental Disabilities:
Policy Directions for the States (Wright et al., 1991), summarizing
concepts, reasons for legislators to be concerned, Federal and State
activities, and recommendations for State action in the following areas:

+--------------------------------+-------------------------------------+
| > • Early intervention         | > • Community living                |
+--------------------------------+-------------------------------------+
| > • Family support             | > • Supported employment            |
+--------------------------------+-------------------------------------+
| > • Transition services        | > • Funding                         |
+--------------------------------+-------------------------------------+

The NCSL Task Force on Developmental Disabilities lists the following
recommendations for State action on funding:

> l\. Develop financial goals, based on values that empower individuals,
> for community services and support systems for persons with
> developmental disabilities.
>
> 2\. Provide fiscal incentives and technical assistance to help service
> providers move from center-based early intervention, employment, or
> residential care to community-integrated and individualized approaches
> to early intervention, supported employment, and housing.
>
> 3\. Take advantage of the full range of Federal funds and options
> under current law.
>
> 4\. Work with business and industry to develop creative public/private
> financing mechanisms, such as State high risk pools, State subsidies
> for private health insurance, State-financed catastrophic health
> insurance, or a Self-Sufficiency Trust.
>
> 5\. Examine pay levels of community-based personnel, as compared with
> institutionally based personnel, to try to reduce turnover and
> increase quality (Wright et al., 1991).

The National Association of Developmental Disabilities Councils also has
teamed up with NCSL to publish resources on quality assurance reforms,
*Promoting Quality in Developmental Disabilities Services-Considerations
for State Legislators* (Jaskulski, 1994a) and
*Deinstitutionalization-­From Theory to Practice* (Records, 1994). These
and other NADDC publications, along with resources published by the
Institute on Community Integration, University of Minnesota/UAP, the
University of Illinois at Chicago/UAP, the President\'s Committee on
Mental Retardation, and the National Association of State Developmental
Disabilities Services Directors, are especially targeted to States.

***The Massachusetts Story***

The Massachusetts Department of Mental Retardation recently restructured
its licensing, quality assurance, and human rights divisions into a
single Office of Quality Enhancement. The cornerstone of the office is a
new certification system that replaces the previous licensing and
program evaluation procedures and instruments with a process that uses a
single instrument: QUEST, the Quality Enhancement Survey Tool.

Certification based on QUEST began for all providers in January 1994.
The survey process assesses the quality of life of a sample of
individuals served by providers. The QUEST consists of six quality of
life areas: rights and dignity; individual control; community
membership; relationships; personal growth and accomplishments; and
personal well being. In addition, the QUEST contains a seventh area that
defines outcome measures for the organization.

Teams of State Quality Enhancement Specialists, consumers and family
members conduct the surveys. The surveys focus on observation,
discussion with consumers, staff and family members/friends, and related
documentation, rather than focusing primarily on \"paperwork.\" Programs
receive various levels of certification, depending on the extent to
which the target outcomes are present.

The Department of Mental Retardation has found QUEST to be both
effective in evaluating the quality of life for people with
developmental disabilities, and cost effective, in that it combines
several quality assurance/quality enhancement functions into one
process.

Adapted from Rowe, 1994.

The ultimate resource on the journey to inclusion, however, continues to
be individuals with mental retardation. How well States listen to these
voices may be the most significant factor in making the commitment to
inclusion and in making it work.

The views of self-advocates meeting in 1994 as the Steering Committee of
Self-Advocates Becoming Empowered, are summarized in Taking Place:
Standing Up and Speaking Out about Living,in Our Communities (SABE
Steering Committee, 1994). They talked about what they would like to see
happen in their communities by the year 2000 that is not happening now.
Their vision for the year 2000 is as follows:

• A person with a disability as mayor.

• A service system where the money follows the person and where the
person gets what he/she says is needed (not what others say is needed).

• For hospitals not to discriminate against people with disabilities.

• For this group to have no other work to do, because we worked
ourselves out of a job!

• To have no waiting lists for services, anywhere.

• To eliminate the word \"retarded.\"

• Fully integrated communities, without prejudice and discrimination.

• Supported employment and real jobs for everyone \... no more sheltered
workshops!

