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

*A series on contemporary supports to people*

*with mental retardation*

#### I Am Who I Am

# Co-Authors

Amy Hewitt

Susan O'Nell

# Editor

Yolande Bestgen

## August 1998 

# Acknowledgments

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

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

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

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

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

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

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

## Valerie J. Bradley Gary H. Blumenthal

## Chair Executive Director 

**PREFACE**

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

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

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

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

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

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

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

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

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

supports, and the educational system.

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

vocational opportunities, and supported recreation.

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

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

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

# Acknowledgments

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

James Beaty

Rick Berkobien

Charlotte Booth

Jean Bowen

David Braddock

Val Bradley

Darden Bynum

Steve Dresniers

Mark Englander

John Filler

Doug Forand

Sally Carson Gaines

Jill Galvin

Vicki Gaylord

Kim Guin

Deborah A. Gilmer

Bob Gettings

Mary Hayden

Richard Hemp

Vicky Hicks-Tunich

Kathy Hulgin

Joyce Keller

Mary Kay Kennedy

Jay Klein

Troy Konarski

Charlie Lakin

Sheryl Larson

Jennifer Macleod

Marijo McBride

James Meadours

Joe Meadours

Jean Ness

Emily Murgo Nisenbaum

John O\'Brien

Janet Peters

John Peters

Joe Pichler

Miriam Podrazik

Irene Rausch

Leigh Ann Reynolds

Alan Robichaud

Kristin Ryan

Christine Salisbury

Wayne Sargent

Caren Sax

Julie Silver

Michael Smull

JoAnn Sowers

Marianne Taylor

Jean Tuller

Matt Zeigler

**Thank you!**

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

##  Note About Language

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

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

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

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

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

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

## 

## 

## Table Of Contents

Overview 1

Person-Centered Planning Approaches 1

Parents with Mental Retardation 3

Aging and Developmental Disabilities 6

People with Challenging Behaviors 8

### The Use of Assistive Technology 13

Culturally Competent Supports 15

Improving Outreach to American Indians 17

Conclusion 18

Resources 19

References 22

Glossary 24

Common Acronyms 26

PCMR Citizen and Ex-Officio Members 28

PCMR Staff 31

Overview

Every person is a unique individual. What people want and need out of
life varies greatly depending on

their background, their circumstances, their abilities, and their
culture. For some people with mental

retardation and related disabilities, providing inclusive, integrated
supports seems like a natural, almost

intuitive process. These are people who need just a little support in
order to succeed or who are

comfortable with the way services are delivered (e.g., the location of
services, the language service

providers use, etc.).

But what about people who need more than a little support to be fully
accepted and respected in our

communities? What about people with disabilities that don\'t come from
the dominate culture? What about people who behave in ways that are
threatening, frightening, or socially unacceptable? Although as a nation
we are providing inclusive opportunities for many more people with
mental retardation, these

opportunities most often exist for people who have fewer support needs.
The more severe, complicated,

threatening, or obvious a person\'s disabilities are, the less likely
they are to be given opportunities to

participate fully at work, at school, at home, and in their communities.

This booklet looks at some of the issues which challenge the system and
require creative thinking: people

with mental retardation and related conditions who are parents; people
who have severe aggressive or other challenging behaviors; or people who
are aging. In addition, the booklet includes information on assistive
technology, culturally competent supports, and person-centered planning
approaches as important components of increasing opportunities for
people with mental retardation and other developmental disabilities.

# Person-Centered Planning Approaches

If there is anything that we have learned about providing services and
supports to people with

developmental disabilities and their families, it is that all people
with mental retardation and other related

disabilities are unique. Each has his or her own history, own
experiences, own strengths, own preferences, own abilities and own
needs. No two people will need or desire the exact same things in the
exact same way. Because of this, there is not one right way to provide
supports to all people with disabilities. Unfortunately, government
systems that fund and regulate services and provider agencies that
deliver services, often prefer to monitor and deliver services in a
standard way because it is easier.

This quest for the one right way of doing things has often lead to
systems and processes that prescribe all

things to all people. For example, regulated facilities often maintain
spotless environments, may have

quarterly nursing reviews or require that certain types of professionals
attend annual planning meetings.

However, not all people with mental retardation need or want to live in
spotlessly clean environments and not all people need or want a nurse to
check them on a quarterly basis. Most people would like to choose who
comes to meetings which are about their lives. As more has been learned
about what people want and need and how best to provide supports, new
person-centered processes have been used successfully to develop
individualized strategies and supports. These planning processes are
particularly useful in figuring out how to best plan supports for people
with specialized support needs (e.g., challenging behavior, limited
expressive communication skills).

Person-centered planning (PCP) is different from the traditional
interdisciplinary (IDT) planning processes. It focuses on people\'s
gifts, strengths, preferences and what they are doing right instead of
their deficits, needs, and what they are doing wrong or cannot do. In
PCP approaches, an emphasis is placed on the individual, his or her
family, and the specific supports these individuals need to enable them
to become full citizens in their communities of choice. The tone of PCP
meetings tends to be more fun and creative. These meetings involve
people who know and care about the person for whom the plan is being
created, unlike IDT meetings, where typically a group of professionals
sits around a table and shares deficit based information about the
person receiving services. Instead PCP meetings are at times when people
get together and find out from the person and his or her family members
what they want, how others can respect their preferences, and assist the
person in realizing his or her dreams and goals.

Person-centered planning is not simply a new group of words that
substitutes for the regulatory-driven

planning and review processes which are the focus of many existing
program models. Person-centered

planning is far more comprehensive and action-oriented and requires a
considerable commitment of time

and energy from the participants. Initial person-centered planning
meetings take longer than traditional

IDT planning meetings and involve not only the collection of a large
amount of relevant information from people who know and care about the
individual (e.g. a personal history, likes, dislikes, dreams) but also
the development of an action-oriented plan. In most cases PCP meetings
occur more than one time a year and can result in the dissemination of
varied forms of \"progress reports\" from verbal phone conversations to
pictorial essays or structured written documents.

There are a number of person-centered planning approaches that have been
developed and used by many

people across the United States and in other countries around the world.
Some of these approaches include: Personal Future Planning; Essential
Lifestyles Planning; MAPS; Planning Alternatives; Tomorrow with Hope
(PATH); and Whole Life Planning. Although these planning processes have
similar components, each is distinct.

In making a decision to move from interdisciplinary planning processes
to person-centered planning processes it is important for agencies,
states and other entities to consider the following:

1.  People who are selected to facilitate these meetings will need a
    considerable amount of new and different training because these
    meetings are organized and run in a format that is very different
    from traditional interdisciplinary planning meetings.

2.  People who are chosen by the individual and their family members to
    attend person-centered meetings may vary from one person to the
    next. Therefore it could result in case managers, day program staff,
    residential staff, and medical professionals not being invited to
    attend every meeting. Developing systems that prescribe who will or
    will not attend is inconsistent with person-centered planning
    processes which hold at their core a value that the individual
    should choose who attends and that the individuals who do attend
    should know and care about the person.

3.  The person and/or their family members are the focal point of these
    meetings and therefore the meetings are scheduled at times
    convenient to the person and their family members which is typically
    not between the hours of 8:00 a.m. and 4:00 p.m.

4.  The results of person-centered planning processes usually do not
    include the development of goals broken down into specific
    behavioral objectives. Therefore, in considering system-wide use of
    person-centered planning processes it is important to ensure that
    the outcomes of these meetings are sufficient in meeting regulatory
    requirements regarding the development and monitoring of program
    plans. Requiring both interdisciplinary planning meetings and
    person-centered planning meetings will likely result in confusing
    and sometimes contradictory plans.

Person-centered planning has dramatically changed the lives of many
people with mental retardation and

developmental disabilities. These planning processes focus on the things
that matter to the person and

those who care about the person. The more these processes can be used in
developing supports and

services for people the better their quality of life will be.

# Parents with Mental Retardation

> *\"Mary is a loving and caring mother. I first met her when I asked
> her to come in concerning her son. He was missing a lot of school and
> not performing very well academically. She came right in and I never
> had a problem trying to get her involved with her son, but she didn\'t
> always know how to follow through. Through our conversations I found
> that she was being threatened with eviction from her apartment because
> the landlord felt it was too dirty and was a health hazard.*
>
> *I began looking around for someone to help her, be an advocate, but
> everywhere I turned I met barriers. Places that provided supports to
> people with mental retardation didn\'t serve them if they had
> children. Social service agencies that served parents only worked with
> people with mental illness. I would try to help her look for a new
> place to live and find that the places she thought she had lined up
> often didn\'t even know who she was.*
>
> *The frustrating thing was that she didn\'t need anything incredibly
> expensive or complicated. Four hours a week of a life skills aide,
> someone to help her clean her apartment and follow through with
> things. Eventually I was able to get some legal help for her through
> Legal Aide and she didn\'t have to be evicted if she would pay her
> rent. She decided to find somewhere else to live.*
>
> *She\'s happy now but I still worry about what happens in the future.
> Her son still isn\'t doing well, but not poorly enough to make the cut
> to receive special services. I remember too that during that time one
> person I talked to really wanted protective services to be involved.
> When I asked why he said \'because then we could have her son taken
> away from her.\' He didn\'t understand how wrong that would be. She
> loved her son but she needed some help. I wonder how much it cost to
> provide someone with 4 hours of support a week compared to the salary
> of hiring another person who has the authority to take kids away from
> their parents?\"*

*---School Social Worker, Michigan*

Just like all parents, parents with mental retardation face a number of
challenges in raising their children.

