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

*A series on contemporary supports to people*

*with mental retardation*

#### Speaking Up-Speaking Out

# 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!

##  A 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

Definitions Of Mental Retardation/Developmental Disabilities 1

Natural Supports 4

Prevalence 4

The Changing Face Of Services And Supports 4

People With Mental Retardation As
Citizens................................................ 8

National Legislation 9

The Individuals With Disabilities Education Act 9

The Rehabilitation Act 10

The Americans With Disabilities Act 10

The Developmental Disabilities Assistance and Bill Of Rights Act 10

School-To-Work Opportunities Act 11

Guardianship 11

The Role Of Protection and Advocacy In Rights Issues 14

The Criminal Justice System 15

What States and Localities Can Do 17

Self-Advocacy and Self-Determination 18

Conclusion 21

Resources 23

References 24

Glossary 26

Common Acronyms 29

PCMR Committee and Ex-Officio Members 31

PCMR Staff 34

**Overview**

The field of supports to people with mental retardation and other
developmental disabilities has been rapidly changing since the mid
1960\'s and early 1970\'s. At that time, a series of media exposes
helped to make people aware of how poorly citizens with mental
retardation were being treated. In those days not only were there
limited educational opportunities for children with disabilities, adults
received little or no support outside of their families unless they
resided in an institution. For those who did live in institutions, the
conditions were often horrible: overcrowded, unclean, unsafe, and often
hotbeds of abuse and neglect.

Even at the better facilities, people exercised few rights, had few
possessions, and were cut off from their family, friends, and
communities.

Since that time there have been a number of changes which have improved
the lives of many people. Concepts of how best to provide supports have
changed from that of providing basic care to that of providing supports
which are unique to each individual, and which help empower the
individual to maintain important relationships and lead a
self-determined life.

This booklet starts with definitions of mental retardation and a look at
how many people are estimated to have mental retardation and related
conditions. It provides an overview of many recent changes in concepts
of support, including legislation which affects those with disabilities,
and other issues of the law such as guardianship, protection and
advocacy, and the criminal justice system. The chapter ends with a
discussion of self-determination and self-advocacy on the part of people
with mental retardation.

### **Definitions of Mental Retardation/Developmental Disabilities** 

How should mental retardation be defined? How many people with mental
retardation are there and what kinds of supports do they need? These are
questions that State agencies which serve people with mental retardation
and related conditions must answer in order to best plan for providing
adequate supports to those that need them.

Definitions of mental retardation have changed over the years. In the
past a person\'s IQ score was used as the sole determinant of mental
retardation, with the cut-off point being somewhere around 75 points or
less. Today, several different associations and agencies define mental
retardation in different ways. However, almost all of them use an IQ
score as only one criteria and usually pair it with an assessment of how
well a person can manage daily tasks which are appropriate for his or
her age.

For instance, the Federal definition of developmental disability, a term
which includes most people who have mental retardation, as found in the
Developmental Disabilities Assistance and Bill of Rights Act (P.L.
103-230) is as follows:

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

-   Is attributable to a mental or physical impairment or combination of
    mental and physical impairments.

-   Is manifested before the individual attains age 22.

-   Is likely to continue indefinitely.

-   Results in substantial functional limitations in three or more of
    the following areas of major life activity---

1.  self-care;

2.  receptive and expressive language;

3.  learning;

4.  mobility;

5.  self-direction;

6.  capacity for independent living;

7.  economic self-sufficiency; and

8.  reflects the individual\'s need for a combination and sequence of
    special, interdisciplinary, or generic services, supports, or other
    assistance that is of lifelong or extended duration and is
    individually planned and coordinated, except that such term, when
    applied to infants and young children means individuals from birth
    to age 5, inclusive, who have substantial developmental delay or
    specific congenital or acquired conditions with a high probability
    of resulting in developmental disabilities if services are not
    provided.

While not all people with IQ scores in the mid-70\'s or lower will fit
the current Federal definition of a

developmental disability, many will. This definition of developmental
disability does not talk about

specific disabilities such as mental retardation, autism, cerebral
palsy, spina bifida, or epilepsy,---all of which could be developmental
disabilities---but instead focuses on the severity of the disability,
and how well the person functions in several major life activities.

This increased emphasis on how well a person is able to function in
their environment is important. If a group of people were randomly
selected based simply on the fact that they had an IQ score of 100 on a
standardized test---a score that puts them firmly in the realm of
\"average\"---it would be very difficult to try to define what they need
and want out of life without any other information. Some may be unable
to keep track of the checks they write, while others balance their
checkbooks to the penny. Some may be great athletes; others may be
\"couch potatoes.\" Some may be firmly on a career path; others may
leave a job every six months or so. A few may be deeply satisfied with
their lives, while the rest are still searching. People with mental
retardation show the same kinds of variability. Their abilities are
related to their lives, their interests, their personal histories, and
their opportunities.

The American Association on Mental Retardation\'s (AAMR) most current
definition of mental retardation (1992) also has a strong emphasis on a
person\'s abilities and limitations, as well as an IQ score. The
following is the newest definition developed by the AAMR:

"Mental retardation" refers to substantial limitations in present
functioning. It is characterized by

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

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

-   Valid assessment considers cultural and linguistic diversity as well
    as differences in communication and behavioral factors.

-   The existence of limitations in adaptive skills occurs within the
    context of community environments typical of the individual\'s age
    peers and is indexed to the person\'s individualized needs for
    supports.

-   Specific adaptive limitations often coexist with strengths in other
    adaptive skills or other personal capabilities.

-   With appropriate supports over a sustained period, the life
    functioning of the person with mental retardation will generally
    improve (AAMR, 1992).

The AAMR guidelines on using the definition describe the importance of
supports and states that supports serve various functions and may come
from a number of areas.

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

**Support Functions:** Supports can come from a number of resources,
including oneself, other people,

technology and services. The following are examples of each type of
support:

-   *Individual.* Skills, competencies, the ability and opportunity to
    make choices, money information, spiritual values.

-   *Other People.* Family, friends, coworkers, roommates, mentors,
    staff.

-   *Technology.* Assistive devices, behavioral technology, job/living
    accommodations.

-   *Services.* Currently available services that are to be used if
    natural resources are not available.

> The AAMR lists seven support functions:
>
> 1\. Befriending.
>
> 2\. Financial planning.
>
> 3\. Employee assistance.
>
> 4\. Behavioral support.
>
> 5\. In-home living assistance.
>
> 6\. Community access and use.
>
> 7\. Health Insurance.

There are three key points to consider relative to the support functions
listed above. First, the major

purpose of supports is to enhance successful integration. Therefore, we
should strive to use natural

supports whenever possible. Second, supports may either be of life-long
duration or their need may

fluctuate during different life stages. Third, supportive services
should not be withdrawn unless the service provider continues to monitor
the person\'s current and future needs for support (AAMR, 1992).

# Natural Supports 

This AAMR definition of mental retardation has some other critical
differences beyond IQ and functional skills. It recognizes that a
person\'s abilities are related to their natural support system and
environment. For example, there are many people without mental
retardation who show a lack of initiative in paying bills on time. Very
often this \"deficit\" in functional skills can be masked by a good
partner. Natural supports are part of everyone\'s lives. They may be the
coworker who reminds us to punch in at the beginning of a work shift, or
the neighbor who lets us know that our dog is loose in the neighborhood.

In addition, careful selection of where to work or live can be a
critical part of how dependent a person is on others. People who don\'t
like to drive and do not want to be overly dependent on others, will
most likely want to live where public transportation is available and
where a grocery, a hair stylist, a doctor and other service providers
are within walking distance. People who have limited mobility are much
more capable of doing things for themselves if the home they live in is
set up to be accessible. For instance, someone who uses a wheelchair may
choose to put the kitchen items they use daily in the lowest cupboards
and shelves and store those items that are used less frequently in the
upper cupboards. Environment can make a difference in ability to
function effectively.

# Prevalence 

How many people have mental retardation and need supports? There are
over 20 prevalence studies

completed in the last 25 years in the United States, Canada, and Western
Europe which have attempted to quantify the number of people who have
mental retardation and related conditions.

Based on current information, estimates are that 1-2 % of the US
population will have a label of mental retardation at some point in
their lives. One of the most consistent elements of prevalence studies
to date is a temporary increase in the number of people identified as
having mental retardation in the years between the ages of five and 21.
This temporary \"growth\" in the number of people with the label of
mental retardation is related to the fact that many people who do quite
well in caring for themselves at home, in the community and at work may
struggle a bit more with traditional academics. During their school
years, they may become eligible for special education services and then
have little need for special services after the school years have ended.

