Looking Ahead to the Next Generation

1997 Next Generation Leadership Symposium Presentations and
Recommendations August 22, 23, 1997

> President\'s Committee on Mental Retardation U.S. Department of Health
> and Human Services 200 Independence Avenue, SW Room 352-G Washington,
> D.C. 20201-0001 202-619-0634 fax: 202-205-9519
>
> [[www.acf.dhhs.gov/programs/pcmr]{.underline}](http://vwvw.acf.dhhs.gov/programs/pcmr)

Valerie Bradley, Chair Gary H. Blumenthal, Executive Director

> ![](media/image1.png){width="1.0in" height="0.9305555555555556in"}

**Table of Contents**

**ACKNOWLEDGEMENTS**

by Gary H. Blumenthal, Executive Director

President\'s Committee on Mental Retardation

**PREFACE**

by Kerri Melda and Tanya Dorf

1997 Next Generation Leadership Symposium Co-Chairs

**Public Policy**

3 by Kerri Melda, Human Services Research Institute, Salem, Oregon

**Charting the Changing Tides of Managed Care and Long Term Services**

by April M. Myers, Project Coordinator, National Clearinghouse on
Managed Care

and Long Term Services and Supports, University of New Hampshire

**What Are They Waiting For?**

**A Survey of Massachusetts Caregivers**

> **Whose Adult-Children with Mental Retardation are on the State
> Waiting List for Residential Services?**

By Dian Griffiths, M.S.S., The Heller School, Brandies University,
Waltham, Massachusetts.

**Leagal & Justices Issues**

By Tanya Dorf, InterHab, Topeka, Kansas

**People with Mental Retardation Confronting Injustice within the
Criminal Justice System**

By Leigh Ann Reynolds, M.S.S.W., M.P.A., Project Associate, The Arc of
the United States, Arlington, Texas

**Direct Support Issues**

By Seth Krakauer, Rockaway Park, New York, New York

**Social Action:**

**A Model for Community Inclusion and Self Esteem for People with
Developmental Disabilities**

By Ruth Levy Kahn, BS, RSW, and Shoshana Arden Rubenstein, ACSW

Independent Living Specialists, JARC, Southfield, Michigan

**Housing Issues**

By Sally Jochum, Johnson County Developmental Supports, Lenexa, Kansas

**In Homes of Our Own: The Path Toward Self-Determination**

By Louisa J. Hext, Coordinator for Special Projects, Franklin County
Board of Mental Retardation and Developmental Disabilities

Columbus, Ohio

**Employment**

**Recommendations for Realizing Meaningful and Real Work with
Personalized Support**

By Julia Silver, Human Services Research Institute, Cambridge,
Massachusetts

**Minute Man Arc For Human Services, Inc.**

**Own on Your Own Program**

By Jim McAleer, Executive Director, Minute Man Arc for Human Services

Concord, New Hampshire

**Breaking Out of the Stereotype: Rethinking Traditional Jobs for
Workers with Mental Retardation**

By Joy Orzechowski, Job Developer, VinFen Corporation, Cambridge
Massachusetts

**Education Workgroup**

By Laurel Manthey-Silvio, Gaithersburg, Maryland

**Early Intervention and Parenting**

**Support in Public School Inclusive Programs**

By Heidi L. Miller Ph.D., Watertown Massachusetts

**Research Issues**

By Yona Lunsky, Nisonger Center, Columbus, Ohio

**Reducing the Incidence of Developmental Disabilities: Building Bridges
Between Research, Policy Makers and Service Providers**

By Laura L. Jelliffe, Doctoral Candidate, University of California,
Davis; Research Associate, President's Committee on Mental Retardation

**Diversity: Redefining, Refocusing, and Restructuring Our Efforts**

By Marisha Tapera, Cabin John Middle School, Rockville, Maryland

**Improving the Quality of Life for People with Mental Retardation and
Developmental Disabilities**

**The Church and Community Response**

By Angela McCants, Family Advocate, University of North Carolina at
Chapel Hill

**Inclusion Church Communities**

By Mel Dugosh, Graduate, Partners in Policymaking, Pipe Creek, Texas

**Acknowledgments**

As part of the mission and focus of the President\'s Committee on Mental
Retardation (PCMR), Committee members are deeply concerned about
training new leaders for the 21st century.

During the over 30 year history of the President\'s Committee, dramatic
changes have occurred regarding the quality, location and types of
services and supports available for citizens with mental retardation.

At the dawn of the Committee\'s formal creation in 1966, typical
services and supports left a lot to be desired. Quality, if measured at
all, might more likely represent numbers of individuals served in
custodial settings, rather then addressing the hopes, dreams and
aspirations of Self-Advocates who simply yearned to be part of their
home community.

As walls of separation, segregation, low expectations, and limited
options fell to integration, person centered planning, Self-Advocacy and
high expectations, people with mental retardation were able to dream
more, earn more and be part of everyday life.

So much more remains to be done in our field. First and foremost is
building upon the successes of the last 30 plus years by continuing to
ignite the fire of change to break down even more barriers that keep us
apart and our futures limited.

*New leaders are emerging.*

That is the focus of the Next Generation Leadership Symposium. Training
new leaders ranging from Self­ Advocates, Direct Support Professionals,
Service Providers, Researchers, Agency Personnel to Family Members, will
help create the energy and enthusiasm to shake the system sufficiently
to allow positive change to occur.

The 1997 Next Generation Symposium, held August 22-23, 1997 was
successful in meeting PCMR\'s goal of reaching out and training new
leaders. More than 250 individuals, under the age of 35, from over 40
States and the District of Columbia joined the PCMR in passing the torch
to the next generation. Participants in eight concurrent workshops were
challenged to: (1) Identify and address model activities, best practices
and develop strategies for future leaders in programs, supports and
advocacy for people with mental retardation and, (2) Identify and
address barriers that are expected to hamper progress of future leaders
in their efforts to improve the lives of persons with mental retardation
and their families.

The eight concurrent workgroups addressed topical issues as: Public
Policy; Legal/Justice System; Direct Support; Housing; Employment;
Education; Research; and Diversity.

The 1997 Next Generation Symposium culminated in this special PCMR
Report entitled: *Looking Ahead to the Next Generation.*

Special thanks to Kerri Melda, Human Services Research Institute, Salem,
Oregon, and Tanya Dorf, InterHab, Topeka, Kansas, for their creativity,
dedication, and hard work as Co-Chairpersons of the 1997 Symposium.

The Committee extends its gratitude to the members of the Next
Generation Leadership Advisory Committee whose understanding and
guidance contributed immensely to the total success of the Symposium:

Jane L. Browning, Washington, D.C.

Robert D. Dinerstein, J.D., Washington, D.C.

Steven M. Eidelman, Arlington, Virginia

Ann M. Forts, Center Harbor, New Hampshire

Dawn Rae Hays, Columbus, Ohio

Sally Jochum, Lenexa, Kansas

Delmas Johnson, Glenn Dale, Maryland

Seth Krakauer, Rockaway Park, New York

Sabrina Lewis, Middletown, New York

Yona Lunsky, Columbus, Ohio

Laurel Manthey-Silvio, Germantown, Maryland

Deborah Robinson, Philadelphia, Pennsylvania

Julie Silver, Cambridge, Massachusetts

Marisha Tapera, Rockville, Maryland

Sheryl White-Scott, M.D., Valhalla, New York

and

Thelma Lucas, PCMR Next Generation Symposium Project Officer

Laura Jelliffe, 1997 PCMR Research Associate

Mara Kreiger, 1997 PCMR Intern

Christine Kohl, 1997 PCMR Intern

Additionally, the PCMR expresses its appreciation to Administration for
Children and Families (ACF) Assistant Secretary, Olivia A. Golden and
Principal Deputy Assistant Secretary, John Monahan for their leadership
and continuing commitment to PCMR\'s initiatives.

The 1997 Next Generation Leadership Symposium

was dedicated to the memory of

**Natalie Sage Hazelton Coe**

a courageous and articulate advocate

on behalf of individuals with disabilities.

May her memory be a blessing

and inspire others to a life of advocacy and achievement.

Gary H. Blumenthal

Executive Director

**Forward**

\"Do we believe all our people are entitled to an equal opportunity to
live out their dreams? Do we believe our own lives are enriched when we
live and work together with people of different%4backgrounds who share
our values? We begin to answer these questions as young children. As
Thurgood Marshall once said, \'Unless our children begin to learn
together, there is little hope our people will ever learn to live
together.\"\'

**President** **William Clinton**, September, 1997 - *reflecting on the
40\`^h^ anniversary of racial desegregation at Central High School in
Little Rock, Arkansas*

People with developmental disabilities have dreams to fulfill. They want
to live and learn, and to work and play, just as others do. They want to
be supported by their communities, as we all are. They want to
contribute to their communities, as we all do.

People with disabilities want control over their daily decisions,
opportunities to succeed, and the freedom to fail.

It seems so simple. Yet, at times, we have made it so difficult.
Historically, it has often been the disabilities \"system\" itself that
has isolated people with disabilities from their families and
communities. Only in the past few decades have we, as a field, begun to
tear down the walls, and rewrite the rules, that have for so long
isolated us from being a truly integrated community.

As \"young\" leaders in the disabilities field, we have grown up side by
side with the disabilities movement. Over the past three decades, we
have experienced first hand the monumental changes in disability policy
and practice. As youngsters, we welcomed children with disabilities into
our schools. As teenagers, we rode the bus, we went to the movies, and
we became friends with schoolmates having disabilities. And now, as
adults, we fully expect people with disabilities to join us in the
workforce, and as our neighbors and friends.

We have watched the \"advocacy\" movement become a \"self-advocacy\"
movement. We have cheered legislation guaranteeing individuals with
disabilities the same rights and protections under the law to which all
Americans are entitled. And we look forward to a future that truly puts
\"people first\" in all aspects planning, implementation, and evaluation
of disability services and supports.

President Clinton posed the questions above about racial integration in
America. We find these questions equally valid when considering the
integration of individuals with developmental disabilities in our
communities.

Best practices must become common practice. As young leaders, we came to
the 1997 Next Generation Leadership Symposium to learn from one another,
to share information, and to develop recommendations from our collective
experiences and expertise. In the following pages, we offer our
observations, our analysis, and our suggestions for better supporting
individuals with disabilities as full participants in our communities.

Kerri Melda

Co-Chair, 1997 Next Generation Leadership Symposium

Tanya Dorf

Co-Chair, *1997* Next Generation Leadership Symposium

TOPIC I: PUBLIC POLICY ISSUES

**Papers/Presenters:**

**PUBLIC POLICY**

Kerri Melda

Human Services Research Institute

Salem, Oregon

**CHARTING THE CHANGING TIDES OF MANAGED CARE AND LONG-TERM SERVICES**

April M. Myers

Project Coordinator

National Clearinghouse on Managed Care and Long-Term Services and
Supports

University of New Hampshire

and

**WHAT ARE THEY WAITING FOR?: A SURVEY OF MASSACHUSETTS CAREGIVERS WHOSE
ADULT-CHILDREN WITH MENTAL RETARDATION ARE ON THE STATE WAITING LIST FOR
RESIDENTIAL SERVICES**

Diane Grifths, M. S. S.

The Heller School

Brandeis University

Waltham, MA

August 22-23, 1997

Next Generation Leadership Symposium

Washington Court Hotel

525 New Jersey Avenue, N.W.

Washington, D.C.

**PUBLIC POLICY**

by Kerri Melda

Human Services Research Institute

Salem, Oregon

**Introduction**

Public policy is a good place to start, as it encompasses all topics
discussed at this year\'s Next Generation Leadership Symposium. Not one
of us can deny that our lives are deeply and directly affected by the
many policies that guide or influence our everyday lives-policies that
affect our schools, our jobs, our travel, our health and safety, and our
rights. These policies, established at the federal, state, and local
levels, affect nearly every facet of our lives through the services and
supports we receive, the laws by which we must abide, and the rules and
regulations to which we must adhere. Public policy is, by definition,
policies put in place for the public good.

Likewise, disability policies affect, directly or indirectly, the lives
of individuals with developmental disabilities in so many ways. During
the past 25 years, sweeping legislation has been enacted to improve
accessibility, education, employment, housing, and rehabilitation for
people with developmental disabilities. These policies, over the years,
have refocused the direction of services and supports for people with
disabilities-from services that are isolated and segregated to ones that
emphasize full community integration; from systems that are provider or
system-driven to ones that are family or individually directed; and from
formal programmatic services to individualized natural or community
supports. While much progress has been made in recent years, we
certainly have a long road ahead. This may never change. As we continue
to learn and grow about how to become a truly integrated society, we are
constantly seeking new horizons and setting new goals.

**Background**

The developmental disabilities field is going through a tremendous
change. The future direction of long-term services and supports for
people with developmental disabilities is uncertain, yet change is
inevitable. In fact, significant policy changes are already taking place
throughout the country.