Their ability to meet these challenges varies depending on their
individual circumstances and skills.

However, parents with mental retardation are at a much higher risk of
losing their children if the social

service system becomes involved. In fact, until recently, children of
parents with mental retardation were typically removed from their homes
whenever it was discovered that the parents had mental retardation.
Currently parents with mental retardation have a better chance to
maintain custody of their children thanks to successful advocacy which
pointed out the injustice in using mental retardation as a basis for
removal. However, welfare reform and other changes pending in Congress
will likely increase the risk of parents with mental retardation being
denied the opportunity to maintain custody of their children.

While there are parents with mental retardation who are able to raise
their children without problems, it is not uncommon for parents with
mental retardation to have some difficulty with many areas of daily
living that affect their children and which put them at risk of having
their children placed outside of the home. Some areas which may be
difficult for parents with mental retardation include keeping the house
clean, serving regular and nutritious meals, and giving children their
necessary medications on time. Parents with cognitive limits may not
understand typical child development. They may not understand the
importance of talking to babies as well as feeding them. They may
interpret normal behaviors of young children as \"bad\" behaviors and
have difficulty disciplining in a gentle but firm manner.

Add to these limitations the fact that many parents with mental
retardation rely on public assistance or

minimum wage jobs. Therefore, the stress of poverty also takes a toll on
these families. The parent\'s

energy often goes to trying to make ends meet with little time left over
for children. In fact households

headed by a parent with mental retardation who are receiving AFDC as a
primary means of support are

some of the most vulnerable to welfare reform. Already on the edge of
making it, a loss of benefits can

mean complete devastation for these families.

Some of the risk factors that increase the likelihood that children with
parents who have mental retardation will be placed outside of the home
include: poverty, inadequate housing, a greater number of children, a
child with disabilities, lack of proper child care, lack of child
discipline, lack of support networks, having two parents with cognitive
delays or having parents with both cognitive delays and some other
disabling condition. Serving these families can be very difficult
because of the number of issues involved. It is rarely simply that one
parent has a cognitive disability that puts the family at risk.

For parents with mental retardation, training and support does have an
effect on their ability to provide a

safe nurturing environment to their children. Families where one parent
or another active adult in the

household has a high level of functioning and adequate child-rearing
skills are less likely to have a child

placed outside the home. In addition families where mothers are actively
participating in treatment

programs are less likely to have children placed out of the home.
Children of parents who are given

effective instruction show improvement in physical and cognitive
development and respond more

frequently to people and things in their environment. If the right
supports are given it is possible to keep

children safely with their parents. Some of the most effective methods
for supporting families include the following:

-   Start with an individual, person-centered assessment of the
    parent\'s skills and the needs of the family through interviewing
    and direct observation of activities.

-   Give the family a real voice in planning for solutions that makes
    sense to them. This increases their investment in succeeding.

-   Train people through active means by modeling appropriate behaviors
    or skills and providing feedback and praise as they practice the
    skill. For instance a mother should not only have skills
    demonstrated to her but should have many opportunities to
    demonstrate her ability to perform these skills.

-   Provide training in the person\'s own home if possible. If this is
    not possible, provide training in a home-like environment.

-   Supply training and support over a prolonged period of time, maybe
    even until the children leave home.

Families headed by parents with mental retardation face many challenges
which ultimately can affect the

quality of life for their children. More study of the numbers of
families is needed as well as the types of

supports they need. Information to date suggests that these families
have a number of complex interrelated needs that would best be met by a
flexible system with a single point of contact. While independence and
self-sufficiency are important, for some parents there may be an
on-going need for support throughout their years as a parent in order to
help their children have the best possible opportunities for success.

Homebuilders: The Extended Family Support Project in Washington State

Homebuilders has been providing assistance to families at risk of having
a child placed out of the home for over 6 years, including families with
parents who are mentally retarded or have other developmental

delays. Homebuilders use a model called Intensive Family Preservation
Service (IFPS) which has been

shown to be effective in reducing or preventing out-of-home placement of
children who were at high risk

due to abuse, neglect, developmental disability, mental health problems,
juvenile delinquency, and special needs involving adoption. However the
data collected by Homebuilders has shown that client families, in which
one or more of the parents has developmental delays or cognitive
limitations, are less likely to receive long-term benefits from services
than the general child welfare participants. Their data showed that
initial rates for keeping families together were the same for both
families with and without parents with developmental delays, but after
one year, families in which at least one parent had cognitive
disabilities, successes had significantly dropped.

Homebuilders\' IFPS model provides intensive services in the natural
environments of the person including their home, work, school, and
neighborhood. Counselors are on call 24 hours a day, 7 days a week, and
routine services are scheduled at the convenience of participants,
including evenings and weekends. Services are provided for a limited
amount of time with specific and measurable goals, and are provided in
the areas the parent needs most. These services can include training in
homemaking skills, learning how to use community resources, managing
emotions such as anger or anxiety, building a stronger social support
network, or learning appropriate methods of child discipline.

Homebuilders has a core set of values which include the beliefs that: 1)
their participants are full partners

in the change process; 2) children are better off being raised in their
natural families whenever possible; 3) all people can learn; 4) teaching
people how to handle their own problems is better than solving problems
for them; 5) part of the job is finding methods for motivating families
to change; 6) crisis\' are

opportunities for change; 7) effort to solve problems must be
persistent; and 8) the safety of all family

members is of primary importance.

Homebuilders recently received a three-year grant from the Joseph P.
Kennedy, Jr. Foundation to adapt

their model for parents with developmental disabilities. They will work
to see if extended supports over

time increases the ability of at-risk families who have parents with
mental retardation to avoid placement of a child out of the home. The
Extended Family Support Project currently offers services to 20 at-risk

families with parents who have mental retardation. Ten of the families
will receive the normal intensive

services (typically delivered over 1-3 months). The other ten will
receive the same level of intensive

services in the first 1-3 months and then another 9-11 months of
on-demand assistance (all services

delivered in 12 months total). Families are randomly selected for the
services, and outcomes for both

groups will be evaluated 18 months after referral. The hope is that the
extended availability of these

services will help parents gain more experience and skills that will
have long-term benefits for the whole

family.

> Information from the Extended Family Support Project. For contact
> information see the Resource section.

**Aging and Developmental Disabilities**

> *\"I was born in 1944. Back then, our society did not believe in
> educating their disabled children, so I never had a formal education.
> In fact, up to this date I have been unable to get into any programs
> that serve disabled people. I am not saying that my parents did not
> try to get me into these programs, but they were from a simple
> background. When they tried to get help for me every door was slammed
> shut in their faces. This was due to two reasons. The first one was
> that until 15 years ago there were no programs for the severely
> disabled people; the second reason was that they were told that I am
> too old for the programs and there is too long of a waiting list.*
>
> *So, the first 39 years of my life I sat in the back bedroom of my
> parents\' home.*
>
> *Sometime before I reached 39, I thought about forcing my parents to
> institutionalize me. Back then my parents and I thought that a person
> with a severe disability had to live their lives with parents,
> relatives, or be institutionalized and warehoused for the rest of
> their lives. When I was 39 my parents were getting in poor health, so
> I decided to force them into institutionalizing me. Basically, I did
> this for two reasons; the first one was because of their health and
> the fact that I did not want to be a burden on them anymore. The
> second reason was that I was getting up in age and before I died I
> wanted to be around people my own age.\"*
>
> *Excerpted from \"Living on the Edge\" by Arthur Campbell, Jr. from
> IMPACT: Feature Issue on Aging and Developmental Disabilities Volume
> 6(1) 1993.*

Older Americans with mental retardation and related conditions have
lived through some tough times. Unlike the generation coming into
adulthood today, they did not have the political power of federal

legislation like the Individuals with Disabilities Education Act (IDEA)
or the Americans with Disabilities Act (ADA). They were denied
opportunities for education, employment, and community inclusion. For
most people of this era there were two choices, remain at home with
their parents for life, or move into a large institution, usually far
from their communities of origin and the people they know and love.

Today it is estimated that between 200,000 to 500,000 people in the
United States over the age of 60 have some form of developmental
disability. Some of these people live at home with elderly parents or
other family caregivers. Others live in small community programs or
foster care. Yet others still reside in large institutions and nursing
homes. As the population continues to age and the baby boomers move into
their 60\'s there will be even more adults of retirement age with mental
retardation and other developmental disabilities.