Some people, those with a wider range of adaptive skills and natural
supports, will have the label of mental retardation only intermittently
in relationship to temporary need for services. Others will be
identified as having mental retardation early in life and because of
their continual need for supports and services will retain this label
throughout their life. The number of people who are persistently
identified as having mental retardation throughout life can be estimated
at about .5% with another .5% needing services at any given time.

## The Changing Face of Services and Supports

The President\'s Committee on Mental Retardation\'s (PCMR) vision for
supports to people with mental retardation is one in which supports and
services are individualized in a manner which is based on a person\'s
needs and desires. This is contrary to the current standard of supports
which is based on \"one-size-fits-all\" approach of creating service
models where the person must take all or nothing. The Work Group on
Long-Term Care Reform at the PCMR Presidential Forum, April 1994, laid
out what they saw as some challenges and needs in the evolution of
supports to people with mental retardation. The following is their
description:

> In mapping out future long-term service and support policies, the
> group agreed that one of the major challenges facing the field of
> mental retardation and developmental disabilities is to live
> simultaneously with the consequences of the past, manage the existing
> service system, and plan for the future. Unlike many other areas of
> human services policy, past decisions regarding service modalities and
> program placements cannot be easily altered, since the customers of
> the developmental disabilities service system typically require
> assistance that spans decades, rather than a few months or years. For
> example, the decision during the early years of this century to rely
> on large, multipurpose residential facilities as the principal
> modality for meeting the ongoing service and support needs of people
> with lifelong disabilities continues to be a major factor in the
> policy making equation, long after most consumers, parents and
> professionals have embraced the concept of community and
> family-centered services. The most important policy issue the field
> faces, therefore, is to find ways of accelerating the transition to a
> system of services that supports individuals in making meaningful
> choices about how they live their lives as participating, valued
> members of the community, while not abandoning society\'s obligation
> to people who are still being served in facilities and programs which
> no longer conform to contemporary views regarding "best practices".

In order to achieve such a transformation, the work group believes that
it is essential to begin by

articulating a vision of the future. It is the work group\'s belief that
such a vision should include the

following elements:

-   The provision of services and supports tailored to the needs and
    aspirations of each individual, rather than a \"continuum \" of
    prefabricated long-term care program options.

-   An emphasis on consumer choices, either made directly or, where
    necessary, through a facilitator.

-   The opportunity for people with lifelong disabilities to have dreams
    and the chance to achieve them.

-   Outcome-based accountability systems that operate on all levels of
    the service delivery system.

-   Children with disabilities should live with families.

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

-   Eligibility should be based upon the individual\'s needs and not
    labels.

-   People closest to those in need of supports should be empowered to
    help them realize their personal goals, wherever possible.

-   Funding should be based on individual needs and wants, not program
    slots.

-   Individuals who work directly with consumers and their families
    should be given considerable latitude in designing and carrying out
    support strategies.

-   Emphasis should be placed on developing community partnerships in
    which responsibility is shared by individuals with disabilities,
    their families, and friends, as well as the community at large. The
    role of formal services should be modulated to take into account
    such informal, indigenous community support networks.

-   Quality assurance mechanisms should be strengthened, with the
    emphasis on achieving meaningful individual outcomes; people with
    disabilities should be involved in monitoring the quality of
    services and supports that are provided.

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

This concept of services, where people can choose their own supports,
where services forge and re-enforce the connections between people and
their personal networks (family, friends, coworkers, etc.), and where
services are delivered in natural environments and the community of the
person\'s choice, would seem to be a logical and reasonable position. It
has been in the forefront of progressive thought for many years.
However, as the PCMR description for future changes points out, there
are historic reasons why services and supports for people with mental
retardation are still not provided in a way that is directly related to
what people want, and how they want it.

Although fewer people than ever live in large institutions, there are
over 50,000 people still residing in large State-run facilities. But
even more importantly, those who have left the institutions very often
still receive supports in a manner which is rooted in the institutional
model. This legacy of medically-oriented, deficit-based supports reaches
out to touch even those who have never and will never live in an
institution. The following chart shows the evolution in services to
people with disabilities over the last four decades:

#### **The Evolution in Services and Supports**

+----------------+-------------+-----------------------+---------------+
| **FOCAL**      | **ERA OF    | **ERA OF              | **ERA OF      |
|                | INS         | DEI                   | COMMUNITY     |
| **QUESTIONS**  | TITUTIONS** | NSTITUTIONALIZATION** | MEMBERSHIP**  |
+----------------+-------------+-----------------------+---------------+
| Who is the     | The patient | The client            | The citizen   |
| person of      |             |                       |               |
| concern?       |             |                       |               |
+----------------+-------------+-----------------------+---------------+
| What is the    | An          | A group home,         | A person's    |
| typical        | institution | workshop, special     | home, local   |
| setting?       |             | school, or classroom  | business, the |
|                |             |                       | neighborhood  |
|                |             |                       | school        |
+----------------+-------------+-----------------------+---------------+
| How are the    | In          | In a continuum of     | A unique      |
| services       | facilities  | options               | array of      |
| organized?     |             |                       | supports      |
|                |             |                       | tailored to   |
|                |             |                       | the           |
|                |             |                       | individual    |
+----------------+-------------+-----------------------+---------------+
| What is the    | Custodial / | Developmental /       | Individual    |
| model?         | medical     | behavioral            | support       |
+----------------+-------------+-----------------------+---------------+
| What are the   | Care        | Programs              | Supports      |
| services?      |             |                       |               |
+----------------+-------------+-----------------------+---------------+
| How are        | Through a   | Through an            | Through a     |
| services       | plan of     | individualized        | personal      |
| planned?       | care        | habilitation plan     | futures plan  |
+----------------+-------------+-----------------------+---------------+
| Who controls   | A           | An interdisciplinary  | The           |
| the planning   | p           | team                  | individual    |
| decision?      | rofessional |                       |               |
|                |             |                       |               |
|                | (usually an |                       |               |
|                | MD)         |                       |               |
+----------------+-------------+-----------------------+---------------+
| What is the    | Standards   | Team consensus        | A circle of   |
| planning       | of          |                       | support       |
| context?       | p           |                       |               |
|                | rofessional |                       |               |
|                | practice    |                       |               |
+----------------+-------------+-----------------------+---------------+
| What has the   | Basic needs | Skill development,    | Self-         |
| highest        |             | behavior management   | determination |
| priority?      |             |                       | and           |
|                |             |                       | relationships |
+----------------+-------------+-----------------------+---------------+
| What is the    | Control or  | To change behavior    | To change the |
| objective?     | cure        |                       | environm      |
|                |             |                       | ent/attitudes |
+----------------+-------------+-----------------------+---------------+

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

While there are increasing numbers of individuals, service providers and
States recognizing the need for the change to supports which foster full
community membership for people with mental retardation, the funding
sources, and the measures of quality in services remain fixed in the
past. Nationally there are many demonstration projects currently in
progress to look at these necessary changes. The following are some of
the types of projects which will have an influence on what kinds of
supports and services will be available in the future:

***Managed care models**.* Projects which are looking at how managed
care can be used to improve services rather than be detrimental to them.

***Self-determination projects***. Projects that look at ways to foster
choice and decision making in people

with developmental disabilities and at ways to make services responsive
to those choices.

***Models of quality assurance based on consumer outcomes and
satisfaction.*** Projects which are looking at making consumer
satisfaction with services the main criteria for judging quality of
services, rather than using compliance to process oriented regulations
as a marker of quality.

In the current system, services are usually part of a \"package deal\"
where the State pays for a \"slot\" or

\"bed\" in an agency-run home or at a day habilitation center and then
places a person who is in need of

services in an open \"slot.\" Most likely, one of the critical
components that will be identified in these types of projects is that
services and supports can not become responsive to consumer needs if the
consumer is not in control of the money to pay for these services.

## People with Mental Retardation as Citizens

Infringements of personal rights are far from uncommon for people with
mental retardation. In fact it is often an integral part of the
disability experience. In the majority of community group homes, people
with mental retardation are denied basic rights like having access to
their own money, choosing when they will leave their own homes, or
making a phone call whenever they wish. Even choosing to eat their
dinner in front of the TV after a hard day at work can often be a major
battle with direct support staff.

Discrimination can be done with ill intent, but more often it is done
out of ignorance and with an emphasis on protecting people with mental
retardation from harm. The balance between \"protection from harm\" and
the opportunity for people to exercise their rights and to take risks is
often difficult for service providers, family members, guardians,
conservators, legal systems, and advocates. Despite these difficulties,
today people with mental retardation are exercising their rights more
than at any time previously in this century. Yet, as a society we have a
long way to go in protecting and advocating for basic civil rights for
people with all types of disabilities.