*\"A service system for \[people with disabilities\] and others in need
of support will have to be a system in constant change. It has to be
continuously developed, if the \`customers\' are not to be left behind
and to become hostages of an outdated way of doing things. \"*

*Alfred Dam; (undated), Denmark*

This change is driven by two major forces. The first involves money.
Over the past 15 years, funding for disability services has grown at a
rapid pace. In every state, service systems have expanded. This will not
continue. National leaders are looking for ways to keep down costs, and
spend money more effectively. As a result, more and more states are
considering \"managed care\" strategies to promote these changes. Some
fear, however, that the coming changes will focus more on cost
containment than on the quality of life for people with developmental
disabilities. Second, people with developmental disabilities and their
families are pushing, more forcefully than ever before, for services
that provide opportunities for them to live in, participate in, and
contribute to their community. But more than that, people with
disabilities want choices, and a strong hand in determining the course
of their own lives. (Melds, ed., 1997).

During the 1997 Next Generation Leadership Symposium, a diverse group of
individuals from across the country, with and without disabilities, sat
down to discuss: 1) the current thinking and practice around disability
policy; 2) our vision for the future; and 3) specific recommendations
toward achieving our vision. Three presenters shared with the Public
Policy Workgroup some of their experiences and expertise in the
disabilities field. These presenters included: 1) Donald Shumway-a proud
parent, and a seasoned professional who currently serves as Co-Director
of Robert Wood Johnson\'s Self-Determination for Persons with
Developmental Disabilities Project; 2) April Myers-a young professional
and self-described self-advocate serving as Project Coordinator of
MCARE, a national clearinghouse on managed care and long-term services
and supports at the University of New Hampshire; and 3) Diane Griiths-a
doctoral student at the Heller School for Social Welfare Policy at
Brandeis University. Through their insights, the group was provided a
foundation for discussing policy issues of interest and concern, and was
assisted in developing recommendations for future action. Below is a
brief summary of the information and issues covered during the
presentations which set the stage for later discussions among the entire
workgroup.

**Self-Determination**

Laying a foundation for future discussion, Don Shumway articulated
several core principles of self ­determination-principles highly valued
by individuals with disabilities, their families and advocates:

> • Freedom-the ability for individuals with freely chosen family and/or
> friends to plan a life with necessary support rather than purchase a
> program;

• Authority-the ability for a person with a disability (with a social
support network of circle if needed) to control a certain sum of dollars
in order to purchase these supports;

• Support-the arranging of resources and personnel-both formal and
informal-that will assist an individual with disabilities to live a life
in the community rich in community association and contribution; and

• Responsibility-the acceptance of a valued role in a person\'s
community through competitive employment, organizational affiliations,
spiritual development and general caring for others in the community, as
well as accountability for spending public dollars in ways that are
life-enhancing for persons with disabilities.\" Shumway & Nerney, 1996).

**Waiting Lists**

Diane Griffiths recently conducted a survey of older families whose
family members are waiting for residential services in Massachusetts.
Her findings from this study provided the workgroup with important
insights into the types of supports received, the types of services
needed (residential and non-residential), the urgency of their service
needs, and the potential implications for policy change.

• In 1996, 87,000 adults with mental retardation were on waiting lists
for residential services across the country (Anderson, Polister, Prouty
& Lakin, 1997).

• \"In Massachusetts, over 2,000 adults with mental retardation are on a
waiting list for residential services. Almost half of these individuals
have primary caregivers over the age of 60.

• Overall, families place their family member on a waiting list for
services because: a) they are experiencing severe family stress; b) they
want a residential placement before a crisis occurs in the family; c)
they want to plan for a future when they are no longer able to care for
their family member; or d) they feel their family member deserves the
opportunity to live independently.

• In Massachusetts, the waiting list represents real needs which must be
addressed as both a short- and long­term problem.

• Even those who do not need services right away have critical needs for
other kinds of support services. The waiting list is an ideal tool for
planning to meet those needs. There is no excuse for the continuation of
state service systems which are reactive and crisis-driven. Families
should not have to continue experiencing the trauma caused by the
current lack of planning.\" (Griffiths, 1997)

**Managed Care**

Managed care is a set of strategies being considered by many states
faced with a need to maintain high quality services, while containing
costs, and serving greater numbers of people. While managed care is a
topic that has been widely discussed in recent years (primarily around
acute health care), it is still relatively new to the world of long-term
services and supports for individuals with developmental disabilities.
April Myers, as coordinator of a national clearinghouse on managed care
and long-term services and supports, provided our workgroup with an
understanding of the basic concepts of traditional managed care, and the
potential uses of managed care strategies in a long-term service and
support environment.

• **The Political and Social Context of Managed Care**-driven by the
needs to contain costs, reduce spending, meet increased needs, expand
coverage, and address unmet needs.

• **Looking for Opportunities**-managed care strategies can be used to
improve service systems by expanding community-based services and
supports, increasing consumer control and family involvement, and
promoting self-determination and consumer choice.

• **Recommendations**-people with disabilities, their families, and
advocates should be involved in the development and design of any new
system; any new system should be based on the principles of full
inclusion and self-determination; mechanisms should be developed and
implemented to assure adequate funding for long-term services and access
to medical care; and all entities should be required to develop and
publicize a grievance process.\" (Myers, 1997).

**Vision**

Individuals with developmental disabilities expect to be full
participants in their schools, neighborhoods, jobs, and communities. As
a matter of course, people with disabilities have dreams to fulfill,
goals to achieve, and barriers to overcome. These expectations, dreams,
goals, and barriers are no different than those imagined and experienced
among all citizens. The joys of success, the risks and disappointments
of failure-enrich all of our lives when offered opportunities.

**Recommendations**

During the course of our Public Policy Workgroup, we listed and
prioritized numerous recommendations for improving or redirecting the
current service and support environment. You will notice that some of
these recommendations are more general or overarching in nature, while
others address specific actions that we feel need to be taken.

**Self-Determination**

1.  **Individuals with developmental disabilities make their own
    decisions about where they live, work, and play**. People with
    developmental disabilities differ tremendously, yet every person has
    capabilities of expressing, in some ways and to certain extents,
    their preferences. These may be larger decisions (such as what type
    of job to pursue, where to live), or smaller ones (what to wear,
    when to go to sleep). These decisions may be made independently, or
    with the assistance of a chosen helper (e.g., a family member or
    advocate). Most important, however, is that the individual
    his/herself has decision-making control.

2.  **Funding follows the person**. Typically, funding flows from the
    finder to providers, who then offer services to people with
    disabilities. In this scenario, the provider agency is primarily
    accountable to the funder, rather than the person with disabilities.
    For example, a \"slot\" system may be used, where providers are
    contracted to serve a specific number of people with a specific set
    of services. These services may or may not meet the needs of the
    clientele. The individual with disabilities has little control, and
    little flexibility in attaining the supports that best meet their
    needs. Also, if a person moves or changes provider agencies, they
    risk losing services because the monies are attached to the agency,
    not the individual. Funding must follow the person needing supports,
    to be in alignment with the principles of flexibility,
    accessibility, and consumer control.

3.  **Decisions are driven by individual needs, not by funding caps**.
    Unfortunately, the process of matching individuals with services and
    supports often focuses foremost on the service budget, not the
    person requiring support. .In some instances, we have created
    systems so burdened by budgetary rules and regulations that the
    people trying to navigate a system was which designed to serve them,
    getting lost in a labyrinth of red tape. With budgetary concerns as
    the focus, gatekeeping questions (e.g., Who\'s in?, Who\'s out?, Who
    gets how much?) can overshadow the more important questions (e.g.,
    What do you need to live a more productive life? How can we meet
    those needs in the most efficient and effective manner?). In either
    approach, many individuals receive services and supports. However,
    when decision-making power rests in the hands of those requiring
    services, services better match the needs of the individual, and
    money is used more efficiently to meet those needs.

In the realm of family support services, it has been demonstrated time
and time again, that when given control over how their financial
assistance is used, the money is used more creatively, more efficiently,
more frugally, and more effectively (in meeting the families\' needs)
than in comparable programs where service coordinators wield
considerable decision-making power. It is imperative, as systems change,
that the field recognize the expertise of individuals with disabilities
(and their family members, when appropriate) in determining their goals
and aspirations, and in making decisions around moving toward
achievement of those goals.

**Managed Care/Funding**

1.  **The developmental disabilities community must develop their own
    definition of the term \"managed care\" (and/or develop a more
    appropriate term and definition that reflect the new support
    management strategies employed)**. The term \"managed care\" is
    heavily laden with perceptions of how, in the medical community,
    specific strategies are used to address acute health care concerns.
    The developmental disabilities field, however, focuses primarily on
    meeting the long-term support needs of individuals. Much exploration
    is underway, and even more is needed before we can determine how
    \"managed care\" strategies might be best applied in the
    disabilities arena. National projects, such as the Robert Wood
    Johnson Self-Determination Grants, are just beginning to mold and
    shape and test various theories about applying managed care
    approaches to long-term services and supports. It is very important
    that we, as a field, research the potential implications of such
    drastic changes in policy making before jumping in head first.

2.  **Managed care, in whatever shape it takes, must be person-centered
    and individual-directed.** In keeping with the recommendations
    listed above under \"Self-Determination,\" it is imperative that any
    newly designed system of services and supports put people with
    developmental disabilities front and center. These individuals must
    play a key role in influencing and determining the system\'s future.
    This control and influence must be wielded in all facets, and at all
    levels of system redesign (e.g., policy setting, program regulation,
    service and support implementation, quality assurance and
    evaluation).

3.  **Close institutions and redirect resources to expand community
    services**. Nationwide, a relatively small percentage of individuals
    served in the developmental disabilities system reside in large
    institutional settings, yet a disproportionate percentage of the
    developmental disabilities budget is allocated toward institutional
    care. For years, institutional options have come under tremendous
    scrutiny as beliefs and practices around integration and
    self-determination have evolved. Additionally, state policy makers
    are finding renewed interest in the downsizing and closing of
    institutions as community-based options demonstrate their ability to
    offer improved quality of care, be more cost-efficient, serve
    greater numbers of people, and nurture community relationships for
    people with disabilities. This trend must continue. Community
    integration and full participation have no future if we continue to
    support segregated and isolated residential and vocational options.
    People with disabilities want to live and work and learn in their
    communities. The developmental disabilities system should support
    this, by eliminating options that, by their very nature, contradict
    these principles.

**Quality Assurance**

1**. Quality is determined by meeting people\'s needs, and is evaluated
by assessing their level of satisfaction with the supports received**.
Quality assurance and performance measures must be both process and
outcomes-based. People with developmental disabilities (and their family
members, when appropriate) must play lead roles in all aspects of
quality assurance. This includes the development of performance
measures, implementation of quality assurance procedures, and in the
evaluation and decision-making based on results of quality assurance
efforts.

2**. Quality assurance is an ongoing process**. There should be no
beginning nor end to the cycle of assuring quality in services and
supports for individuals participating in the developmental disabilities
service system. Quality assurance should be a continuous circle of
assessment, re-evaluation of policies and practice, and improvement.
Just as our beliefs around \"best practices\" evolve, as our communities
change, and as we individually grow and develop, the methods of assuring
quality services and supports must continually readjust to accommodate
and enhance this growth.

**Summary of Recommendations Determination**

Self-Determination

• Individuals with developmental disabilities make their own decisions
about where they live, work, and play.

• Funding follows the person.

• Decisions are driven by individual needs, not by funding caps.

Managed Care/Funding

• The developmental disabilities community must develop their own
definition of the term \"managed care\" (and/or develop a more
appropriate term and definition that reflect the new support management
strategies employed).

• Managed care, in whatever shape it takes, must be person-centered and
individual-directed.

• Close institutions and redirect resources to expand community
services.

Quality Assurance

• Quality is determined by meeting people\'s and needs, and evaluated by
assessing their level of satisfaction with the supports received.

• Quality assurance is an ongoing process.

References

Anderson, L., Polister, B., Prouty, R & Lakin, K. C. (1997). Services
provided by state and nonstate agencies in 1996.

In W. Prouty & K.C. Lakin (Eds.), Residential Services for Persons with
Developmental Disabilities. Status and Trends through 1996 Minneapolis:
University of Minnesota, Research and Training Center on Community
Living, Institute on Community Integration.

Griffiths D., (1997). What are they waiting for?: A survey of
Massachusetts caregivers whose adult-children with mental on are on the
state waiting list for residential services. Waltham, MA: Heller School,
Brandeis University.

Melda. K. (ed) (1997). Breaking new ground: A handbook on applying
managed care strategies to developmental disabilities services. Salem
OR: Human Services Research Institute.

Myers, A., (1997). Charting the changing tides of managed care and
long-term services. Concord, NH: Institute on Disability, University of
New Hampshire.