Based on information gathered in the mid 1980s, it was estimated that
over half of all people with mental

retardation over the age of 62 who lived in residential placements lived
in nursing homes. In 1987 the

Omnibus Budget Reconciliation Act (OBRA-87) mandated that placements in
nursing homes for people with mental retardation be reviewed to see if
the placement was appropriate based on medical needs. It was found that
the majority of people with mental retardation in nursing homes were not
suitably placed

because they did not have health factors that required a nursing home
setting. OBRA-87 required that alternative placements be sought for
people and that a plan for active treatment be put in place for those
that remained in nursing homes (meaning that people had opportunities to
learn new things and take care of their own needs to the furthest extent
possible).

The intention of OBRA-87 was that the community residential providers
would create options for people

who were inappropriately placed in nursing homes. Unfortunately the
current number of available

community residential services does not meet the demand for such
placements. Older adults

inappropriately placed in nursing homes are in competition for
residential supports with younger adults

leaving home for the first time, people moving out of state
institutions, and other older adults looking for

places to live who are not eligible for nursing home placement due to
OBRA-87. In fact, the number of

people with MR/DD reported to be living in nursing facilities in 1996
(37,600) is not substantially different from the numbers reported in
1970 (38,000) prior to the OBRA-87 mandate. In addition, the percentage
of people 63 years and older reported to be living in large state
facilities has gone up from 3.7% in 1977 to 7.7% in 1996 (Prouty &
Lakin, 1997). These gaps in availability of needed supports are likely
to continue to grow as the population ages.

Another gap in residential services for older adults with mental
retardation is that of in-home family

supports. For people who have lived with their parents all their lives,
the realities of aging caregivers can

be difficult. For families where the parents want to remain as primary
caregivers for as long as possible,

there is a need for flexible respite so that parents can take needed
breaks. Some families may need access to assistive technologies, home
modifications, or personal aides to continue to support a family member
at home. These families also need guidance and resources in planning for
the care of their adult child after the parents pass away or can no
longer provide primary care. If the eventual transition is to the home
of another family caregiver such as a sibling, there may be a need for
on-going supports so that the sibling can maintain their other life
responsibilities such as employment, child-rearing, or caring for an
elderly parent. If the transition is to some form of residential
service, family members and the person with the disability need real
options that reflect their needs and lifestyles, and counseling or help
in making the best choice possible.

Many people think that people with mental retardation experience more
significant health problems as they age than their peers without
disabilities. There are certain disabling conditions that do appear to
create special problems related to aging. For instance, people with
epilepsy appear to be at greater risk for developing osteoporosis.
People with Down\'s Syndrome seem to begin the aging process earlier
than their peers without disabilities. However, studies suggest that for
the most part, older people with mental retardation experience very
similar health needs to other people their age in the general
population.

Although most people with mental retardation have similar health needs
to their peers without disabilities there are some studies which suggest
that their health-related needs are underreported and undertreated. In
addition, many people who are elderly may have short-term but intensive
health related needs. These sudden and intense health-related
difficulties may put people at risk for having to move out of their home
if the provider can not arrange for appropriate care.

Today elderly people with mental retardation need options that make
sense for their individual lives.

People who are older may have an even greater diversity of needs than
the middle-aged person because

options vary greatly depending on a persons likes and circumstances.
Some people like to continue

working. This may especially be true for a person who recently found his
or her first job in the

community and is enjoying being productive, making money, and getting to
know others. Some people may want to slow down a bit, work part-time, or
quit working altogether. Some people want to travel, others want to
spend more time at home in their favorite easy chair or they may want to
work on the rose garden they have always dreamed about.

Because of the varied needs of aging people with mental retardation and
related conditions providing

person-centered planning is critical in helping these individuals make
choices about how they would like to live out the remaining part of
their lives. Many adults have not experienced this type of choice-making
or had a voice in selecting services. They may not even know where to
begin. Often they have heard it all

before and may not trust the process.

One way in which providers have successfully helped people to identify
what is important to them is by

helping them put together \"life books.\" This process has direct
support staff talk to the person and

the people they know about the person\'s life experiences. Sometimes
"investigative" work is done to collect old pictures or to reconnect the
persons to long-lost friends and family. Records from previous
facilities are also researched whenever possible. A broader picture of
the person\'s whole life is painted through this effort. Although for
many people the memories are bittersweet, and often a number of loses
are re-lived, the power of this personal story helps direct support
staff understand the person and work toward a person-centered plan which
is based on the whole person. As people who work on these books can
attest, the aging person with mental retardation has a story to tell
which needs to be heard. They are the people who have lived through a
time where opportunities were scarce and supports were few. When we
listen, they tell us of working for no wages and missing out on even
basic educational opportunities; of forced sterilization; of living in
institutions where they ate meals with arms over their plates to keep
others from stealing their food; of victimization and abuse at the hands
of staff and other people living in the institution; of seeing their
families once a year or not at all; of gaining and losing friendships at
the whim of the system; of \"treatments\" such as drugs, shock therapy
and teeth extractions which left them with more disabling conditions
than they started with; and of decades lost to the black-hole of no
choices and nothing to do. It is the legacy of these times and these
lives which must spur the system to create better choices for people
with mental retardation of all ages.

# People with Challenging Behaviors

## Mat\'s Story: Joining The Community 

Mat is a 23 year-old man with autism and mental retardation. He lives in
a home with one roommate and

holds two jobs. One job involves cleaning at a local bar and restaurant
for an hour each morning. The

second job is delivering a weekly advertiser to 170 homes in his
neighborhood. In addition to

working in the community, Mat goes shopping, takes walks around a nearby
lake, goes to the movies, attends concerts and special events, and eats
at a fast food restaurant where he uses a wallet-sized communication
picture board to order his meal, independently.

Mat hasn\'t always been so integrated into his local community. In the
past he engaged in a number of

challenging behaviors including removing pictures from the wall, taking
down drapes and ripping them,

dismantling his bed, ripping his clothing, breaking windows, smearing
his bowel movements on objects,

urinating on his clothing, hurting others, stripping naked and other
similar behaviors. For almost one

entire year Mat refused to wear clothing and spent most of his time
wrapped in a blanket. He would often cover his head with the blanket and
lay on the couch for hours. He frequently stripped in community
settings, on those few occasions when staff were able to coax him to go
out.

After this had continued for months, the assistance of a behavioral
analyst was sought. An analysis of the function that the behaviors
served revealed that Mat\'s stripping and subsequent refusal to wear
clothing were the result of his attempt to exert control over his
environment, primarily to escape or avoid

undesirable events. For this reason, the behavior analyst suggested not
focusing directly on the issue of

wearing clothing, but rather addressing the development of a
communication system for Mat. Mat was reported to know over 200 signs,
however, he was rarely observed to use the signs spontaneously. When he
did sign, others in his environment were unable to interpret his
signing. Consequently, the behavior analyst and a consultant in
augmentative and alternative communication suggested that a
communication system using pictures or symbols be implemented to
supplement his existing system.

The support program that was developed for Mat had two main components.
The first was to enhance his communication and choice-making skills, and
the second was to provide opportunities for him to

participate in activities that were motivating and required him to wear
clothing.

To address communication and choice-making skills, several photographs
were taken of people Mat knew and had worked with, activities he liked
or was required to engage in (e.g. watching MTV, go to

McDonald\'s, shave, take a shower, etc.), and a variety of objects (e.g.
lotion, pop, cookies, etc.). Then a

minimum of four times each hour, Mat was presented with a choice. Mat
would then pick one of the

pictures, and staff would help him complete whatever activity he had
chosen. Soon he had over 130

photographs in his communication system. The photographs were mounted on
hooks in the hallway of the house where he lived, ensuring he had easy
access to them. Over time, staff reported that Mat began

spontaneously using some of the pictures to request items. He would, for
example bring staff the photo for a Diet Pepsi to request a Diet Pepsi.
So the communication served to help in his ability to make his wants and
needs known as well as help him understand choices presented to him.

While Mat\'s communication system was being developed, staff were also
trying to indirectly address his refusal to wear clothes by capitalizing
on the fact that he seemed to genuinely like to go out into the

community. Staff would periodically encourage Mat to dress. On those
occasions when he would dress, he was then able to participate in a
community activity that was reinforcing for him. The length of these

outings was gradually increased.

As time went on, staff tried to increase the amount of time Mat was
dressed at home by requiring him to

wait for short periods of time once he was dressed to go out in the
community. For example, if he indicated that he wanted to go to the
store, he was encouraged to get dressed before he could go. Once he was
dressed, staff would say, \"Mat, I have to do these dishes quickly
before we go. Why don\'t you just watch MTV, and we\'ll be ready to go
in just a few minutes.\" Staff employed similar \"stalling\" techniques
once Mat returned from a community outing. For example, after returning
home from the store, he was encouraged to help carry in the bags of
groceries and to put them away. Staff continued to implement these
stalling and delaying techniques over an eleven month period, gradually
increasing the amount of time he would remain clothed.

Mat now wears clothes an average of 17 hours a day and during the past
year he has not attempted to undress while in the community. This is not
to say his challenging behaviors have disappeared. He still

experiences periods when many of these behaviors escalate. But now,
these periods generally last only

days, not months. And staff now feel more confident in their ability to
implement strategies that have been successful in the past. Perhaps most
importantly, Mat\'s challenging behavior no longer stands in the way of
his full participation in the local community.

