### With a little help from my friends...

*A series on contemporary supports to people*

*with mental retardation*

#### **Real Lives**

# Co-Authors

Amy Hewitt

Susan O'Nell

# Editor

Yolande Bestgen

## August 1998

# Acknowledgments

The President's Committee on Mental Retardation (PCMR) is proud to
present *With A Little Help From My Friends*...a series on contemporary
supports to people with mental retardation.

This forward thinking series of booklets is intended to support people
with mental retardation and related conditions to participate as full
citizens in their communities in every aspect of their life.

The President's Committee has made a commitment to contribute
information to the field that will promote the quality of life and
inclusion of people with mental retardation and developmental
disabilities. This series of five booklets provides timely, innovative
and creative 'possibilities' for issues ranging from; how people can
direct their own services to assure a full life in the community...to
critical issues of addressing challenging behaviors to funding options
for supports and services.

Special thanks and recognition are extended to PCMR Committee member,
**John F. Kennedy, Jr.** Through his efforts this project was
underwritten by the Reaching Up, In., a non-profit organization devoted
to improving educational and career opportunities for direct care
workers. The concepts shared through these publications will definitely
support that mission.

The Committee is most grateful for the talents and patience of the
co-authors of this series of publications. **Amy Hewitt** and **Susan
O'Nell** faithfully wrote and re-wrote these booklets until the best
format was identified to effectively share this volume of significant
information to the field. They indeed have covered the waterfront of
issues and carefully crafted a series of booklets that shares critical
information in a meaningful and understandable way.

PCMR would also like to extend its thanks to **Yolande Bestgen**, PCMR
Director of Special Projects, for editing and nurturing this project to
completion; and to **Kate Billings** for her professionalism as layout
editor of this and numerous other PCMR publications.

It is our belief that this PCMR publication series will contribute to
the future direction of services and supports for people with mental
retardation into the next millennium. Our work is cut out for us but,
*With A Little Help From My Friends*, we can achieve our ultimate goal
of lifelong community inclusion for people with mental retardation.

## Valerie J. Bradley Gary H. Blumenthal

## Chair Executive Director 

**PREFACE**

Services and supports to people with mental retardation have undergone
significant change in the last 50 years. Today people with disabilities
are living longer. They and their families are asking for and

expecting meaningful support to live their lives as full citizens in
their own communities.

This series of five booklets provides information in a comprehensive but
basic manner designed for

individuals who do not know much about how supports are currently
provided, but who would like to

know more about the history of services and supports as well as current
issues and future trends.

The following is a brief overview of the information and issues covered
by each booklet:

**Speaking Up, Speaking Out (Booklet #1):** This booklet covers
definitions and prevalence of mental

retardation, issues in the current legal system, along with
self-advocacy and self-determination.

**Growing Strong (Booklet #2):** This booklet covers issues and topics
in early intervention, family

supports, and the educational system.

**Real lives (Booklet #3):** This booklet covers services and supports
in the areas of supported living,

vocational opportunities, and supported recreation.

**I Am Who I Am (Booklet #4):** This booklet covers a variety of
specialized support needs including

challenging behaviors, supports to the aging, culturally competent
supports, and person-centered planning as a tool for providing supports
that are meaningful to the individual.

**Changing Systems (Booklet #5):** This booklet covers issues in quality
assurance and funding of supports and services.

# Acknowledgments

The following individual\'s contributed materials and provided
information to make this series a reality. All across the country people
were willing to take time to talk to us, drop everything and send us
something, or dig through their phone books to find that one number we
needed. They are gratefully acknowledged. There is a lot of enthusiasm
and caring out there and it was great to see it.

James Beaty

Rick Berkobien

Charlotte Booth

Jean Bowen

David Braddock

Val Bradley

Darden Bynum

Steve Dresniers

Mark Englander

John Filler

Doug Forand

Sally Carson Gaines

Jill Galvin

Vicki Gaylord

Kim Guin

Deborah A. Gilmer

Bob Gettings

Mary Hayden

Richard Hemp

Vicky Hicks-Tunich

Kathy Hulgin

Joyce Keller

Mary Kay Kennedy

Jay Klein

Troy Konarski

Charlie Lakin

Sheryl Larson

Jennifer Macleod

Marijo McBride

James Meadours

Joe Meadours

Jean Ness

Emily Murgo Nisenbaum

John O\'Brien

Janet Peters

John Peters

Joe Pichler

Miriam Podrazik

Irene Rausch

Leigh Ann Reynolds

Alan Robichaud

Kristin Ryan

Christine Salisbury

Wayne Sargent

Caren Sax

Julie Silver

Michael Smull

JoAnn Sowers

Marianne Taylor

Jean Tuller

Matt Zeigler

**Thank you!**

Special thanks to Janet Bast for taking the lead on the quality
assurance section, to Kathy Burkholder, Lisa Primerano and Yolande
Bestgen for their final edits, to Lynda Anderson for pulling together
materials on parents with mental retardation, and to Linda Heyne for her
input on the recreation and leisure section!

##  Note About Language

Who we are is as much about how others see us as it is about our
physical beings. We can eat right,

exercise, and believe in ourselves all we want, but if no one ever
notices it won\'t last for long. So what does it mean to be \"a person
with mental retardation?\" Does it say something about a person that is
meaningful and relevant? Does it tell people something about that person
that is valuable, helpful, or essential?

When asked, most self-advocates with mental retardation will make it
clear that the label \"mentally

retarded\" is stigmatizing and limiting. If the label comes before the
person then a large part of who that person is has already been defined.

Despite clear indications from self-advocacy groups that the words
mental retardation should be \"retired,\" support professionals and
agencies that oversee support systems struggle with how to provide the
necessary assistance to people who need it, without defining who is
eligible (i.e., creating a label). By its very nature service provision
hangs onto labels in order to know where to best put resources. The
dilemma of dropping all labels and still accurately describing who can
receive supports through State agencies is not solved. But there is a
clear mandate from the people who receive these services and supports
that people---not labels---always come first.

That part is simple. It\'s a commitment that when we talk, write, or
otherwise communicate about people with mental retardation or any
disability we never put the word \"disability\" before the word
\"person;\" that when we have the chance to educate others about
people-first language, we do; and that as we look at the global issues
of how to support people, we remember that it\'s the person, not the
service, that matters. It\'s a sign of respect. It\'s a sign that
although not all the questions have been answered correctly, we are up
to the challenge. Spread the word: \"People First!\"

## 

## 

## Table Of Contents

### Overview 1 

Residential Options and Supports 1

#### Institutions 1 

#### Closing Institutions 2 

#### Nursing Homes 4 

Intermediate Care Facilities for People with Mental Retardation

and Related Conditions (ICFs/MR) 4

Home and Community Based Services (HCBS) 5

#### In-Home Supports 6

Semi-Independent Living 6

From Funding Programs to Supported Living 6

#### Home Ownership and Control 8 

Working for a Living: Employment 9

#### Vocational Services Today 11 

##### Agents of Change 12 

Work Incentives 13

Interact Center for the Visual and Performing Arts: 14

Skatasaurous Rex: A Story of Success 15

#### Looking to the Future 16 

Playtime: Recreational and Leisure Opportunities 17

#### Barriers to Integrated Recreation 18 

#### Strategies for Support and Inclusion 20 

Conclusion 23

Resources 24

References 26

Glossary 28

Common Acronyms 31

PCMR Citizen and Ex-Officio Members 33

PCMR Staff 36

# Overview

Not all people with mental retardation and related conditions need
special services after they graduate from high school. They are able to
find employment and a satisfactory place to live by using the natural
supports they have in place, such as family members or friends who can
help them meet the day to day challenges of life. But many people with
mental retardation and other developmental disabilities do need
significant supports from paid providers to maintain their homes, their
jobs, and to actively participate in their communities. This booklet
provides information about supported living, supported employment, and
supported recreational options for people with mental retardation and
related conditions.

# Residential Options and Supports

Residential options for people with mental retardation and other
developmental disabilities have

significantly changed over the last twenty-five years. The end of this
century has been marked by a rise in community living options and the
fall of large institutions. As a nation we have moved from offering

essentially one type of residential option---the institution---to
offering predominately community

residential supports through an array of options including in-home
family supports, small group homes, supported living, and foster care.

Today, in most States, people with mental retardation and other
developmental disabilities live in homes in a community, with fewer than
fifteen other people. Living in the smaller decentralized homes provides
people with opportunities to be included in community activities and to
gain life experiences and skills that assist them in living more
independently. More importantly, community living and home control
provides people with a sense of accomplishment and pride.

People with mental retardation who need assistance or support in their
homes receive that assistance in a

number of ways. Many people, live with family members who provide all
needed supports. Others live

away from their families and rely completely on paid support staff. Yet
others are somewhere in-between, they may live at home with family
members and paid support staff may come into the family home, or they
may live in a home run by an agency but remain heavily connected with
family members.

Where people live, how much support they receive, and the kinds of
supports they get, often has more to do with how those supports are
funded and when the person entered the social service system than what
the person actually needs. In addition, there are many people waiting,
in family homes, nursing homes, or institutions, for appropriate
supports in the community to become available. The primary locations
where people receive paid \"residential supports\" today include
institutions, Intermediate Care Facilities for persons with Mental
Retardation (ICFs/MR), group homes, and supported living arrangements
funded by the Home and Community Based Services (HCBS) program, nursing
homes, and homes or apartments owned by the person receiving services or
their families.

## Institutions 

Most people who needed daily assistance and supervision before the
1970\'s and who couldn\'t live with

their families, lived in large institutions. It has been well-chronicled
that the conditions of these

underfunded and overcrowded institutions of the mid-1900\'s were
deplorable. They were described by

some as \"hell on earth\" and the \"land of the living dead\" (Blatt &
Kaplan, 1974) and many people with

mental retardation and developmental disabilities living in these places
were neglected, abused, and

deprived of basic human rights. Exposes such as that presented by
Geraldo Rivera on television in the

1970\'s regarding the Willowbrook institution in New York or the
photographic essay book, Christmas in

Purgatory, which depicted care in the institutions, brought public
attention to the undesirable conditions

(e.g., overcrowding, abuse, inadequate food and shelter, lack of
personal property, no privacy, lack of opportunities to participate in
typical activities).

In 1971, in response to these horrifying conditions, the Federal
government became involved in monitoring the provision of residential
services to people with mental retardation and other developmental
disabilities by providing States with the opportunity to cost-share
certain residential services that met specific standards of quality.
These standards specified such things as the number of staff who needed
to be present in relationship to the number of people served,
maintenance of health regulations, and availability of therapeutic
supports (e.g. dental, medical, speech).

Since that time there have been improvements in the environment and
conditions of many institutional

settings. Most are no longer so overcrowded. They have more staff,
provide more activities, meet the

basic health care of the people who live in them and provide basic food
and shelter. However, it is still

clear that institutions are not places where people with mental
retardation are empowered and have full,

enriched lives. People who live in institutions have virtually no
privacy. They have few opportunities to

meet new people, to go new places, or to participate in community
activities. They are typically separated from family by large distances
and have little control or choice in their lives.

Today, many large institutions for people with mental retardation and
developmental disabilities still exist, but their numbers are shrinking
and fewer people are living in them. A few States (New Hampshire,
Vermont, Rhode Island, New Mexico and the District of Columbia) have
successfully closed all of their large institutions. The population
remaining in institutions today is aging, with dramatically fewer
children being admitted. Many people who live in institutions have a
combination of disabilities and/or behaviors that pose a challenge to
community living, still others have criminal backgrounds. While people
continue to leave the institutions, others are entering (and presumably
re-entering), suggesting a lack of adequate supports in smaller
community programs. What has been learned about institutional and large
congregate care settings vs. smaller community living options for people
with mental retardation and developmental disabilities is that people
are more likely to experience lives which are similar to their same-age
peers without disabilities when they live in the community. In addition,
institutions are the most expensive type of residential services.

## Closing Institutions 

It seems very clear that as a nation we have embraced the notion of
community living. Unprecedented

numbers of individuals with mental retardation are now living in the
community. However, a number of

people continue to reside in institutions. The process toward closing
institutions is never easy and is often marked with varied opinions and
passions. We can look to those States who no longer have large

institutions for guidance and experience, but more importantly should
listen to the people whose lives are

affected by institutions closing.