The following are some important issues today for people with mental
retardation and their advocates:

-   To work toward the continuation, supplementation, and full
    implementation of current Federal laws which promote civil rights,
    protection and advocacy, community access, and opportunities for
    people with disabilities.

-   To look at and revise current guardianship statutes so that they
    work well for people with mental retardation and related conditions.

-   To look at the current criminal justice system and its ability to
    work effectively for both victims and suspected perpetrators of
    crime who have mental retardation and related conditions, and to
    make the necessary changes to protect people.

-   To continue to educate people with mental retardation and their
    families, advocates, and service providers on full expression of
    rights and methods of self-advocacy. The area of laws, rights and
    justice is one where education is of critical importance. Not only
    is the average citizen greatly ignorant of the rights of people with
    mental retardation but so are many of the people who provide daily
    supports. In fact in many cases the very people in the best position
    to facilitate the expression of rights for people with mental
    retardation (paid support staff, families, guardians, etc.) are also
    very likely to be obstructing the expression of those rights.

In fairness to these people, they are often charged with the complex and
sometimes completely

contradictory expectation of simultaneously advocating for an
individual\'s rights and ensuring the complete safety of the individual
from any form of harm. The guardian, for instance, may be legally liable
for choices or actions on the part of the ward. Direct support staff and
provider agencies may find themselves unpleasantly scrutinized should an
individual\'s choice lead to injury, exploitation, loss of property, or
harm to others. Families are not likely to give permission to the
pursuit of activities which they perceive as harmful or inappropriate
(e.g. sexual activity, gambling, drinking, vegetarianism), even if the
majority of the individual\'s same-age peers are participating in such
activities.

The public often perceives people with mental retardation as incapable
of good judgment, needing constant supervision, and as inordinately
vulnerable to victimization and danger. To varying degrees people with
mental retardation experience this type of discrimination starting the
minute they are born. Much of the time they are unaware that they are
being denied their rights and because of various conflicts of interest
there are few to guide them in speaking out. Continued education for
everyone (self-advocates, families, paid providers, legislators, judges,
lawyers, communities, etc.) is imperative in order to provide the best
balance of reasonable protections with expression of a full range of
rights for people with mental retardation.

# National Legislation 

As with any group who is discriminated against it sometimes takes a
special law to set things right. There is no doubt that legislation has
been very instrumental in forwarding the cause of inclusion for people
with mental retardation. State and Federal laws have helped speed the
process of moving people from institutions to the community, as well as
guaranteeing education and employment opportunities, fair housing, and
protection of civil rights for people with disabilities.

For instance, prior to the Education for Children with Handicaps Act of
1974 (now a part of Individuals with Disabilities Education Act), many
children with mental retardation did not have the option of attending
public school. Not only were they denied an appropriate education,
community participation, and relationships with their peers, the end
result for many was that they had to leave their family homes to reside
in institutions because there were no other support services or forms of
respite for parents of this era.

Another example is section 504 of the Rehabilitation Act of 1973 which
stated that \"No otherwise qualified Handicapped individual\...shall,
solely, by reason of his handicap, be excluded from participation in any
program or activity receiving Federal financial assistance.\" This
language applied to public schools, parks, libraries, postal offices,
hospitals, youth centers, etc. and offered people with disabilities a
legal route to insist on access to things most people take for granted.

There are several Federal laws which mandate access to certain types of
services or which define the

expression of civil rights for people with disabilities. The following
are brief descriptions of the major components of some of the national
legislation which strongly affects service, supports, opportunities and
financial status of people with mental retardation and related
disabilities.

# The Individuals with Disabilities Education Act 

The purpose of this act is to ensure a free and appropriate education to
children with disabilities including mental retardation. It contains in
it the Least Restrictive Environment (LRE) clause which requires that
students with disabilities are educated to the maximum extent possible
with children who are not disabled. Children with disabilities may only
be excluded from regular education settings when the nature and severity
of their disability is such that education in those classrooms with the
use of supplemental aids and services cannot be achieved satisfactorily.
IDEA also authorizes early intervention services for young children and
transitional services for older students to make sure they are fully
prepared and supported in their transition to adult living. IDEA gives
parents of children with disabilities a way to advocate for the most
inclusive setting possible for their children and to receive the
necessary supports and services to make this happen. This law requires
parents, professionals, and the student to create an Individual
Educational Plan (IEP) which outlines what goals the student will strive
for and how these goals can be achieved.

Despite the presence of this law there are still a number of problems
relating to the education system and children with mental retardation.
For instance, the majority of students do not experience full or often
even partial inclusion in their educational settings, nor do they have
ready access to effective early intervention services. Transition
services are not always as successful as hoped. Some States misinterpret
some aspects of this law and don\'t correctly implement it. For instance
in some school systems reimbursement for services in segregated
environments is higher than reimbursement for services in
inclusive/integrated environments. There is also a real lack of cohesion
between all the necessary parties involved. Regular education teachers,
other parents, and school administrators can feel pressured or
threatened by the requirements of the LRE and may also lack the
resources necessary to make inclusion successful.

# The Rehabilitation Act 

The purpose of this act is to support training, research and services
that help to create comprehensive and coordinated programs of vocational
rehabilitation and independent living for people with disabilities. The
act provides Federal funds and support for training and placement of
persons with disabilities into competitive employment. It also contains
language that safeguards civil rights for people with disabilities and
promotes activities that help people access independent living services.

Grant money made available through this act has been instrumental in
beginning the movement toward supported employment (i.e. integrated
community employment that pays real wages) for people with mental
retardation and other severe disabilities. Recent amendments to this act
have affirmed social recognition of people with disabilities as capable
responsible citizens who deserve fair treatment and opportunities for
personal growth. This act assumes the employability of all people
regardless of disabilities.

**The Americans with Disabilities Act (ADA)**

The purpose of this act is to coordinate and expand civil rights for
people with both physical and mental disabilities and to eliminate
discrimination against individuals with disabilities. It mandates equal
opportunity in the areas of transportation, public accommodations,
employment, State and local government services and telecommunications
relay services for people with disabilities.

The ADA applies to all people with disabilities including cognitive
disabilities. Employers, businesses, and other entities covered by this
act must provide any reasonable accommodation to people with
disabilities. For instance employers may need to make minor alternations
in job duties or provide specialized equipment so that a person with
disabilities can perform the job.

Making accommodations to people with physical disabilities, (e.g. access
ramps, curb cut-outs, signs in Braille) is probably more intuitive to
the public. Accommodations for persons with cognitive disabilities may
require more forethought and creativity. People with mental retardation
and their advocates can help by providing information and education on
how to make reasonable accommodations (e.g. providing written materials
in simplified language or alternative formats, using symbols as well as
words on public signs) for people with cognitive impairments.

# The Developmental Disabilities Assistance and Bill of Rights Act 

This act was the first congressional effort to address the needs of
persons specifically with developmental disabilities. The act and its
subsequent amendments provide for several important services and systems
which help to increase opportunities for full citizenship for people
with

developmental disabilities in our society. These systems and services
include the following:

-   *The establishment and funding of University Affiliated Programs
    (UAP).* UAP's are programs at institutions of higher education
    designed to learn about and share information about the best
    possible services that will support people with developmental
    disabilities to achieve independence, productivity, and integration
    into the community.

-   *Basic State grants for planning and coordinating services for
    people with developmental disabilities.*

-   *Establishment of protection and advocacy systems in individual
    States, to advocate for the rights of persons with developmental
    disabilities.*

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-   *Grant money for demonstration projects of national significance
    designed to improve services to*

> *people with developmental disabilities.*

Amendments to this act have recognized and emphasized the capacities of
people with developmental

disabilities rather than their limitations. It recognizes the primary
role that family, friends, and neighbors can play in enhancing the lives
of people with developmental disabilities. In addition it defines
developmental disabilities in terms of functional skill level rather
than by listing specific disabilities or IQ levels.

# School-to-Work Opportunities Act 

The School-to-Work Opportunities Act (STWO) is part of our nation\'s
current attempt to redesign public education so that every student will
receive a meaningful education which adequately prepares them for a role
as a productive adult in our society (other related acts include Goals
2000: the Educate America Act and The National Skill Standards Act).
STWO makes Federal funds available to individual States and regions for
the purpose of developing effective school-to-work transitions for all
students including those with disabilities. For some students this may
mean preparation for further education to achieve their career goals,
for others it may mean active job placement to develop necessary skills
prior to leaving school. STWO seeks to decrease drop-outs and to
encourage the broadening of career choices and development to students
who have typically had these choices limited (women, minorities, and
students with disabilities)

The School-to Work Opportunities Act can serve to solidify and
strengthen many of the achievements

already made in transition services to people with mental retardation.
It can bring new energy and funds to these initiatives. The STWO Act
also specifically encourages the development of opportunities for people
to prepare for careers that are not traditional for their disability and
could serve to expand choices in employment to people with mental
retardation.