> *---adapted from \"Joining the Community\" by Laura Piche, Paula
> Krage, and Cindy Wiczek pg. 3 &18, IMPACT: Feature Issue on
> Challenging Behavior 4(1) (1991).*

People with challenging behaviors have been served in community
programs, at integrated worksites, at

home and in the public schools with varying success. Challenging
behaviors are those that are disruptive

to others or those that in some way limit or harm the person who is
participating in them. Some behaviors are self-directed (e.g. repeatedly
banging one\'s head against hard surfaces, biting one\'s finger, running
away), other behaviors are directed at others or the environment (e.g.
breaking dishes, hitting others, screaming inappropriately). When these
types of actions are frequent and severe they can make it hard for the
person to learn new things and to \"fit in\" with others.

People who often display challenging behaviors are less likely to be
accepted in regular classrooms, at

integrated work sites, and in homes in the community, and it is often
more difficult to recruit and maintain staff to work with these
individuals. Because of their behaviors, these individuals are at risk
of repeated and lengthy stays in institutions or psychological
evaluation units of hospitals. In fact, according to the *1997 Report on
Residential Services for Persons with Developmental Disabilities* 47.3%
of the people remaining in institutions are people who have significant
challenging behaviors. In order to continue to reduce the number of
people living in institutions, and to serve people with these behaviors
living in the community, attention to the best ways to prevent and
decrease challenging behaviors will be a critical component to State\'s
efforts for serving people with mental retardation and other
developmental disabilities.

Intervention for challenging behaviors has a long and sometimes
distressing history. In the past many of

the methods used were punitive and at times dangerous or harmful to the
person. In the attempt to control challenging behaviors people have been
denied access to food, shelter, and personal possessions. They have been
locked in rooms, inappropriately drugged, shocked, hit, pinched, sprayed
with caustic substances such as lemon juice, and kept in strait jackets
or other restraints for hours at a time. These treatments are
incompatible with the dignity, respect, and preservation of human rights
which are considered essential in providing supports today, but
unfortunately some of these methods continue to be used.

Once it became unacceptable to use methods which were painful or
demeaning on people who displayed

challenging behaviors, new ideas and interventions developed. Eventually
many laws, regulations, and

policies were developed which prohibited and strictly monitored the use
of aversive (or punitive)

procedures and asserted people\'s rights to fair treatment, choice, and
access to their environment and

personal items. One method which was given much attention as an
alternative to aversive methods was

positive reinforcement of desired behaviors that were incompatible with
the unwanted behavior. For

instance a person who hit others might be given an edible treat if they
were able to go for a certain amount of time without hurting others.
While this is a more acceptable and humane way of dealing with

challenging behaviors it also has drawbacks. It is sometimes difficult
to provide sufficiently motivating

reinforcement when arbitrary limits on a person\'s environment are no
longer considered acceptable. For

instance, rewarding a person with a nice dessert after dinner for
showing good table manners isn\'t

compatible with the idea that people have a right to food whether they
are perfectly behaved or not.

Ultimately many people began to acknowledge that some of the commonly
used modification techniques

based on strict concepts of behaviorism (punishment and rewards) were
only minimally successful and

sometimes completely backfired, causing the person to become more likely
to engage in unwanted

behaviors. Service providers and behavior specialists alike began to
re-think how they could stimulate

desired behaviors in people who were behaving in unwanted ways.

The missing component to these methods of trying to control unwanted
behaviors was an acknowledgment and understanding of the function that
the behavior served for the person. Without knowing what motivated the
person to act in these ways, behavioral programs were a stab in the
dark. Often, the underlying reason for the person to engage in the
unwanted behavior was so strong that no matter how horrendous the
punishment or how great the reward, people continued to exhibit the
undesired behavior.

There are a number of reasons why a person may participate in
challenging behaviors. Communication

and control of the environment are two primary motivations. People who
can not tell others in an

appropriate way what they want or don\'t want are more likely to act in
inappropriate ways. If they are

uncomfortable in their environments or do not have opportunities to make
choices about what they do, they may express their frustration in
harmful ways.

In many ways, the traditional services provided to people with mental
retardation and related conditions

have increased the chance that people will behave in unwanted ways. Many
service settings give people

little choice in the most common matters of life including what they
eat, where they eat, when they will

shower or bath, how they spend their money and what clothes they wear.
Although many people with

disabilities have complied to this lifestyle, others have not.

When a person doesn\'t want to shower in the evening, but this was the
time set aside by staff, typical

strategies to get the person to comply with this schedule have been to
persistently pester the person and

offer rewards if he or she showers on time. In many service settings it
is still considered radical thinking to allow the person to choose a
time during the day which is more preferable. In fact, in some settings
it is likely that a behavior modification program would be put in place
without anyone thinking to check for a problem such as monitoring the
water temperature to see if it\'s a time when the water heater has been
drained and the shower goes cold half way through. People in these
situations who become angry or frustrated and retaliate by yelling,
hurting themselves or threatening others are unfortunately often

considered to exhibit \"challenging behaviors.\"

While communication limitations and the need for control are often the
root of challenging behaviors it is

not always clear what the person is trying to communicate. A behavior
specialist can work with support

people to determine what causes the person to display the unwanted
behavior.

Sometimes, especially if the person has minimal communication skills or
additional conditions like mental illness or autism, it can take a good
amount of investigation and observation to accurately discover the
person\'s motivation for engaging in the challenging behavior. Sometimes
the original cause is long gone and the person has simply continued the
behavior as a means of getting needed attention or stimulation. Other
times the cause may be imperceptible to others, as may happen if a
person hears voices due to mental illness or becomes suddenly
disoriented and confused about where he or she is. People with autism
and related conditions may easily become over-loaded by sights, sounds,
smells or changes in the environment that are insignificant to people
without this disorder.

Once the function of the behavior is clearly understood a plan for
decreasing the problem behavior and

increasing desired behaviors can be put in place that has a good chance
of success. By helping people find new ways to express themselves and
then by helping them act upon their wishes problem behaviors

decrease.

Good behavioral supports do more than simply let people refuse to
participate in activities. They start with a deeper understanding of why
the person refuses to participate. For instance while most adults do
feel that they \"have to\" work (or maintain a home, or take care of the
dog), they do so with a sense of

choice. Many people will say they don\'t have a choice about working,
but they do, at minimum, have choices about what types of jobs they will
accept, the location of the job, the hours they work, and when they will
take sick leave or vacation. Similarly at home they can choose to do the
dishes right after dinner, later that night, the next morning or even
eat from paper plates and avoid dishes altogether.

A person who lives in a residential program and goes to school or a
vocational program during the day

very often doesn\'t have these choices. Every part of every day may be
structured by others. Most often

they are required to live in the same house---maybe even the same
room---with people that are selected by someone else. Household chores,
meal times and even bedtimes are set to accommodate the smooth

functioning of the home. At work or school similar demands are placed on
the person throughout the day. Jobs and activities are decided by
others. People not receiving services who decide to find a job in the
afternoons because they like to sleep late in the morning can still be
considered industrious. A person receiving services who prefers to sleep
late in the morning is often considered lazy or non-compliant.

What about the student that won\'t sit in his or her chair? The chances
of getting a child to remain in a chair for several minutes at a time,
day after day, when they have no idea why they should sit in the chair
is not very likely, yet people with mental retardation are often
expected to do just that when \"integrated\" into typical classrooms.
Sitting in a chair to listen to a lecture on something which isn\'t
understandable is

hardly motivating. Neither is just \"being good.\" It is a teacher\'s
responsibility, with support, to present

classroom curriculum in a way that is meaningful to all the students in
a class. A student who will not sit

quietly in a row of desks may stay put for quite awhile at a table where
they are working with other

students to create a project.

Family and paid staff who successfully support people who have
challenging behaviors need a number of

supports themselves, including the following:

-   *Proper training.* In many places proper training for serving people
    with challenging behaviors has been learning how to restrain a
    person properly and avoid getting hurt. This may be essential
    training for some people, however it should be considered only one
    of many training needs for working with people with challenging
    behaviors. People need training on how to understand and respect the
    functions of behaviors, how to provide meaningful choices, how to
    protect and respect rights, how to proactively avoid and de-escalate
    situations in which the behavior may be exhibited and how to
    communicate effectively and stimulate wanted behaviors.

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-   *Access to technologies and professional advice.* Direct support
    people need the advice of behavior specialists to help solve
    problems. They need materials, information and devices useful in
    augmenting communication and training on how to use them.

-   *On-going support, encouragement and recognition.* Eliminating or
    reasonably diminishing challenging behaviors can be a long process,
    sometimes taking years, particularly when the person has used this
    form of behavior for many years and it is well established. Paid and
    unpaid support people need to have support from other peers,
    parents, or professionals for continuing with this work. Paid
    support people should be recognized with increased pay or other
    benefits such as more time off because of the special skills it
    takes to provide this type of support. Families may need access to
    competent and caring respite services.