Shumway, D. Nerney, T. (1996). Beyond managed care: Self-Determination
for people with disabilities. Durham, NH: Institute on Disability,
University of New Hampshire.

**Charting the**

**Changing Tides**

**of Managed**

**Care and Long**

**Term Services**

**BY APRIL M. MYERS**

**Project Coordinator**

**National Clearinghouse on Managed Care & Long Term Services &
Supports**

**University of New Hampshire**

**The Political and Social Context of Managed Care**

The principles and practices of Managed Care have become increasingly
attractive to state and federal policy makers. As a result of political
and social pressures, state and federal governments are seeking out new
avenues to contain the costs of providing social service programs for
the American taxpayers while addressing the growing needs of the local
communities. Additionally, communities across the country are
experiencing a backlash towards welfare recipients and the tax-and-spend
perception of big government.

In searching for answers to the complex question of how to best utilize
our public resources, policy makers are turning their eyes to the
application of Managed Care principles and practices to more service
systems than just health care. While the private sector has paved the
road into the health care arena for Managed Care Organizations, the path
into Long-Term Supports and Service have been uncharted and the price of
experimentation for people with disabilities could be extremely high.

Additionally, advancements in medical technology and the media coverage
of assisted suicide have also elicited an emotional debate in our
American society. This debate has surfaced many of the beliefs and
stereotypes in our culture about people with disabilities, their quality
of life, the price tag of meeting their needs, and their contributions
to the community. In such a political and social context, Managed Care
and Managed Long-Term Services have the potential of creating an
environment for setting policies and implementing practices with life
and death implications for people with disabilities.

**Background on the Managed Care Environment**

While many people with disabilities and their families fear Managed
Care, they know very little about the practices and principles that are
often applied in Managed Care Organizations. Most individuals when they
hear the term \"Managed Care\" think of HMOs (Health Maintenance
Organizations). Actually, HMOs are just one form of Managed Care that
individuals with disabilities and their families will need to understand
in order to participate in setting tomorrow\'s public policies. Other
examples include Health-Insuring Organizations (HIOs), Prepaid Health
Plans (PHPs), Preferred Provider Organizations (PPOs), Primary Care Case
Management, and Provider Service Network.

In recent years, HMOs have become increasingly popular within the
private sector as a means for corporations to control the costs of
providing health care benefits to their employees. Many states across
the country have been also moving populations in publicly funded health
programs into similar arrangements. As the numbers of individuals
enrolled in some type of Managed Health Care Plan have grown, the
media\'s interest in the quality of

services that individuals have been receiving through these plans have
also increased. The majority of the media coverage of the HMO
corporations have exposed many of the possible flaws in the day-to-day
practices of Managed Care Plans to the American public.

While the media horror stories have justifiably elicited fear in many
Americans who are concerned about their own health and the well being of
their family members, most policy makers know that the quality of the
services received by participating members of a Managed Care program can
vary greatly from provider to provider and plan to plan. They understand
that Managed Care is really a set of principles and cost-containing
practices that have, in the case of the HMO\'s, been applied to the
delivery of health care services.

State governments across the Nation are hopeful that by applying the
same principles and practices of Managed Care to the area of Long-Team
Services and Supports for individuals with disabilities, the American
taxpayers can realize the same cost savings as businesses have in health
care. Much like any other principle that have driven the service
delivery system in our country, it is the specific day-to-day
application of the principles and practices that have negative and/or
positive implications on the quality of people\'s lives.

Corporations and government entities have developed and will continue to
develop contracts with Managed Care Organizations for the delivery of
services. The language and the specific tasks that are outlined in the
contracts determine the types and kinds of services that a person who is
participating in a given plan or program are entitled to receive. This
is one place where individuals with disabilities, their families, and
advocates can make a difference by getting informed about Managed Care
and becoming involved in their state\'s process.

**Managed Care Practices and Principles**

There are generally ten common principles and practices that people will
need to understand in order to work within the Managed Care policy
arena. Since not all ten of the principles and practices apply to every
situation and policy, some policy experts refer to the following key
terms as the tools of Managed Care:

1\. **Eligible Populations**-The group of individuals who will qualify
to receive services by a given Managed Care Plan.

2\. **Capitation**-The payment that is given to the Managed Care Entity
for services to the eligible population.

3\. Risk Management-The practice of trying to reduce the chance of
financial loss to the Managed Care Entity since the cost of providing
services to the eligible population may exceed the capitation rate.

4\. Care Criteria-The standards that are used by a Managed Care Entity
in determining what specific services will be available to the
individual in a given plan.

5\. Flow of Money-The way that the money passes from one entity to
another. For example, the money often flows from the purchaser of health
care insurance to the Managed Care Company then to the actual health
care provider.

6\. Network Management The arrangements that are made between the
Managed Care Entity and the providers for coordinating and monitoring
the care of individuals who are enrolled in their plans.

7\. Care Coordination or Gatekeeping-When an individual or agency has
the responsibility to coordinate and oversee all aspects of the
individual\'s services under the plan.

8\. Utilization Review-The process that is used to ensure that the
services which are received by individual are necessary and cost
effective.

9\. Service Substitution-The practice of requiring the use of less
costly services which are believed to be as effective as more costly
services.

10\. Quality Assurance-The process that is often used by a Managed Care
Entity to ensure the overall effectiveness of services to individuals in
a plan. This can also be a tool for a corporation to develop plans to
improve theirs and their providers\' performance in the future.

**Application of Managed Care to Long-Term Services and Supports**

While it is evident that the principles and practices of Managed Care
will not be able to operate in Long-Term Services as they have in the
health care delivery system, many questions remain about their specific
application to Long-Term Services. Perhaps, the greatest fear is that
the privatization of Long-Term Services could lead Managed Care
Corporations down a path of cutting comers to ensure large profits for
their shareholders. Such an outcome would not only affect the quality
and quantity of services for people with disabilities and their
families, but could also have life and death implications for the
individuals enrolled in the plan. Additionally, any reduction in
community-based services or significant changes in family support
programs could increase individuals\' risk for institutionalization.

A few advocates believe that by carefully applying the principles and
practices of Managed Care to Long-Term Services, states could actually
provide more choices to individuals with disabilities and serve
additional families. For example, by applying the practice of service
substitution to Long-Term Supports, a state could substitute costly
institutional care for more affordable community-based supports. While
this would potentially not only free up some funding to provide services
to additional families, it would also greatly improve the quality of
life for the individual and promote the further development of inclusion
policies in the state.

**Management Models**

Perhaps, at the center of the question of how to apply the principles
and practices of Managed Care to Long-Term Services and Supports is the
issue of whether or not the funding should be \"carved-in\" or
\"carved-out.\" When money is carved-in to a Managed Care Plan, funding
for one population or program is combined with other resources from
different system(s). For instance, a state\'s Long-Term Supports budget
for people with developmental disabilities could be added the state\'s
resources for services to its elderly population. If funding was to
remain carved-out, the services would continue to have separate
financial resources to provide programs to the given population.

Some states are experimenting with new programs that integrate acute
care and Long-Term Services for the elderly together while other states
are exploring ways to combine developmental disability populations with
elderly Long-Teen Services. The mechanism that most states are using to
undertake these initiatives are the 1115 Waivers which are also known as
the \"superwaivers\" or \"megawaivers.\" The overall purpose of 1115
Waivers was to provide states with the opportunity to implement research
and demonstration projects to test new service delivery models that
would otherwise require the state to receive multiple waivers of federal
laws and regulations from the Secretary of Health and Human Services.

The possible integration of acute care and Long-Term Services proposes
several questions and many concerns for individuals with developmental
disabilities. The first issue that comes to mind is the question of who
will be in control of the new integrated system and the allocation of
resources. Will an existing acute care provider, such as a hospital,
begin coordinating Long-Term Services and Supports for persons with
disabilities or will a nursing home corporation or home health care
agency become the gatekeeper to medical services? The coordinating party
for the integrated system could also be an existing Managed Care Company
or a new corporation all together.

The entity that becomes the coordinator for the new integrated system
would have considerable influence over the types and kinds of services
that greatly impact the quality of life for people with disabilities and
their families. In such an environment, it would be essential for policy
makers to develop safeguards to ensure that the present

funds for Long-Term Services are not drained into providing acute care.
Likewise, it would be necessary to put into place mechanisms to
adequately protect people\'s access to medical services.

As a state considers developing an integrated service system, it is
critical for persons with disabilities, their families, and advocates to
be involved in the development of the new system. Additionally, any
Managed Care Entity that receives public funding should be required to
develop a grievance procedure that involves people with disabilities and
their family members in the process. It should also be mandatory for
information about the grievance procedures to be widely disseminated in
alternative formats and for the written materials to be easily
understood.

From a universal policy perspective, the integration of services offers
states the possibility of stretching funding and providing some services
to individuals who are currently on waiting lists. However, by combining
funding the disability community stands to lose critical supports that
individuals, families, and advocates have worked hard for decades to
obtain. The transition may also risk people\'s access to important
community-based services.

**Managed Care and Self-Determination**

States may be able to allow a Managed Long-Term Service Entity more
flexibility than has been given to traditional service providers. In the
past, individuals with disabilities and their families had to accept the
package of services for which they were qualified. They had little
control over the kinds of services that they received. A Managed
Long-Term Service Entity could potentially offer a wider range of
supports to individuals and tailor their services to individualized
needs and goals.

There has been increasing discussion around the country about how to
move the developmental disabilities service delivery system into a new
age of Self-Determination. This movement is rooted in the philosophy
that individuals with disabilities and their families know best what
their needs are, and should be allowed the opportunity to structure
their own supports to meet their needs within a given budget. In such a
system, the dollar amount associated with an individual\'s services
would become known to the person and/or their family or advocate. Once
the amount of the available funding is known, the individual and their
circle of support would determine how to best utilize the money to
support the person\'s needs, goals, and desires.

**Conclusions**

While the cost-containing goal of Managed Care can place individuals at
risk for being denied care or receiving fewer services, it can also be
an avenue to expand coverage and services to individuals who are not
presently enrolled in a system. Additionally, this could be an
opportunity for states and communities to redesign their service
delivery system to better meet the individual needs of a very
diversified population and assist individuals in reaching their personal
goals.

Two important factors for people with disabilities and their families to
be mindful of in a Managed Care environment are: (1) Not letting the
cost-containing efforts of Managed Care become a means to deny services
or care to individuals with disabilities; and (2) not allowing
corporations to make large profits for their shareholders while denying
services to individuals and families who are in need of support and
assistance.

In today\'s social and political times, it will be a challenge for
individuals with disabilities, their family members, advocates, and
service providers to stay informed about the proposed policy and program
changes. Without access to such critical information, many of the gains
in the human and civil rights arena for people with disabilities may be
lost and individuals will be unable to promote inclusion in federal and
state policies. It is imperative that the disability community provides
the necessary leadership and educational opportunities to prevent the
policy trend of Managed Care from having a negative impact on the lives
and welfare of individuals with disabilities and their families.

**References**

The National Conference of State Legislatures, Medicaid Survival Kit,
November 1996

Smith, Gary (National Association of State Directors of Developmental
Disabilities Services, Inc.) and Ashbaugh, John (Human Services Research
Institute), [Managed Care and People with Developmental Disabilities: A
Guide.]{.underline}

**What Are They Waiting For?**

A Survey of Massachusetts Caregivers Whose Adult-Children with Mental
Retardation are on the State Waiting List For Residential Services

BY DIANE GRIFFITHS, M.S.S

The Heller School

Brandies University

Waltham, Massachusetts

**EXECUTIVE SUMMARY**

**Scope of the Waiting List Problem in the U.S.**

In 1996, 87,000 adults with mental retardation were on waiting lists for
residential services across the country was reported at 87,000
(Anderson, Polister, Prouty, & Lakin, 1997). Due to the fact that more
adults with mental retardation are living into old age, and the baby
boom generation is aging, this number will likely increase over time. A
1992 report from the University of Minnesota found that most states do
not collect information from individuals on waiting lists that would
allow them to plan for services. Further, despite having waiting lists,
most states operate residential service systems which are crisis-driven.
Individuals cannot obtain services unless there is a crisis situation in
the home, like the illness or death of the primary caregiver or an abuse
situation. (Hayden, 1992, p. 11)

The implications for individuals with mental retardation on a waiting
list can be traumatic. If they must wait until a crisis occurs in their
homes (like the death of a caregiver, or an abuse situation), then they
are left with what has been referred to as a \"double-trauma\": that is,
having to deal with the family crisis and having to adjust to an
unplanned residential placement. Since over 80% of individuals with
mental retardation live with their families throughout their entire
lives, this scenario will likely play out for most of them (Fujiura &
Braddock, 1992).