• To have everyone learn about self ­advocacy, to eliminate the hate, war
and violence so the world would be a better place to live.

• To have transportation for everyone who needs it.

• To see people believe in disability unity, and to sustain the
disability community.

• To have children with disabilities included in regular classes.

• To have young people included in the self-advocacy movement.

• To have professionals get their act together by the year 2000, so
they\'d actually be supportive.

• That people with disabilities are accepted in their communities.

• To have people with disabilities improve the postal service.

• To draft a proposal for the country on how to treat and speak or write
about people with disabilities.

• To have universal health care (SABE Steering Committee, 1994).

Efforts to bring other voices in harmony with self-advocacy voices are
paying remarkable dividends on the journey to inclusion.

***Appendix A***

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Appendix B

The President\'s Committee on Mental Retardation 330 Independence
Avenue, S.W., Wilbur J. Cohen Building, Room 5325, Washington, D.C.
20201

**Members:**

Donna Shalala, Chairperson, Secretary of Health and Human Services
Valerie J. Bradley, Vice Chairperson Lorenzo H. Aguilar-Melancon

Jane Browning

Robert Dinerstein

Steven M. Eidelman

Ann M. Forts

Gisselle Acevedo Franco

Joyce Keller

John F. Kennedy, Jr.

K. Charlie Lakin

Ruth Luckasson

T.J. Monroe

Elizabeth Pittinger

Michael Remus

Tom E.C. Smith

Deborah Spitalnik

Cathy Ficker Terrill

Jacquelyn B. Victorian

Barbara Yoshioka Wheeler

Sheryl White-Scott

Virginia Williams

**Ex-Officio Members:**

Janet Reno, Attorney General

Robert Reich, Secretary of Labor

Henry Cisneros, Secretary of HUD

Eli J. Segal, CEO, Corporation for National and Community Service

Richard Riley, Secretary of Education

**Staff:**

Gary Blumenthal, Executive Director

John Pride, Deputy Executive Director

Laverdia Roach

George Bouthilet

Thelma Lucas

Marci Whiteman

Bena Smith

Ross Singletary

Peggy Butler

Angie Green

Terri Lion

Dina Bergman

**Administration for Children and Families**

Mary Jo Bane, Assistant Secretary

+----------------------------------------+-----------------------------+
| > Appendix                             | > C                         |
+----------------------------------------+-----------------------------+
| > *National Organizations Dealing with |                             |
| > Mental Retardation and*              |                             |
| >                                      |                             |
| > *Other Developmental Disabilities*   |                             |
+----------------------------------------+-----------------------------+
| > The Accreditation Council for        | American Occupational       |
| > Services for People                  | Therapy Association         |
+----------------------------------------+-----------------------------+
| > with Disabilities                    | > 4720 Montogomery Lane     |
+----------------------------------------+-----------------------------+
| > 100 West Road, Suite 406             | > P.O. Box 31220            |
+----------------------------------------+-----------------------------+
| > Towson, Maryland 21204               | > Rockville, Maryland       |
|                                        | > 20824-1220                |
+----------------------------------------+-----------------------------+
| > Ph: (410) 583-0060                   | > Ph: (301) 652-2682        |
+----------------------------------------+-----------------------------+
| > Fax: (410) 583-0063                  | > Fax: (301) 652-7711       |
+----------------------------------------+-----------------------------+
| > The Arc - National Headquarters      | > American Rehabilitation   |
|                                        | > Association               |
+----------------------------------------+-----------------------------+
| > (Formerly Assoc. for Retarded        | > 1350 I Street, N.W.,      |
| > Citizens of the United States)       | > Suite 670                 |
+----------------------------------------+-----------------------------+
| > 500 East Border, Suite 300           | > Washington, D.C. 20005    |
+----------------------------------------+-----------------------------+
| > Arlington, Texas 76010               | > Ph:(202)789-5700          |
+----------------------------------------+-----------------------------+
| > Ph: (817) 261-6003                   | > Fax: (202) 789-5942       |
+----------------------------------------+-----------------------------+
| > Fax: (817) 277-3491                  |                             |
+----------------------------------------+-----------------------------+
| > The Arc - Governmental Affairs       | > Consortium for Citizens   |
|                                        | > with Disabilities         |
+----------------------------------------+-----------------------------+
| > (Formerly Assoc. for Retarded        | > 1522 K Street, N.W.,      |
| > Citizens of the United States)       | > Suite 516                 |
+----------------------------------------+-----------------------------+