Many people with challenging behaviors have already benefited from newer
methods of understanding,

preventing and responding to challenging behaviors. Continued efforts to
research and evaluate the

effectiveness of intervention methods is critical since many of the
people waiting for community services

have challenging behaviors and students with these behaviors are at high
risk for being kept out of

inclusive classrooms. In addition, training in these methods is
necessary for families, teachers, and other

support people if progress is to be made.

# The Use of Assistive Technology

### Technology and Self-Esteem

> *Our son has multiple disabilities. Once we accepted that fact, we
> determined that we would do everything in our power to develop in him
> a positive self-esteem. We want him to view himself as a worthy
> person, to trust his own thinking, and to develop skills to be as
> independent as possible. This is not only our goal, but also the goal
> of parents and educators of other young children with special needs.*
>
> *Building this self-confidence is a process of continual, supportive
> feedback from human beings in the child\'s environment. It also
> requires using a wide variety of tools to enhance the child\'s
> interests and abilities. Technology is one tool which can develop self
> esteem in children with disabilities.*
>
> *By contributing to the functioning of the family or the classroom,
> children with disabilities build their self-esteem. At home a switch
> connected to an appliance allows a child to turn on the blender and
> help make supper. At school, a communication device can say, \"My
> turn, please,\" when the child would like to participate in classroom
> activities.*
>
> *Computers with carefully selected software, and adaptive devices, if
> necessary, allow children to control their learning environments and
> to learn. The resulting sense of success fosters self-esteem.*
>
> *As parents, we desire our children with and without disabilities to
> view themselves as worthy individuals. We trust that the people around
> them will assist us in building their self-esteem. Technology is a
> tool that can help by allowing children to be part of the family or
> classroom and give them a means to experience success in learning.*

By Brenda Carlson. Reprinted with permission from The Computer Monitor.
(1996). Volume 5, Minneapolis MN: PACER Center 4826 Chicago Ave. South,
Minneapolis, MN 55417-1098 (612) 927-2966, (612) 827-3065 (TTY)

What do a power wheelchair, a fork with a built up handle, and a
computer with a program that reads text

out loud have in common? They are all assistive technology devices. An
assistive technology device is

defined as \"any item, piece of equipment, or product system, whether
acquired commercially, off the shelf, modified, or customized, that is
used to increase, maintain, or improve functional capabilities of

individuals with disabilities,\" according to the Technology-Related
Assistance for Individual\'s with

Disabilities Act (better known as the Tech Act). This law acknowledges
the importance of assistive

technology devices and services for some people with disabilities to
lead full lives.

Assistive technology ranges from the inexpensive and simple, such as
books on audiotape, to the expensive and complex, such as computerized
communication devices. Assistive technology can help children with
disabilities participate in regular classrooms, help adults work faster
and earn more money, and reduce the amount of dependence a person has on
other people for self-care, homemaking, and transportation.

Assistive technology can make a real difference in a person\'s life. For
older adults it may keep them from having to move to nursing homes by
providing them with enough independence to keep working and taking care
of basic needs. For children it may help them participate in activities
with peers who do not have disabilities by letting them communicate
better or play an active role in projects and games.

For people with communication barriers the availability of alternative
or augmentative communication

devices can make a dramatic change in their lives. The inability to
express even simple choices in a

manner that others can understand can lead to extreme frustration and
depression. For many people having access to a viable form of
communication can greatly increase their opportunities and life
satisfaction. While some methods of communication technologies are very
expensive, others can be as inexpensive as books with pictures of
recognizable objects, activities, people and places which a person uses
to communicate with by pointing to the correct pictures.

Despite acknowledgment that assistive technology can be a vital part of
helping people with disabilities

meet their highest potential, there are still a number of barriers to
providing people with appropriate

assistive technology devices:

-   *Finances.* Some forms of equipment are very expensive. Equipment
    usually must be customized to the particular person. This means that
    there is not a large market which would help to keep costs down.
    Funding can sometimes be secured through existing projects related
    to assistive technologies, loans from commercial banks and credit
    unions, health insurance, or Medicaid. However, the coordination and
    the availability of these types of funding can greatly vary. Because
    funding is usually established based on \"medical necessity\" or as
    part of an educational plan, working with medical professionals and
    teachers to help establish the need for a device can be critical.

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-   *Knowledge.* People with disabilities, their advocates, and service
    professionals need more information about what types of technologies
    are available, training on how to use the technologies, and
    information on how to pay for technologies when they find them.

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-   *Creativity.* Not all assistive technologies are expensive or
    complicated. Books on tape are often available through book stores
    or public libraries. Someone with access to a typical tool box and a
    minimal amount of skills can create technologies that help people
    use their environment to a greater extent. For instance a fingernail
    clipper can be mounted on a board to allow someone with mobility
    limitations to cut his or her own fingernails. Support people need
    training, guidance and information on how to look creatively at a
    person\'s abilities and limitations and make changes or adaptations
    that increase a person\'s independence and ability to fully use his
    or her environment.

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-   *Access.* Even if people know what they want, finding the right kind
    of equipment can be difficult. These adaptive devices are very
    specialized and must conform to the needs of the individual to be of
    use. The creation and maintenance of resource networks on assistive
    devices like ABLEDATA available through the World Wide Web
    (http://www.abledata.com), minimize this problem.

While many people are already benefiting from the use of assistive
technologies many more are waiting.

Coordination of efforts and an increased emphasis on funding for
appropriate devices needs to continue.

Patience is an asset since many of these items can be funded if the
person or their advocates are willing to keep trying and to use the help
of family physicians, teachers, and other professionals in obtaining the

devices. The outcome for people with disabilities who have access to
helpful technologies is an enhanced ability to communicate with others,
and to participate in their own care, community activities, employment,
and education.

**Culturally Competent Supports**

### Fred Sultansade: Supporting Diversity

*"My name is Fred Sultansade. I am 42 years old. I live in the East
Orange Group Home. The most*

*important things to me are money, my personal things, having a good
time playing baseball and basketball, and going to the mosque to pray.*

*When my father was living he was Islamic. He was from Azerbaijan, on
the Caspian Sea. I have pictures of him. My father read Arabic.*

*I used to live in another town. I used to dance with the girls there,
exercise, and play checkers. I was*

*thinking about Allah. I had a funny feeling I was going to the mosque
when I was there.*

*Now I live at the East Orange Grove Home. When I first came here, I
would listen to the \"Nation of Islam\" on the radio. Reverend Jesse
helped me by finding a special mosque for me. Every time he\'d be
waiting right there for me. I go every Monday, Wednesday, and Friday. If
it\'s nice weather I always go to the mosque. I stay for 15 minutes, 30
minutes or 45 minutes. I listen to the English and Arabic version.*

*I like going to the mosque because I can express myself by saying,
\"Salam A\'lechem, A\'lechem Salam.\" I*

*say blessings in Arabic. Reverend Jesse taught me how you have to
\"wuudo\" or cleansing (my father used to do that). He taught me I have
to wash my hands, wash between my toes, on the left and right side, then
you make prayers. I wear the white robe that Reverend Jesse bought me.
When I go to the mosque, I say, \"Salam A\'lechem\" to the other people
and they say, \"A\'lechem Salam\" to me. We talk to each other.*

*Reverend Jesse gave me a new name. My name is Mohammed Rasu. It means
\"great one.\" I was called*

*Fridun when I was born. My Dad was mad when I changed it to Fred. When
I go to the mosque, people*

*call me Mohammed Rasu. They are happy to see me.*

*I just want to pray for the whole wide world because I think it needs a
prayer."*

From "Finding a Spiritual Family" by Fred Sultansade (Mohammed Rasu), in
IMPACT: Feature Issue on Supporting Diversity Volume. (1996). 9 (3).

America is a land of great cultural diversity. This diversity has
benefits as well as challenges. While most people in the United States
enjoy trying and learning about the food, the celebrations, and the
history of various ethnic and cultural groups, there are still a number
of barriers to having a true multicultural society. For the most part
mental retardation and other disabilities affect a similar percentage of
people from all cultures, yet in many ways, the services to people with
mental retardation and related conditions have been defined by Western
European culture and have been slow to make necessary changes which
would make services accessible and beneficial to people outside of the
dominate culture. Current demographic trends in the United States
suggest that the numbers of people from cultural backgrounds, other than
Western European, will be growing proportionately to the whole
population. It is also estimated that a significant number of these
children will grow up in families who do not have enough money and
resources to meet all their needs.

Across America, many businesses, schools, churches, social service
agencies, and even the branches of the military have provided diversity
awareness and sensitivity to their employees, recruits and students.

However, to truly be culturally competent, service providers must do
more than make employees aware of differences. They must help employees
value and understand these differences and give them the tools and
training to provide services in a way that is respectful of cultural
differences.

Federal legislation typically mandates that assessment and services be
provided in a way that takes into

account an individual\'s cultural orientation. However, caution must be
used to not use stereotypes or

general characteristic of an ethnic group in providing services. In
order to provide family and person-

centered supports, service providers must have an awareness of the
person\'s cultural upbringing and

preferences, as well as their personal circumstances. It is the
combination of these components that can

help service providers create supports that meet individual needs in a
culturally competent way.