While this act specifically uses language that includes students with
disabilities the focus is much broader and is meant for all students. As
States look at how they will utilize the Federal funds that become
available to them it will be important for the voices of people with
mental retardation and their advocates to be heard in shaping these
programs so that adequate resources and planning goes in to making these
School-to-Work opportunities viable for people with mental retardation.
The work already done in transitional services for people with mental
retardation and other disabilities should provide useful information and
models to broader based initiatives.

There are many more Federal and State laws that apply to people with
mental retardation. Public law is an important tool in the fight for
full inclusion and citizenship. However, because it is possible for
people to follow the letter of the law without the intent of the law,
cooperation with the law and enhanced understanding of why it\'s
important rather than mere enforcement should be a primary goal.
Continued education and training to members of our communities and
businesses is critical in achieving this cooperation.

# Guardianship 

For people with mental retardation guardianship can be a double edged
sword. On the one hand, for some there are real difficulties in sorting
out the information necessary to make informed choices. On the other
hand, in many cases, guardianship has been over-used for people with
mental retardation and many State statutes regarding guardianship do not
work effectively to protect the rights of people with mental
retardation.

Since there are no Federal laws that oversee guardianship issues, each
State has its own set of statutes that govern guardianship. While these
specific statutes vary from State to State, few States have established
useful guardianship statues which are sensitive to the circumstances of
people with mental retardation. The following is the official position
statement on guardianship of Arc National, a national advocacy group for
people with mental retardation.

*Issue.* The need for legal intervention in the decision-making of
persons with mental retardation is much less than perceived by public
policy makers, providers of services and family members. Guardianship
has often been over-used by those who simply wanted to have their wishes
prevail over the wishes of the individual. Frequently, lesser forms of
legal intervention such as limited guardianship and the use of powers of
attorney have either been overlooked or intentionally avoided.

*Position.* The majority of persons with mental retardation can manage
their own affairs with informal assistance and guidance from family,
friends, citizens, and service agency support staff. The appointment of
a guardian is a serious matter involving the limitation of a person\'s
independence and rights. When guardianship is appropriate, it should be
sparingly used and adequately monitored by the legal system and
advocates to insure that the best interests of the individual are
protected.

-   Appointment of a guardian should be made only to the extent
    necessary for the protection and welfare of the individual and not
    for the convenience of the family, the service system, or society.

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-   Less restrictive alternatives to full guardianship should always be
    considered first.

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-   Since guardianship represents a transfer of responsibility for
    exercising an individual\'s rights, adequate safeguards are needed
    to assure the individual retains as much decision making power as
    possible.

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-   The restrictions on the individual\'s rights and decision making
    powers should be confined to those areas in which the individual
    clearly cannot understand the serious consequences of his or her
    decisions or lack of foresight, such as through the use of limited
    guardianship, power of attorney, etc.

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-   The guardian---preferably a family member---should be someone who is
    committed to the well-being of the individual, knows and understands
    the individual\'s needs and wishes and acts in accordance with them
    whenever possible.

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-   The guardian should become knowledgeable of services, supports and
    systems that could impact

significantly on the life of the individual.

-   The guardian shall be accountable for his or her actions and those
    actions reviewed periodically.

Adopted by the Arc Delegate Body, October 1995. (For other Arc position
statements published on the Web go to --
http://TheArc.org/posit/posindx.html)

While the Arc National position Statement is a vision for the judicious
use of guardianship for people with mental retardation and related
disabilities, the reality in most States is not consistent with this
position. Why is there such a discrepancy between the \"ideal\" way in
which guardianship should be used and common practice? The following are
some of the reasons:

*History.* Some people, especially older individuals, are under
guardianship status as a vestige from a time when it was deemed
appropriate or necessary for the majority of people with mental
retardation, or in circumstances when the only \"support\" options
available (institutions) required the person to be a ward of the State
in order to receive services. There is usually not a meaningful review
of this arrangement so people often remain under guardianship status
long after it is no longer necessary.

*Conflict of interest.* In both public and private guardianship there
are some inherent conflicts of interest. In public guardianship (when
the guardian is some entity of the State) the guardian often also has
other duties which conflict with the individual\'s best interest. For
instance, the State may simultaneously function as the guardian and as
the entity that funds, determines eligibility for, or provides support
services. If there is a conflict between the ward and the State system
it is difficult for the guardian to look first to the individual\'s
interests. In private guardianship a parent or other relative may be
convinced that their family member will need a guardian in order to
successfully navigate the service system, however, family members quite
often make different choices than the individual might make.

*Lack of education/training.* There is very little training for those
who take on the role and responsibility of guardianship. The role is
largely misunderstood and (often with the best intentions) people
perceive the role of a guardian as limiting a person\'s rights rather
than helping the person to effectively exercise their rights. In
addition people with mental retardation have access to very little
non-bias training and information to help them understand and advocate
for their rights.

*Assumption of permanency (unchanging) of disability.* Usually when
guardianship is sought for people with mental retardation and related
disabilities it is made with the assumption that this will be a
life-long situation (i.e. a person with mental retardation once in need
of a guardian is always in need of a guardian). While it is certainly
true that it is not likely someone will raise their IQ, it is not true
that a person with mental retardation does not change or develop new
skills and abilities over time.

*Lack of options or confusing options*. Some States do not have much
choice in terms of limited

guardianships or conservatorships. Many States do have separate statutes
regarding the guardianship of adults with developmental disabilities,
unfortunately many of these separate statutes are more likely than
general guardianship statutes to be overly restrictive (e.g. assuming
permanency of functioning level, having a less thorough rather than more
thorough pre-trial assessment).

*Poor or under-used pre-hearing assessments.* Prior to determining if a
person is in need of a guardian it is typical to have some form of
assessment of the need. For people with permanent cognitive disabilities
this is too often simply an establishment of the fact that the
disability exists without thoroughly examining the person\'s functional
skills or quality of supports.

*Poor and under-used review systems.* There is usually some mention in
the statutes concerning the

review of guardianship at specific times. Very often a guardian will
have to fill out some justification for decisions made on the ward\'s
behalf, particularly in the area of finances. However, due to large case
loads and other conflicts of interest these reviews are often skipped or
filed away without being read.

States need to review and assess their guardianship statutes to
eliminate these conflict of interests and false assumptions about people
with mental retardation and related conditions. Guardianship is a
radical approach to trying to guarantee safety. Too often guardianship
serves to limit not preserve rights for people with mental retardation;
therefore, it should be considered a last resort. If guardianship is
necessary, whenever possible the guardian should be someone without any
conflict of interest toward the ward (for instance a paid guardian or
conservator or a family member who is willing to stay educated and put
the ward\'s interests and desires first whenever possible). Guardianship
or conservatorship should be limited to only the precise areas where a
person needs the substitute judgment.

# The Role of Protection and Advocacy in Rights Issues 

Protection and Advocacy services (P&As) and Client Assistant Programs
(CAPS) are mandated by

Congress to provide legal representation and advocacy services on behalf
of all persons with disabilities. These services were provided through a
variety of methods: individual representation, educating policy makers,
advocacy on behalf of groups, information and referral services, and
education efforts.

The central mission of the P&A system is to respond to allegations of
abuse, neglect and violations of

rights of persons with disabilities or discrimination based on their
disability. P&As pursue legal,

administrative, and other appropriate remedies upon their behalf.

There has been a tremendous expansion in both the quantity and quality
of services provided under these programs over the past 20 years. Since
the inception of P&A systems, Congress has expanded their mandate from
serving only persons with developmental disabilities to becoming a
comprehensive cross-disability program.

Protection and Advocacy cases regarding people with developmental
disabilities have focused primarily on the following issues:

Education 36%

Conditions in facilities 2%

Abuse/neglect 18%

Medical services 2%

Housing 5%

Habilitation 8%

Guardianships 3%

Financial entitlement 6%

Employment 2%

Other 23%

All P&A and CAP advocacy is governed by the values of independence,
equity, meaningful choice and empowerment, and the presumption that
people with disabilities are entitled to equal opportunities and full
integration and inclusion in society. Recently, P&As and CAPs have had
success in promoting these values for persons with disabilities in such
areas as self-determination, access to employment, education, health
care, public accommodations, community integration, and ensuring safe
and humane living conditions. P&As have made significant progress in
assuring that persons with disabilities live and receive needed services
in environments which are age appropriate, culturally competent,
consumer driven and responsive.