| > 1522 K Street, N.W., Suite 516       | > Washington, D.C. 20005    |
+----------------------------------------+-----------------------------+
| > Washington, D.C. 20005-1247          | > Ph: (202) 785-3388        |
+----------------------------------------+-----------------------------+
| > Ph: (202) 785-3388                   | > Fax: (202) 467-4179       |
+----------------------------------------+-----------------------------+
| > Fax: (202) 467-4179                  |                             |
+----------------------------------------+-----------------------------+
| > American Association of University   | > Council for Exceptional   |
| > Affiliated Programs                  | > Children                  |
+----------------------------------------+-----------------------------+
| > 8630 Fenton Street, Suite 410        | > 1920 Association Drive    |
+----------------------------------------+-----------------------------+
| > Silver Spring, Maryland 20910        | > Reston, Virginia 22091    |
+----------------------------------------+-----------------------------+
| > Ph: (301) 588-8252                   | > Ph: (703) 264-9409        |
+----------------------------------------+-----------------------------+
| > Fax: (301) 588-2842                  | > Fax: (703) 264-9494       |
+----------------------------------------+-----------------------------+
| > American Association on Mental       | > Institute on Community    |
| > Retardation                          | > Integration               |
+----------------------------------------+-----------------------------+
| > 444 North Capitol Street, N.W.,      | > University of Minnesota   |
| > Suite 486                            |                             |
+----------------------------------------+-----------------------------+
| > Washington, D.C. 20001               | > 150 Pillsbury Drive,      |
|                                        | > S.E., 6 Pattee Hall       |
+----------------------------------------+-----------------------------+
| > Ph: (202) 387-1968                   | > Minneapolis, Minnesota    |
|                                        | > 55455                     |
+----------------------------------------+-----------------------------+
| > Fax: (202) 387-2193                  | > Ph: (612) 624-4848        |
+----------------------------------------+-----------------------------+
|                                        | > Fax: (612) 625-6619       |
+----------------------------------------+-----------------------------+
| > American Network of Community        | > Institute on Disability   |
| > Options                              | > and Human Development     |
+----------------------------------------+-----------------------------+
| > and Resources                        | > University of Illinois at |
|                                        | > Chicago                   |
+----------------------------------------+-----------------------------+
| > 4200 Evergreen Lane, Suite 315       | > 1640 West Roosevelt Road  |
+----------------------------------------+-----------------------------+
| > Annandale, Virginia 22003            | > Chicago, IL 60608         |
+----------------------------------------+-----------------------------+
| > Ph: (703) 642-6614                   | > Ph: (312) 413-1647        |
+----------------------------------------+-----------------------------+
| > Fax: (703) 642-0497                  | > Fax: (312) 413-1326       |
+----------------------------------------+-----------------------------+
| > Joseph P. Kennedy, Jr. Foundation    | > National Down Syndrome    |
|                                        | > Congress                  |
+----------------------------------------+-----------------------------+
| > 1325 G Street NW, Suite 500          | > 1605 Chantilly Drive,     |
|                                        | > Suite 250                 |
+----------------------------------------+-----------------------------+
| > Washington, D.C. 20005               | > Atlanta, Georgia 30324    |
+----------------------------------------+-----------------------------+
| > Ph: (202) 393-1250                   | > Ph: (404) 633-1555        |
+----------------------------------------+-----------------------------+
| > Fax: (202) 824-0351                  | > Fax: (404) 633-2817       |
+----------------------------------------+-----------------------------+
| > National Association of              | > National Down Syndrome    |
| > Developmental Disabilities Councils  | > Society                   |
+----------------------------------------+-----------------------------+
| > 1234 Massachusetts Avenue, N.W.,     | > 666 Broadway, Suite 810   |
| > Suite 103                            |                             |
+----------------------------------------+-----------------------------+
| > Washington, D.C. 20005               | > New York, New York 10012  |
+----------------------------------------+-----------------------------+
| > Ph: (202) 347-1234                   | > Ph: (212) 460-9330        |
+----------------------------------------+-----------------------------+
| > Fax: (202) 347-4023                  | > Fax: (212) 979-2873       |
+----------------------------------------+-----------------------------+