Some areas where definitions and preference may differ from the dominate
culture include the following:

-   *Family*. The dominant Western European culture in America typically
    defines family in terms of parents and their children, with both
    parents usually having a comparable say in the choices that affect
    their child. In some cultures extended family plays a much greater
    role. Grandparents, aunts, uncles, and cousins, as well as parents
    and siblings, may make decisions or play a key support role in the
    family. One parent or the other may be a primary connection to
    services or a grandparent may be the family decision-maker. By
    making culturally-biased assumptions about how a family works and
    who is in a primary role in relationship to the person receiving
    services, providers can minimize the effectiveness of supports.

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-   *Disability.* How cultures define disability can vary widely. In
    some cultures a child with disabilities is seen as a sign of failure
    on the part of the parents, or as a punishment. Other cultures may
    see a child with certain disabilities as \"blessed\" or special.
    Some cultures simply do not have the same words or concepts for
    disability. In addition, normal behavior in some cultures, such as
    talking or interacting during movies or in church services, or not
    looking at or speaking directly to unfamiliar adults, may be
    perceived by the dominant culture as potential behavior problems or
    developmental delays when they are appropriate to the person\'s
    family or heritage.

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-   *Preferences.* People who receive services will have preferences in
    the food they enjoy or can tolerate, in the music they like, how
    they prefer to dress, the holidays they observe and how they observe
    them. These may have little relationship to the food selected by a
    dietitian working for a regulated facility or the music selected by
    the direct service staff on the workshop floor. Service Providers
    may offer options for staff to choose some of their own personal
    holidays but may not think about the needs of those receiving
    supports to make those same decisions.

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-   *Locality.* In the last two decades the trend in service provision
    has been to offer supports in the community. For people with a
    heritage outside of the dominant culture \"community supports\" may
    not yet be a reality. Many residential services are found in areas
    where the majority of people have a Western European heritage. The
    return to the community for people who spent time in regional
    treatment centers has very rarely been the return to their own
    communities (home towns, neighborhoods, etc.). Parents in search of
    family supports may find that they must travel out of their own
    neighborhoods and receive services from people who lack an
    understanding of their language, traditions, and beliefs.

Cultural competence in service provision does not happen by accident. It
takes a real effort on the part of service providers to examine their
own culture and related values and biases. It requires learning about

other cultures and having the skills to create individualized services
that respect the person\'s heritage and

particular circumstances. In order to become culturally competent a
service provider must be able to find

ways to remain open to continual learning and exploration of all ethnic
backgrounds. They must use or

develop assessment methods that are based on information gathered about
people in the individual\'s ethnic community. Connections with community
resources that exist in an individual\'s own neighborhoods should be
nurtured.

Creating a culturally competent service delivery system is more than
simply teaching professionals

from the dominate culture about other cultures. Active recruitment of
people from various ethnic/cultural groups and economic levels into jobs
supporting people with mental retardation, onto advisory boards, and at
all levels of professional service is essential. This may include the
necessity of looking at funding sources earmarked for transportation and
financial compensation to make active participation feasible. It will
also mean the service delivery system will have to have a real ability
for allowing this participation to go beyond \"tokenism\" and really be
prepared to make changes in services based on the input of those who
participate. In addition, more work should be done to stimulation and
support the development of provider agencies run by people from a
variety of cultural backgrounds.

Each State and the communities within them will have different needs. It
is important that the States take a look at the local demographics and
see how well these populations are being served. When underserved
populations are identified an assessment of why they do not use existing
services should be done. In addition a look at public awareness
materials and the cultural diversity of the service professionals should
be compared with the needs of the community to make sure they are
reflective of all the ethnic groups which need access to services.

# Improving Outreach to American Indians

#### The American Indian Rehabilitation Research and Training Center

The American Indian Rehabilitation Research and Training Center (AIRRTC)
was established in 1983 to

improve the quality of life for American Indians/Alaska Natives with
disabilities through conducting

research and training that: 1) results in culturally appropriate and
responsive rehabilitation services; 2)

facilitates American Indian access to services; and 3) increases the
participation of American Indians in

the design and delivery of rehabilitation services. The AIRRTC does not
provide direct rehabilitation

services to American Indians with disabilities. Instead, it trains
providers of rehabilitation services.

The training is developed based on information from annual surveys of
service providers about their needs in relation to improving services
for American Indians with disabilities.

In training for non-Indian providers, the following are presented as
some of the outreach strategies to

enable them to better serve American Indians:

-   Read about the American Indian cultures in your respective States,
    as well as gather information that provides an overview of
    lifestyles, sovereignty, treaties, employment, housing, tribal
    structure, and so forth. Through reading and gathering information,
    providers can develop an appreciation of the diversity among the
    American Indian tribes.

-   Provide American Indian individuals with clear written and verbal
    information about rehabilitation services both on and off
    reservations.

-   Consult with a linguist or nearby university that has an American
    Indian program for assistance in writing the information in the
    native language or culturally relevant language.

-   Develop or obtain a resource list of American Indian Organizations,
    American Indian Centers, schools, social service agencies, tribal
    service providers, community health representatives, or
    Tribal/Indian Health Services public health nurses. By visiting with
    those on the list or others who are American Indian, assistance can
    be found in developing an outreach plan.

-   Review the organization\'s written and unwritten policies on
    outreach services to American Indian tribes to identify flaws that
    can be corrected. American Indian advisors can assist in
    recommending outreach strategies that meet their community needs.
    Some agencies have hired American Indian technicians to serve as
    liaisons, assist with recruitment of consumers, and assist in
    developing culturally relevant services. It may also be desirable to
    subcontract with American Indian tribes to set up satellite offices
    that are responsible for outreach services. Attend American Indian
    events that are open to the public such as pow-wows, Indian rodeos,
    fairs, and American Indian lectures. This facilitates visibility of
    providers interested in American Indians and helps the providers
    better understand American Indian pride.

In addition to providing training to service providers, the Center
conducts research. A research project

focusing on the vocational rehabilitation of American Indian adolescents
and adults with fetal alcohol

syndrome/fetal alcohol effects (FAS/FAE) began in March, 1996. The
purpose of the project is to

determine what information and procedures are needed to enhance the
ability of counselors to address the rehabilitation needs of American
Indian adolescents and adults who have FAS/FAE. The term \"counselor\"
is used to refer collectively to vocational rehabilitation counselors,
independent living counselors, school counselors, school psychologists,
developmental disability case managers, job coaches, and other
rehabilitation professionals.

In all its' work, the AIRRTC recognizes the importance of fully
attending to cultural diversity in rehabilitation services. Although
American Indian people may represent less than one percent of the total
population in this country, they have as much diversity as the remaining
combined population (Hodgkinson, et al., 1990). There are 309 federally
recognized Tribes and 197 Alaska Native villages. There are over 250
different languages still spoken among Native People. To provide
culturally appropriate services for American Indians, providers,
researchers, and trainers must involve American Indian consumers in
identifying needs and priorities, and in designing, conducting, and
evaluating research, training, and services.

*Adapted from "Improving Outreach to American Indians" by Priscilla
Sanderson. IMPACT: Feature Issue on Supporting Diversity. (1996). Volume
9 (3). For information on the AIRRTC, a University Affiliated Program,
contact The Institute for Human Development, Northern Arizona
University, Flagstaff*

# Conclusion

All people receiving services to some extent need \"specialized
supports.\" More than ever people are

asking for supports that respect their individual preferences and which
are provided in the context of their own communities and in keeping with
their beliefs. Community providers will need to increase their ability
to provide supports to people with challenging behaviors and people who
are aging. In addition service providers will need to deal with issues
such as cultural competence, often ignored in the past
\"one-size-fits-all\" approach to services, with openness and an ability
to learn. As service providers work to meet those needs the use of
person-centered planning techniques will become increasingly important.

**Resources**

*The Supported Parenting Project (PPP) of Wisconsin.* A three year
project (1987-1990) with the purpose of providing intensive in-home
services to targeted families and providing information and technical
assistance to social service agencies about methods for supporting
parents with cognitive limitations. The following publications are
products of that project and can be ordered for a minimal charge from
The Wisconsin Council on Developmental Disabilities, PO Box 7851,
Madison, WI 53707. (608) 266-7826.

*Cultivating Competence.* (1991). D. Ullmer, S.K. Webster & M. McManus.
This book is a resource guide to thirty one models of support offered in
fifteen States to families headed by parents with cognitive
disabilities. \$3.00.

*Helping Parents Parent.* (1992). S. Heighway. This practice guide is
useful to anyone providing supports to families headed by parents with
cognitive limitations. \$3.00.

*Discovering the Parent\'s Language of Learning: An Educational Approach
to Supporting Parents with*

*Mental Retardation.* (1990). M. Sweet. This booklet describes an
approach that can increase the effectiveness of teaching to parents with
cognitive supports. \$2.00.

*Facing the Challenge.* (1990). J. Franz. This guide presents an
overview of the law and the working of the courts in the context of
typical difficulties faced by families headed by parents with cognitive
disabilities. \$3.00.

*Building the Foundation: Public Policy Issues In Supported Parenting.*
(1992). H. Mandeville, P. Snodgrass, M. Sweet and D. Ullmer. \$3.00.