Many people with mental retardation and other developmental disabilities
are very clear that they want all institutions throughout the United
States to close. Self-Advocates Becoming Empowered (SABE), a

national grass roots organization of local self-advocacy has identified
this as their top priority. "Campaign for Freedom, Closing the Doors\"
is an organized effort to close the doors of institutions and open the
pathway to community living across the nation. SABE believes \"that
people with disabilities should be treated as equals. Which means they
should be given decisions, choices, rights, responsibilities, chances to
speak up and to empower themselves and opportunities to make new
friendships and renew old friendships, just like everyone else\" (Nelis
& Ward, 1996).

Family members also have opinions about whether their loved ones should
move from institutions into

community settings. However, their opinions range from strong opposition
to strong support. In a review of twenty-one articles regarding parental
attitudes and expectations related to deinstitutionalization,
researchers at the University of Minnesota, have identified the
following emerging themes about parental attitudes toward their children
living in institutions and the community:

-   The vast majority of parents were satisfied (secure, content, and
    comfortable) with their family member\'s public institution
    placement.

-   The vast majority of parents changed their attitudes about community
    placement after their family member had moved to the community.

-   After experiencing community services, parents viewed the
    institution less positively than they did when their family member
    lived there.

-   Parents observed improved quality of life and relationships for
    their family member after the move.

Those parents initially opposed to their child\'s move to the community
offered a number of reasons for

their attitude. Parents said they were initially opposed to the move
because they felt that: 1) the institutions were better than community
homes at responding to the specific characteristics or needs of their
children; 2) available homes were inadequate in terms of safety, service
quality or staffing; 3) the process involved in the decision to move
people was unfair, improper or disrespectful; or 4) they felt movement
to the community would increase the care-giving responsibilities of the
family members.

While most parents were ultimately satisfied with the community
placement, many offered recommendations for lessening the fear about the
move. They suggested those planning for people\'s moving must
acknowledge as legitimate the fears and wishes of the family and respond
to them as well as they can. They must include the person who is going
to move and the family members in decisions related to the move. Visits
should be arranged for family members to potential community sites, and
parents who have been involved in previous moves should act as guides in
these visits and/or be available in other ways to parents. Government
agencies should assist in establishing communication between families
and community providers. Finally, they emphasized the importance of
public statement of government commitments to funding and other policies
that ensure the viability, continuity, and quality of community
settings.

A self-advocate perspective of the realities of institutions: \"Should
we spend money on institutions or to support people in communities? As a
self-advocate, it bothers me that people are still arguing about this.
I\'m not quite sure what all the graphs and charts and numbers mean, or
what the latest research says, or whose reports to believe. So, I judge
by what I know. I listen to the people who live in the institutions."

Individuals with disabilities who have successfully moved from
institutions into the community should also be involved in this planning
process. They can serve as mentors to individuals who are moving from an
institution to the community and can provide valuable insight and
support.

Excerpts re-printed with permission from: \"Parental Attitudes Toward
Deinstitutionalization\" by Lynda Anderson and Sheryl A. Larson. In
IMPACT: Feature Issue on Institutional Programs. Minneapolis: MN, Center
on Residential Services and Community Living, University of Minnesota.

## Nursing Homes 

Many people with mental retardation and developmental disabilities live
in nursing homes. In 1987 the

Omnibus Budget Reconciliation Act (OBRA-87) mandated that placements in
nursing homes for people with mental retardation be reviewed to see if
the placement was appropriate based on medical needs. It was found that
the majority of people with mental retardation in nursing homes were not
suitably placed. If they did not have health factors that required a
nursing home setting, it made more sense to help them

move to community homes which provided supports to people with mental
retardation.

OBRA-87 required that alternative placements be sought for people who
were only living in a nursing

home because there were no other places to live, and that a plan for
active treatment be put in place for

those that remained in nursing homes (meaning that people had
opportunities to learn new things and take care of their own needs to
the furthest extent possible), however, their numbers are decreasing
slowly. In 1996 there were still approximately 37,000 people with mental
retardation and developmental disabilities living in nursing homes, a
number which has not substantially changed since 1970.

Nationwide, approximately 10% of all people with mental retardation and
developmental disabilities whose services are funded through Medicaid
ICFs/MR, HCBS or nursing facility programs were in Medicaid nursing
homes. In one State, nursing facilities provide supports to more than
one-third of its citizens with mental retardation and developmental
disabilities, and in two other States nursing homes provide supports to
more than one-fifth of Medicaid long-term service recipients with mental
retardation and developmental disabilities.

Nursing homes typically are designed to provide long term health and
personal care services to people who are aging. Many people with mental
retardation and developmental disabilities who live in nursing homes do
not require \"nursing care\" but instead need individualized supports to
assist them in becoming fully included in their communities. In many
cases, nursing facilities are not equipped to provide these

individualized supports.

**Intermediate Care Facilities for People with Mental Retardation and**

**Related Conditions (ICFs/MR)**

The Intermediate Care Facilities for People with Mental Retardation
(ICFs/MR) program was originated by the Federal government in 1971 and
was the first Federal program targeted to monitor residential services
for people with mental retardation. ICFs/MR programs range from
supporting 6 people in a home in the community to several hundred people
in large congregate settings (including units in State institutions).
The standards set by the ICFs/MR program require 24-hour supervision of
the individuals who live in these programs and is the most expensive
type of community residential services for people with mental
retardation and other developmental disabilities. The federal government
pays from 50%- 80% (depending on the State\'s per capita income) of the
costs for ICFs/MR programs. To receive this funding, the facilities must
comply with an expansive number of regulations in areas such as
administration, environments and personnel, along with treatment, goal
planning (programming), and observation of rights of the people
receiving services.

There are more ICFs/MR operating in the nation today than ever before,
but they are serving less people

and providing services in smaller settings. Today, more people live in
privately owned ICFs/MR than in

State-operated ICFs/MR. Overall, ICFs/MR serve only a small percentage
of people who live in

community settings and they do so at a relatively high cost per person.

From 1982 to 1993 the ICFs/MR program was notable for its stability in
the number of persons served. As of June 1994 there were 142,118 persons
living in all ICFs/MR. The June 1996 population of ICFs/MR was 129, 449.
Specially in large ICFs/MR (16 or more residents), there are fewer
people living in those residences as compared to the early 1980's. By
June 1996 there were 85,109 persons in ICFs/MR of 16 or more residents.
In 1982 there were 130,767.

Outside of institutions, small ICFs/MR are the least flexible, most
heavily regulated and expensive

residential option. In a time with long waiting lists, a push for cost
efficiency, continued movement toward community services, and an
increased desire for individualized supports, ICFs/MR lack
responsiveness to the unique needs of individuals and current societal
and governmental pressures.

**Home and Community Based Services (HCBS)**

The Medicaid Home and Community Based Services waiver program was
established in 1981. This

program allows certain Medicaid requirements to be \"waived\" and for
States to finance \"non-institutional\" services for people with mental
retardation and developmental disabilities who are eligible for Medicaid
and who, in the absence of alternative services would remain in or
likely be placed in an ICF/MR, nursing home, or institutional setting.

HCBS allow for the provision of a number of services, including: 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 total costs for Medicaid
funded long-term care. HCBS reimbursements can not be used to pay for
room and board, but can provide services to people in their homes such
as personal care, habilitation, and homemaker services. In most cases
cash assistance from other Social Security Act programs (i.e. SSI) are
used to fund room and board costs.

Currently, Home and Community Based Services are used to support people
living in their family\'s home, a foster family\'s home, or a small
congregate-care home (less than 6 people) in the community. People might
receive respite services on weekends and evenings in a neighbor\'s home
and/or a group home run by a private agency. Although flexible in
funding and free from expansive Federal regulations, some States have
used their HCBS waiver to simulate services found in small ICFs/MR (or
"mini-institutions") by imposing highly structured regulatory
requirements on these services. Most HCBS support services are provided
by privately run agencies.

There is growth in the number of people receiving Home and Community
Based Services. As of June 1996 there were 190,230 persons with mental
retardation and developmental disabilities receiving HCBS, an increase
of 27.5% over the 149,185 recipients in 1995.

Today more people receive services through HCBS funding than through
ICFs/MR funding. There is a large variability between States in per
person expenditures, but overall, the cost of providing HCBS services is
significantly less than the cost of services in ICFs/MR and
State-operated institutions.

## 

## 

## In-Home Supports 

Many people with mental retardation and developmental disabilities
receive supports in their family home. In 1996, states reported an
estimated 265,613 persons receiving services in their family homes. This
accounts for 45% of all residential supports provided. However, there is
great variation across the states with regard to utilization of
family-based services ranging from 0%-77%.

In-home supports provide an opportunity for families to remain intact
and are an alternative to out-of-home placements. The types of supports
provided can be tailored to meet the needs of the individual receiving
services as well as their family and friends. Typically, paid in-home
services are provided based on the number of hours needed at times when
family, friends, neighbors or others are not available to provide
supports or do not have the necessary skills. These services range from
a few hours a week to 24 hours a day depending on the needs of the
individual being served. In-home supports are often funded by Medicaid
through the Home and Community Based Services program, or other Medicaid
programs offering personal care attendant services.

## Semi-Independent Living 

Many States and counties provide funding for semi-independent living
services. These supports are most

often provided to individuals with mental retardation and developmental
disabilities who are quite skilled

and may only need a few hours of support each week, typically in areas
such as grocery shopping,

budgeting or paying bills. Individuals who receive these supports may
live alone or with roommates in apartments or homes.

## From Funding Programs to Supported Living 

Currently there is a move away from funding and creating "residential
programs" toward creating "supported living.\" Supported living means
providing supports to people with mental retardation and developmental
disabilities based on their individual strengths, preferences, and
needs, and in their preferred communities. It is based on the ideology
that people have a right to live in their own homes, stay connected to
families and communities of origin, choose what they want to do, with
whom, when and how they want to do it. It presumes that people need more
than just a place to live and someone to provide assistance to them.
These may seem like basic and fundamental rights and desires of all
citizens, but supported living is the exception not the rule and is
certainly not the reality for most citizens with mental retardation and
developmental disabilities living in the United States today.

Responding to the needs of individuals by supporting them in their own
homes is clearly a growing

practice in residential services today. It has been greatly assisted by
the expansion of the Medicaid Home

and Community Based Services waiver programs and the momentum stimulated
by the Medicaid

Community Supported Living Arrangements (CSLA)\"pilot projects\" in
eight states which ended in 1995. These demonstration projects enabled
states to develop separate and new supported living programs. Even after
the end of the demonstration projects, supported living options continue
to grow as the newly inspired awareness of the rights and human dignity
of persons with developmental disabilities has required it.

The following are essential parts to the vision of supported living:

-   People will have homes of their own, in which they 'control their
    own front door'. This includes selecting their own homes in
    neighborhoods and communities of their choosing, as well as choosing
    who they will live with or receive supports from, as opposed to
    living in facilities where they do not choose their house mates,
    support staff, or neighborhoods.

-   The selection and financing of people\'s housing will, as much as
    possible, be separate from the selection and financing of the
    services and supports they receive so that they don\'t have to move
    whenever they want a different service provider.

-   People will define the lifestyles they want. Where people\'s
    experiences have been limited they will be given opportunities and
    assistance in developing and expressing preferences for their
    lifestyles, instead of living according to regulations.

-   People who formally and informally support persons with
    developmental disabilities will learn and practice new ways of
    listening to what people want and dream about, and will redefine
    themselves as allies in helping people achieve as much of what they
    want in life as can be achieved, rather than deciding what\'s
    \"best\" for the person.

-   Service providers will redefine their role to that of accommodating
    and supporting the personal preferences and desired lifestyles of
    persons with developmental disabilities, rather than trying to
    \"fix\" them.

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-   Service providers will learn how to be less intrusive in the ways
    that they bring services and supports into people\'s homes, and be
    sensitive to and respectful of people\'s homes and the rights and
    courtesies associated with them, rather than making these homes like
    institutions.

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-   People will exercise choice and control in what services and
    supports they receive and from whom, rather than taking whatever
    they can get.

-   Service providers will improve their abilities (and flexibility) to
    deliver services in different ways to different people in different
    places instead of offering a \"one-size-fits-all\" approach to
    supports.

-   Service providers will learn new ways of operating to adjust to a
    \"market\" for services in which persons served and the revenues
    generated are determined by demand for specific services - not a
    comprehensive contract to care for groups of individuals.