**Waiting List Efforts in Massachusetts-The Formation of Family to
Family**

In Massachusetts, there are over 2,000 adults with mental retardation on
the waiting list for residential services. Almost half of them have
primary caregivers over the age of 60, and close to 5% of them are over
60 years of age themselves (Department of Mental Retardation Unserved
Report, FY\'97- Quarter 4). In 1996, at the recommendation of the
Massachusetts Governor\'s Commission on Mental Retardation, a group of
family members, advocates, and professionals joined to form Family to
Family. Funded by the Joseph P. Kennedy, Jr. Foundation, Family to
Family is working to better understand the waiting list and come up with
creative strategies for eliminating it. The Department of Mental
Retardation helped recruit over 500 caregivers to the project by sending
*Family to*

*Family* mailings to primary caregivers of everyone on the waiting list.

***Family to Family*** began their efforts by first surveying the
caregivers on their mailing list whose family members are waiting for
residential services. They recognized that, before they could begin
working on strategies to eliminate the waiting list, they needed to
start by answering some basic questions about the list. The Department
of Mental Retardation has not been able to provide the answers since
they collect no substantive information from individuals on the waiting
list*. Family to Family* sought to answer 5 questions: 1) Why do
caregivers place family members\' names on the waiting list?, 2) When
are services needed?, 3) What kinds of residential services do
caregivers envision for their family members?, 4) What formal or
informal supports do families receive? and 5) Other than residential
services, what kinds of supports do caregivers need?.

**Major Findings of the *Family to Family* Survey**

1\. **Why do caregivers place family members\' names on the waiting
list**? Caregivers report that placing their family member\'s name on
the waiting list was a very difficult step for their families. They gave
any one of four reasons for doing so: a) they are experiencing severe
family stress, including age-related problems, b) they want a
residential service for their family member before a crisis occurs in
the family, c) they want peace of mind that their family member will
have somewhere to go when they are no longer able to care for him/her,
and d) many feel their family member deserves to live independently of
them.

2\. **When are services needed**? 25% report their family members need
residential services now, 14% need services within a year, and the rest
either need services in 2-5 years or in the distant future. Those
needing services within a year have more urgent family situations and
are less likely to have estate plans. Many who want services in the
distant future are elderly caregivers and, therefore, may actually need
services sooner. Finally, 67% of caregivers say they would take a
residential service for their family members if it was offered today.
This is a sign that many caregivers feel desperate enough to forgo what
they feel is best (continued caregiving) because they do not trust the
services will be there for their family members when they truly need
them.

3\. **What kinds of residential services do caregivers envision for
their family members?** Caregivers have extremely detailed visions of
residential services for their family members, and they want to play
active roles assisting their family members in making transitions to
residential settings. Group homes are the most popular choice of
residential setting. Only a few caregivers want their family members to
live in a large facility or with a sibling

4\. **What formal or informal supports do families receive**? Family
members with mental retardation receive a number of formal supports,
however, they provide only a thin layer considering the 24-hour
assistance that many of them need. Over half of caregivers do not have a
non-paid relative or friend who can stay with their family member
overnight, and few caregivers have a non-paid person who can stay with
their family member for short periods, provide transportation, or
arrange activities.

5\. **Other than residential services, what kinds of supports do
caregivers need?** Caregivers have many unmet needs besides the need for
residential services. Many report that, in order to maintain their roles
as caregivers, and keep their families together, they need information
about the waiting list and stronger communication with the state. They
also need more flexible and creative support services especially
flexible respite services, aid with future planning, and services to
assist their family members in preparing for residential living.

**Conclusions**

Unlike what many assume about waiting lists, we found that, in
Massachusetts, the waiting list represents real need which must be
addressed as both a short- and long-term problem. In the short-term,
families with critical needs for residential services must be identified
and served. We now know that even those who do not need services right
away have critical needs for other kinds of support services. These
needs must also be met in the short-term. In the long-term, most every
adult with mental retardation will need state-supported residential
services. The waiting list is an ideal tool for planning to meet those
needs. There is no excuse, then, for the continuation of state service
systems which are reactive and crisis-driven. Families should not have
to continue experiencing the trauma caused by the current lack of
planning.

**What Are They Waiting For?**

*\"\... waiting lists can become permanent indicators of our society\'s
inability or unwillingness to respond to the needs of individuals. At
their worst, waiting lists are indicators of system crisis and failure,
but we can use \[them\] as meaningful tools for planning and policy
development. \" Hayden, 1992*

Text of paper presented at the President\'s Committee on Mental
Retardation, Next Generation Leadership Symposium, Washington, DC,
August 22-23, 1997.

Presented by Diane Griffiths, M.S.S.

Heller School

Brandies University

**Support for this research was provided by the Joseph P. Kennedy, Jr.
Foundation, Washington, DC, the Starr Center for Mental Retardation,
Heller School at Brandeis University, and Arc Massachusetts, Waltham
Massachusetts.**

Good afternoon, today I will be discussing what is considered a national
problem in the field of mental retardation: waiting lists for adult
residential services. First, I am going to review some facts and figures
around waiting lists nationally. Then, I will describe the waiting list
problem in Massachusetts. My focus will be on the efforts of Family to
Family, an advocacy group in Massachusetts focused entirely on the
waiting list issue. I will present results of Family to Family\'s survey
of several hundred caregivers whose adult-children with mental
retardation are on the state\'s waiting list for residential services.
These results will allow us to understand the meaning of waiting lists
from the perspective of families.

**Scope of the Waiting List Problem in the United States**

The first comprehensive look at mental retardation waiting lists in
states across the country was published in 1992 by the University of
Minnesota. At that time, there were over 60,000 adults with mental
retardation, who were living at home, and who were on waiting lists for
residential services (Hayden, 1992). In 1996, the number had grown to
87,000 (Anderson, Polister, Prouty, & Lakin, 1997).

The 1992 University of Minnesota report found that most states maintain
some kind of waiting list for individuals who have a need for
residential services, but for whom the state does not have the funds to
serve. They also found that few states collect anything other than basic
demographic information from individuals on waiting lists. Therefore,
they are unable to plan for the residential needs of those individuals.
Finally, the report found that most states maintain some priority system
for ranking the residential service needs of individuals on the list;
however, \"these procedures are typically centered around crisis
situations.\" (Hayden, 1992, p. 11). Crisis may involve illness or death
of the primary caregiver or abuse situations.

The implications of these findings for individuals with mental
retardation on a waiting list can be traumatic. If they must wait until
a crisis occurs in their homes (like the death of a caregiver, or an
abuse situation), then they are left with what has been referred to as a
\"double-trauma\": that is, having to deal with the family crisis and
having to adjust to an unplanned residential placement. Since over 80%
of individuals with mental retardation live with their families
throughout their entire lives, this scenario will likely play out for a
vast proportion of them (Fujiura & Braddock, 1992). These will also be
issues for the unknown numbers of individuals who are not documented on
waiting lists.

**The Waiting List in Massachusetts**

In Massachusetts, there are over 2,000 adults on the waiting list for
residential services. Almost half of them have primary caregivers over
the age of 60. Close to 5% of them are over 60 years of age themselves
(Department of Mental Retardation Unserved Report, FY\'97-Quarter 4).
Officially, the numbers represent adults who need services within one
year. The reality in our state, however, is that the vast majority of
individuals on the waiting list will not receive services until a severe
crisis occurs in the home, even if they have then identified as needing
services within a year. When a crisis does occur, the state is still
reluctant to provide services. Often they attempt to persuade siblings
to take over caregiving.

As in other states, there is a fiscal crisis around mental retardation
services in Massachusetts. Funding for residential services weighs
disproportionately on institutionally-based services. Massachusetts
continues to Aperate seven institutional facilities at rates as high as
\$500 per day (Braddock & Hemp, 1997). Despite these meets, the
Legislature tends to be split over whether institutions should be
downsized, closed, maintained as they or filled back up. Powerful
interest groups have pushed for years to maintain the institutions. This
issue circles back to the waiting list because these groups contend that
re-opening institutional beds to individuals on e-maiting list would
solve the problem. Their solution, of course, implies that individuals
on the waiting list liftild choose to live in institutions.

In general, the Legislature in Massachusetts has been reluctant to
increase funding for residential services at that would eliminate the
waiting list. This reluctance may stem from basic unanswered questions
that still in our state regarding the kind of need represented by the
waiting list \... questions like: \"Is the waiting list made up of
individuals who are in crisis or who need services within a year?\", or
\"won\'t most families just these care giving responsibilities on to the
next generation?\", or \"couldn\'t we just re-open institutional beds
most in need?\" The questions may feel uncomfortable to us, but they are
the very questions which disagreements over strategies to reduce the
waiting list in Massachusetts.

**Formation of Family to Family**

In 1994, the Massachusetts Governor\'s Commission on Mental Retardation
held a public hearing on the waiting a result of this hearing, the
Commission published a report recommending, among other things, that a
should form to connect families of individuals on the waiting list.
(Governor\'s Commission on Mental 1994). Responding to this
recommendation, a group that included mostly family members of adults
retardation, advocates, and professionals formed a group called *Family
to Family* with funding from Joseph P. Kennedy, Jr. Foundation. The
goals of the group were to gain a better understanding of the waiting
problem, and work together on creative strategies to reduce the list.
The Department of Mental Retardation recruit caregivers to the project
by sending *Family to Family* mailings to primary caregivers of everyone
waiting list. Over 500 families are now part of *Family to Family*.

The group began their efforts by first surveying caregivers whose family
members are waiting for residential They recognized that, before they
could begin working on strategies to eliminate the waiting list, they to
start by answering the basic questions which were plaguing
policy-makers. The Department of Mental ion, after all, has not been
able to provide the answers since they collect no information about
individuals list other than basic demographic data.

**Family Needs Survey: Posing Unanswered Questions**

In what was called the \"Family Needs Survey,\" we sought to answer five
questions:

1\. Why do caregivers place family members\' names on the waiting list?

2\. When are services needed?

3\. What kinds of residential services do caregivers envision for their
family members?

4\. What formal or informal supports do families receive?

5\. Other than residential services, what kinds of supports do
caregivers need?

In March of this year, Family to Family mailed the \"Family Needs
Survey\" to 400 caregivers on our mailing list whose family members were
on the waiting list for residential services. Of these, 250 caregivers
completed the survey.

Description of Respondents

1\. **Why do caregivers place their family member\'s name on the waiting
list**? Despite the pervasive role that caregiving plays in the lives of
the parents we surveyed, they are not eager to discontinue this role. In
fact, some admit that placing their family member\'s name on the waiting
list is the hardest thing they have ever done. One woman writes, \"This
having to find a residence for our son is the most traumatic thing for
us and our son that has happened in our lives!\"

> There are four basic reasons caregivers give for placing their family
> member\'s name on the waiting list. Most list more than one of these
> reasons. Some caregivers describe issues which cause severe family
> stress, including age-related problems. One man writes, \"Our family
> has endured our daughter\'s temper tantrums for over 20 years. Three
> of us are being treated for stress-related disorders. One of us left
> the home for over a year to get away from the situation.\" Other
> caregivers said that they want a residential service for their son or
> daughter before a crisis occurs in the family. A parent writes,
> \"Primarily we want to avoid our son having a double trauma (once when
> we die, twice when he moves).\" Another writes, \"My feelings are that
> people like my daughter need to be taught to live away from their
> parents when they are still young enough and it is part of growing up,
> not when they are in their 40\'s and their parents are sick or dead.
> It should be when their family is still able to help them.\" Some
> caregivers want peace of mind that their family member will have
> somewhere to go when they are no longer able to care for him/her.
> These parents write, \"We\'re in no hurry but would like to be assured
> that, should the need arise tomorrow, he would have a good place ready
> for him.\" Finally, many caregivers feel their family member deserves
> to live independently of them. One mother says, \"He needs male
> companionship- not an old lady! We can\'t wait much longer. I don\'t
> want to drop dead in front of him!\"
>
> These reasons run contrary to the belief that only individuals in
> urgent need for services are on the waiting list in Massachusetts. The
> responses give needed depth to our understanding of how families
> perceive the service system. It seems that many of them know the
> system is in crisis, and that they may not get services for awhile.
> Placing their family member\'s name on the list, then, is part of a
> larger planning process (Essex, Seltzer, & Krauss, 1997).

2\. **When do caregivers need residential services for their family
members?** Most of the caregivers we surveyed are not yet ready to give
up their roles as caregivers today, or within the next year. 25% of
caregivers report their family members need residential services right
now. Another 14% need services within a year. The rest either need
services in 2-5 years, or in the distant future.