*IMPACT feature issue, Supporting Parents Who Have Cognitive
Limitations.* (1998). This issue provides overview information and
profiles of successful programs and supports for parents who have
cognitive limitations. Available at the Institute on Community
Integration, University of Minnesota, 109 Pattee Hall, 150 Pillsbury
Drive, SE, Minneapolis, MN 55455. (612) 624-4512.

*The Clearinghouse on Aging and Developmental Disabilities* at the
University of Chicago has a number of resources available for people
interested in providing supports to older people with mental retardation
and other developmental disabilities. Unless otherwise noted, the
following resources can be ordered from: RRTC Clearinghouse on Aging and
Developmental Disabilities, Institute on Disability & Human Development
M/C 626, 1640 W. Roosevelt Road, Chicago, IL 60608-6904: (312) 413-1860
(V), (312) 413-0453 (TTY), (312) 996-6942 (fax), (800) 996-8845 outside
of Chicago.

*Making Choices as We Age: A Peer Training Program*. (1996). A
curriculum for training persons with disabilities and their co-trainers
on how to teach other adults with mental retardation about:
Choice-making, rights and responsibilities, how to make healthy choices,
and about things to do in their free-time. Cost: \$45.00.

*Models for Interagency Planning for Long-term Funding of Small-Scale
Community Living Options for Older Persons with Developmental
Disabilities.* (1992). Cost: \$10.00.

##### Belonging and Becoming: What Families Need to Know about Aging and Developmental Disabilities. (1993). Fact sheets for families on the physical, psychological and social issues related to the aging of individuals with developmental disabilities. Cost per unit: \$3.00. 

*Peer Companion Model Implementing Community Integration for Older
Persons with Developmental Disabilities.* (1992). Addresses recruitment
of non-handicapped senior volunteers to work with older person with
developmental disabilities to facilitate access to community activities.
Cost: \$10.00.

*The Rehabilitation Research and Training Center on Aging with Mental
Retardation.* Check out publications and information at website:
http://www.uic.edu/orgs/rrtcamr/index.html

*Facilitating Future Planning and Transitions Out of the Home.* (1994).
This book offers information on such important topics as aging parents,
living outside the system, individual development, planning transitions,
community services, and research challenges. Order this book from: The
American Association on Mental Retardation (AAMR) publications center,
PO Box 25, Annapolis Junction, MD: 20701-0025. (301) 604-1340. Cost:
\$35.00 (non-members), \$29.75 (members).

*Autism Society of America.* Check out the Resource listing in the
website. This listing has contacts and titles for organizations, books,
journals, videos and audio tapes relating to challenging behaviors.
http://www.autism-society.org/packages/challenging-behavior.html#resource.

*Why Does Samantha Act Like That? A Positive Behavioral Support Story of
One Family\'s Success.* A family tells the story of how challenging
behaviors were overcome through positive behavioral support. The book is
\$5.25; the video \"Samantha\" is \$30. Contact: The Family Connection,
Beach Center on Families and Disability, University of Kansas, 3111
Haworth Hall, Lawrence, KS 66045, or call (800) 854-4938 for behavioral
issues; (913) 864-7600 TTY; (913) 864-7600 FAX; or e-mail
family@dole.lsi.ukans.edu.

*Learning to Listen.* This interactive CD-ROM is useful for
understanding the reasons why someone might engage in challenging
behaviors and helps people begin to understand how to listen to the
person and respect their choices. In IBM and Macintosh format. Available
at the Institute on Community Integration, University of Minnesota, 109
Pattee Hall, 150 Pillsbury Dr. SE, Minneapolis, MN 55455. (612)
624-4512.

*IMPACT Feature Issue on Challenging Behavior.* (1991). This issue
addresses considerations and research findings related to quality of
life and community integration of persons with challenging behaviors, as
well as areas for future research and training. Available at the
Institute on Community Integration, University of Minnesota, 109 Pattee
Hall, 150 Pillsbury Dr. SE, Minneapolis, MN 55455. (612) 624-4512.

*Washington Assistive Technology Alliance.* Check out the website at
http://weber.u.washington.edu/\~atrc/. WATA

is a project funded by the National Institute of Disability and
Rehabilitation Research and mandated by the Technology Related
Assistance for Individuals with Disabilities Act (1994). The website has
links to further resources and information concerning assistive
technologies.

*ABLEDATA* is a nationwide source of information on more that 23,000
assistive technology items available from domestic and international
sources. You can reach them at: 8455 Colesville Road, Suite 935,
Silverspring, MD 20910: (800) 227-0216, or (301) 608-8998 (V), (301)
608-8958 (fax), or checkout their website at:
http://www.abledata.com/index.htm.

*Assistive Technology Sourcebook.* (1990). *Assistive Technology: A
Funding Workbook.* (1991). Guides to assistive technology including
information resources, equipment evaluation, personal care, education,
employment, recreation, mobility, computer access, and funding.
Available at: RESNA Press, 1101 Connecticut Ave. NW, STE. 700,
Washington, DC 20036-4303. (202) 857-1199.

*IMPACT: Feature Issue on Assistive Technologies.* (1995). This issue of
IMPACT describes efforts to utilize consumer direction, public policy,
creativity, energy, and professional know-how in the pursuit of
opportunities for community inclusion, social and economic contribution
and self-determination of people who have 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.

*Cultural Competence in Screening and Assessment: Implications for
Services to Young Children with Special Needs Ages Birth through Five.*
(1991). This booklet discusses implications of cultural diversity on
screening and assessment of young children who may have developmental
delays or health related needs. Available at: PACER Center, 4826 Chicago
Avenue South, Minneapolis, MN 55417-1098: (612) 827-2966 (Voice or TDD),
FAX (612) 827-3065.

*Cross Cultural Supports for People with Disabilities and their
Families.* (1995). A training curriculum designed to assist people in
understanding themselves, embracing difference and in moving toward
being culturally competent. To obtain a copy, contact the Institute on
Community Integration, University of Minnesota, 109 Pattee Hall, 150
Pillsbury Dr. SE, Minneapolis, MN 55455: (612) 624-4512.

*A Workbook for Your Personal Passport.* (1996). This workbook is
designed to assist people with developmental disabilities and
facilitators of person-centered planning approaches in developing a
person-centered individualized plan. To obtain a copy, contact: Allen,
Shea & Associates, 1040 Main Street, Suite 200B, Napa, CA 94559.
(707)258-1326.

*Reach for the Dream! Developing Individual Service Plans for Persons
with Disabilities*. A manual on integrating the development of
individual written plans such as IEPs, ISPs and IWRPs with futures
planning processes. Available through: Training Resource Network, PO Box
439, St. Augustine, FL 32085. (904) 823-9800; fax (904) 823-3554.

*Capacity Works: Finding Windows for Change Using Personal Futures
Planning.* This book is written for people with disabilities, their
families and the people who wish to talk with them toward a more hopeful
future. Available through: Training Resource Network, PO Box 439, St.
Augustine, FL 32085. (904)823-9800; fax (904)823-3554.

*PATH: A Workbook for Planning Positive Possible Futures*. Uses an
eight-step process to help people figure out life goals; build their
strengths; include others in a personal support network; and develop a
commitment to action. Contact: The Centre for Integrated Education and
Community, 24 Thorne Crescent, Toronto, Ontario, Canada MSH 2S5: (416)
658-5363 or fax (416) 658-5067.

*Person Centered Planning: How do we know when we are doing it?* An
overview on a variety of approaches to person-centered planning and what
is common to all of them. You can obtain a copy from: Oregon Transition
Systems Change Project, Oregon Dept. of Education, Office of Special
Education, Salem, OR. (503)378-3598.

*It\'s Never Too Early, It\'s Never Too Late!* (1988) The goals of
Personal Futures Planning are to: help someone develop a picture of what
the future will look like for her or him; to build a circle of people
who will help support that picture or plan; and, to take some first
steps. You can get a copy of this booklet (1988) from the Governor\'s
Planning Council on Developmental Disabilities, 300 Centennial Building,
658 Cedar St., St. Paul, MN 55155. (612)296-4018 or fax (612) 297-7200.

*My Life Planner; Letting Go; Dream Deck.* The Planner and Letting Go
provide a variety of activities to assist people with developmental
disabilities and family members in planning for the future and figuring
out more about their preferred lifestyles, interests and preferences.
The Dream Deck is a visual approach to finding out more about preferred
activities and interests. For information on purchasing these and other
great documents, contact New Hats, Inc., PO Box 57567, Salt Lake City,
UT, 84157-7567. (801) 268-9811.

*MAPS (Making Action Plans).* MAPS helps bring together the key people
in someone\'s life to develop a support plan. For more information on
how to use the MAPS process, you can find out about available texts,
videotapes an training by writing The Centre for Integrated Education
and Community, 24 Thorne Crescent, Toronto, Ontario, Canada M6H 2S5.
(416) 658-5363 or fax (416) 658-5067.

*Extended Family Support Project.* The 'Homebuilders' project provides
assistance to families at risk of having a child placed out of the home
and includes families with parents who are mentally retarded or have
other developmental delays. Contact the Project Coordinator, Behavioral
Sciences Institute, 181 South 333rd Street, Suite 200 Federal Way, WA
98003. (253) 927-1550; fax (253) 838-1670.