No one can predict in what ways or how much the expanding efforts to
adopt supported living will affect the lives of all persons with
developmental disabilities. Clearly the rhetoric is expanding, although
too often the new words are applied to old ways of thinking and acting.
Frequently today even people in State institutions are referred to as
\"consumers\" as though they chose to put their money down for a \"bed\"
in a place with 400 roommates. Goals are now called \"outcomes\" but
still created and imposed by that same group better known as the
Interdisciplinary Team (IDT) which is now called a \"support network.\"
Continued discussions on the national level about access to federal
financing of services to persons with developmental disabilities will
have its effect. But ultimately supported living is not about new words
or sources of funding. It is fundamentally about new attitudes and
commitments toward the rights, dignity, freedom, and humanity that
people with developmental disabilities share with us all. For those who
have had roles in the traditional ways of providing services, supported
living is about fundamental change in service provision. At all levels
of the service system, roles are being renegotiated, a necessary, but
difficult process.

For supported living to become the rule rather than the exception, the
real requirement is not funding, but

commitment: a commitment to continuously listen to people with
disabilities, to honor their requests, and

to make the changes in roles and responsibilities as traditional roles
conflict with the supports required.

What is required is not commitment to provide better programs, but a
commitment to assist people to get

the lives that they want.

Adapted from: Supported Community Living: From \"Facilities\" to
\"Homes\", by Charlie Lakin & Michael Smull. In IMPACT: Feature Issue on
Supported Living. Minneapolis: MN, University of Minnesota.

## Home Ownership and Control 

To many people nothing is as liberating as the feeling of having their
own homes. Most people feel a sense of pride, security, empowerment and
control when they have their own home for the first time. Today, more
than ever before, people with mental retardation and developmental
disabilities are being given the opportunity to own or lease their own
homes. In fact, about 14%, (estimated national total of 45,012) of
people receiving residential services because of mental retardation or
other developmental disabilities live in their own homes that they own
or lease. Nationally, between 1991 and 1996 the estimated number of
people living in their own home increased by 19,000 persons as the
movement toward consumer controlled housing and supported living
continued to gain momentum.

On September 1, 1993, the Administration on Developmental
Disabilities(ADD) entered into a cooperative agreement with the
Institute on Disability, a University Affiliated Program at the
University of New Hampshire, to create a national information and
technical assistance center on home ownership/control and personalized
support: the National Home of Your Own Alliance. The NHYO Alliance is a
partnership between the Federal government and nationally recognized
advocates and leaders whose goal is to create housing and support
opportunities that individuals choose and control.

The NHYO Alliance is working in the States of Alabama, Arizona,
Arkansas, Connecticut, Georgia, Idaho, Illinois, Indiana, Louisiana,
Massachusetts, Michigan, Mississippi, Missouri, New Hampshire, New
Jersey, New Mexico, New York, Oregon, Pennsylvania, Texas, Washington,
West Virginia, and Washington, DC, to develop local demonstrations of
home ownership. Each State receiving technical assistance from the
Alliance agrees to institute a pilot project to assist a specified
number of people to own or lease their own homes. State coalitions are
assisted by the Alliance to maximize their unique opportunities to
overcome challenges in creating home ownership and control. In addition,
the Alliance assists grassroots leadership in working with State systems
to develop the critical mass of experience and practice within the
lending and social service industries necessary to better serve people
with disabilities.

The Alliance has developed a national information clearinghouse,
performing policy research,

collaborating with national mortgage lenders, and conducting an
evaluation related to people with

disabilities owning and controlling their own homes. The Alliance works
in collaboration with the Center

for Universal Design in North Carolina, United Cerebral Palsy
Associations in Washington, DC, Coop

Initiatives in Connecticut, The Institute on Disabilities at Temple
University in Pennsylvania, and the Human Services Research Institute in
Massachusetts.

The lessons learned from Home of Your Own initiatives around the country
raise new possibilities for the creation of person-owned/controlled
housing and support. These possibilities can only become nationwide
realities if local, State, and national groups focus attention on the
physical, economic, social, and institutional barriers that exist.

A lack of personal financial resources and systemic dependence on
programs that limit personal choices are two major barriers that deny
basic opportunities and civil rights. The limited capacity to create
innovative housing and support options and the limited involvement of
people in these efforts are also barriers to person-owned/controlled
housing and support.

The NHYO Alliance is focused on creating a foundation of exemplary
practices and both public and

private sector partnerships that will link the home mortgage and social
service industries to better serve

people with disabilities. Objectives for the Alliance are achieved
within the context of three major

components: (a) leadership of people with disabilities in all aspects of
the Alliance, (b) intensive technical assistance to States, and (c)
information dissemination.

# Working for a Living: Employment

Until very recently employment opportunities were denied for people with
the most severe disabilities

(including people with mental retardation). If people received services
at all they received them in

sheltered (segregated) workshops. In 1973, armed with section 504 of the
Rehabilitation Act which stated that no one could be denied access to
any program or activity receiving federal funds simply on the basis of
having a handicap, the disability rights movement was given fuel to
start making their voices heard. The disability rights movement targeted
general issues of accessibility and access to secondary education and
employment opportunities were high priorities for many people with
disabilities. People wanted a chance to be employed in meaningful and
productive jobs. They wanted to have careers and a chance to contribute
by paying taxes and meeting their own expenses. The Rehabilitation Act
of 1973 gave them a legal foundation to make this possible.

In the area of employment, the disability rights movement continued to
receive congressional support as

more laws with increasing stronger language were passed in an attempt to
set a national agenda that

presumes the employability of all people with disabilities (The
Rehabilitation Act Amendments of 1992).

The 1984 amendments to the Developmental Disabilities Assistance and
Bill of Rights Act (commonly

known as the DD Act) defined supported employment and mandated that
State developmental disabilities councils make supported employment
opportunities a priority. The definition of supported employment in the
act was essentially that the work needed to be in integrated settings,
pay real wages and was for individuals with developmental disabilities
for whom employment was not likely to happen without some form of
support (i.e. transportation, training, or supervision). The American
with Disabilities Act of 1990 (ADA) again reinforced the vision of
persons with disabilities having the ability and the right to real
employment choices in fully integrated environments.

In 1986 and 1987 the Rehabilitation Service Administration awarded a
total of 27 grants to State Vocational Rehabilitation (VR) programs. The
purpose of these five-year grants was to work toward system change which
would expand employment opportunities for people with the most severe
disabilities (commonly considered people with mental retardation and
other developmental disabilities as well as people with mental illness
or physical disabilities that profoundly effect their abilities to
function). Most of the remaining States received similar grants of
either 3 or 5 years within the next few years.

These systems change grants emphasized finding employment for people
with severe disabilities in natural work environments where most of the
other workers did not have disabilities. As a part of the demonstration
projects people with disabilities were helped to find jobs in integrated
settings and were supported in one of the following three ways:

-   *Competitive or time-limited employment*. Support that lasts for a
    limited amount of time to help the person find and keep a job,
    through job placement and on-the-job training.

-   *Supported employment*. Support to help a person find the job and
    then continued support indefinitely, if needed, to maintain the job.
    This support may be as little as a few hours a week or in some cases
    consistent supervision and support through-out the work day.

-   *Enclave work*. Support to teams of individuals (varies from 2
    to 15) with similar disabilities who work together at one site in
    the community (e.g., a number of people on a lawn maintenance crew).

There has been some debate of the ability to make a lasting impact on
employment options in such a short time (3-5 years) when there is a long
history of segregation, low expectations for people with severe
disabilities, and funding barriers to overcome. However, the grants and
the integrated employment that came about because of the grants did
provide some information which is useful, including the following:

-   The grants were successful in increasing the percentage of people
    who were employed in integrated work sites.

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-   Estimates of the increase in real numbers is from 10,000 people
    participating in supported employment in 1986 to over 100,000 people
    participating in supported employment in 1993 with the largest
    growth between 1987-1990. Other estimates are as high as 250,000
    people when enclave work is included.

-   The changes have had a lasting impact on services provided through
    agencies that primarily offer vocational support to people who have
    mental retardation or developmental disabilities. Essentially the
    grants gave many agencies serving people with mental retardation and
    developmental disabilities the initial push they needed to start
    using supported employment.

-   People with mental retardation and other severe disabilities have
    been successfully employed when given the right kinds of support.

-   People with mental retardation and other developmental disabilities
    are the largest demographic group to benefit from supported
    employment options.

-   People who work at real jobs in integrated settings experience many
    benefits including: having more money and consequently relying less
    on public assistance money, contributing to their communities
    through the payment of taxes (1996 survey estimated that over \$100
    million each year is paid in Federal and local taxes by people in
    supported employment), enjoying other benefits of employment such as
    positive relationships with coworkers and feeling good about their
    performance of job duties.

-   Employers recognized that people with disabilities bring valuable
    skills and attitudes to their jobs, including being reliable,
    cooperative, friendly and dedicated.

## Vocational Services Today 

Despite the progress made through the system change grants most people
receiving vocational services

through agencies serving people with mental retardation and
developmental disabilities still work in segregated sheltered settings.
Sheltered work experiences vary from \"practicing\" work through
simulation, participating in daily living activities, such as cleaning
and cooking, to completing contract work or piece assembly. For
instance, in one room of a sheltered workshop people may be cleaning
casings for computers which will be assembled somewhere else, in another
room people are baking together, and in yet another room someone is
washing laundry. Only the cleaning of computer casings will be
considered paid work and that may be as little as a few cents per tray,
giving the most productive workers a paycheck of about a \$10.00 a
month. If there is no \"paying\" work, activities that simulate work
experiences such as sorting a number of items and placing them in bags,
will be created to provide \"work\" experience.

Many people feel that in order to be successfully employed a person must
first develop a certain level of

competence. For this reason the focus of segregated workshops is to
teach \"job skills.\" This is done on the premise that people with
disabilities have to acquire certain skills before employers will
consider hiring them.

This approach of teaching people skills outside of an actual work
setting has several disadvantages for the worker with mental retardation
and other developmental disabilities, particularly those with more
severe disabilities. For one thing, an emphasis is placed on correcting
the person\'s deficits in order to make them appealing to potential
employers, but for many people becoming the \"typical\" worker could
never be a reality. For another, many people with cognitive impairments
can not learn a skill in one environment and then perform that skill
effectively in another environment (generalization) so that learning a
skill in the workshop does not necessarily translate into being able to
do it in a real work situation such as a laundry mat or postal room.

Motivation is more difficult to achieve in a segregated training setting
than when training is provided on

the job because the person does not see immediate and real benefits of
performing the task such as interaction with coworkers and supervisors,
or a meaningful pay-check. In addition the training of work skills in a
workshop setting rarely come from the perspective of a person\'s
interests and strengths. They are most often \"generic\" skills that
have been selected as important by others. In the real world of
employment, jobs and their related skills vary. For one job it may be
extremely important that you are well groomed and friendly (e.g.
restaurant hostess), at another grooming and personality may mean very
little if you have certain skills (e.g. car mechanic). Without looking
closely at a person\'s interests and abilities and selecting a career
path based on those skills and interests, it is very difficult to
properly train a person for a job.

While some people are satisfied with their experience in segregated
settings many are not. Often people

feel bored, frustrated, and angry by the limitations imposed in a
segregated setting. This may create a

situation where the changes for integrated employment are diminished
because the people displays

behaviors in a segregated setting which make support people cautious
about helping them find a

community jobs.

For instance, one man in his late 40\'s lived in a group home and worked
in a sheltered workshop for people with a high level of support needs
(i.e. many couldn\'t walk, communicate, or eat without assistance.)
Although this man was able to walk, talk and communicate well, it took
the staff at the sheltered workshop nearly 3 years to realize this. His
work consisted of collating and stapling together a stack of papers,
then taking out the staple and sorting the papers back into separate
piles. During the day he often displayed short bursts of temper
particularly when encouraged by staff to increase his productivity. This
\"challenging behavior\" (occasional yelling or pounding his fist on the
table), kept him from being eligible for any integrated employment. For
this man and for many others this becomes a vicious cycle where
demeaning work encourages poor behavior and where the poor behavior is
used as a reason for keeping the person from gainful employment in an
integrated setting.

Demonstration of successful employment for people with mental
retardation and other developmental

disabilities, has shown that community placement and integrated
employment can work. This on-the-job

training model can increase motivation of workers and starts from an
understanding of their strengths and interests. Rather than trying to
shape the person receiving services into the standard employee, support
people and employers come from a diversity perspective that embraces and
uses the person\'s unique gifts.

As stated earlier, it is estimated that up to 250,000 people with
disabilities benefit from work in integrated employment through some
form of employment support (competitive, supported, enclave). The
majority of these individuals are people with mental retardation or
related conditions. While it has been demonstrated that people with even
very complex needs can be successfully employed in an integrated setting
with proper support, the majority of people with mental retardation
currently using supported employment services are people with lower
support needs.