> First, we compared the caregiving situations of those who say their
> family members need services within the year with those who need
> services later. We found that caregivers reporting a need for services
> within a year are no older than those needing services later. However,
> they are in poorer health and their family members with mental
> retardation have significantly more behavior problems than those
> needing services later on. It is clear then, that caregivers needing
> residential services sooner have some critical issues in the home
> which may be influencing the urgency of their for need for residential
> services. What is also notable is that fewer caregivers needing
> services within a year versus later have estate plans or guardians
> designated in their wills. In other words, those with the most urgent
> need for residential services are also less likely to have taken care
> of essential planning tasks.
>
> When we focus in on the group of caregivers who say their family
> members do not need services within the year, there is one fording I
> would like to highlight. -. Those who report needing services \"in the
> distant future\" tend to be elderly caregivers who feel their family
> members will only need residential services when they, the caregivers,
> become too disabled to continue care giving. Due to their age, a
> portion of these caregivers may need services for their family members
> a lot sooner than they want them, especially if they experience sudden
> illness or death.
>
> Finally, when we asked caregivers whether they would accept a
> residential service for their family member if it was offered to them
> today, sixty-seven percent of caregivers say yes, they would take it.
> This finding indicates that some families feel a sense of desperation
> over the availability of services. Even though we found that most
> caregivers do not want to give up their caregiving roles right now,
> they would do so anyway, for fear that their family members may never
> get another chance.

3\. **What kinds of services do caregivers envision for their family
members**? One parent writes, \"My son \... would like to live in the
semi-rural town where he has lived for the last 15 years, and he wants
to be physically near his church.\" Another family gives considerable
detail concerning housemates for their son: \"We feel our son would
appreciate 2 or 3 housemates who are of a cheerful temperament, who like
to be sociable, to sing and dance, watch decent sitcoms, enjoy musical
entertainment \... go swimming in the summer, \[or\] go to camp \... Our
son also likes his quiet time when he can be by himself and think his
own thoughts and relax.\"

> The responses to this question tell us that caregivers have very clear
> visions of residential services for their family members. Overall,
> they want clean, cozy, safe environments in their current or
> surrounding towns with comprehensive supports provided by
> well-trained, experienced support staff. Caregivers also wish to play
> active roles in establishing and maintaining residential placements
> for their family members, including approving housemates and staff.
>
> Finally, when asked to choose among twelve residential settings for
> their family members, the majority of respondents (84%) want either a
> group home or an apartment for their family members (groups homes are
> the most popular choice). Almost three-quarters indicate a setting
> with full support staff (versus partial or none).
>
> Only 4 caregivers say they would consider a larger institutional
> facility for their family members. Eleven caregivers indicate that a
> sibling will take over care giving in the future. So, here are two
> more myths around the waiting list that we can dispel. Caregivers with
> family members on the list do not want institutional placements for
> their family members, and, on the whole, they do not expect to pass on
> care giving responsibilities to siblings. The take-home message here
> is that almost everyone on the waiting list will need services from
> the State.

4.  **What formal or informal supports do families receive**? Caregivers
    report that their sons and daughters are receiving a number of
    formal support services-usually income support, case management
    services, a day­time vocational program, and respite services.
    Remember, however, that these services provide only a thin layer of
    the supports which most of these individuals need to survive.
    Caregiving parents and families do the rest.

> In terms of informal supports, we asked caregivers whether any
> non-paid relative or friend provides caregiving assistance. In one
> question, we ask whether anyone stays with their family member when
> they go away overnight. Over half say that no one ever does this. They
> take their family members with them everywhere they go. Even fewer
> caregivers have an informal, un-paid support person to stay with their
> family member for short periods during the day, provide
> transportation, or arrange activities or services for them. This
> scarcity of informal support means that many caregivers must balance
> their responsibilities alone. For some, this can become overwhelming.
> One woman writes, \"I can\'t do this much longer. I\'ve been single
> for 25 years. I have no other children. My relatives live out of
> state. I am tired!\" One father wishes he could have gotten help
> during a temporary crisis. He says, \"I could have used some help when
> I came home from the hospital. I was so weak, I couldn\'t take care of
> him. If only I had someone for that time.\"

5\. What Supports do Caregivers Need? We felt it was important to ask
caregivers not only about the residential services their family members
need, but also the kinds of caregiving supports they need, even if their
family members are not ready for residential services in the short-term.
Caregivers report a variety of needs which, if met, would assist them in
maintaining their caregivng roles and, keeping their families together.
In general, they need more information and communication with the state,
combined with more creative and flexible support services.

**Better Information and Communication**

Caregivers in our sample report that they are given very little
information concerning the waiting list. They want to know how the
waiting list is organized and prioritized. They want verification that
their family members are on the list and some idea of when their family
members will receive services, even if it is ten years down the road.
They would like information on the services that are available, both
residential and support services. They also want to know exactly what
actions the state will take if they suddenly become ill or die.

**More Flexible and Creative Support Services**

Many caregivers report that their respite services are inadequate. They
need respite services that are flexible and that are available on
short-term notice. Families request other support services as well, like
transportation, allied health, recreational, and estate planning. The
need for future planning services is also crucial to these families.
Almost a third of the sample do not have anyone in mind who will look
after their family members\' needs in the future. Two-thirds have not
established a legal guardian for their family member in their wills, nor
begun the process of estate planning.

Families have a creative vision of future planning services which
includes more than just guardianship and estate planning. Caregivers
want themselves and their family members with mental retardation exposed
to the world of residential living. They want opportunities to visit
residential settings. They want residential skills training programs for
their sons and daughters (to prepare them for residential living),
opportunities for their family members to \"practice\" living in a
residential setting away from home, and many suggest setting up
housemate matching programs. Some write that they the Department of
Mental Retardation should be required to gather information from their
family regarding their residential plans in the future. Finally, there
were families interested in learning more about private funding options,
or family partnership projects.

**Summary of Results**

To summarize, the results of the survey allow us to answer some of the
basic questions which have haunted efforts to deal with the waiting list
in Massachusetts. We re-affirmed that the waiting list includes
individuals who have urgent needs for services that must be addressed
immediately. However, we now know that a large portion of individuals on
the list do not have critical needs for residential services. Many
caregivers have no intention of giving up their roles as caregivers yet.
They do, though, have critical unmet needs for information and support
services which would assist them in maintaining their caregiving roles.

Many caregivers think of the waiting list as an initial step in future
planning and realize that, since the need is so great, they better make
themselves known to the state now rather than later. Further, caregivers
are rightfully in fear of what will happen to their sons and daughters
if crisis arrives unexpectedly. They are not content to wait until a
crisis occurs before their family members move to residential settings,
and they want to assist their family members in making smooth
transitions to new homes. Another thing is also clear from this survey:
re-opening institutional beds or passing caregiving responsibilities on
to siblings are really not options for these families.

**Condusions**

The waiting list is both a short- and long-term issue. In the
short-term, the residential needs of individuals in crisis must be met,
in addition to meeting the critical planning and support needs of those
who do not need residential services right now. In the long-term,
virtually every individual on the list will need state-supported
residential services. The need for residential services among
individuals on waiting lists is clearly real and it is not going away.
If anything, the number in need \"will most likely continue to increase,
rather than decrease over time\' (Hayden, 1992, p. 11). Many more
individuals with mental retardation are now living into old age and the
baby boom generation is also aging. For the short- and long-term, the
crisis-driven nature of the system needs to acknowledged and challenged.
Families should not have to continue experiencing the trauma caused by
the current lack of planning. So far, waiting lists represent a missed
opportunity for meaningful planning.

Even if these findings do not surprise, you, it is important to remember
that they will surprise some of the policy­makers in our state who hold
inaccurate assumptions about the waiting list, but who make real
decisions regarding the allocation of resources. By starting from the
beginning, and answering the most basic questions about the waiting
list, the group Family to Family is now in a better position to advocate
on behalf of individuals the waiting list and their families. Thank you
for listening.

**Table 1**

**[Sample Cha]{.underline}racteristics (N=250)**

.

+---------------------------------+------------------------+-----------+
| > **Care \'vin                  |                        |           |
| > [Respondents]{.underline}**   |                        |           |
+---------------------------------+------------------------+-----------+
| > Who [Responded?]{.underline}  | > Mothers              | > 50%     |
+---------------------------------+------------------------+-----------+
|                                 | > Fathers              | > 10%     |
+---------------------------------+------------------------+-----------+
|                                 | > Mothers & Fathers    | > 40%     |
+---------------------------------+------------------------+-----------+
|                                 | > mean                 | > 62 ears |
+---------------------------------+------------------------+-----------+
|                                 | > range                | > 44-87   |
|                                 |                        | > ears    |
+---------------------------------+------------------------+-----------+
| > Race                          | > \% white             | > 94%     |
+---------------------------------+------------------------+-----------+
| > Marital Status                | > \% married           | > 72%     |
+---------------------------------+------------------------+-----------+
| > [Caregiver]{.underline}       | > \%                   | > 62%     |
| > Health Status                 | > [good/               |           |
|                                 | excellent]{.underline} |           |
|                                 | > health               |           |
+---------------------------------+------------------------+-----------+
| > **Family Members with         |                        |           |
| > Mental**                      |                        |           |
| >                               |                        |           |
| > **Retardation**               |                        |           |
+---------------------------------+------------------------+-----------+
|                                 | > mean                 | > 32 ears |
+---------------------------------+------------------------+-----------+
|                                 |                        | > 22-60   |
|                                 |                        | > ears    |
+---------------------------------+------------------------+-----------+
| > Gender                        | > \% female            | > 47%     |
+---------------------------------+------------------------+-----------+
| > Level of Retardation          | > \% mild or moderate  | > 74%     |
+---------------------------------+------------------------+-----------+
| > Behavior Problems             | > \% with at least 1   | > 46%     |
|                                 | >                      |           |
|                                 |  [problem]{.underline} |           |
+---------------------------------+------------------------+-----------+
|                                 | > average number       | > 2       |
|                                 |                        | >         |
|                                 |                        |  behavior |
|                                 |                        | >         |
|                                 |                        | > [pro    |
|                                 |                        | blems]{.u |
|                                 |                        | nderline} |
+---------------------------------+------------------------+-----------+

**References**

Anderson, L., Polister, B., Prouty, R., & Lakin, K.C. (1997). Services
provided by state and nonstate agencies in 1996. In RW. Prouty & K.C.
Lakin (Eds.), Residential Services for Persons with Developmental
Disabilities. Status and Trends through 1996 Minneapolis: University of
Minnesota, Research and Training Center on Community Living, Institute
on Community Integration.

Essex, E.L., Seltzer, M.M., & Krauss, M.W. (1997). Residential
transitions of adults with mental retardation: Predictors of waiting
list use and placement. American Journal on Mental Retardation, 101,
613-629.

Fujiura, G.T. & Braddock, D. (1992). Fiscal and demographic trends in
mental retardation services: The emergence of the family. In L. Rowitz
(Ed.), Mental Retardation in the Year 2000 (316-338). New York:
Springer.

Governor\'s Commission on Mental Retardation. (1994). Strategies for
Reducing the Waiting List for Services from the Department of Mental
Retardation in Massachusetts. Report from the Commission\'s first public
hearing held Tuesday, June 28th, 1994 in the Gardner Auditorium of the
State House. December.

Hayden, M.F. (1992). Policy Research Brief. Adults with Mental
Retardation and Other Developmental Disabilities Waiting for
Community-Based Services in the U.S. August, Vol. 4, No. 3. Minneapolis:
University of Minnesota, Research and Training Center on Community
Living, Institute on Community Integration

**TOPIC II: LEGAL/JUSTICE SYSTEM ISSUES**

**Papers/ Presenters**

**LEGAL/JUSTICE ISSUES**

**Tanya Dorf**

**InterHav**

**Topeka, Kansas**

**PEOPLE WITH MENTAL RETARDATION CONFROTNING INUSTICE WITHIN THE
CRIMINAL "JUSTICE" SYSTEM**

**Leigh Ann Reynolds, M.S.S.W., M.P.A.**

**Project Associate**

**The Arc of the United States**

**Arlington, TX**

**LEGAL & JUSTICE**

**ISSUES**

**BY TANYA DORF**

InterHab

Topeka, Kansas

In a ceremony on the White House lawn, President Bush signed the
Americans with Disabilities Act (ADA), which guarantees all Americans,
regardless of ability, equal opportunity and access to employment,
education and public places. It also guarantees that people with
disabilities will no longer be discriminated against on the basis of
their disabilities.

The first piece of legislation of its kind in the world, the ADA
catapulted the disability movement into a full ­fledged civil rights
movement. It did more to solidify the rights of people with disabilities
than the Constitution, the Bill of Rights, or any other actions of the
United States government during the previous 200 plus years. Dramatic
changes have occurred since that historic day in 1990. People and
businesses are now much more aware of people with disabilities and of
their needs, and they are becoming much more accepting of the abilities
of people with disabilities. But there is still a long way to go,
especially in the area of justice.

\"If we are to achieve a richer culture, we must weave one in which each
diverse human gift will find a fitting place.\" In saying this, Margaret
Mead recognized the importance of each individual to society. She
pointed out that only when all people are included in society, and when
all are looked at as equally important to society, will we have a rich,
vibrant culture.