P&A programs must give high priority in their services to eligible
individuals who are in the greatest need of services. These may be
individuals who were previously unserved or underserved by provider
agencies or the P&A. P&As must also ensure they serve the most
vulnerable populations or those with complex advocacy needs before
serving less vulnerable populations.

Over the last two decades, as people with disabilities have moved from
institutional settings to community environments, there has been a
noticeable shift in the types of strategies used to protect and advocate
for persons with disabilities. The need for appropriate and culturally
competent services is also more complex, and involves not only
habitation but also access to inclusive educational programs, adequate
financial entitlement programs, health care, integrated housing and
productive employment opportunities.

> *The information for this section was adapted from the Annual report
> of the P&A System 1996-1997 identified in*
>
> *the Resource section of this booklet.*

# The Criminal Justice System 

The criminal justice system as it is today is inadequately prepared to
protect and serve people with mental retardation and other related
conditions. People with cognitive disabilities are at a great
disadvantage when they come in contact with this system both as victims
and as potential perpetrators of crime. Unfortunately there has been
very little time, effort or money put into the study of how the criminal
justice system works or doesn\'t work for people with mental retardation
on a national level. The individual States and locality vary greatly in
their ability to preserve the rights of people with mental retardation
when they come in contact with the criminal justice system.

Consider the following issues in regard to people with mental
retardation and similar conditions when in contact with the criminal
justice system:

-   Due to the fact that people with disabilities are often socially
    isolated, they are more likely to be the target of crimes including
    sexual assault and other violent crimes than the general population
    (estimates range from 2 to 10 times more likely) but these crimes
    are less likely to be reported than crimes perpetrated on others.
    These crimes are often perpetrated by someone who knows the person
    well such as a paid caregiver, a family member, or a neighbor.

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-   Many crimes against people with mental retardation are reported as
    abuse or neglect to special State offices and are dealt with outside
    of the criminal justice system.

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-   People with mental retardation who receive support services are
    actively encouraged in behaviors that make them more vulnerable to
    crimes. For instance they are expected to accept even the most
    intimate of physical care from new staff (strangers) without
    complaint. Often they are expected to turn over their money and
    personal items at the request of staff for their own \"protection.\"

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-   Many people with disabilities who receive services are encouraged in
    behaviors that can lead to legal difficulties. For instance most
    people who reside in residential programs which are staffed 24 hours
    a day are denied any training or experience in appropriate forms of
    sexual expression. This practice can lead to unwanted behaviors such
    as masturbation in public areas or selection of inappropriate
    partners.

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-   People with disabilities displaying characteristics of their
    disability (such as autism, epilepsy, cerebral palsy, etc.) have
    been inappropriately arrested for drunken driving, drug abuse,
    voyeurism, assault and other crimes.

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-   There is evidence to suggest that when crimes are reported, the rate
    of police follow up, prosecution, and conviction of crimes against
    people with disabilities is lower than that of crimes against people
    without disabilities. Some of the reasons that this may be so
    include the lack of acceptance of people with mental retardation as
    credible witnesses, and lack of education on the part of criminal
    justice officials to work with the victim who has mental
    retardation.

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-   Police officers, members of the court system and prison officials
    lack even a basic understanding of how to identify people with
    mental retardation and related conditions and how to protect their
    rights. Often people with cognitive disabilities are confused with
    people who have mental illness or are seen as difficult,
    uncooperative, or intoxicated.

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-   People with mental retardation may act in ways that incriminate
    themselves even if they are not guilty of a crime such as
    \"confessing\" to crimes, saying they understand their rights even
    when they don\'t, not understanding how to request a lawyer, or
    trying to run away from the police when confronted.

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-   Like others, people with mental retardation can be \"recruited\"
    into crimes by others without their knowledge because they may not
    fully understand what is happening, because they are eager for
    friendship, or because they wish to be helpful.

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-   Many people with mental retardation may wish to hide their
    disability making it hard for people to identify and meet their
    specialized needs.

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-   People with disabilities who are imprisoned are at higher risk of
    being victimized by other prisoners while incarcerated.

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-   Many States have some aspect of sentencing that is unfairly biased
    toward people with mental retardation and denies them their rights.
    For instance in some States both people with mental illness and
    mental retardation are treated similarly by the law and may be
    sentenced to a facility until they have \"recovered.\" Since people
    with mental retardation can not \"recover\" from their disability
    this effectively sentences them to incarceration for life.

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-   Many people maintain the untrue stereotypes perpetuated earlier this
    century that claimed that people with mental retardation were more
    likely to participate in criminal behavior than other people.

Contact with the criminal justice system is a confusing and sometimes
frightening experience regardless of abilities. For people with
cognitive impairment clearly there are a number of factors that put them
at a higher risk of having unfortunate outcomes when dealing with the
criminal justice system. As more people with mental retardation begin to
participate fully in their communities the number of contacts with the
criminal justice system will most likely increase and without careful
planning and attention people with cognitive disabilities are likely to
suffer unfortunate consequences. As with other aspects of life many
people with mental retardation will need specialized supports to
navigate the legal system and to be provided with consequences,
treatments, and rehabilitation options that make sense, are fair, and
protect their rights.

Of great concern is the use of the death penalty for people with mental
retardation. Given the number of factors that put people with mental
retardation at serious risk of being falsely accused and found guilty of
crimes, the risk of putting the wrong person to death is very real.
Since the reinstatement of the death penalty in 1976, 31 people with
identified cognitive disabilities have been put to death. These
executions have taken place in 12 different States. Eleven other States
and the Federal government have banned the death penalty for people with
mental retardation, but because there is little planning for how to
identify who has mental retardation, the risk still remains.

In Minnesota the development of the Minnesota Extended Treatment Options
(METO) program is almost completed. This program is designed to
intervene with people who have developmental disabilities and who are
participating in extreme behaviors that put them at risk for
incarceration (e.g. sexual misconduct, arson, assault), or to work with
the courts to provide a fitting rehabilitative experience when a person
with developmental disabilities has been adjudicated. The goal of the
program is to work with the individual to learn alternatives and control
over the unwanted behavior or activities and to help them return to the
community as soon as possible. The ability to move supports into the
community with the person provides the opportunity for the person to
learn new behaviors in real environments with the safety net of extra
supports.

In Oklahoma, offenders with low IQs and limitations in one or more of
seven defined life activities such as self care, learning, mobility, and
economic self-sufficiency are admitted into a specialized program which
is meant to ensure the best adjustment possible for the offender during
the time spent in prison and to help prepare the person for returning to
the community successfully at the end of the sentence. The offender is
evaluated in a number of areas such as the ability to read, write and
perform mathematical operations, vocational interest and skills, skills
in self-care, and other life skills. Offenders are provided with a
number of instructional opportunities to help them prepare for life
outside of prison including the following: life skills instruction,
vocational skill development (such as plumbing, carpentry, small engine
repairs, etc.) communication (assertiveness, empathy, basic
conversation, etc.) related job skills (filling out applications, resume
writing, etc.) and other opportunities to help offenders be successful
upon release. Since initiation of the program three offenders have
successfully graduated and have not returned to the court system.

Some States such as Nebraska and Nevada use individualized plans (called
Individual Justice Plans in Nebraska and Cooperative Services Plan in
Nevada). These plans focus on providing treatment as an alternative to
incarceration with persons who may have difficulty in understanding the
consequences of their behaviors but who participate in activities or
behaviors that are not acceptable. The plan requires coordination of a
number of parties and details the outcome of contact with the criminal
justice system as would be appropriate for the particular individual,
along with plans for treatment and follow-up.

Because there is no national agenda to deal with these issues each State
has been left to make its own decisions about how best to work with
people who have disabilities in the criminal justice system. A recent
informal survey of States asked how they were currently dealing with the
issue of people with developmental disabilities who were involved in
serious criminal behavior. The majority said that they simply shipped
the people out of State presumably to another State that had a plan in
place for such people. For less serious crimes many people with
developmental disabilities are placed in restrictive facilities in the
community and provided with 24-hour supervision. Because these
facilities are not jails these people may miss out on the due process
allowed people without disabilities which could allow them to eventually
return to less restrictive settings.