## Agents Of Change 

Often opportunities for integrated employment only come about when a
support agency makes the

commitment to providing opportunities for real jobs to the people they
serve. When looking at agencies

who have made the conversion from primarily providing segregated
vocational support to providing

primarily integrated vocational supports there are a number of factors
which need attention. This type of

transformation has often been the result of a variety of factors
including a change in philosophy at the top (often a new director with
new ideas), or some financial crisis which has necessitated change.

When making these changes the direct support staff play a critical role.
Direct support staff must

clearly understand that part of their job is to be creative and
flexible. They must have the necessary training and administrative
support to achieve the goals. Job descriptions need to be revised as
needed to reflect actual duties and support people must be able to
redefine their jobs to build on their strengths. For instance not
everyone will be good at job development but they may be very good at
providing continuing supports and follow-up after the initial contact is
established in a place of employment.

As agencies have tried new options for securing employment they have
found a number of strategies that

work including the following:

-   Learn about a person\'s interests, strengths, personal connections
    and natural supports (family, friends, neighborhood, connecting
    events) and use this as a basis for finding a good job match.

-   Use networking strategies like those traditionally used by people
    without disabilities. This has been associated with shorter job
    searches and higher satisfaction on the job. Job coaches have used
    their own personal and professional contacts and less often, tapped
    into personal and professional contacts of family members of the
    person receiving services in order to locate employment.

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-   A related approach to networking is cultivating and maintaining
    relationships with businesses and employers. This can be done
    through a series of \"cold calls\" with new employers or through
    continuing relationships with employers even when the support agency
    doesn\'t have anyone currently employed there.

Another area which will continue to push along the movement to higher
rates of integrated employment for younger people is the area of
transitional services in high school (commonly called \"Transition\").
The Individuals with Disabilities Education Act (IDEA) not only
encourages fully integrated classrooms for children with disabilities it
has also put an emphasis on transitional services, or preparing the
young adult for their adult role, including employment or further
education (post-secondary) if desired. This focus has been strengthened
over the years whenever IDEA has been reauthorized.

The School-to-Work Opportunities Act of 1994 (STWO) also focuses on
preparing teenagers for

employment. STWO applies to all children in the public schools although
it includes specific language to

make clear that \"all\" includes even those with the most severe
disabilities as well as other groups who have not always left
high-school prepared for employment.

For people who do not go on to post-secondary education the first few
years out of high-school appear to be the most critical in establishing
a positive and successful employment record. Vocational classes and
employment during the school years are helpful in increasing the
employability of the student after graduation. Many people with mental
retardation do not make this smooth transition into employment. Without
work opportunities they are less likely to have satisfying experiences
in the rest of their lives as they have less money and fewer
opportunities for building self-esteem and socializing. Often they may
remain in their parents home at a time when many of their peers have
moved out and are making their own homes.

## Work Incentives 

Many people with mental retardation receive Supplemental Security Income
(SSI) or Social Security

Disability Income (SSDI) as primary sources of income. These benefits
have a number of criteria for

eligibility including limits on how much a person can earn and the value
of assets that people can acquire. Some people who would like to work,
avoid supported employment opportunities for fear of losing necessary
benefits. The following are some of the Social Security programs people
should know about:

-   *1619(a) and 1619 (b).* These programs allow people to make over the
    limit for SSI and still maintain some benefits. 1619 (a) uses a
    gradual decrease in financial benefits as people\'s incomes
    increase. 1619 (b) lets people maintain their Medicaid benefits even
    if they are past the amount allowable to receive cash benefits. On
    average the amount of money people with mental retardation make in
    supported employment is below the cut off level for these programs,
    so many people can work and maintain benefits.

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-   *Planning for Achieving Self-Support (PASS).* PASS is a program that
    allows people to save a certain amount of money toward activities or
    expenses that aide in employment. For instance, education, training,
    work-related equipment, and funds to start a business, may all be
    eligible as expenses that can be saved for without reducing the
    amount of monthly SSI checks.

In addition to these programs, there are other work incentives built
into Social Security. For instance, if

people need to purchase special equipment (e.g. wheelchair) or services
(e.g., personal care attendant) in

order to be successfully employed, the earnings used to pay for these
expense will not count as income.

For more information, contact your local Social Security Office for a
publication called \"Working While Disabled\...How We Can Help\"
(Publication No. 05-10095).

## Interact Center for the Visual and Performing Arts: Artists at Work 

Just northwest of downtown Minneapolis, Minnesota is a quiet street of
minimally converted warehouses. Look around and you\'ll find studios,
restaurants and coffee shops. Open one set of double-hinged doors and
you\'ve entered an artist community. The walls are hung with large
colorful paintings, sculpture covers the tables. In the first of two
large rooms a group of artists have stopped working on the sculpting
materials in front of them. Their hands are moving in unison as they
practice sign language.

In the next and larger of the rooms six actors are rehearsing a scene.
They are acting out the process of an

\"annual review\" similar to those that take place regularly for people
who receive support services for

developmental disabilities. The six actors each represent a different
part of the \"interdisciplinary team\"

(IDT): a psychologist, a county case manager, a parent, two direct
support workers (one from work, one

from home), and a person receiving services.

The script is written; a short but accurate story in which the person
receiving services and his dream of

being an actor is minimized (\"Oh Eric, you won\'t make any money as an
actor! \"He was a donkey in the

Christmas play last year.\" \"Maybe we could enroll him in drama therapy
or face painting class!\" \"I think

he\'s out of touch with reality, we may need to increase our
sessions.\"), but the actors are free to improvise based on their
experiences. And for four out of the six, the experiences are very close
to reality because they have identified disabilities. In fact the whole
scene is a page out of Eric Wheeler\'s life and the actor is playing
himself.

Welcome to Interact Center for the Visual and Performing Arts (ICVPA).
Here actors, sculptors, dancers, painters, writers, artists of all types
have come together to mentor each other. Artists with and without
physical disabilities, artist with and without mental illness and
artists with and without mental retardation and related disabilities are
all part of ICVPA\'s unique take on vocational services.

Through a process of core course work and masters classes, people of
varying abilities and talents, hone

their skills. When ready, artists can begin working with a mentor in a
chosen medium. They create

portfolios, write resumes, or develop other tools necessary for a career
of their choosing and begin the

search for a job. After course work is done ICVPA continues to help
these artists by being a resource for

job placement.

According to Jeanne Calvit, the Artistic Director of ICVPA this kind of
program couldn\'t have come about by thinking in traditional services
mode. \"People already in the system give up too easily when a

bureaucrat says \'No.\'\" she claims. And no one could fault Jeanne for
lack of persistence. Although ICVPA has only been open since September
of 1996, there were years of work in order to get it up and running.

While changing the system to create opportunities for people with mental
retardation and related

disabilities is important, the opening of ICVPA shows the kind of
initiative it sometimes takes to work

within the existing system. For instance, in Minnesota licensing for
vocational programs for people with

developmental disabilities was too restrictive in the types of people
who could participate and the kinds of activities which could take place
at Interact. Instead of giving up, the advocates of this program looked
around and found that being licensed as an Adult Day Care gave them the
kind of flexibility they needed.

In the scene from the play, actor Eric Wheeler is encouraged by his team
to continue learning to mop in a

sheltered workshop for \$1.40 an hour (\"You got a raise?!\"), with the
eventual hope of someday being able to mop \"in the community.\" This
scene is followed by a monologue in which the actor directly speaks to
the audience about his real life and how not so long ago he was
encouraged to give up on his dream of being an actor and stay with his
job vacuuming at a fabric store. He relates to the audience the way he
rode the bus an hour and a half each way to work for a little over an
hour at below minimum wage. \"Today,\" says Jeanne Calvit, \"Eric makes
more money in one performance than he did for a month of work as a
janitor.\"

But it\'s about more than money. It\'s about expression, following
dreams, being challenged and valued. As Eric comes to the climax of his
story his voice raises, his face is in anguish \"They told me I\'d never
be an actor!\" he roars. Then he pauses for a very long time. \"Come on
Eric!\" The voice of Mary Brown,

Outreach Director and Artistic Associate directs him. \"You need to say
that, then immediately switch to a happy mood and say, and now I am.\"

Apparently his timing is off. Apparently Interacts is not.

## Skatasaurous Rex: A Story of Success 

Jim has spent most of his career in sheltered work environments. While
living in institutions this was his only option because people never
left the grounds to pursue off-campus employment as it was \"against the
rules.\" While living in a group home he attended a local sheltered
workshop which he found boring,

uninspiring and demoralizing. Because he didn\'t want to be there and
found little reward in his \$2.00 -

\$10.00 checks for two weeks worth of work, he often caused \"a little
havoc\" on the workshop floor or in

the greenhouse.

Jim always knew that he was worth more and could contribute to his
community by engaging in real work. He always wanted a real job. It just
took a very long time for him to convince the system and those in
control that he deserved the opportunity. The first couple of community
jobs he had failed miserably. Jim has Tourette\'s syndrome, a condition
which causes him to have uncontrollable verbal and physical tics. These
tics are often exacerbated by quiet places and high demanding and
intense activities. His first community job was washing dishes and
busing tables in an executive suite in a prominent office complex. A
very quiet place\...for executives who conducted important business
meetings over lunch. Needless to say, an environment and people who
didn\'t take kindly to crashing dishes that were dropped when Jim had a
physical tic or to his verbal outbursts of profanity. He was fired
shortly after he started for things he couldn\'t control due to his
disability. His next job was at a manufacturing place where he was
expected to complete piece assembly at a rapid pace. He basically
didn\'t like this job and after the person who hired him left, again Jim
was fired.

He spent a few years back at the sheltered workshop after these
unsuccessful community jobs. Often not

getting out of bed in the mornings because he didn\'t want to go to work
and often getting in trouble

because of his \"poor work skills\" and \"lack of work ethic.\" Finally,
after he moved into a supported living arrangement, the people who knew
him well and cared about him listened and took action. A list of his
strengths, interests and already established community connections
resulted in him securing the perfect community job for him.

Jim has always loved loud music, lots of action and being the center of
attention. He prefers to sleep in the mornings and he likes to do things
that enable him to use his gross motors skills (e.g. walking, moving
around a lot). He is an excellent \"tattle tale\" when he sees people
doing things they shouldn\'t (in particular his roommate which causes
him a lot of grief), loves his niece and nephew and he enjoys
roller-skating several times a week in his leisure time. He interviewed
at a pre-school for children with attention deficit disorder but turned
down a job offer because he thought it was too quiet in the room and was
afraid that the kid\'s parents might not appreciate his verbal tics.
Then a staff person suggested to the employment specialist they might
see if the roller-skating rink Jim frequented had any openings. Sure
enough they did. Jim was offered a part-time job working as a floor
guard and as the Skatasaurous Rex.

He gets to roller-skate as much as he wants, is the center of attention
as the Skatasaurous Rex on the dance floor for children\'s parties and
gets paid a decent wage for all of it.

Yes, it is the perfect job for Jim and everyone who cares about and
loves him is thrilled that he has it. Jim is beyond thrilled. However,
the sad reality is that Jim has always had these same strengths and

interests\...it just took 15 years for people to really rally behind
him, listen and support him in realizing his dreams!

## Looking to the Future 

While much has been accomplished through the supported employment
movement there are some

troublesome trends that have emerged particularly since the early
1990\'s. Some of these include the

following:

-   Segregated employment is still growing, suggesting that integrated
    employment has become viewed as one option available for employment
    rather than an achievable goal for every person with a disability.

-   Nationally most of Federal and State funds (80-90%) used by agencies
    that provide supports to people with mental
    retardation/developmental disabilities still goes to pay for
    segregated employment in day activity centers and sheltered
    workshops.

Some additional barriers or concerns about the move to integrated
employment which have been identified include the following:

-   Federal mandates like those found in the Rehabilitation Act give a
    mixed message about supported employment by presuming employability
    but not funding extended follow-along and proactive service planning
    necessary to make supported employment successful for all people
    with disabilities. Many agencies which do provide proactive and
    long-term services do so without being fairly reimbursed.

-   For some people full-time employment is not feasible or desirable
    (for example, older people at retirement age or people who have a
    number of medical conditions that make extended activity difficult
    or uncomfortable).

-   In some cases \"integration\" has meant people working in the same
    building or even room but having very little contact or interaction
    with other employees. This may increase their risk of isolation if
    they have no peer relationships at all.

-   Average monthly wages, while far superior to those earned in
    segregated settings, average under \$400.00 per month. This is still
    far below the poverty level.