Mead is also famous for saying, \"Never doubt that a small group of
thoughtful, committed people can change the world, indeed it is the only
thing that ever has.\" The disability movement is a relatively new one
and as it grows older, it grows in numbers. Most of the progress made so
far in the movement was made by small groups of people, though. This
movement has proven that Mead was right: a small group of committed
people can, do and have changed the world.

A contemporary of Mead\'s, Eleanor Roosevelt, also recognized the power
of a small, committed group. Eleanor Roosevelt was not only the wife of
one of the greatest presidents this country has ever known, she was also
the wife of a person with a disability. She, like Mead, knew that it
only takes a small group of thoughtful, committed and motivated people
to change the world and make it a better place. After all, she was there
when her husband and his advisers brought this country out of despair
and made it a better place to live. And she knew from personal
experience that a person\'s disabilities have nothing to do with what he
or she can contribute to the world. Both women understood that it takes
each person, regardless of ability, to weave the strong fabric of our
society.

Margaret Mead\'s notion of a small group of people changing the world
was the impetus behind the 1997 Next Generation Leadership Symposium,
especially behind the work groups. The President\'s Committee on Mental
Retardation recognized that young people, just entering the disabilities
field, are the future of the field and that they must be empowered to
take the field to the next level and to change the world.

The legal/justice issues work group seized the opportunity afforded them
to take the first steps toward changing the world. The group made a list
of all of the legal/justice issues which they believe need attention and
then made a series of recommendations for the issues which they felt
were most urgent.

The issues the work group identified as important fell into two basic
categories: civil and criminal justice. Among the civil justice issues
are guardianship, risk and liability, and monitoring community services.
Criminal justice issues included educating law enforcement officials,
lawyers and self advocates, providing services to the forensic
population, fully implementing policies and procedures, tracking the
number of people with disabilities in the criminal justice system,
supporting people with disabilities after they are released from prison,
and identifying and researching diversionary programs. As they began to
craft solutions, the work group focused on education, guardianship and
monitoring. Fo11ovwing are the work group\'s recommendations in each of
these areas.

**Education**

The key education problem is that it is difficult to utilize all of the
available resources to educate people about the justice system and
disability. Leigh Ann Reynolds, presented research and ideas about the
inadequacies of the justice system\'s treatment of people with
disabilities.

Reynolds proposed developing a National Clearinghouse on criminal
justice and developmental disability issues. This Clearinghouse would
promote the use of existing training programs, and it would provide a
central location where information on criminal justice and developmental
disabilities can be gathered, organized and disseminated.

The work group recommended creating this National Clearinghouse to
become the \"one-stop center\" for information on justice issues for
people with disabilities.

The National Clearinghouse would house and disseminate materials to
train law enforcement officials, attorneys and judges about the
uniqueness and the needs of people with disabilities. Anyone in the
country could access materials to train their local officials and
justice workers. Many training materials of this type already exist, but
there is no central repository for easy access.

Another type of information that would be found at the National
Clearinghouse is information to train self­ advocates about the justice
system. Many people with disabilities become victims of the justice
system because they do not know what their rights are. People with
disabilities are often taught to be very respectful of authority. While
we all respect authority, we also know that there is a line between
respecting authority and knowing what our individual rights are. The
Clearinghouse would contain materials to teach people with disabilities
about their rights as citizens, as well as about how the justice system
works. They also need to understand that in some cases their disability
is relevant to the charge against them, and sometimes it is not. The
information available in the Clearinghouse will help people understand
the difference between these situations. When people with disabilities
are more informed about how the justice system works and their rights
within it, they will be less likely to be either inadvertently or
purposefully abused by it.

The ADA guarantees that information be available to anyone in a variety
of formats upon request, including Braille and large print. The
Clearinghouse would certainly make accessible formats of its materials
available, but it would also go one step further. It would make sure
that materials intended to help self-advocates understand the justice
system are written clearly and in simple English.

The final problem the National Clearinghouse could address is
diversionary programs. Currently there is a distinct lack of
diversionary programs for people with disabilities. A common alternative
sentence is work release. People with disabilities who are not offenders
work very hard to get jobs in the community and to tear down attitudinal
barriers about them. The fact that this movement is still struggling
points to another fact: it will be difficult to sustain a good work
release program for offenders with disabilities. The Clearinghouse could
do research into the VA= of diversionary programs available for the
general population and then work on modifying them as necessary for.
people with disabilities. Ideas for new programs could also be
researched and developed by the Clearinghouse. After these programs are
developed, they must be implemented nationwide, taught to law
enforcement officials across the country and sustained over time. By
taking these steps, it will become easier to keep people with
disabilities from becoming repeat offenders and from becoming trapped in
the justice system.

Within the educational issues category, our group also identified law
enforcement training as a problem. Police departments are not required
to have disability education included as a part of their training
programs for officers. The work group recommends that the national
accreditation program for all police departments require disability
awareness education as a part of all training programs. Robert Perske,
who is a nationally recognized disability advocate, has devoted much of
his time in recent years to helping people with disabilities who are
caught in the criminal justice system. In 1991 he wrote a book called
Unequal Justice, which chronicles many stories of people with
disabilities, whether they are guilty or innocent, who are sadly
defenseless when they become caught in the justice system. The book is
filled with stories of what happens to people with disabilities when the
justice system fails to understand them. In one story, Perske described
the trial of a man who had an IQ of 49 and who had confessed to a
murder. The following is part of the conversation from the witness
stand:

\"Jerome, did you assassinate President Lincoln?\",

\"Yes\" Jerome said.

\"Did you assassinate President Kennedy?\" ,

\"Yes\" Jerome said.

It seems obvious that Jerome\'s competency is a central issue in this
case, but his was never addressed in court, and he was executed for the
murder to which he confessed. A case like this might not have gone so
far if the police officers had better understood people with cognitive
disabilities.

**Guardianship**

The problems centered around guardianship concerned the level of
dependence on guardians. Often there is too great a dependence on
guardians and that sometimes there is too little. The work group felt
that there are some things over which guardians should have little
control. Among these are deciding where to live. As more and more people
with disabilities move out and live on their own, it is important that
their decisions be respected. Frequently guardians are against either
the decision to move or the location of the new residence, simply
because they are not familiar enough with their wards. It is extremely
important that guardians are in touch with their wards on a regular
basis. When they stay in regular contact with their wards they will
understand them well and know what they are like. The work group feels
that guardians must be required to have regular contact with their
wards. When they know their wards very well, they will be in a better
position to offer constructive help when big decisions like moving need
to be made. The decision itself, however, should still rest with the
person who wants to move.

An additional guardianship problem involves people with disabilities who
become their own guardians. A growing trend in the disability movement
is that people with disabilities become their own guardians. It is never
possible to know when a serious medical problem will occur for someone,
so when self-advocates experience major medical problems, there may not
be anyone available to make medical decisions for them. As a preventive
measure, there should be a procedure by which people with disabilities
can go to a judge or some other legal entity to find or identify someone
who can serve as a medical guardian in the event they become seriously
ill. By instituting a procedure like this, the sanctity of a person\'s
right to be his or her own guardian can be preserved, while their safety
and health is still be protected.

**Monitoring**

It is extremely important to monitor the work of organizations that
provide services for people with disabilities to assure that no abuse,
neglect and exploitation (ANE) violations occur. People with
disabilities are among the most vulnerable to abuse, neglect and
exploitation, so their safety is of the utmost importance. Most people
who work in a setting in which they provide services for people with
disabilities have only the best interest of the people they serve at
heart. The human services field attracts people who want to help others
and want to do their part to make the world a better place. Sometimes,
though, a few bad apples slip in. It is important to have a system by
which regulatory agencies monitor the work of the service organizations
to ensure that the safety of the people they serve is a top priority.
Frequently regulatory agencies charged with monitoring for ANE
violations announce the time of their visits to the very organizations
they are charged with monitoring. It is very unlikely that they will
find ANE violations when those being monitored are ready and waiting for
them. The legal/justice issues work group recommended that monitoring
visits for ANE violations be unplanned and unscheduled. Only by
surprising those who may possibly commit such atrocities, can offenders
be caught. It may not seem ethical to stage unplanned visits, but it is
a way to ensure that a true picture is taken of the activities of
service organizations.

There is one further monitoring issue, regarding people with
disabilities being supported as prisoners and ex­convicts. Little support
exists for people with disabilities when they are incarcerated, are
participating in diversionary programs, and are released from jail or
prison. Our work group recommended that as soon as people in the prison
and jail system are identified as having a disability, they be assigned
an advocate by the state\'s advocacy and protection agency. People with
disabilities frequently become trapped in the justice system because
there is a lack of services for them once they enter that world. There
is a better chance of them making it back out of the criminal justice
world when they are offered appropriate services and are properly
supported when they are still in it.

**The Work Goes On**

Robinsue Frohboese, of the U.S. Department of Justice\'s Civil Rights
Division, opened our work group\'s meeting on the first day by talking
about the disability movement as a civil rights movement. She explained
that civil rights is an evolving process. It is not something that is
suddenly achieved. Strides are continually made, and rights are
continually achieved, but the ultimate goal will only be achieved
through many, many years of hard work. The civil rights movement of the
1960s has certainly put in many, many years of hard work to assure that
African-Americans are treated as equal citizens. That movement has seen
much success, but, thirty years later, even that famous movement has not
achieved its ultimate success. The work already done and the Civil
Rights Act of 1964 have been great strides forward, but it will take
more years of work to finish tearing down old attitudinal barriers about
African-American people. Likewise, it will take more work and more
commitment from those already in and those just joining the disability
movement to finish tearing down attitudinal barriers about people with
disabilities.

**People with Mental Retardation Confronting Injustice within the
Criminal Justice System**

by Leigh Ann Reynolds, M.S.S.W., M.P.A.

Project Associate

The Arc of the United States

Arlington, Texas

**Wbo Cares to Confront?**

Confrontation is a carefully learned skill which many people, both with
and without disabilities, may never learn \'do. Yet, it is a skill that
is vitally necessary when asserting and defending one\'s rights.
Webster\'s dictionary fines confrontation as \"facing something,
especially in a challenge.\" This is certainly a challenging time for
both ople with disabilities who get involved in the criminal justice
system, as well as for those advocates who attempt provide some form of
assistance for such individuals. Those with disabilities who have lived
in institutional Clings, group homes or in their own homes with parents
or caregivers who did not encourage their independence ve traditionally
not been given the opportunity to make their own decisions or taught how
to recognize or stand ,against injustices perpetrated against them.
Injustices can happen, and do happen, whether the person with a ability
has been victimized, unjustly accused of a crime (and possibly facing a
life sentence or execution) or ed as a scapegoat to carry out criminal
behavior.

People without disabilities who have generally been given more
opportunities to learn how to confront and are equipped with some
confrontation skills offer little help when it comes to advocating on
behalf of individuals with ital retardation who become involved in the
criminal justice system. Such issues involving criminal justice and tl
advocacy are not too important to the vast majority of people UNTIL the
person who becomes involved in criminal justice system is a child, a
family member, a spouse, a friend, a co-worker, a neighbor or some other
significant other. Advocates who do get involved feel overwhelmed,
helpless, alone and inadequate to provide the (stance required due to
their inexperience with the complicated criminal justice and court
systems.

There are so many pressing issues facing people with mental retardation
that it is difficult to justify spending time i energy discussing
criminal justice matters. After all, how often do disability advocates
rally to advocate for re diversionary programs created to assist
defendants with mental retardation and other criminal justice-related
advocacy services? Not very often, if at all. Many fighting for the
rights of people with mental retardation,

including self-advocates, are already overwhelmed with the task of
fighting for basic needs, such as health and long-term care, fully
integrated educational opportunities, supportive work and home
environments and other vitally important needs. Although these issues
demand constant attention and vigilance, we can no longer risk
minimizing the issues people with disabilities face when they become
involved in the criminal justice system. The longer we put off dealing
with these issues, the greater the risk of unnecessary or inappropriate
placement of people with mental retardation in jails and prisons. ALL
people deserve a chance to receive basic rights within the criminal
justice system, such as the right to a fair trial, to be taken seriously
when testifying and to be heard. Yet for people with disabilities, these
rights are often denied.

Overall, perhaps the most serious challenge facing self-advocates in
achieving equal access to justice is the lack of a strong, committed and
unified voice. This would allow individuals with disabilities the
opportunity to speak for themselves about injustices. It would also give
advocates without disabilities the ability to draw attention to the
grave seriousness of this problem. Many with disabilities who find
themselves in the criminal justice system often have not learned how to
use their voice or do not have a voice to speak up about injustices,
whether through a parent, advocacy group or other representative that
could provide a wake-up call for the community. Fortunately, there are
some services and programs available for people with mental retardation.
Such advocacy services have shown to be helpful in providing
alternatives to incarceration. However, even as this paper is being
written, many people with mental retardation who are in the criminal
justice system will have no one to help them navigate their way through
this confusing process of \"justice.\"

Because of this lack of accountability within the criminal justice
system and disability community, injustices (whether perpetrated
directly or indirectly) against people with mental retardation continue
to be a routine part of their lives. This paper will first discuss the
broad range of issues creating these injustices, then narrow the focus
to three issues followed by possible solutions that can be used in
creating future policy recommendations.