# What States and Localities Can Do 

The Rand Corporation is currently undertaking a national survey to
collate what has been done in the area of criminal justice for people
with mental retardation and to make recommendations for future
directions. However this information will not be available for several
years. In the meantime individual States can increase the potential of
positive outcomes for people with mental retardation when they come in
contact with the criminal justice system by doing some of the following:

-   Educating police officers and other criminal justice personnel on
    how to identify and work with the victim or suspected offender with
    developmental disabilities. Early identification is critical to
    preserve a person\'s rights when they come in contact with the
    criminal justice system.

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-   Discourage practice in service delivery systems that \"creates\"
    victims and perpetrators. Allow people receiving services choice and
    freedom of expression. Encourage expression of dissatisfaction with
    services when appropriate. Provide people with mental retardation
    information on what constitutes criminal activity, how to identify
    people who are perpetrators, how to report crimes and how to protect
    their rights if suspected of a crime.

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-   Work toward the prohibition of the death penalty as punishment for a
    crime for person\'s with mental retardation.

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-   Work with the criminal justice system to create consequences,
    treatments, and rehabilitation options that make sense, are fair,
    and protect people\'s rights.

Public laws, the courts and the criminal justice system were meant to
protect and create opportunity for all citizens of the United States.
For people with mental retardation and related disabilities the system
isn\'t always working. While there is a greater awareness of the
capabilities and adaptations necessary for people with mental
retardation and related conditions there is a long way to go. People
with cognitive disabilities are at greater risk of being victims of
crime, of being unjustly accused and found guilty of crimes and of
having opportunities denied to them because of their disabilities. The
serious implications to quality of life for many people with mental
retardation requires that continued education, training, dissemination
of information, and planning in this area needs to begin now so that all
people can enjoy life with the same freedom, liberty, and access to
justice.

## Self-Advocacy & Self-Determination

What is self-advocacy ? It is different from \"advocacy\" for people
with mental retardation and

developmental disabilities which is some other individual advocating on
behalf of the person with a

disability. Self-advocacy is about people with mental retardation and
other developmental disabilities

advocating for themselves. It means different things to different people
involved in the movement but to most people with developmental
disabilities involved in the movement, self-advocacy is about civil
rights, supporting people in speaking up for themselves, and effecting
changes in policy, attitudes, and opportunities for people with
disabilities. Over the past 20 years, self-advocacy groups have been
springing up all over the country and a national network of these groups
has been established through Self-Advocates Becoming Empowered (SABE).
The numbers of self-advocacy groups has continued to grow from the
initial group in 1973 to over 700 groups listed in the United States and
Canada in 1995 (University of Minnesota, 1995).

SABE was conceptualized in 1990 at a national self-advocacy conference
held in Colorado and in 1992 was officially named. The SABE mission is
to ensure that people with disabilities are treated as equals; are given
the same decisions, choices, rights, responsibilities and chances to
speak up to empower themselves; are able to make new friendships and
renew old friendships; and are able to learn from their mistakes like
everyone else.

SABE has several primary goals, including:

-   Making self-advocacy opportunities available in every State.

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-   Providing opportunities to those living in institutions, those still
    in high schools, those living in rural areas, and those living with
    families.

-   Providing local supports and advisors to help self-advocacy groups.

-   Working with the criminal justice system and people with
    disabilities about their rights within the criminal justice system.

-   Closing institutions for people with developmental disabilities
    labels nationwide and building community supports.

SABE has been involved in a number of special projects, received a
number of awards and grants, presented at numerous State and National
conferences about self-advocacy and produced a number of publications
and products. Currently SABE is actively working on the National
Advisory Group for Justice project which is designed to facilitate
self-advocates having an influence on how police operate and how people
with disabilities are treated in the criminal justice system. Another
current project of SABE is their Close the Doors: Campaign for Freedom.
This project is designed to develop and implement a national plan to
close institutions for people with developmental disabilities and to
develop appropriate supports for these individuals to live in the
community.

Self-advocacy is a relatively new movement. To some it may be viewed as
just a new trend and not acknowledged fully as the civil rights movement
that it is. The movement has been around for over 20 years but has
almost doubled in the 1990\'s. This \"youth\" brings with it a number of
issues that self-advocates, parents and \"professionals\" must struggle
with, learn about, and attempt to resolve. The following are some of
these issues:

-   Self-advocacy is a grassroots movement and should be run by and for
    people with developmental disabilities. Recently it has become
    \"politically correct\" and in some cases required by law or policy
    for trade associations, provider organizations, government agencies
    to include self-advocates in planning meetings, on Boards of
    Directors, advisory groups, etc. Although it is critical for
    self-advocates to always be invited and to have a voice, it is more
    important that they feel free to choose their own issues, plan their
    own agendas, and participate only on advisory groups, Boards of
    Directors, or in planning meetings for which they feel the issues
    are important. Additionally, it is not enough to just invite one
    self-advocate to participate in activities and groups.
    Self-advocates often need support to participate fully or else it
    becomes a token gesture. Examples of support include transportation
    to meetings, providing materials in advance, having meeting agendas
    and minutes read to the individual or altered to include pictures or
    large print, taking the time to explain issues fully, having several
    self-advocates involved, or being paid for participation if it takes
    them away from their paid job or requires travel.

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-   The role of an advisor to self-advocacy groups is confusing and
    needs greater clarity and understanding. For many advisors it is
    difficult to separate out what are self-advocate issues vs. what are
    advisor issues. One advisor said, \"I often find myself saying
    \'we\' vs. \'they,\' that\'s when I know I need to step back and
    remind myself that this isn\'t about me, it\'s about what
    self-advocates want, say and do.\" Advisors are involved in
    self-advocacy groups to assist and support, not to guide and direct.
    For many advisors it is difficult to sit back and watch
    self-advocates fail or make mistakes, however, advisors themselves
    say this is an essential role of an advisor. Advisors need greater
    opportunities to network, learn from one another and to develop
    checks and balances that uphold the integrity of being there only to
    support and advise.

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-   Funding is an issue for many self-advocacy groups. These groups are
    funded in many different ways, including: Arc chapters, States,
    private foundations, Governor\'s Councils on Developmental
    Disabilities, and local chapter fund raising. Although
    self-advocates and advisors don\'t always agree on where money
    should come from, there are two things that most self-advocates and
    most advisors do support: 1) self-advocacy groups need long-term
    funding, 2) irrespective of the source, funding provided to these
    groups should come with \"no strings attached\" so that there is no
    conflict of interest.

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-   People working with children and adults with developmental
    disabilities (e.g. teachers, direct support workers, parents,
    professionals) need to gain better understanding regarding
    self-advocacy, self-determination and their importance. However,
    self-advocates and their advisors strongly suggest that the best way
    for these individuals to learn about self-advocacy is to learn about
    it from those who have developed it and are experiencing it:
    self-advocates. If an organization or group is interested in getting
    self-advocacy groups started, or involving self-advocates in policy
    or decision-making, then they should call a local self-advocacy
    group or SABE for assistance.

There are a number of barriers which have slowed or made the development
of self-advocacy groups and implementation of their efforts more
difficult. Some of these barriers as identified by self-advocates and
advisors include:

-   Not having enough money.

-   Difficulty in building training and groups across a State due to
    distance and costs.

-   Parents not allowing their children to become involved in
    self-advocacy.

-   Group home staff not providing transportation for self-advocates to
    attend meetings.

-   Day program staff not allowing self-advocacy groups to meet.

-   Everyone focusing on the word \"retarded\" and not giving us a voice
    or credibility because we are labeled with that word.

-   Not having a place to meet.

-   People in wheelchairs not being able to get into cars to go to
    meetings.

-   People with disabilities always having to conform vs. others and the
    system conforming for us.

The self-advocacy movement, like any other civil rights movement, is
lead by a few vocal and determined people. At the core of the
self-advocacy movement is the concept of self-determination.
Self-determination is about people controlling their own lives. It is
not the same thing as self-advocacy. It refers to basic things in one\'s
life such as other\'s respecting your feelings, choices, preferences and
behaviors. It is something all people have a right to regardless of age
or ability. Self-determination is closely linked with how people view
themselves, how others view the person and a person\'s general quality
of life. All people with mental retardation and other related conditions
should be afforded the opportunity to live a self-determined life, yet
not all people will become involved in the self-advocacy movement.

One mother provided insight as to how self-determination is best
facilitated, \"Self-determination is not synonymous with independence.
Rather it is best facilitated by interdependence: connections and
support from those around us. Our brain, our spirit, our emotions, our
psyche and our sexuality all function better in social interaction than
in isolation." (IMPACT, 1994, pg. 1) Self-determination is experienced
through opportunities to make choices and to have these choices honored.
A few simple examples include:

-   People who live in regulated facilities choosing what they want to
    eat and

where they want to eat it.