There are still financial disincentives to full inclusion in integrated
settings for all people. For instance,

parents and consumers of services may hesitate to try supported
employment because if the employment

situation is not successful they feel it will be difficult to reinstate
public aid money when looking for a new job or employment opportunity.

Agencies which support people with developmental disabilities tend to be
very compartmentalized.

Vocational support agencies typically provide supports during daytime
hours Monday through Friday.

Residential supports are usually only available at complimentary hours
to those traditional work times. As people\'s preferred lifestyles are
taken into account this structure will have to be more flexible. For
instance one man with a developmental disability was told at his most
recent annual meeting that the job he desired could not be obtained even
though he appeared to have all the necessary skills to get and maintain
employment (in this case he wanted to buff floors with a buffing
machine). The reason had nothing to do with his skills or abilities but
the fact that there was no job coach available after 5 p.m. to provide
support. His residential provider also had to discourage a night job
because of the difficulty in staffing his home facility 24 hours a day.

Overall, great strides have been made in supported employment
opportunities for people with mental

retardation and other developmental disabilities in the last 10-15
years. But there is still much work to be

done. As with all services to people with disabilities there needs to be
a continued focus on greater

opportunities for integrated employment for all people regardless of
ability level. This will mean continued systems change and a sustained
ability to provide individualized supports on the part of all
participating agencies.

Initiatives like the Social Security work incentives should be expanded
and strengthened to allow people to have an extended trial time at a new
job before losing cash benefits or to allow for the maintenance of
Medicaid coverage when income levels become too high to keep cash
benefits. Like all people, people with mental retardation may have times
in their lives when they do not have stable employment for a variety of
reasons. If they need or want to change jobs, a safety net of easily
accessible assistance money

and guarantees of employment support could make them feel more confident
in trying integrated

employment options.

Agencies which provide supports will need continued technical assistance
and seed money to redesign

services that fit individual needs. In order to make these changes
financially viable and to create an

environment which is open to people with disabilities in the work force
an increased dependence on natural supports is necessary. For instance
people\'s families and friends need to be active in checking their
connections for possible employment just as they would for a family
member or friend without disabilities. More emphasis on tapping into the
community\'s capacity to adapt training for people with disabilities
when they are employed is needed rather than having training filtered
through a job coach. People with disabilities need opportunities and
training on how to foster relationships and network, and the system
needs to increase it\'s tolerance for job shifting as people begin to
build careers rather than just taking jobs. These changes require a
tolerance for change and the natural tension that comes from providing
person-centered rather than system-centered supports. But with continued
creativity and effort, integrated employment can be a reality for all
people with mental retardation who desire it.

## Playtime: Recreation and Leisure Opportunities 

After the work is done it\'s time to play, or at least relax. Since the
beginning of this century there has been an interest in providing
recreational opportunities for people with mental retardation and
related

disabilities. These opportunities have generally been organized as
separate activities where all the

participants have some form of disability (segregated options). More
recently efforts have been underway to open generic (those available to
all community members) recreational opportunity to people with
disabilities providing an integrated environment where people with
disabilities are just one of many people participating (for example,
YMCA programs, community centers, etc.).

Recreation and leisure is an area that has certainly not gotten the
attention it deserves. Outside of work or

school, organized recreational activity is one of the best ways to
develop and maintain relationships, an

area that is severely lacking for many people with mental retardation.
In fact for people with mental

retardation who live in group homes and work in segregated environments
(or attend segregated classes),

integrated recreational and leisure activities may be one of the few
opportunities they have to spend time

with peers of the same age who don\'t have disabilities.

Like many areas of support to people with mental retardation, the area
of recreational supports has seen

changes in the last 10-20 years. The initial push in recreational and
leisure services recognized the need for people with disabilities to
participate in fun activities. Now there is an increased emphasis on
using

recreational activities as a way to promote social connections between
people with and without disabilities, and in recognizing the need for
people, regardless of their abilities, to have a full range of access to
generic community services including areas of recreation (e.g. health
clubs, summer camp, public beaches, swimming lessons, local drama clubs,
gymnastics).

Legislation such as the Individuals with Disabilities Education Act
(IDEA), the Rehabilitation Act, and the Americans with Disabilities Act
(ADA) have opened more opportunities for inclusive recreation. The ADA
and the Rehabilitation Act have mandated making buildings and public
transportation reasonably

accessible and prohibited programs which accept federal funds (or other
local tax dollars in the case of the ADA) from excluding people with
disabilities. The ADA specifically states that separate but equal
facilities and programs are discriminatory and requires that
recreational services be provided in the most integrated setting
possible. Outside of these direct mandates, concepts like the Least
Restrictive Environment (LRE) clause of IDEA have set the tone for
providing recreational supports in typical settings using generic
community facilities and programs whenever possible.

## Barriers to Integrated Recreation 

Despite the legislative progress many of the recreational programs which
are available to people with

mental retardation and related disabilities continue to be segregated.
There remain a large number of

attitudinal (prejudice, over-protectiveness), and physical barriers
(inaccessible facilities, lack of assistive

technology, lack of transportation, etc.) to inclusion in a full range
of recreational opportunities.

For most people with mental retardation, recreational time is spent in
the company of others with disabilities or when \"integration\" does
occur, it could be defined as doing the same activity as others but not
interacting with them (such as, \"special\" campers in a separate
building and enjoying similar activities but not with peers who do not
have disabilities). Too often opportunities for recreation revolve
around which segregated program is available or activities which are of
interest to support people with disabilities. For school-age children
this can mean missing out on the majority of fun and challenging
extra-curricular activities like sports teams, cheer-leading squads, and
student government.

In most States, recent years have brought supports to people with mental
retardation into the community. Part of that vision was that people
living in homes in their own communities would also use the same generic
resources as their neighbors and peers without disabilities. This
presence in the community would then lead to full integration into
society as people became known by their local businesses and
neighborhoods.

To some extent this has come true. It is common for people who live in
small community homes to go to the same local mall (restaurant, movie
theater, bowling alley, etc.) that others in the community use or to be
employed at the local grocery store or fast food restaurant. What is
less common is the participation in

structured integrated recreational activities such as softball leagues,
folk dance clubs, or mall-walking

groups. For children, attending community schools often still means
segregated classrooms and

transportation and few if any opportunities to participate in integrated
after-school or summer break

activities.

Sometimes recreational options are selected or eliminated based on what
the staff or other support people

find preferable. In group homes even simple things like having friends
over to visit requires approval of the staff on duty. The less the
person with mental retardation is able to express themselves the more
likely it is that they will participate in staff-initiated activities
designed to get them out but not necessarily based on their own
preference.

In addition to limitations in what types of recreational activities
people are using, there are other barriers in the way people with
disabilities are participating in recreational activities. For instance,
people who live alone in their own apartments or homes with minimal paid
supports may lack the initiative, money, or companionship which makes
using recreational options possible, or they may not have enough paid or

natural supports to help them. Most often support is provided in those
life skills deemed \"most important\" (i.e. financial, medical, or
general home living such as shopping, cleaning etc.).

In many group homes it is standard practice to take people out in groups
of two, three, or more people with disabilities and one or more
accompanying paid support staff. While the intention of this group use
of a community resource is to provide more people with more recreational
opportunities, often the quality of the activity is decreased in terms
of making real connections with others. In these large group activities,
people with disabilities are more likely to be noticed as \"a group with
disabilities\" rather than as unique individuals. Other members of the
community are less likely to directly relate to them and paid support
people are more likely to orchestrate interactions with other people
(for instance ordering all the food for everyone at a fast food
restaurant).

The experience is similar with segregated recreational programs
(community dances, day camps, softball

teams, etc.) that use generic facilities. Regardless of the quality of
the program, the participants are often

most notable for the fact that they have disabilities. It is unlikely
that the couple without disabilities looking for a drink and some music
at the local dance hall is going to be comfortable staying if they walk
in on 20 or 30 people with disabilities dancing and drinking. For people
with mental retardation who want to get out and participate in a variety
of activities, waiting for the monthly segregated dance is hardly a full
menu of options.

For children whose only option is segregated recreation there are a
number of limits and concerns as well. For instance because of the small
number of children who would use segregated activities they are often
scheduled infrequently, may be of great distance from the child\'s home,
and may combine children from a wide variety of ages. Parents may be
concerned about having their child participate in activities with much
older or younger children. The inconvenience of having to get a child
across town may make it impossible to use the programs that do exist.

For all children, active, less structured time with peers is where the
real lessons of life occur. Having a

tantrum around a group of friends usually doesn\'t get the same kind of
attention as having a tantrum around mom and dad. What happens when you
hit a friend? What toys are the coolest and what TV shows do you just
have to watch? Children who only participate in activities with other
children who have disabilities miss out on the necessary development of
appropriate interactions with peers.

The affect of paid staff on recreational opportunities can be powerful
as well. In group homes there are

staff-to-consumer ratios which have to be met, meaning either some
people go places they don\'t really care for or they miss out on
activities that don\'t meet with the majority\'s approval. In individual
placements staff time is at a premium and recreational opportunities
aren\'t always given priority. For many agencies the bottom line of
paying staff salaries is a limitation. Often the times in which people
can participate in recreational activities is limited by the staffing
patterns available where they live. On any night of the week, all around
the nation people with mental retardation are expected to leave in the
middle of ball-games, movies, and musicals because a staff person isn\'t
scheduled to stay past a certain hour and can\'t be paid overtime wages.

Why have these barriers to inclusive recreation continued in the face of
legislative support and the push for inclusion in residential,
vocational and educational areas? The following are just some of the
reasons why this is so:

-   Generic community programs do not have enough information on what
    types of accommodation are needed for people with cognitive
    impairments, they may be afraid of additional liabilities or cost
    associated with making their programs more open.

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-   Segregated programs may currently be the only programs reasonably
    available to people with disabilities who need a number of
    accommodations, and some people feel that segregated programs offer
    participants special services they can\'t get elsewhere or that they
    offer respite from competition with people of greater abilities.

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-   Consumers with mental retardation, their parents, and other support
    people may be unsure about how to proceed in overcoming barriers to
    inclusive recreation. They may not have the time or know how to
    effectively advocate for change.

Facilitating inclusion and integration, especially with a focus on
relationship building and community

connections requires a high level of sophistication on the part of
support people. Simply putting people

together is not always enough and may actually be detrimental if it
serves to reinforce rather than break-

down stereotypes. There is very little systematic attempt to provide
support people and generic providers

with the training and resources they need.

## Strategies for Support and Inclusion 

For people with mental retardation and their advocates, there are two
areas of primary importance in the area of recreation and leisure that
currently stand out.

-   Making generic recreational and leisure sources accessible to people
    of all abilities by eliminating physical and attitudinal barriers.

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-   Developing strategies for using those activities as opportunities to
    build connections with the community through the development of
    friendships and through the general presence of those with
    disabilities.

A number of studies have looked at ways to promote inclusive recreation
and community options and

overcome barriers (both the physical and attitudinal). Strategies that
are useful in helping individuals to

pursue integrated recreational activities include the following:

-   *Start with the individual.* This is a critical piece. It makes the
    activity meaningful and increases the likelihood of success.
    Thoroughly explore the person\'s interests and current abilities.
    Think about what gives the person pleasure and what activities have
    or have not been successful in the past. Sample or view different
    activities if a person lacks the experience to know what is
    available. Think about the skills the person already possesses that
    can be built on. Let the person make the final choice about what
    activities they will or will not participate in.

> If they do not have a choice the activity stops being a leisure
> activity since the purpose of leisure is to enjoy oneself.

-   *Select an activity.* Match the person\'s interests and skills with
    an activity. Try to find activities that match social norms for a
    person of that age, gender, and cultural or ethnic background. It\'s
    not uncommon for paid staff to be a different age, gender, or race
    from the people they are supporting. This means that many people who
    rely on paid support staff participate in activities very different
    from their peer groups. Seek help from others if necessary to
    identify which activities might be appropriate and enjoyable.

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-   *Explore the activity and setting*. Are there things that will be
    barriers to this activity (e.g. accessible building, transportation,
    materials in alternative forms, etc.)? Assess the demands of the
    activity in comparison to the skill levels of the potential
    participant. Develop solutions to address barriers and maximize
    participation. In some cases this may be dealing with the physical
    barriers by working with the recreational provider to make some
    changes. Or it may mean locating the proper assistive technology.
    Maybe it is providing education to the program director on
    strategies for including people of varying abilities.

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-   *Provide necessary supports*. Don\'t initiate the activity without
    building in the necessary supports to make it a success. Often there
    may be an initial investment of resources to get a person
    established in an area. If support people think proactively this
    original intensity may be lessened as the person gains confidence
    and skill and as natural supports take a larger role (i.e. perhaps a
    new friend will come pick the person up for the activity).