National Association of Protection and Advocacy Systems

900 2nd Street, N.E., Suite 211

Washington, D.C. 20002

Ph: (202) 408-9514

Fax: (202) 408-9520

National Early Childhood Technical Assistance System (NEC\*TAS)

Frank Porter Graham Child Development Center

University of North Carolina at Chapel Hill

Suite 500 Nations Bank Plaza, 137 East Franklin Street

Chapel Hill, North Carolina 27514

Ph: (919) 962-2001

Fax: (919) 966-7463

National Association of State Boards of Education

1012 Cameron Street

Alexandria, Virginia 22314

Ph: (703) 684-4000

Fax: (703) 836-2313

National Governor\'s Association

444 North Capitol Street, N.W., Suite 267

Washington, D.C. 20001

Ph: (202) 624-5300

Fax: (202) 624-5313

National Association of State Directors of Developmental Disabilities
Services, Inc.

113 Oronoco Street

Alexandria, Virginia 22314

Ph: (703) 683-4202

Fax: (703) 684-1395

National HOYO Alliance

University of New Hampshire

Heidelbert-Harris Building 125 Tech Drive

Durham, New Hampshire 03 824

Ph: (603) 862-0550

Fax: (603) 62-0555

National Conference of State Legislatures Task Force on Developmental
Disabilities

1560 Broadway, Suite 700

Denver, Colorado 80202

Ph: (303) 830-2200

Fax: (303) 863-8003

National Parent Network on Disabilities

1727 King Street, Suite 305

Alexandria, Virginia 22314

Ph: (703) 684-6763

Fax: (703) 836-1232

National Council on Educational Restructuring and Inclusion

The Graduate School and University Center

The City University of New York

33 West 42nd Street

New York, New York 10036

Ph: (212) 642-2656 or 2151

Fax: (212) 642-1972

Rehabilitation Research and Training Center on Supported Employment

Virginia Commonwealth University

P.O. Box 842011

Richmond, Virginia 23284-2011

Ph: (804) 828-2325

Fax: (804) 828-2193

Self-Advocates Becoming Empowered 1601

S. Main, Suite 300.

Tulsa, Oklahoma 74119

Ph: (918) 582-8272

Fax: (918) 582-3628

United Cerebral Palsy Associations, Inc.

1660 L Street, NW, Suite 700

Washington, D.C. 20036

Ph: (202) 842-1266

Fax: (202) 776-0414

Training and Research Institute for People with Disabilities

Children\'s Hospital of Boston

300 Longwood Avenue

Boston, Massachusetts 02115

Ph: (617) 355-6506

Fax: (617) 355-7940

Research and Training Center on Community Living

University of Minnesota

214 Pattee Hall, 150 Pillsbury Drive SE

Minneapolis, MN 55455

Ph: (612) 624-6328

Fax: (612) 625-9344

> Appendix D
>
> *Federal Agencies Dealing with Mental Retardation and Other
> Developmental Disabilities*

Administration on Developmental Disabilities U.S. Department of Health
and Human Services Hubert H. Humphrey Building, Room 329-D

200 Independence Avenue, S.W.

Washington, D.C. 20201

Ph: (202) 690-6590

Fax: (202) 690-6904

Centers for Disease Control and Prevention

Center for Environmental Health

Developmental Disabilities Branch

U.S. Department of Health and Human Services

4770 Bufford Highway, N.E.

Atlanta, Georgia 30341-3724

Ph: (404) 488-7360

Fax: (404) 488-7156

Community Planning and Development

U.S. Department of Housing and Urban Development

751 7th Street, S. W., Room 7244

Washington, D.C. 20410

Ph: (202) 708-1911

Fax: (202) 708-3363

Coordination and Review Section

Civil Rights Division

U.S. Department of Justice

10th and Constitution Avenues, N. W.