-   People choosing who they want as staff.

-   People choosing what they want and do not want to learn.

-   People talking on the phone when they want.

-   People choosing where they work or not to work at all.

Even at it\'s most minimal level self-determination is something which
most people with mental retardation have not experienced in any
meaningful way. The emphasis of supports has always been on (over)
protection and habilitation which leaves little room for individual
decision making.

In order for people to truly experience self-determined lives, it will
be critical for service providers, government entities which fund
services and regulators and families to work with self-advocates and to
take a serious look at the \"system\" we have built in this country to
serve people with developmental disabilities. This means to look at the
way service providers deliver services, the way direct support staff
interact with people who receive services, the rules and regulations
that exist to monitor services, the way people access services, the way
we define quality of life and quality services, how services are funded
and who controls the money and has the power. We must examine and remove
barriers to self-determination so that people with developmental
disabilities can live real lives as full citizens determining their own
destinies.

## Conclusion

The types of supports which will be available to those that need them in
the upcoming years is not clear. The service system is under stress to
change from a variety of sources. Not only is there increasing
dissatisfaction in the way services are delivered and assessed for
quality on the part of consumers, families, provider agencies and
others, but there are real financial pressures in terms of governmental
reform (block grants, Medicaid, welfare) as well.

On the other hand, the systems in place are deeply entrenched. Services
to people with mental retardation and other developmental disabilities
are some of the most highly regulated and expensive government-funded
services. The difficulty in streamlining services comes from a variety
of sources. Parents, consumers, and advocates may fear that changes will
reduce protections for people with mental retardation. Service providers
and governing agencies are unsure about how they will fare in the new
system and can be overwhelmed at the task of retraining or eliminating
personnel.

Federal legislation (e.g., Individuals with Disabilities Education Act
reauthorization of 1997) has usually been favorable in continuing to
strengthen and re-enforce the concepts of full citizenship for people
with mental retardation and other disabilities. On the other hand the
amount of money set aside for the States to accomplish these changes has
at best remained stable while the needs and demands for services have
simultaneously increased.

This time of increased expectations and reduced resources will call for
creative thinking. Already States, school systems, provider agencies,
and localities have begun to find ways to make changes happen given the
resources they have, but these changes are not currently widespread. To
make the necessary changes is a reality service providers will have to
redefine themselves.

Our current system of services and supports has been built on the
premise that it requires a \"specialist\" to work with people who have
mental retardation. We have \"special\" educators, \"special\"
recreational programs, and \"special\" rules and regulations which apply
only to people with mental retardation and related conditions. The
original intention of this investment in building a capacity to support
people with mental retardation was to provide them with opportunities
that were not easily available at the time (i.e., an education, jobs,
homes in the community). However the result of this \"specialization\"
is a system that is expensive to operate, and increases the isolation
that many people with mental retardation experience in their
communities.

What the future holds depends on how well the \"specialists\" are able
to share what they know in order to build the community capacity to
include people with mental retardation and related conditions in all
aspects of daily life. There will have to be a more proactive pooling of
resources with generic services and programs already in the community to
make needed supports available to people with disabilities. For
instance, special education teachers will more and more find themselves
as floating resource personnel, rather than in charge of self-contained
classrooms. They will need to come to the table when school systems are
meeting and planning in order to make sure that the whole system is
prepared to teach and support all students. They will need to be able to
collaborate well with a variety of \"regular\" education teachers who
will provide the primary teaching experience to all children regardless
of ability.

Support agencies and direct support staff will have to be more
knowledgeable about generic services available and have a role in
strengthening and developing natural supports. For instance, day and
habilitation agencies, which currently put a lot of effort into training
and supporting employees with disabilities, will have to reorganize
around job development and training of coworkers and supervisors on how
best to work with the employee with mental retardation. Agencies that
provide residential supports which currently provide a limited menu of
services built around funding sources will have to reorganize around
offering a wide variety of services and supports from which people with
mental retardation can pick and choose. In addition, to be affordable
these services will have to foster the natural supports from families,
neighbors, coworkers and friends.

Planning councils, advocacy groups, and State and county agencies will
have to become part of the generic community planning and development
processes. They will have to be there at the beginning to ask how these
plans will affect citizens with mental retardation and to provide
insight on how planning can include all citizens.

Never has there been a time with more challenges and more opportunities
toward the creation of whole communities that welcome all people
regardless of ability. Fortunately there is already a generation of
people with mental retardation who have had more opportunities through
education and available family supports than ever before. As these young
people come into adulthood and each generation after, they will be
expecting more from life than ever. They expect more than what is
available today. They expect the support to have the full range of
experiences and opportunities that are available to people without
disabilities. And we all have a role to play in seeing that they get
what they want.

**Resources**

*Annual Report of the P & A System 1996-1997.* A federally mandated
network of disability rights agencies: Protection and Advocacy Systems
and Client Assistance Programs. To obtain a copy, contact Advocacy
Training/Technical Assistance Center for P & A\'s and CAPS of the
National Association of Protection - Advocacy Systems, Inc., 900 Second
St. NE, Suite 211, Washington, D.C. 20002, (202) 408-9514, (202)
408-9520 FAX, (202) 408-9521 TDD.

*IMPACT: Feature Issue on the ADA.* (1992-1993). By K.C. Lakin, R.A.
Jones & D. Leuchovius (Eds.). This publication looks at what the ADA
means for people with developmental disabilities. Available at the
Institute on Community Integration, University of Minnesota, 109 Pattee
Hall, 150 Pillsbury Dr. SE, Minneapolis, MN 55455, (612) 624-4512.

*Unequal Justice: The Case for Johnny Lee Wilson.* (1995). This video
documentary tells the Story of Johnny Lee Wilson a man from Missouri
with mental retardation who was wrongfully imprisoned for the murder of
an elderly woman in his hometown. Available at the Institute on
Disabilities, Temple University, College of Education 004-00, Room 423
Ritter Hall Annex Philadelphia, PA 19122, (215) 204-1356, c/o Lisa
Sonneborn. Cost: \$35.00.

*The Access to Justice National Resource List.* This list of resources
relating to criminal justice issues as they apply to the person with
mental retardation and related disabilities is maintained by ARC
National. Contact ARC National at: P.O. Box 1047, Arlington TX 76004,
(817) 261-6003 or (817) 277-0553 TDD, or visit their website to review
the list at http://www.TheArc.org/welcome.html.

*No More B.S.:* *A Realistic Survival Guide for Disability Rights
Activists* (1992). A book addressing self-advocacy as part of the
broader disability rights movement. Available from People First of
Washington, P.O. Box 648, Clarkston, WA 99403, (509) 758-1123.

*Circles: Intimacy and Relationships.* This training material explores
the complex issues of individuals with disabilities and their rights
regarding sexuality. To obtain a copy, contact James Stanfield Co.,
Inc., Drawer 24, P.O. Box 41058, Santa Barbara, CA 93140.

*Tools for Change.* A video-based curriculum that builds skills and
knowledge in self-advocacy. To obtain more information about these
training materials contact: Advocating for Change Together, 1821
University Avenue, St. Paul, MN 55104. 612/641-0297

*Self Advocates Becoming Empowered*. SABE is a national grassroots
organization of self-advocates groups. To obtain more information
contact SABE P.O. Box 15165 Loves Park, Illinois 61132.

*Self-advocacy Print and Media Resources.* A guidebook listing nearly
150 publications and media materials about self-advocacy. Available from
the Institute on Community Integration, University of Minnesota, 109
Pattee Hall, 150 Pillsbury Drive SE, Minneapolis, MN 55455.
612/624-4512.

*Voices That Count: Making It Happen.* A presenter\'s guide written to
help self-advocates learn the necessary skills to speak to groups about
leadership roles and opportunities. Available from Cincinnati Center for
Developmental Disorders, 3300 Elland Ave., Cincinnati, OH 45229.
513/559-4639, 513/559-4626 TDD.

*IMPACT: Feature Issues on Leadership by Persons with Disabilities,
Self-Determination and Self-Advocacy.* These newsletters provide
research to practice articles as well as best-practice examples on these
topics. All three issues are available from the Institute on Community
Integration, University of Minnesota, 109 Pattee Hall, 150 Pillsbury
Drive SE, Minneapolis, MN 55455. 612/624-4512.

*Open the Doors.* A community living leadership training package that
shares the accomplishments and activities related to self-advocates
building supports for each other to open doors within their communities
across the nation in the areas of community living, housing, work and
relationships. Available from Self-Advocates becoming Empowered, c/o
People First of Tennessee, P.O. Box 121211, Nashville, TN. 615/256-8002.