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-   *Establish goals for the participant*. (e.g. learn new skills, make
    a friend, improve mobility, increase self esteem). The goals help to
    maintain a focus for support people as to which areas they should
    devote their energies. Setting goals (which are identified by the
    person receiving supports) helps support people know if the process
    is working (i.e. if the person is learning how to play bridge better
    but their goal was to make a new friend, interventions and supports
    may need to be modified).

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-   *Monitor and evaluate progress*. Keep tabs on whether the activity
    is working for the person. Look at what can be improved and what is
    working well. This will help in future planning for further
    integrated activities.

The above list adapted from: \"Facilitating Integration in Recreation
Environments\" By S. Schleien, J.E. Rynders, & F. P. Green. Chapter in
Challenges for a Service System in Transition (1994) M.F. Hayden & B. H.
Abery (Eds.)

Besides just being able to access the community fully, people with
mental retardation and related

disabilities are very often socially isolated. People act differently in
the company of friends than they do in the company of paid staff,
parents, or teachers. There is no substitute for friendship, belonging,
and

intimate relationships. These types of relationships promote good health
and a sense of balance in life. If

friendship or connections to other community members is the primary goal
for involvement the following should be considered:

-   *Work with the person on an individual basis.* If roommates with
    disabilities want to go to the gym together and work out that\'s
    fine, but always going everywhere in a group with people who have
    similar disabilities serves to limit interaction and to stigmatize.

-   *Think of places the person can fit in \"as is.\"* While new skills
    may develop due to the activity, attempt to find a place where the
    person can fit in from the first day and where differences are
    minimized. For instance if a person wears a helmet for protection
    because of self-injurious behavior, think about activities where
    others wear helmets (e.g. football, biking, in-line skating).

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-   *Think of logical connections to people.* Support people can think
    about the people they know who have similar interests to the person
    and try connecting them with each other. Don\'t frame it as a
    volunteer situation but as bringing together two people who enjoy
    the same thing.

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-   *Be consistent.* Visit the same places (coffee shop, library, etc.)
    over and over. Let the persons face become familiar.

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-   *Look for activities that the person can contribute to.* For example
    church pot-luck, carrying the pompoms for the cheer-leading squad or
    equipment for a team.

-   *For children prepare or select activities that are cooperative in
    nature*. Cooperative activities have a high level of interdependence
    where cooperation, mutual support, and use of all types of abilities
    is required (baking activities, jumping rope). Preparing children
    without disabilities in advance in areas like how to deal with
    communication barriers, or the types of adaptive equipment their
    peer might use can be effective as long as similarities and
    capabilities are emphasized and the other children do not feel they
    are being put in a supervisory role with the child with
    disabilities.

The above list adapted from:. Making Friends: Using recreation
activities to promote friendships between children with and without
disabilities. (1993) by L. Heyne, S. Schleien, & L. McAvoy. Minneapolis
MN: Institute on Community Integration, University of Minnesota
(Distributor), and Friends: A Manual for Connecting Persons with
Disabilities and Community Members. (1990). by A.N. Amado, F .Conklin, &
J .Wells. St. Paul, Minnesota: Human Services Research and Development
Center.

People with mental retardation should have full access to public
recreational activities and shouldn\'t have

to wait until the \"special\" programs are offered. They need a chance
to challenge themselves by participating in activities with people of
varying abilities. Recreational opportunities can provide prime
opportunities to develop relationships with peers of differing abilities
based on a common

area of interest or skill.

Training for support personnel is critical. Integration without proper
preparation can actually back-fire and reinforce negative stereotypes.
Agencies that provide supports to people with mental retardation, school
systems, and their staffs are often the primary sources for creating
opportunities for inclusive recreation. They need training and technical
assistance on how to best use existing resources, how to foster real
friendships and community connections, how to fully use existing natural
supports (family, friends, generic resources).

Although the ideal is a fully inclusive community which provides access
to all areas, attempting to deal

with this problem by closing or not funding segregated recreational
activities and programs will not be met by great enthusiasm on the part
of people with mental retardation or their advocates. For many the
reality still is that in order to participate in many activities the
only current option is a segregated specially supported program.

Some ways to work on inclusion include the following:

-   Work with segregated and generic community settings/programs to
    think about how to broaden their scope and include people of varying
    abilities. Try integration both ways. Bringing people without
    disabilities into a segregated program as well as bringing people
    with disabilities into generic community activities.

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-   Challenge communities to build accessibility into their generic
    programs up front instead of after the fact. Studies have shown that
    integrating recreational opportunities after the fact, either by
    opening disability-only programs up to the general public or by
    trying to adapt the program created strictly for people with typical
    abilities to people with significant disabilities may produce less
    than satisfactory results and that headway is often temporary in
    nature. A better approach is to plan in advance when developing new
    programs. Just as architects are asked to plan and build structures
    that are accessible and welcoming to people with physical
    disabilities, the same attention needs to be brought into planning
    public recreational activities to be inclusive of people with
    cognitive impairments.

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-   Educate people on how to overcome barriers associated with
    transportation, facilities, finances, etc. Assist people in
    identifying fun, inexpensive activities in their communities.
    Provide generic facilities and city planners with information on how
    to make reasonable accommodations for people with mental retardation
    or other disabilities.

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-   Support and fund training and resource opportunities for both paid
    and unpaid support people (staff, teachers, parents/families, scout
    leaders, etc.) in the area of facilitating relationships with others
    in the community. Instead of seeing this as a secondary or
    specialized skill for paid support staff see it as a primary role.
    In order to make headway to inclusion we must have people who can
    think creatively, work independently, and facilitate opportunities
    and advocacy.

## Conclusion

People with mental retardation and related conditions live in a variety
of settings with a variety of supports available to them. While there is
no magic formula or funding service which guarantees a good quality of
life, they and their families have been asking for individualized,
flexible supports which nurture people\'s connections with their
families and preferred communities. They don\'t want to be shut away.
The past shows that when they are they have less fulfilling lives, lose
contact with natural support systems (family, friends, and neighbors),
and are more likely to be abused or neglected. People want to make
choices about how they spend their time and with whom.

As a nation we have made considerable steps in the right direction
toward providing people with

residential, vocational, and recreational options in their communities.
Many fantastic supports and

services exist. But, we have a long way to go. Do people really have the
power to control their own lives

(e.g. what they do in their free time, who their friends are, what they
eat for dinner, where they work and

live) or do they just live in different and smaller places? It is true
that more and more people with

mental retardation and other developmental disabilities are living in
their own homes that they own or

lease. However, it is also true that many people remain as \"guests\" or
\"residents\" where they live and are

subject to strict schedules, house rules, pre-determined menus,
roommates they may not like, restricted

access to phones and privacy, goal plans created by professionals, and
imposed values and attitudes from

paid support staff. More people are having the opportunity to work at
real, integrated jobs with real pay,

but many more continue to put in time at segregated workshops. Serious,
proactive planning needs to take place so that people with mental
retardation do not have to continue to wait to be full citizens in their
communities.

**Resources**

*Supporting People with Severe Reputations in the Community.* (1992). M.
Smull and S. Harrison. This handbook describes, through many practical
examples, methods of planning community living with people who have
histories of challenging those around them. Available from: the National
Association of State Directors of Developmental Disabilities Services,
113 Oronco St., Alexandria, VA 22314. (803) 683-4202.

*Patterns of Supported Living: A Resource Catalogue.* (1993)*.* B.
Allen, J. Shea, and C. Forrest for the California Department of
Developmental Services. This source book was developed to assist people
in understanding the principles and values underlying supported living
and some of the processes that have been developed to support
implementation. Available from Allen, Shea and Associates, 1040 Main
St., Suite 200B, Napa, CA 94559.

\(704\) 258-1326.

*National Home of Your Own Alliance.* For more information call
1-800-220-8770 or visit the Alliance\'s web site at
http://alliance.unh.edu.

*Christmas in Purgatory - A Photographic Essay on Mental Retardation* .
(1974). B. Blatt and F. Kaplan. This book of photographs depicts the
conditions of public institutions in the period just a few years after
deinstitutionalization began and major federal reforms were instituted.
Available from the Center on Human Policy, Syracuse University, 805 S.
Crouse Ave., Syracuse, NY 13244-2280. (315) 443-3851.

*Residential Services for Persons with Developmental Disabilities:
Status and Trends Through 1996* (Report 49). (1997). R.W. Prouty & K.C.
Lakin (Eds.). This report summarizes the status of residential services
in each state through June 30, 1996. Available at the Institute on
Community Integration, University of Minnesota, 109 Pattee Hall, 150
Pillsbury Dr. SE, Minneapolis, MN 55455. (612) 624-4512.

*Bibliography of Supported Employment.* (April 1993) Available from the
Employment Network, University of Oregon, 135 Education Bldg., Eugene,
OR 97403. (503) 686-5311

*President\'s Committee on Employment of People with Disabilities
Information Line*. 1331 F Street NW,

Washington, DC 20507. (800) 232-9675; (202) 376-6205 (TDD). Provides
information regarding

employment of people with disabilities and how to make job
accommodations.

*Supported Employment: A Step By Step Guide*. (1992). PACER center, Inc.
This book explains the adult service delivery system and how to get or
improve supported employment for an individual with developmental
disabilities, mental illness, traumatic brain injury or other
disabilities. Available from PACER Center, Inc. 4826 Chicago Ave. S.,
Minneapolis, MN 55417. (612) 827-2966.

*Social Security\'s Work Incentive Programs.* To find out about
eligibility and guidelines contact: Social Security

1-800-772-1213(V), 1-800-325-0778 (TTY) or visit the Social Security
website at: http://www.ssa.gov.

*The Association for Persons in Supported Employment.* It is a national
organization established to improve and expand integrated employment
opportunities and services for persons with severe disabilities. (804)
282-3655.

### Friendships and Community Connections Between People with and without Developmental Disabilities. 

(1993). A. Amado. A resource for supporting friendships and full
community participation through the use of natural social connections.
Paul H. Brookes Publishing Company, Baltimore, MD. 1-800-638-3775.

*Making Friends: Using Recreation Activities to Promote Friendship
Between Children with and without*

*Disabilities.* (1993). L. Heyne, S. Schleien, and L. McAvoy. A handbook
that assists parents, community recreation staff, and teachers to
support friendships between children with and without disabilities,
grades K-6. Available from the Institute on Community Integration,
University of Minnesota, MN 55455. (612) 624-4512.

*Interact Center for the Visual and Performing Arts.* For more
information and other opportunities in the Arts, refer to the IMPACT
Feature issue on Persons with Disabilities in the Arts (Winter 1997)
Available at the Institute on Community Integration, University of
Minnesota, 109 Pattee Hall, 150 Pillsbury Dr. SE, Minneapolis, MN 55455.
(612) 624-4512.

*Project TRAIL Publications.* A number of publications are available,
including 'Leisure Education Self-

Contained Instructional Packages for People with Cognitive Impairments',
a manual for use in creating

educational board games that can be used with persons with developmental
disabilities in leisure education programs; 'Community Support Through
Leisure Coaching', a guide to ways that family and friends and community
volunteers can assist a person with developmental disabilities in
leisure pursuits; and publications on how to develop detailed leisure
education curriculum for persons with developmental disabilities.
Available from Project TRAIL, The University of Georgia, Athens, GA.
(706) 542-5064.

Check out these websites and link to other disability related sites:

http://www.napanet.net/business/personal/ASA/articles.html

http://TheArc.org/faqs/leisure.html

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Amado, A.N., (Ed).(1993). Friendships and Community Connection Between
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Blatt, B. & Kaplan, F. (1974). Christmas in Purgatory - A Photographic
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Fesko, S.,L., & Temelini, D. (1997). What consumers and staff tell us
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Trends Through 1997. Alexandria, VA: National Association of State
Directors of Developmental Disabilities Services, Inc.

Taylor, S.J. (1992). \"The paradox of regulations: A commentary.\"
Mental Retardation, 30, 3, 185-190.

Thompson, S., Sinclair, M.F. & Johnson, D. (1990). IMPACT: Feature Issue
on Transition Vol. 3(3). Minneapolis, MN: Institute on Community
Integration, University of Minnesota.

Walker, P., Shoultz, B. (ND). Community Integration Report: Supporting
Children and Youth with Disabilities in Integrated Recreation and
Leisure Activities. Syracuse, NY: Center on Human Policy.