**Looking At \"The Big Picture\"**

A vast array of criminal justice issues impact people with mental
retardation on a daily basis. These issues range from concern about
whether or not the death penalty should be prohibited for people with
mental retardation to how to identify those entering a jail or prison
who have a disability to educating judges and attorneys that people with
mental retardation who are victimized can provide credible testimony.
Scholars, policy analysts, researchers, service providers, advocates and
others concerned about criminal justice issues are often forced into
grappling with only one tiny segment of the entire criminal justice
system in a brave effort to effectively create positive change in a
system that is generally punitive toward those it encounters.
Unfortunately, looking at specific issues on a one-by-one basis has
created a rather narrow perspective among criminal justice and mental
retardation experts resulting in narrow solutions to a problem which
exists in a much larger context than is often considered. The global
picture of people with mental retardation in the criminal justice system
must be shaped, defined and thoughtfully considered before attempting to
provide solutions that have a significant impact.

By looking at the big picture, a framework can begin to be developed
that provides direction when deciding which issues need the most
attention at a certain point in time. This is especially important in a
field where very little empirical research is conducted due to lack of
funds or interest in the issue. One example of this need is provided by
Dolores Norley, the first person to develop training curriculum for
police officers on mental retardation, who stated in 1994 when
attempting to survey states to find out who has diversionary programs
for defendants with mental retardation that \"a national picture is
imperative before we can expect federal attention to a country-wide
problem.\" Unfortunately, her words of wisdom have gone largely unheeded
and many questions remain in the minds of criminal justice and
disability experts as to what exactly needs to be done. How can criminal
justice issues be defined and prioritized or can they? In using a
systems view, (looking at the big picture, as well as each individual
part) we can begin to define these issues so that possible solutions can
emerge.

The \"big picture\" issues can be categorized into the following
categories:

**Lack of Clear Direction**

Without an accurate definition of a social problem, it is virtually
impossible to develop possible solutions. Defining and carefully
articulating an issue takes valid and reliable data that can be used to
construct strategies to the problem. Unfortunately, this data is often
difficult to obtain due to the lack of research and the non-existence of
significant statistics. Research is one of the most crucial needs within
the field of mental on and criminal justice if comprehensive and lasting
changes in policy and practice are to occur. Much of the research in the
area used to demonstrate that a problem does exists is not consistent
(Reynolds, 1995). For le, some studies have found that 10 percent of
people with mental retardation are in the criminal justice while other
studies cite only 2 percent (Noble & Conley, 1992). This variation in
the number of people y involved in the criminal justice system presents
a problem since policy makers and funding bodies who y fund important
research initiatives are unconvinced that a problem exists. Research
must be emphasized in order to create standards of measurement in each
area of the criminal justice field. Such areas but are not necessarily
limited to: 1) measuring the success of training programs for police,
court el and self-advocates, 2) measuring the success rate of various
diversionary programs for offenders with retardation, 3) surveying the
current knowledge of attorneys, judges and other court personnel who
defend

adjudicate people with mental retardation, 4) measuring the actual
number of times a police officer encounters e with mental retardation
and defining the outcome, i.e., is the person arrested, detained or
released, 5) uring the success of training programs for self-advocates
(looking closely at ability to understand their rights arrested) and 6)
measuring the number of people within state and jail populations who
have mental on.

Research is needed to provide answers to questions such as:

-   How many programs for offenders with mental retardation are now in
    existence and how is their success measured? This has been attempted
    in various studies or projects in past years, but a comprehensive
    study is still needed.

-   What crimes are people with mental retardation usually charged with
    committing? Some research has shown that most offenders are arrested
    for committing misdemeanors and other less serious felonies while
    other research conducted in New York found that sexual offenses are
    most common (White & Wood, 1986) (Sundram, 1990).

-   What are the characteristics of people with mental retardation in
    the criminal justice system? Statistics have documented differing
    conclusions. Specifically, it would be helpful to know what is the
    average IQ and does the person have anyone able to provide advocacy
    on his or her behalf?

There simply is no substitute for valid and reliable research. Research
is, in fact, the only thing that can provide the clear direction so
desperately needed at this time in the mental retardation and criminal
justice field. It is imperative to answer some of the underlying
questions, such as the ones mentioned above, before moving forward in
attempting to create policy that is not short-sighted, but comprehensive
in scope.

**Lack of Accountability**

The creation of a strong voice that will speak clearly with and on
behalf of people with mental retardation is paramount in achieving
equality in the criminal justice system. Who is ultimately accountable
for ensuring people with disabilities are treated fairly within the
criminal justice system? No one has defined who should be held
accountable, causing many individuals to slip through the cracks with
respect to advocacy services. DeMoll states, \"Overall, very few
advocacy programs have been established in this country for defendants
with mental retardation\" (DeMoll, 1992). Although this observation is a
few years old, it remains a stark reality even today. One example is the
Protection & Advocacy agencies directed to provide legal services for
people with mental retardation in each state. These agencies are
generally able to provide advocacy services involving civil, not
criminal law. Therefore, this agency is not accountable for serving a
person with mental retardation involving criminal matters since they do
not have the resources or expertise to do so.\' This lack of response to
injustices against people with disabilities happens in every aspect of
the criminal justice system. Police officers feel this is a problem for
the social/human service system, while the social service system feels
this is a problem law enforcement officials should handle. No one system
is taking responsibility for these individuals because many working in
the system do not feel qualified or able to do so.

This lack of any one system taking responsibility results in part from
little to no communication between and throughout systems which interact
on behalf of defendants, victims and witnesses with mental retardation.
The state of South Dakota recognized this problem in 1994 when the
University Affiliated Program (UAP) developed a handbook of
recommendations specifically for human service and criminal justice
personnel to improve communications between these specific systems. The
first key recommendation given was that, \"The human services and
criminal justice systems must work closely together to assure citizens
with developmental disabilities are treated fairly and appropriately
throughout their involvement in the criminal justice system\"
(Scheinost, 1994).

Creation of such a resource demonstrates the need for more
accountability in a system where people with disabilities can easily
become lost with little to no hope of obtaining any help from advocates
\"on the outside\" (of the jail or prison system).

**Misunderstanding the Disability of Mental Retardation**

Mental retardation is still largely misunderstood by the general public,
as well as those who also happen to be police officers, defense
attorneys, prosecutors, judges and jury members. Moreover, these
individuals only consider visible disabilities, such as blindness or
Down syndrome, as being significant enough to warrant their attention.
Many people are still unaware that approximately 89% of all people with
mental retardation are mildly affected, meaning their disability is
often not immediately recognizable upon outside appearance alone (The
Arc, 1993). This lack of identification and understanding of the
disability of mental retardation may cause problems in many areas of
that person\'s life, such as in the educational, health care or social
service system.

However, this problem of misunderstanding is especially dangerous and
threatening to those who become involved in the criminal justice system.
The consequences of being arrested, taken to court and detained in jail
or prison are much different from the consequences of being placed in a
segregated educational system or being denied medical treatment based on
having a disability. While the latter situations are certainly unfair
and can result in serious consequences, a person with mental retardation
who becomes involve& in the criminal justice system faces consequences
that are potentially more threatening (even to the point of losing a
one\'s own freedom and life) due to the nature of the criminal justice
system and lack of advocacy available. .

One frightening example is Johnny Lee Wilson, a man with mental
retardation who spent almost a decade of his life in prison for
committing a crime (murder) which he did not commit. He was forcefully
guided by investigators to \"confess\" to the creme duivng a leagony and
kwy Vaemfiil questioning period. \'the Gzovemar finally pardoned Wilson
when the actual murderer confessed. Dr. Denis Keyes is a psychologist
and special education professor with the University of Charleston at
South Carolina who I have had the opportunity to work with on a federal
death penalty case involving a man with mental retardation in Texas.
He\'s conducted psychological testing on several defendants with mental
retardation facing the death penalty. According to Dr. Keyes, *\"What
helped convict Johnny Lee Wilson was that he is mentally retarded.
People with mental disabilities effectively come to the criminal justice
system unarmed and ill-equipped. .. \[they\] are taught that the police
are our friends, that they are the people we should trust to help us
when we need help, and when you\'ve got a problem, who do you call?\"*
(Atchison & Keyes, 1996).

***\'The P&A in California is unwilling to support legislation that
would prohibit the death penalty for people with mental retardation
claiming the lack of evidence of how many people with this disability
are on death row.***

Once a person becomes involved in the criminal justice system as a
defendant, it is not easy to get out of the System and virtually
impossible to receive any type of advocacy or rehabilitation services.
Even if the person is recognized as having a disability, there are
rarely specialized programs for offenders with mental retardation that
pan ensure a safe and appropriate placement while imprisoned.

On the other hand, if the person becomes involved as a victim, the
person is much less likely than a person without a disability to be seen
as a credible person to provide \"reliable\" testimony. Because of the
district attorney\'s misunderstanding of mental retardation, he or she
may assume that because a client has mental retardation, there is little
to no chance of prosecution. Giving people with disabilities the
opportunity to voice injustices perpetrated against them is a major area
of concern since research has found that people with disabilities are
about twice as likely as others to be victimized (Sobsey & Doe, 1991).
Whether a victim or .aspect, a person with mental retardation faces
insurmountable obstacles to a fair hearing. If accused of a crime, At
individual faces a greater risk of being found competent to stand trial
and found guilty of the charge, whether or, not the person is guilty. If
victimized, the person seems to face a greater risk of being found
incompetent to \`stand trial and given no opportunity to provide
testimony.

People with mental retardation must be given more opportunities to learn
how to protect their rights and themselves whether they are accused of a
crime or victimized. Such instances of training and education rarely Um
until the person is forced to learn by becoming directly involved in the
criminal justice system. There continues to be little availability of
training materials for self-advocates on these issues. Many advocacy
groups )who desire to provide such training may find it difficult to
find curricula that is easy to use and affordable. It is \'fair and
unrealistic to place all of the responsibility on self-advocates to be
trained and to be able to confidently front police officers and others
in authority, but neither should their abilities be underestimated in
protecting :l\* own rights when necessary. Providing self-advocates with
education about what to do if arrested, how to how who to trust and how
to know when they are victimized is essential in preparing such
individuals for a life of independent living in the community.

Likewise, all sectors of the criminal justice system require a constant
flow of training on mental retardation. \~4fficers, much like the
average member of society, do not have a good understanding of what
mental retardation \'it. They may assume a person with mental
retardation is drunk or on drugs when the person has mental won and,
possibly, other related disabilities that gives this appearance. Police
officers are on the front-line of the criminal justice system and have
the ability to prevent unnecessary incarceration when appropriate. For
reason, the training and educating of officers about mental retardation
should be an ongoing activity 4wdertaken by local law enforcement,
advocacy groups and other disability-related organizations throughout
the country.

Courtroom personnel, specifically judges and attorneys, need training as
well. If a police officer fails to identify \~\*at the defendant who is
charged with a crime or that a victim of a crime has a disability, a
judge or attorney can maize the disability and make appropriate
accommodations. In fact, the court, defense counsel and prosecutors have
required by law to raise the competency issue whenever there is any
suspicion that a person may have a mental disability (Pate v. Robinson,
1966). This law holds little purpose if people with mental retardation
who go ,Is court are not being identified as having a disability.
Defendants with mental retardation are generally not referred for
competency evaluations because attorneys (both public defenders and
prosecutors), judges and \'sic clinicians either do not recognize the
disability or do not believe the disability is severe enough to require
further investigation (Keyes & Edwards, 1996). Fortunately, some
training materials have been created to educate self-advocates, police
and court personnel. The following section will explain these efforts in
greater dew.

The Arc of California recently surveyed probation officers, prosecutors
and the courts to find out their desire for training on mental
retardation and found that not one prosecutor felt there was a need for
such training. Mental retardation is not only misunderstood, it is not
even identified because many prosecutors do not feel someone \"mildly\"
effected truly has a disability.

**Past and Current Initiatives to Confront Injustice**

Various projects have attempted to deal with the issue of people with
mental retardation in the criminal justice system as far back as 1971
when the first training effort of significant importance (sponsored by
PCMR) was held in Newport, Rhode Island. A conference was held
consisting of law enforcement and mental retardation professionals to
educate individuals in both systems about each other and defendants with
mental retardation. A number of projects have followed focusing on
various topics such as training of juvenile justice judges, development
of screening tests to screen for adolescents with mental retardation in
a Florida detention center, development of comprehensive model for
coordinating services to adult offenders with developmental disabilities
in a local jail setting, formation of statewide task force in New York
and surveying UAP\'s to find out who was providing training in the area
of criminal justice (Messinger & Davidson, 1992).