## References

American Association on Mental Retardation (1992). Mental Retardation:
Definition, Classification, and Systems of Support (9th Edition).
Washington, DC: American Association on Mental Retardation.

Annual Report of the P&A System (1996-1997). A Federally Mandated
Network of Disability Rights Agencies: Protection and Advocacy Systems
and Client Assistance Programs. \"20 years: P&As Still Making History.\"
Washington, D.C.: Advocacy and Training/Technical Assistance Center
(ATTAC).

Association for Retarded Citizens (1990). Self-advocacy Programs
Directory. Arlington, TX: Association for Retarded Citizens.

Arc MN & the Minnesota Department of Human Services Public Guardianship
Office (1990). Conservatorship and Guardianship in Minnesota , St. Paul,
MN: Arc MN.

Babin, S., (1995) \"Home, Sweet Home\" IMPACT: Feature Issue on
Supported Living Vol. 8 (4). Minneapolis, MN: Institute on Community
Integration, University of Minnesota.

Bradley, V.J. (1994). \"Introduction\". In V.J. Bradley, J.W. Ashbaugh,
& B.C. Blaney (Eds.), Creating individual supports for people with
developmental disabilities: A mandate for change at many levels. (3-9).
Baltimore, MD: Paul H. Brookes Publishing Co.

Bradley, V.J. (1994). \"Evolution of a New Service Paradigm,\" in
Bradley, V. Ashbaugh, J.and Blaney, B.(Eds.), Creating Individual
Supports for People with Developmental Disabilities. Baltimore, MD: Paul
H. Brookes Publishing.

Casasanto, M.D., Simon, M., & Roman, J., (1995). Ethics and Standards
for Guardians. Tuscon AZ: National Guardianship Association.

Conroy, J. (1997). \"Self-Determination works, evaluation study finds.\"
In Community Services Reporter, 4(1), 8.

Cooperative Services Plan, Sierra Regional Center. Sparks, Nevada: State
of Nevada, Division of Mental Hygiene and Mental Retardation.

Dunst, C., Trivette, C. & LaPointe, N. (1992). \"Toward Clarification of
the Meaning and Key Elements of Empowerment.\" Family Science Review, 5,
111-130.

Edmunds, P., Martinson, S.A., Goldberg, P.F. (1990). Demographics and
Cultural Diversity in the 1990s: Implications for services to young
children with special needs. Minneapolis, MN: PACER Center.

Filler, J. (1996). \"A comment on inclusion: Research and social policy.
In Society for Research in Child Development Social Policy, Report 10
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Habilitation Center Services for Developing Skilled, Pro-Social Behavior
(1996) Final Project Report, Lexington, OK: Joseph Harp Correctional
Center.

Kiernan, W.E., & Schalock, R.L. (Eds.) (1997). Integrated Employment:
Current Status and Future Directions. Washington, D.C.: American
Association on Mental Retardation.

Keyes, D. W., (1997) \"The Expert Witness: Issues of Competence,
Criminal Justice, and Mental Retardation.\" In IMPACT: Feature Issue on
the Justice System Vol. (10) 2.

Lakin, K.C. (1997). \"Persons with Developmental Disabilities , Mental
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Indicators of Chronic Health Condition: Monitoring Community-Level
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Lakin, K.C., (Ed). (1996) Research on Community Integration of Persons
with Mental Retardation and Related Conditions: Current Knowledge,
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(NIDRR).

Lakin, K.C., Jaskulski , T.M., & Zierman, S.A. (Eds.). (1995). Journey
to Inclusion. Washington, D.C.: President\'s Committee on Mental
Retardation.

Lakin, K.C., Jones, R.A., Leuchovius, D., (Eds.) (1992) IMPACT: Feature
Issue on the ADA. Vol. 5(4) Minneapolis, MN: Institute on Community
Integration.

Leuchovius, D.& Smith, J., (1995) Point of Departure: Publication of the
Technical Assistance about Training on the Rehabilitation Act Project.
Vol.1 (2). Minneapolis, MN : PACER Center.

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

March of Dimes Birth Defects Foundation. (1996). Men Have Babies Too: A
guide for fathers-to-be. Wilkes-Barre, PA.

National Transition Network Policy Update. (1994). Youth with
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Nelis, T., & Ward, N. (1996). \"Operation Close the Doors: Working for
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B.,& Schoeller, K., (Eds) Vol. 10 (3).

## Glossary

**Advocate:** A person who speaks up and is active in working toward
equal rights, opportunities, and respect for individuals with
developmental disabilities.

**Arc National:** A national advocacy group for people with mental
retardation. There are also many State and local Arc chapters throughout
the United States.

**Autism:** A severe disorder in which the person affected may have
difficulty in both verbal and non-verbal communication, and may relate
to others or events in unexpected ways such as appearing disinterested,
aloof, or unable to concentrate. Autism occurs in five out of every
10,000 births and is four times more likely to occur in boys than in
girls. People with autism may exhibit repetitive behaviors such as
rocking, banging their heads against objects, touching, or hand
flapping.

**Cerebral Palsy:** A central motor deficit that results from injury to
the brain which can occur prenatally, perinatally or postnatally.

**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).

**Conservator:** A person in a legally defined role of protector.
Similar to a guardian, a conservator oversees the decisions of another
person who is unable to adequately care for themselves. Conservators
usually have narrowly defined areas which they oversee such as finances,
or major medical decisions.

**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.

**Down\'s Syndrome:** A genetic disorder which results in several
characteristics including: a shortened stature, mental retardation,
small nose, upward slanting eyes, short stubby fingers, poor muscle tone
and frequently heart problems.

**Epilepsy:** A disorder which affects about 1% of the population and
which seizures are a primary symptom.

**Family support:** Describes service programs for families who provide
support at home for children, and sometimes adults, with developmental
disabilities. Within a family \"centered\" or \"driven\" context, the
programs make use of structured services, natural supports, and often
cash assistance to: (a) make it possible for families to keep their
family member at home, (b) assure that the person with disabilities
receives needed services at home, (c) enhance the capacity of families
to provide supports at home, and (d) realize some cost savings related
to promoting care at home over out-of-home options.

**Functional skills:** The skills a person needs to do the ordinary
tasks of day to day life. Functional skills may be an ability to read,
open a door without assistance, or cook a meal.

**Generic:** Not specific to people with disabilities. 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 people to 15 people and can be publicly
or privately owned and operated.

**Guardian:** A legal relationship with another where the guardian is
responsible for overseeing the decisions the other person makes.
Guardianship usually covers a broad range of standard areas such as
financial and medical matters.

**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 had
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.

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

**I.Q.:** Intelligence quotient. The numerical measure of a person\'s
intelligence, often used in definitions of mental retardation.

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

program targeted to monitor residential services to 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.

**Least Restrictive Environment:** A clause in Individual\'s with
Disabilities Education Act which mandates that children receive
education in the least restrictive settings possible.

**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, the family member who
introduces you to a potential new employer.

**Person-centered planning:** A planning process which looks at the
person\'s strengths, needs and personal goals as a basis for service
delivery. There are formalized forms of person centered planning such as
Essential Lifestyle Planning, MAPS, or Personal Futures planning, as
well as informal ways of gathering information and listening to a person
to see what they consider important in relationship to services and
supports.

**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 programs developed for people receiving services.

**Quality assurance:** This term is generally used to refer to the
complex web of regulations and standards, that have been determined to
define quality, as well as the licensing and certification processes
that enforce them. The focus of these programs is changing to include
quality of life outcomes and quality assurance programs are starting to
include expectations for quality improvement. Within managed care
environments this means an organized set of activities intended
systematically to ensure minimal safety of service recipients and to
foster performance improvements.

**Self-advocate:** A person with a developmental disability who is
active in standing up and speaking out for the rights of all people with
developmental disabilities.

**Self-determination:** To be a person who makes choices and decisions
regarding one\'s own life without undue influence or interference from
others.

**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.

**University Affiliated Program:** Programs at institutions of higher
education designed to learn about (research) and share information
(dissemination & training) about the best possible services that will
support people with developmental disabilities to achieve independence,
productivity and community integration. These programs are authorized
under the Developmental Disabilities Assistance Bill of Rights Act.

**Ward:** A person under guardianship.

## 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              |                                  |
|                                   | Little Rock, Arkansas 72204      |
| Phone: 615-327-0294               |                                  |
|                                   | Phone: 501-569-3016              |
| FAX: 615-217-0827                 |                                  |
|                                   | 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