Wallace, T., Erickson, R., & Johnson, D.R. (Eds). (1993). IMPACT:
Feature Issue on Employment Vol. 6(3). Minneapolis, MN: Institute on
Community Integration, University of Minnesota.

Wallace, T., Thompson, S. & Johnson, D. (1992). IMPACT: Feature Issue on
Transition Vol. 5(3). Minneapolis, MN: Institute on Community
Integration, University of Minnesota.

**Glossary**

**Action Plan:** One of many terms being used for creating a plan for
people receiving services that is based on their abilities, strengths
and personal desires or goals. These plans are created by support teams
or circles of support (the people who know the person best and who the
person would like to have participate in planning), and professionals
who are only invited at the request of the rest of the support team.
Action plans are more and more being used to replace previous deficit
based planning (see IEP/IPP/IHP/ISP).

**Case management or care coordination:** A system in which a single
professional is responsible for

ensuring that a recipient obtains the full range of services required.

**Community integration:** A concept that reflects the practice of
sharing in community life, involving at

least these four aspects: (a) physical integration where the individual
actually lives in the community, (b) cultural integration where the
individual exhibits locally valued lifestyles and roles, (c) integration
where the individual enjoys reciprocal relationships with others in the
community, and (d) self-determination (see definition of this term
below).

**Competitive Employment:** Typical employment in which a person is
placed in a job and requires no

additional support or supervision other than that which is typically
provided by that employer.

**Consumer:** A term often used to describe a person with a
developmental disability who receives some

type of services from a government or private agency. A consumer of
services. This term is used in place of client to put the emphasis on
the person as someone who uses services rather than someone who has a
problem which needs professional help.

**Decentralized:** Spread out, not in one place. Residential services
for people with developmental

disabilities has become more decentralized since institutions have been
replaced by many small group

homes. This trend toward decentralization will continue as more people
are supported in their own homes and with individual vocational
supports.

**Demographics:** Percentages and real numbers that are useful in
describing populations and understanding trends. For example, the
percentage of people with disabilities between the ages of 25-40 who are
employed full-time compared to the percentage of people without
disabilities between the ages of 25-40 who are employed full-time.

**Direct Service (Support) Work force:** The collective group of paid
Direct Support Professionals working throughout the United States or
within any given State, region or local entity.

**Direct Support (Service) Professional (Worker or Staff):** An
individual who may or may not be paid

who assists individuals with developmental disabilities to lead
self-directed lives and to contribute to their communities; and
encourages attitudes and behaviors that enhance inclusion in their
communities. DSPs provide supports in a variety of settings to people
with a variety of types of disabilities.

**Enclave:** A type of supported employment option where groups of
people with similar disabilities work

together in a community setting. These groups typically vary in size
from 2-15 people. This type of

supported employment is advantageous for people who may not be able to
work consistently enough to

maintain a daily job. The disadvantages are that the group situation
makes social contact with workers

without disabilities less likely and that the person will be seen as one
of \"those\" workers with disabilities.

**Generalization:** Being able to apply a skill or knowledge to
different situations. Many people with mental retardation have
difficulty with generalization. This means the best place for them to
learn a skill is in the place they will use the skills, for instance
being trained in job tasks at the actual job or learning home-making
skills in their own homes.

**Generic:** As in generic community resources. Public resources
available to all people regardless of ability such as parks, swimming
classes at the local YMCA, or professionals like doctors/dentists.

**Group Home:** A typical home in the community which has one or more
people with disabilities living in it and receiving services. These
homes can range in size from 2 to 15 people and can be publicly or

privately owned and operated.

**Home and Community Based Services:** A variety of services which are
funded through the Federal

Medicaid Home and Community Services Based Waiver program. HCBS unlike
ICF/MR funding is a less regulated and more flexible pot of money which
can help fund services provided in a number of settings including small
agency run group homes, family homes, and a person\'s own home or
apartment.

**IEP/IPP/IHP/ISP:** Individual Educational/Program/Habilitation/Service
Plan. Individualized plans for a person receiving services which
includes goals to be achieved in an upcoming time frame (usually 1
year). Traditionally these plans have been developed by teams of
professionals with some input from family members and the individual
receiving services. Goals focus on improving in areas where a person has
a weakness.

**In-home services:** Services provided in a person\'s home.

**Institution:** Large public or private residential program in which 16
or more people with mental

retardation and other developmental disabilities live. Institutions are
most often part of State-run hospitals and usually comply with the
Intermediate Care Facility (ICF/MR) standards set by the Federal
government. Institutions were once the only place where people with
mental retardation could receive residential supports, they are now the
place of last resort for residential placement.

**Integrated:** A setting where people of all abilities and backgrounds
work, live, or play together.

**Intermediate Care Facilities for Persons with Mental Retardation
(ICF/MR):** The first Federal

program targeted to residential services for people with mental
retardation. The size of ICFs/MR

range from 6 people living in a community home to several hundred living
in a large congregate setting

(including units in state institutions). These programs require 24 hour
supervision of the people who live

in them.

**Long term services and supports:** Supervision or assistance given to
a person with disabilities to help the individual complete daily living
activities (e.g., eating, dressing, bathing, communicating, keeping a
job, taking prescribed medications), learn new skills, maintain a
general sense of safety and well-being, or otherwise pursue a normal
daily life rhythm. Such assistance typically excludes medical
interventions due to injury or illness.

**Managed care:** Various strategies that seek to maximize the value of
services by controlling their cost and use, promoting their quality, and
measure performance to ensure cost effectiveness.

**Natural Supports:** Supports which naturally occur in all people\'s
lives. Some examples include, a friend

who helps paint your house, a neighbor who picks up your mail when you
are out of town, a coworker who picks up your paycheck when you are
sick, a family member who introduces you to a potential new employer.

**Outcome:** The benefit of services or supports.

**Personal assistance:** One person assisting another with tasks
individuals normally would perform for

themselves if they did not have a disability.

**Qualified Mental Retardation Professional (QMRP):** A person with a
four year degree in a human

services field and a minimum of 2 years experience working with people
who have mental retardation or

related conditions. The ICF/MR regulations require that a QMRP review
and approve any program

developed for people receiving services.

**Segregated:** An environment where only people with a certain label or
defining characteristic work, live, or play.

**Semi-independent Living Services (SLS):** A program for people with
mental retardation who have low

support needs and live for the most part independently with a few hours
of services each week from paid

staff.

**Sheltered work:** A work setting in which only people with mental
retardation and other disabilities work.

**Supported employment:** Describes services to help individuals with
disabilities to find and keep a paid job in a regular community business
(not counting employment in sheltered workshops or similar service
environments). Paid staff can: (a) work with the individual to determine
the type of job preferred, (b) find appropriate employment, (c) work
with the employer to modify the job, apply assistive technology, or
otherwise assure that the individual can perform the job, (d) provide
support to the individual on the job or to his or her coworkers, and (e)
monitor quality and provide support as needed.

**Supported living:** A residential service model which is based on the
provision of only those supports

which the person needs-tailoring services to meet individual needs.

## Common Acronyms

The field of services to people with mental retardation and other
related developmental disabilities uses literally hundreds of acronyms.
While they can be useful for brevity, common courtesy requires that
assumptions are not made while speaking, presenting, or writing. A term
should always be defined the first time it is used and more frequently
if the information is intended for people who are not professionals in
the field. The following are just a few of some of the most common
acronyms used:

**AAMR** - American Association on Mental Retardation (formerly Mental
Deficiency)

AAUAP - The American Association of University Affiliated Programs for
Persons with

Developmental Disabilities

**ADA** - Americans with Disabilities Act

**ADD** - Administration on Developmental Disabilities (Washington, DC)

**AFDC** - Aid to Families with Dependent Children

**ARC** - Association for Retarded Citizens

**ASO** - Administrative Service Organization

**BIA** - Bureau of Indian Affairs

**CAP** - Community Action Program, or Client Assistance Program

**CEC** - Council for Exceptional Children

**COBRA** - Consolidated Omnibus Budget Reconciliation Act

**COLA** - Cost of Living Allowances

**CP** - Cerebral Palsy

**CSLA** -- Community Supported Living Arrangement

**DAC** - Developmental Achievement Center

**DD** - Developmental Disabilities

**DHHS** - Department of Health and Human Services (Washington, DC)

**DHS**- Department of Human Services

**DRS** - Division for Rehabilitative Services (federal level); Division
for Rehabilitation Services (state level)

**DSP/W**- Direct Support Professional or Direct Service (or Support)
Worker

**E/BD** - Emotional/Behavior Disorders

**ECFE** - Early Childhood Family Education

**ED** - Emotionally Disturbed

**EEOC** - Equal Employment Opportunity Commission

**ELP** - Essential Lifestyle Plan

**EMH/R** - Educable Mentally Handicapped or Educable Mentally Retarded

**EPS** - Early and Periodic Screening

**FAPE** - Free Appropriate Public Education

**FAS** -- Fetal Alcohol Syndrome

**FERPA** - Family Education Rights and Privacy Act

**FY** - Fiscal/Budget Year

**GAO** - General Accounting Office

**HCBS** - Home and Community Based Services

**HCFA** - (Federal) Health Care Financing Administration

**HCPA** - Handicapped Children\'s Protection Act

**HMO** - Health Maintenance Organization

**ICAP**-Instrument for Clients and Agency Planning

**ICF/MR or ICFs/MR** - Intermediate Care Facility or Facilities for
Persons with Mental Retardation

**IDEA**- Individuals with Disabilities Education Act

**IEP/IFSP/IHP/IJP/IPP/ISP/ITP** - Individual Education
Plan/Individualized Family Service Plan/ Individualized Habilitation
Plan/ Individual Justice Plan/Individual Program Plan/Individual Service
Plan/Individual Transition Plan

**IQ**- Intelligence Quotient

**LEA** - Local Education Agency

**LRE** - Least Restrictive Environment

**LTC** - Long Term Care

**MA** - Medical Assistance

**MH** - Mental Health or Mentally Handicapped

**MI** - Mental Illness

**MR/RC**- Mental Retardation and Related Conditions

**NASDSE** - National Association of State Directors of Special
Education

**NASDDD** - National Association of State Directors of Developmental
Disabilities

**NIDRR** - National Institute on Disability and Rehabilitation Research

**OASDI** - Old-Age, Survivors and Disability Insurance (also RSDI)

**OSERS** -- Office of Special Education and Rehabilitation Services

**OT** - Occupational Therapist

**P&A** - Protection and Advocacy (System)

**PASS** - Plan for Achieving Self-Support, Social Security
Administration, or Program Analysis of Service Systems

**PCA** - Personal Care Attendant

**PCEPD** - President\'s Committee on Employment of People with
Disabilities (formerly PCEH)

**PCMR** - President\'s Committee on Mental Retardation

**PCP**- Person-Centered Planning

**PFP** - Personal Futures Planning

**PKU** - Phenylketonuria

**PL** - Public Law

**PT** - Physical Therapist

**QA** - Quality Assurance, or QE - Quality Enhancement

**QMRP** - Qualified Mental Retardation Professional

**RFP** - Request for Proposal

**RRTC** - Rehabilitation Research and Training Center

**RSA** - Rehabilitation Services Administration

**SABE-** Self-Advocates Being Empowered

**SE** - Special Education or, Supported Employment

**SILS** - Semi-Independent Living Services

**SLA** - Supported Living Arrangements

**SLF/SLS** - Supervised Living Facilities/ Supervised Living Services

**SNF** - Skilled Nursing Facility

**SSA** - Social Security Administration

**SSDI** - Social Security Disability Insurance

**SSI** - Supplemental Security Income

**STWO** - School-to-Work Opportunities Act

**TASH** - The Association for Persons with Severe Handicaps

**TDD** - Telecommunications Devices for the Deaf

**VR** - Vocational Rehabilitation

**WAC** - Work Activity Center

**PCMR CITIZEN AND EX-OFFICIO MEMBERS**

Valerie J. Bradley

Chair, President's Committee on Mental Retardation

Washington, D.C.