Washington, D.C. 20530-0001

Ph: (202) 616-7779

Fax: (202) 307-0595

Division of Adult Education and Literacy Office of Vocational And Adult
Education

U.S. Department of Education

Mary E. Switzer Building, Room 4415

330 C Street, S.W.

Washington, D.C. 20202

Ph: (202)205-5410

Fax: (202) 205-8973

National Institute on Disability and Rehabilitation Research Office of
Special Education and Rehabilitation Services

U.S. Department of Education

Mary E. Switzer Building, Room 3060

330 C Street, S.W.

Washington, D.C. 20202

Ph: (202) 205-8134

Fax: (202) 205-8997

General Accounting Office

Housing and Community Development Issues

441 G Street, N. W., Room 1842

Washington, D.C. 20548

Ph: (202) 512-7631

Fax: (202) 512-8774

Health Care Financing Administration Division of Coverage Policy

U.S. Department of Health and Human Services

6325 Security Boulevard, Room 300

Baltimore, Maryland 21207

Ph: (410) 786-5659

Fax: (410) 786-3252

Maternal and Child Health Bureau

Division of Services for Children with Special Health Needs

U.S. Department of Health and Human Services

Parklawn Building, Room 18A-27

5600 Fishers Lane

Rockville, Maryland 20857

Ph: (301) 443-2350

Fax: (301) 443-1728

Mental Retardation and Developmental Disabilities Branch National
Institute of Child Health and Human Development National Institutes of
Health

U.S. Department of Health and Human Services

6100 Executive Boulevard, Room 4BQ9

Bethesda, Maryland 20892-7510

Ph: (301) 496-1383

Fax: (301) 496-3791

National Council on Disability

1331 F Street, N.W., Room 1050

Washington, D.C. 20004

Ph: (202) 272-2004

Fax: (202) 272-2022

Office of Special Education and Rehabilitative Services Office of
Special Education Programs

U.S. Department of Education

Mary E. Switzer Building, Room 3086

330 C Street, S.W.

Washington, D.C. 20202

Ph: (202) 205-5507

Fax: (202) 260-0416

Office of the Assistant Secretary for Planning and Evaluation

U.S. Department of Health and Human Services

Hubert H. Humphrey Building, Room 405-F

200 Independence Avenue, S.W.

Washington, D.C. 20201

Ph: (202) 690-7853

Fax: (202) 690-7383

Office of Special Education and Rehabilitative Services Rehabilitation
Services Administration

U.S. Department of Education

Mary E. Switzer Building, Room 3228

330 C Street, S.W.

Washington, D.C. 20202

Ph: (202) 205-9297

Fax: (202) 260-9772

Office of Disability

Social Security Administration

U.S. Department of Health and Human Services

Altmeyer Building, Room 545

6401 Security Boulevard

Baltimore, Maryland 20235

Ph: (401) 965-3424

Fax: (401) 965-6503

Office of Special Education and Rehabilitative Services Secondary
Education and Transition Services Branch

U.S. Department of Education

Mary E. Switzer Building, Room 4625

330 C Street, S.W.

Washington, D.C. 20202

Ph: (202) 205-8112

Fax: (202) 205-8971

Office of Disease Prevention and Health Promotion

U.S. Department of Health and Human Services

Mary E. Switzer Building, Room 2132

300 Independence Avenue, S.W.

Washington, D.C. 20201

Ph: (202) 205-8611

Fax: (202) 205-9478

President\'s Committee on Employment of People with Disabilities

1331 F Street, N.W., 3rd Floor

Washington, D.C. 20004-1107

Ph: (202) 376-6200

Fax: (202) 376-6219

Office of Elderly and Assisted Housing

U.S. Department of Housing and Urban Development

451 7th Street, S.W., Room 6130

Washington, D.C. 20410-0001

Ph: (202) 708-4542

Fax: (202) 708-1300

President\'s Committee on Mental Retardation Administration for Children
and Families

U.S. Department of Health and Human Services

Wilbur J. Cohen Building, Room 5325

330 Independence Avenue, S. W.

Washington, D.C. 20201

Ph: (202) 619-0634

Fax: (202) 205-9519

Office of the Inspector General

U.S. Department of Health and Human Services

Wilbur J. Cohen Building

330 Independence Avenue, S.W.

Washington, D.C. 20201

Ph: (202) 619-0480

Fax: (202) 401-0556