**References**

American Association on Mental Retardation. (1992). Mental Retardation:
Definition, Classification, and

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

American Association of Retired Persons. (1994). Facts about adult
children with developmental disabilities

and their families. Washington, DC: American Association of Retired
Persons.

Anderson, D., Polister, B. Kloos, E., Heller, T., & Roberts, R., (Eds.).
(1993). IMPACT: Feature Issue on Aging and Developmental Disabilities.
Minneapolis, MN: Institute on Community Integration, University of
Minnesota.

Anderson, M., Goldberg, P.F. (1996). Cultural Competence in Screening
and Assessment: Implications for services to young children with special
needs ages birth through five. Minneapolis, MN: PACER Center.

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.

Brammer, L. (1993). The Helping Relationship: Process and Skills (5th
ed.). Boston: Allyn & Bacon.

Brickman, P., Kidder, L., Coates, D., Rabinowitz, V., Cohn, E. & Karuza,
J. (1983). \"The dilemmas of helping: Making aid fair and effective.\"
In Fischer, J., Nadler, A., & DePaulo, B. (eds.), New Directions in
Helping, 1, 18-51. New York: Academic Press.

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.

Feldman, M. A., (1994). \"Parenting Education For Parents With
Intellectual Disabilities: A Review of

Outcome Studies.\" Research in Developmental Disabilities (15) 299-332.

Filler, J. (1996). \"A comment on inclusion: Research and social policy.
In Society for Research in Child

Development Social Policy, Report 10 (2&3), 31-33.

Hayden, M.A., Abery, B.H. (Eds). (1994). Challenges for a System in
Transition: Ensuring Quality Community Experiences for Persons with
Developmental Disabilities. Baltimore, MD: Paul H. Brookes Publishing
Co.

Hayden, M., (Ed) Anderson, D., Moran, P.J. (1993). Health Care Issues in
Residential Services for Older Persons with Developmental Disabilities.
Minneapolis, MN: University of Minnesota: Policy Research Brief 5(3).

Hieghway, S.M., Kidd-Webster, S., Snodgrass, P.(1988). Supporting
Parents with Mental Retardation, Children Today. November-December.

Hodgkinson, H.L., Outz, J.H., & Obarakpor, A.M. (1990). The demographics
of American Indians: One percent of the people, fifty percent of the
diversity. Washington, D.C.: Institute for Educational Leadership,
Inc./Center for Demographic Policy.

Hope, L.N., & Yoder, M. (1996). Family Support in Inner-City Atlanta. In
B. Horton, M. McBride & B. Shoultz, IMPACT: Feature Issue on Supporting
Diversity. Minneapolis, MN: Institute on Community Integration,
University of Minnesota.

Lakin, K.C., (Ed). (1996). Research on Community Integration of Persons
with Mental Retardation and Related Conditions: Current Knowledge,
Emerging Challenges and Recommended Future Directions. Paper prepared
for the National Institute on Disability and Rehabilitation Research
(NIDRR).

Larsen, D. (1996). "A Journey of Understanding". In B. Horton, M.
McBride & B. Shoultz, IMPACT: Feature Issue on Supporting Diversity.
Minneapolis, MN: Institute on Community Integration, University of
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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.

Massachusetts Developmental Disabilities Council (ND). Promoting
Effective Parenting: A Manual For Training Parents With Cognitive
Limits. Boston MA: Massachusetts Developmental Disabilities Council.

McBride, M. (1996). \"Empowering Families to Manage Services.\" In B.
Horton, M. McBride & B. Shoultz, IMPACT: Feature Issue on Supporting
Diversity. Minneapolis, MN: Institute on Community Integration,
University of Minnesota.

Mount, B. (1992). Person-Centered Planning: Finding Directions for
Change Using Personal Futures Planning. New York, NY: Graphic Futures,
Inc.

O\'Brien, J. & Taylor, S. (1996). \"Developing Individualized Supports
While Closing Institutions.\" Spotlight 1(2), Spring 1996, excerpted
from Impact 9(1), Winter 1995/96.

O\'Brien, J., & O\'Brien, C. (1993). \"Contrasting Approaches.\" In
Policy Bulletin No. 3. Syracuse, NY: The Center on Human Policy.

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Retarded. Baltimore, MD: Paul H. Brookes Publishing Company.

**Glossary**

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

**Assistive technology device:** Any item, piece of equipment, product
or system, whether acquired

commercially, off the shelf, modified or customized, that is used to
increase, maintain or improve

functional capabilities of an individual.

**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).

**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 as a person who has
a problem which needs professional help.

**Culturally competent supports:** Supports which go beyond simply an
awareness that there are different cultural perspectives to having a
number of sophisticated methods for respecting and infusing preferred
cultural references into each person\'s supports.

**Dominate culture:** In multicultural societies, the cultural practices
which are the basis for judging actions and establishing public
traditions. Usually the dominate culture is so much a part of the
societies\'

perspective that it is \"invisible.\" Behaviors which are contrary to
the perspective of the dominate culture

are usually considered inappropriate or wrong, even when they are not
harmful.

**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) enhances the capacity of families
to provide supports at home, and (d) realizes some cost savings related
to promoting care at home over out-of-home options.

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

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

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

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

retardation and other developmental disabilities live.

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

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

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

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

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

in them.

**Least Restrictive Environment:** A clause in IDEA which mandates that
children receive education in the least restrictive settings possible.
Frequently referred to as LRE.

**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.

**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.

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

themselves if they did not have a disability.

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

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

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

developed for people receiving services.

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

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

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

staff.

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

which the person needs tailoring services to meet individual needs.

## **Common Acronyms**

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

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

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

Developmental Disabilities

**ADA** - Americans with Disabilities Act

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

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

**ARC** - Association for Retarded Citizens

**ASO** - Administrative Service Organization

**BIA** - Bureau of Indian Affairs

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

**CEC** - Council for Exceptional Children

**COBRA** - Consolidated Omnibus Budget Reconciliation Act

**COLA** - Cost of Living Allowances

**CP** - Cerebral Palsy

**CSLA** - Community Supported Living Arrangement

**DAC** - Developmental Achievement Center

**DD** - Developmental Disabilities

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

**DHS** - Department of Human Services

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

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

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

**ECFE** - Early Childhood Family Education

**ED** - Emotionally Disturbed

**EEOC** - Equal Employment Opportunity Commission

**ELP** - Essential Lifestyle Plan

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

**EPS** - Early and Periodic Screening

**FAPE** - Free Appropriate Public Education

**FAS** -- Fetal Alcohol Syndrome

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

**FY** - Fiscal/Budget Year

**GAO** - General Accounting Office

**HCBS** - Home and Community Based Services

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

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

**HMO** - Health Maintenance Organization

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

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

**IDEA**- Individuals with Disabilities Education Act

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

**IQ**- Intelligence Quotient

**LEA** - Local Education Agency

**LRE** - Least Restrictive Environment

**LTC** - Long Term Care

**MA** - Medical Assistance

**MH** - Mental Health or Mentally Handicapped

**MI** - Mental Illness

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

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

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

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

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

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

**OT** - Occupational Therapist

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

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

**PCA** - Personal Care Attendant

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

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

**PCP**- Person-Centered Planning

**PFP** - Personal Futures Planning

**PKU** - Phenylketonuria

**PL** - Public Law

**PT** - Physical Therapist

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

**QMRP** - Qualified Mental Retardation Professional

**RFP** - Request for Proposal

**RRTC** - Rehabilitation Research and Training Center

**RSA** - Rehabilitation Services Administration

**SABE**- Self-Advocates Being Empowered

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

**SILS** - Semi-Independent Living Services

**SLA** - Supported Living Arrangements

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

**SNF** - Skilled Nursing Facility

**SSA** - Social Security Administration

**SSDI** - Social Security Disability Insurance

**SSI** - Supplemental Security Income

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

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

**TDD** - Telecommunications Devices for the Deaf

**VR** - Vocational Rehabilitation

**WAC** - Work Activity Center

PCMR CITIZEN AND EX-OFFICIO MEMBERS

Valerie J. Bradley

Chair, President's Committee on Mental Retardation

Washington, D.C.

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

**PCMR STAFF**

**Administration for Children and Families**

**President's Committee on Mental Retardation**

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

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

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

**Phone: 202-619-0634**

**FAX: 202-205-9519**

**Gary H. Blumenthal**

Executive Director

**John L. Pride**

Deputy Executive Director

**Laverdia T. Roach**

Special Assistant to the Executive Director

**Yolande Bestgen**

Director of Special Projects

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

Research Director

**Thelma B. Lucas**

Mental Retardation Program Specialist

**Joan Williams**

Special Projects Specialist

**Bena Smith**

Program Analyst

**Sheila Whittaker**

Budget Officer

**Peggy Butler**

Secretary to the Executive Director

**Angie Green**

Secretary to the Deputy Executive Director

**Terry Lion**

Clerk-Typist

**Dina Bergman**

Clerk-Typist