+-----------------------------------+----------------------------------+
| **Lorenzo H. Aguilar-Melancon**   | **Valerie J. Bradley**           |
|                                   |                                  |
| President                         | President                        |
|                                   |                                  |
| Perspectiva                       | Human Services Research          |
|                                   | Institute                        |
| 7380 Remcon Circle                |                                  |
|                                   | 2336 Massachusetts Avenue        |
| El Paso, Texas 79912              |                                  |
|                                   | Cambridge, Massachusetts 02140   |
| Phone: 915-833-2488               |                                  |
|                                   | Phone: 617-876-0426              |
| FAX: 915-833-3424                 |                                  |
|                                   | FAX: 617-492-7401                |
|                                   |                                  |
|                                   | E-Mail: valbrad@aol.com          |
+-----------------------------------+----------------------------------+
| **Jane L. Browning**              | **Robert D. Dinerstein, J.D.**   |
|                                   |                                  |
| Director                          | Associate Dean for Academic      |
|                                   | Affairs                          |
| Division of Membership Services   |                                  |
|                                   | Washington College of Law        |
| and Publications                  |                                  |
|                                   | at American University           |
| National Association of Social    |                                  |
| Workers                           | 4801 Massachusetts Avenue, N.W.  |
|                                   |                                  |
| 750 First Street, N.E., Suite 700 | Washington, D.C. 20016           |
|                                   |                                  |
| Washington, D.C. 20002-4241       | Phone: 202-274-4141              |
|                                   |                                  |
| Phone: 202-336-8214               | FAX: 202-274-4015                |
|                                   |                                  |
| 1-800-638-8799, ext.\` 214        | E-Mail: rdiners@wcl.american.edu |
|                                   |                                  |
| FAX: 202-336-8312                 |                                  |
|                                   |                                  |
| E-Mail: jbrownin@naswdc.org       |                                  |
+-----------------------------------+----------------------------------+
| **Ann M. Forts**                  | **Arthur M. Hamilton**           |
|                                   |                                  |
| P.O. Box 644                      | Minority Leader                  |
|                                   |                                  |
| Center Harbor, New Hampshire      | Arizona House of Representatives |
| 03226                             |                                  |
|                                   | 1700 West Washington             |
| Home: 603-253-6721                |                                  |
|                                   | Phoenix, Arizona 85007           |
| FAX: 603-279-4582                 |                                  |
|                                   | Phone: 602-542-3912              |
|                                   |                                  |
|                                   | FAX: 602-542-4308                |
+-----------------------------------+----------------------------------+
| **Sally A. Jochum**               | **Joyce A. Keller**              |
|                                   |                                  |
| Johnson County Developmental      | Executive Director               |
| Supports                          |                                  |
|                                   | JARC                             |
| 10501 Lackman Road                |                                  |
|                                   | 28366 Franklin Road              |
| Lenexa, Kansas 66219              |                                  |
|                                   | Southfield, Michigan 48034       |
| Phone: 913-492-6161, ext. 425     |                                  |
|                                   | Phone: 810-352-5272              |
| FAX: 913-492-5171                 |                                  |
|                                   | FAX: 810-352-5279                |
| E-Mail: sally.jochum@jocks.com    |                                  |
+-----------------------------------+----------------------------------+
| **John F. Kennedy, J.D.**         | **K. Charlie Lakin, Ph.D.**      |
|                                   |                                  |
| President                         | Director                         |
|                                   |                                  |
| Reaching Up, Inc.                 | Rehabilitation Research and      |
|                                   | Training Center                  |
| 434 East 52nd Street              |                                  |
|                                   | on Community Living              |
| Suite 1E                          |                                  |
|                                   | University of Minnesota          |
| New York, New York 10022          |                                  |
|                                   | 214 Pattee Hall, 150 Pillsbury   |
| Phone: 212-754-6750               | Drive                            |
|                                   |                                  |
| FAX: 212-754-0203                 | Minneapolis, Minnesota 55455     |
|                                   |                                  |
|                                   | Phone: 612-624-5005              |
|                                   |                                  |
|                                   | FAX: 612-625-6619                |
+-----------------------------------+----------------------------------+
| **Ruth Luckasson, J.D.**          | **T.J. Monroe**                  |
|                                   |                                  |
| Regents Professor and Professor   | Disability Rights Consultant     |
| of Special                        |                                  |
|                                   | 1156 Waycross Road               |
| Education, College of Education   |                                  |
|                                   | Apt. A109                        |
| University of New Mexico          |                                  |
|                                   | Cincinnati, Ohio 45240           |
| Albuquerque, New Mexico 87131     |                                  |
|                                   | Phone: 513-825-5771              |
| Phone: 505-277-7231               |                                  |
|                                   |                                  |
| FAX: 505-277-8360                 |                                  |
|                                   |                                  |
| E-Mail: ruthl@unm.edu             |                                  |
+-----------------------------------+----------------------------------+
| **Donna Nigh**                    | **Elizabeth C. Pittinger**       |
|                                   |                                  |
| 3009 Hackberry                    | 1101 Virginia Avenue             |
|                                   |                                  |
| Oklahoma City, Oklahoma 73120     | Pittsburgh, Pennsylvania 15211   |
|                                   |                                  |
| Phone: 405-751-7708               | Phone: 412-381-1578              |
|                                   |                                  |
|                                   | FAX: 412-381-1745                |
|                                   |                                  |
|                                   | E-Mail: ecpitt@aol.              |
+-----------------------------------+----------------------------------+
| **Michael L. Remus**              | **Tom E.C. Smith, Ed.D.**        |
|                                   |                                  |
| Executive Director                | Professor and Associate Dean     |
|                                   |                                  |
| The Arc of Tennessee              | College of Education, ED100      |
|                                   |                                  |
| 1719 West End Avenue, Suite 300E  | University of Arkansas at Little |
|                                   | Rock                             |
| Nashville, Tennessee 37203        |                                  |
|                                   | Little Rock, Arkansas 72204      |
| Phone: 615-327-0294               |                                  |
|                                   | Phone: 501-569-3016              |
| FAX: 615-327-0827                 |                                  |
|                                   | FAX: 501-569-8694                |
|                                   |                                  |
|                                   | E-Mail: tesmith@ualr.edu         |
+-----------------------------------+----------------------------------+
| **Deborah M. Spitalnik, Ph.D.**   | **Cathy Ficker Terrill**         |
|                                   |                                  |
| Executive Director                | Ray Graham Association           |
|                                   |                                  |
| University Affiliated Programs of | 2801 Finley Road                 |
| New Jersey                        |                                  |
|                                   | Downers Grove, Illinois 60515    |
| Brookwood II - 2nd Floor          |                                  |
|                                   | Phone: 630-620-2222              |
| 45 Knightsbridge Road, P.O. Box   |                                  |
| 6810                              | FAX: 630-628-2350                |
|                                   |                                  |
| Piscataway, New Jersey 08855-6810 | E-Mail: cfterrill@aol.com        |
|                                   |                                  |
| Phone: 732-235-4447               |                                  |
|                                   |                                  |
| FAX: 732-235-5059,                |                                  |
|                                   |                                  |
| E-Mail: spitalde@umdnj.edu        |                                  |
+-----------------------------------+----------------------------------+
| **Jacquelyn B. Victorian, MSW**   | **Barbara Yoshioka Wheeler,      |
|                                   | Ph.D**                           |
| Executive Director                |                                  |
|                                   | Associate Professor of Clinical  |
| Independent Living, Inc.          | Pediatrics                       |
|                                   |                                  |
| 474 North Foster Drive            | University Affiliated Program,   |
|                                   | Mailstop #53                     |
| Baton Rouge, Louisiana 70806      |                                  |
|                                   | Children's Hospital of Los       |
| Phone: 504-924-7998               | Angeles                          |
|                                   |                                  |
| FAX: 504-924-7715                 | P.O. Box 54700                   |
|                                   |                                  |
|                                   | Los Angeles, California          |
|                                   | 90054-0700                       |
|                                   |                                  |
|                                   | Phone: 213-669-2300              |
|                                   |                                  |
|                                   | FAX: 213-953-0439                |
|                                   |                                  |
|                                   | E-Mail:                          |
|                                   | bwheeler%smtpgate@chlais.usc.edu |
+-----------------------------------+----------------------------------+
| **Sheryl White-Scott, M.D.**      | **\*The Honorable Donna E.       |
|                                   | Shalala**                        |
| Director, Adult Health Services   |                                  |
|                                   | Secretary of Health and Human    |
| Westchester Institute for Human   | Services                         |
| Development                       |                                  |
|                                   | U.S. Department of Health and    |
| 221 Cedarwood Hall                | Human Services (DHHS)            |
|                                   |                                  |
| Valhalla, New York 10595-1689     | 200 Independence Avenue, S.W.    |
|                                   |                                  |
| Phone: 914-493-8714               | Washington, D.C. 20201           |
|                                   |                                  |
| FAX: 914-493-1973                 | Phone: 202-690-7000              |
|                                   |                                  |
| E-Mail: <sheryl_white@nymc.educ>  |                                  |
+-----------------------------------+----------------------------------+
| **\*The Honorable Janet F. Reno** | **\*The Honorable Alexis M.      |
|                                   | Herman**                         |
| Attorney General                  |                                  |
|                                   | Secretary of Labor               |
| U.S. Department of Labor (DoJ)    |                                  |
|                                   | U.S. Department of Labor (DoL)   |
| 10th & Pennsylvania Avenue, N.W.  |                                  |
|                                   | 200 Constitution Avenue, N.W.    |
| Washington, D.C. 20530-0001       |                                  |
|                                   | Washington, D.C. 20210           |
| Phone: 202-514-2001               |                                  |
|                                   | Phone: 202-219-8271              |
+-----------------------------------+----------------------------------+
| **\*The Honorable Andrew Cuomo**  | **\*Harris Wofford**             |
|                                   |                                  |
| Secretary of Housing and Urban    | Chief Executive Officer          |
| Development                       |                                  |
|                                   | Corporation for National and     |
| U.S. Department of Housing and    | Community                        |
| Urban                             |                                  |
|                                   | Service (CNCS)                   |
| Development (HUD)                 |                                  |
|                                   | 1100 Vermont Avenue, N.W.        |
| 451 7th Street, S.W.              |                                  |
|                                   | Room 6100                        |
| Washington, D.C. 20410-0001       |                                  |
|                                   | Washington, D.C. 20525           |
| Phone: 202-708-0417               |                                  |
|                                   | Phone: 202-606-5000              |
+-----------------------------------+----------------------------------+
| **\*The Honorable Richard W.      | **\*Gilbert Casellas**           |
| Riley**                           |                                  |
|                                   | Chair                            |
| Secretary of Education            |                                  |
|                                   | Equal Employment Opportunity     |
| U.S. Department of Education      |                                  |
| (DoE)                             | Commission (EEOC)                |
|                                   |                                  |
| 400 Maryland Avenue, S.W.         | 1801 L Street, N.W., 10th Floor  |
|                                   |                                  |
| Washington, D.C. 20202-0001       | Washington, D.C. 20507           |
|                                   |                                  |
| Phone: 202-401-3000               | Phone:: 202-663-4900             |
|                                   |                                  |
|                                   | FAX: 202-663-7022                |
+-----------------------------------+----------------------------------+
| **\*Marca Bristo**                | **The Honorable Kenneth S.       |
|                                   | Apfel**                          |
| Chair                             |                                  |
|                                   | Commissioner of Social Security  |
| National Council on Disability    |                                  |
|                                   | Social Security Administration   |
| 1331 F Street, N.W., Suite 1050   |                                  |
|                                   | 900 Altmeyer Building            |
| Washington, D.C. 20004            |                                  |
|                                   | 6401 Security Boulevard          |
| Phone: 202-272-2004               |                                  |
|                                   | Baltimore, Maryland 21235-0001   |
| FAX: 202-272-2022                 |                                  |
|                                   | Phone: 202-358-6000              |
|                                   |                                  |
|                                   | FAX: 202-358-6077 or 6078        |
+-----------------------------------+----------------------------------+
| **\*Ex-Officio Member**           |                                  |
+-----------------------------------+----------------------------------+

**PCMR STAFF**

**Administration for Children and Families**

**President's Committee on Mental Retardation**

**Hubert H. Humphrey Building, Rm. 352-G**

**200 Independence Avenue, S.W.**

**Washington, D.C. 20201-0001**

**Phone: 202-619-0634**

**FAX: 202-205-9519**

**Gary H. Blumenthal**

Executive Director

**John L. Pride**

Deputy Executive Director

**Laverdia T. Roach**

Special Assistant to the Executive Director

**Yolande Bestgen**

Director of Special Projects

**George H. Bouthilet, Ph.D.**

Research Director

**Thelma B. Lucas**

Mental Retardation Program Specialist

**Joan Williams**

Special Projects Specialist

**Bena Smith**

Program Analyst

**Sheila Whittaker**

Budget Officer

**Peggy Butler**

Secretary to the Executive Director

**Angie Green**

Secretary to the Deputy Executive Director

**Terry Lion**

Clerk-Typist

**Dina Bergman**

Clerk-Typist