There are currently a number of excellent projects underway to combat
the injustices faced by people with disabilities. These are highlighted
and clearly defined in an effort to discover what is needed at this time
within the mental retardation and criminal justice field.

The National Advisory Group for Justice (NAG) is funded through the
Administration of Developmental Disabilities (ADD). Its goal is to
prevent discrimination against people with developmental disabilities in
the criminal justice system and does this by educating self-advocates
about the criminal justice system, advocating for specific individuals
through circles of friends and providing legal advocacy for people with
disabilities who are arrested.

The Justice Now! project located in Texas is another initiative funded
through ADD which is producing multiple training curricula specifically
designed to allow self-advocates the opportunity to provide training to
other self­advocates, as well as criminal justice personnel. A disability
screening tool was also developed to help accurately identify people
with mental retardation entering the criminal justice system in Texas.

Temple University\'s Equal Justice project at the Institute on
Disabilities/UAP in Pennsylvania is addressing the need for information
and training by developing two sets of curricula for criminal justice
professionals and people with disabilities, as well as trying to
implement the topic of mental retardation into their law school
curriculum. It also offers a statewide network of leaders in the areas
of law, psychology, law enforcement, corrections advocacy and
self-advocacy for those assisting people with mental retardation in the
criminal justice system. They are writing a bi-monthly newsletter and a
listing of resources which will be placed on the Internet.

The Arc of the U.S. has been involved in criminal justice issues for
some time. The organization developed a position statement, \"Access to
Justice and Fair Treatment Under the Criminal Law for People with Mental
Retardation\" which specifies some of the major roadblocks to justice
people with mental retardation face on a continual basis. The Arc
obtained a one-year grant in 1994 from the U.S. Department of Justice to
develop materials for self-advocates, police officers and court
personnel to help each population understand what to do when in contact
with one another. The Arc also developed a national resource list in the
attempt to begin gathering all of the most current resources in the
field, including \"model\" programs for offenders with mental
retardation. At the national level, The Arc provides support and
technical assistance for members and other individuals seeking practical
advice when someone they know becomes involved in a criminal justice
situation. Chapters of The Arc are also active at the state level. State
chapters monitor statutes which impact individuals with developmental
disabilities and many operate programs or conduct initiatives to protect
the legal rights of such individuals. Chapters in New Jersey, New Mexico
and California provide outstanding examples of how The Arc is making an
unequivocal impact.

The Arc of New Jersey operates the Developmentally Disabled Offenders
Program (DDOP), one of few programs nationwide that provides
alternatives to incarceration for defendants with development
disabilities. The program, directed by an attorney with a background in
criminal defense law, serves as a clearinghouse for information about
offenders with developmental disabilities and acts as a liaison between
the criminal justice and human services systems. The DDOP, through the
use of a Personalized Justice Plan (PJP), offers the court alternatives
to incarceration for people with developmental disabilities. PJPs
identify community supports and provide least restrictive,
community-based alternatives for offenders, while holding them
accountable for their \~dions. The PJP is presented to the court as a
special condition of probation or parole. If it is accepted by the Judge
and the offender is placed on probation or parole, DDOP then monitors
the PJP until the person completes \* or her sentence. Additionally, the
program provides technical assistance to attorneys who represent people
With mental retardation, educates individuals with developmental
disabilities about confusing aspects of the criminal justice system and
immediately intervenes on the client\'s behalf when necessary.

The Arc of New Mexico operates a similar program called The Justice
Advocacy Project (JAP). JAP provides advocacy services statewide to
adults and juveniles with developmental disabilities who are detained by
the police i who are accused or convicted of crimes. They provide
individual advocacy and a coordinated system of follow-up or aftercare.
JAP also provides systems advocacy by actively supporting legislation
that promotes improved treatment, habilitation and the development of
specialized programs for offenders with developmental disabilities.
People with disabilities are educated about individual rights, rights
when arrested, what constitutes illegal behavior and consequences for
breaking the law. Specialized training is also offered to law
enforcement, the judiciary, and probation, correctional and parole
officers. Currently, JAP is advocating for a change in the Criminal
Competency Code for persons with mental retardation so that an
individual who is being confined, Waiting to see if he or she becomes
\"competent to stand trial,\" would be capped at one year.

The Arc of California formed the Criminal Justice Task Force for Persons
with Developmental Disabilities in 1995 to address the problem of
increasing numbers of people with developmental disabilities entering
the criminal justice system, and to promote better coordination between
criminal justice and mental health/mental retardation agencies. The task
force convenes a number of committees that cover a wide array of topics,
including victims of crime, incarceration and community resources.
Included on these committees are self-advocates, psychologists,
attomeys, and police officers. The goal of the task force is to identify
specific problems in California and propose solutions in the form of
legislative, policy and procedural reforms. The task force is currently
involved in creating materials for public defenders who represent
clients with developmental disabilities.

By looking closely at past and current attempts to successfully handle
problems of people with mental retardation in the criminal justice
system, it becomes evident that there are some excellent strategies
already taking place. Such models of practice must be further analyzed
in order to pinpoint what works and why. Without any true measurement of
what makes a program successful, there is little hope for continued
funding for these necessary programs.

**How To Confront - Three Proposals for Policy Implementation**

After speaking with leading experts in the field who have devoted
themselves to years of careful study and relentless advocacy efforts, it
has become clear that many of the same problems we were facing fifteen
to twenty years ago within the field of criminal justice and mental
retardation are the same problems we face today. PCMR\'s [Report to the
President on Citizens with Mental Retardation and the Criminal Justice
System]{.underline} written in 1991 mirrors this truth. Recommendations
included having a national focus, conducting research and increasing
awareness of mental retardation (PCMR, 1991). These suggestions for
change remain much the same today, however, the strategies to reach
these goals need revisiting.

We should be embarking on new challenges, focusing more attention on
prevention efforts. Yet, as it stands, we continue to pragmatically
focus more of our attention on those individuals with mental retardation
who are already in the criminal justice system since these individuals
seem to require the most intense advocacy efforts. For example,
individuals with mental retardation facing the death penalty typically
receive greater attention than a person with the same disability who is
on the verge of entering into the criminal justice system simply by
hanging around \"the wrong crowd\" and being arrested for petty theft.

How can we organize ourselves to provide a well-thought out plan of
advocacy in the interest of ALL people with mental retardation, whether
the person is facing the death penalty or charged with a misdemeanor,
whether the person is poor or wealthy, whether the person is a minority
or Caucasian, whether the person\'s IQ is 60-70 or 40­50, whether the
person has good communication skills or is non-verbal? This is the
challenge criminal justice and mental retardation experts have not yet
addressed or confronted completely. Someone or organization must be held
accountable to consider the \"big picture\" in order to ensure that
justice is distributed equally among those with disabilities. Providing
services based on anecdotal information instead of research is a waste
of time, money and, most of all, a waste of human potential in those the
policies are created to serve.

In attempting to analyze the issue of people with mental retardation in
the criminal justice system in its entirety, which is an incredible
challenge, three possible solutions seem likely to produce the greatest
positive impact at this time. The primary areas of change are focused
on 1) making research a priority, 2) creating a Federal Criminal Justice
Accountability Council and 3) developing a national clearinghouse on
criminal justice/developmental disability issues

**Make Research A Priority**

In order to create a clear direction for future policy, research must be
the top priority within the criminal justice and mental retardation
field. In a field where the existence of research is usually the
exception rather than the rule, it is difficult to attempt to pinpoint
with a strong degree of confidence what areas of research is most needed
at this time. However, the following have been selected in order to
provide a basis on which future research may be conducted.

• Conduct a national survey on all programs which serve (as their
primary client) offenders with mental retardation.

> A comprehensive survey has never been done before. Residential
> programs have been surveyed statewide; however, community-based
> programs were not included in the survey. When developing materials
> for The Arc\'s Access To Justice project which included identification
> of model criminal justice programs throughout the country, I heard
> from judges, attorneys and other criminal justice personnel about the
> lack of specialized programming for offenders with mental retardation.
> Providing training for criminal justice personnel to consider
> alternatives to incarceration is useless because there are not enough
> diversionary or other types of programs available for offenders with
> mental retardation.
>
> This study could provide a solid estimate of how many programs are in
> existence (demonstrating the lack of programs available) which could
> ultimately help states pose convincing arguments to their funding
> sources of the need for more programs. Agencies may then be more
> inclined to provide funding for specialized programming for offenders
> with mental retardation. Once this information is gathered, it should
> then be made available to police officers, court personnel
> (specifically probation and parole officers) and others who can use
> this knowledge to prevent inappropriate placements of people with
> disabilities in unsafe prison or jail settings.
>
> The U.S. Department of Justice conducted two different studies in 1989
> that serve as a model for possible use in gathering this information.
> The first was a national study prepared by the National Institute of
> Corrections (NIC) to help citizens, policy makers and criminal justice
> personnel identify referral sources (Foote & Sivilli, 1989).
> Information was obtained through a national mail survey of residential
> community correction facilities. One category in the survey was
> \"Services Regularly Available to Residents.\" Under this category are
> those facilities which offered any type of mental health services,
> which is described as \"group counseling, individual counseling,
> family counseling or psychological screening/testing.\" This category
> would need to be changed to show if a program offers services or
> programs specifically for people with mental retardation. The second
> study prepared for the NIC by the Institute for Economic and Policy
> Studies identified \"model programs\" throughout the country serving
> adult offenders with mental retardation (Coffey, Procopiow & Mller,
> 1989). Combining the first and second studies would provide a
> comprehensive overview of programs serving people with mental
> retardation in the United States.

• Conduct research that would identify specific number of people with
mental retardation who are involved in the criminal justice system, how
they became involved, who (if anyone) provided any type of advocacy
services, their ages, race and income level.

> The U.S. Department of Justice already collects information on inmates
> with regard to sex, age, race, region and other basic identifying
> factors that are helpful in creating reliable criminal justice policy.
> A category should be added to include whether or not the person has
> mental retardation. This will be a challenge since each state has
> different ways which they define this disability (according to the
> type of testing used and how mental retardation is defined).
> Therefore, the method of how the information is obtained should be
> explained in the study. Such information could be obtained through an
> already existing study conducted by the Bureau of Justice Statistics
> (BJS), which regularly conducts highly informative surveys on criminal
> justice-related topics. Another option, which would yield much more
> information, is for BJS to conduct a completely separate study
> focusing only on people with mental retardation in the criminal
> justice system. This study should include how the person became
> involved in the criminal justice system, who (if anyone) provided any
> type of advocacy services during the time of criminal involvement, the
> age, race and income level of the person. Such information should be
> used to guide federal and state policy makers in deciding where to
> concentrate their efforts in preventing crime involving people with
> mental retardation, as well as deciding what type of advocacy service
> is most effective in serving people with disabilities.

**Create a Federal Criminal Justice Accountability Council**

This council would be responsible for researching, thoroughly
investigating and carefully analyzing possible organizations who could
be held accountable to provide advocacy and other related services for
people with retardation and other developmental disabilities who become
involved in the criminal justice system. The council should consist of
experts in the field of mental retardation/criminal justice and include
one representative each state. First, the council would need to identify
all systems possibly involved whenever a person rs the criminal justice
system, including mental health/mental retardation centers, police
departments, assistance programs, courts, probation/parole offices,
human service departments, self-advocacy groups, rofit organizations and
other significant bodies. Next, the council should decide to what extent
each of these ies is involved and how.

After obtaining a good understanding of the above, the council can begin
to brainstorm and develop suggestions of possible
organizations/individuals who can be held accountable for ensuring the
safety of people with mental on in their respective states/communities.
The council should consider those who already have a le amount of
expertise or resources to provide such accountability. Some
organizations that are mandated to assist defendants with mental
retardation include Protection and Advocacy Systems, Councils on
Developmental Disabilities, University Affiliated Programs, Client
Assistant Programs and ional Rehabilitation programs.

The organization that seems best situated to provide assistance is the
statewide network of Protection and Systems (P&A\'s). P&A\'s were
mandated by Congress in 1978 to protect and advocate for the legal human
rights of persons with developmental disabilities. They are authorized
to use the legal system in order ensure the protection of such
individuals. Unfortunately, DeMoll states that, \"some state protection
and systems have shied away from significant involvement in the area of
defendants with developmental disabilities, for fear that the demand for
services could drain their resources\" (DeMoll, 1992, p.193).

This fear on behalf of P&A\'s to get involved in criminal matters
demonstrates that there is a need for advocacy services for people with
disabilities that is not being met. After being hired by The Arc of the
United States to direct a federally-funded criminal justice project, I
began taking a number of criminal justice-related inquiries from chapter
members, attorneys and other interested persons seeking practical advice
and helpful resources. In my experience, P&A\'s generally were (and
still are) unable to provide assistance in criminal matters. The council
should investigate further this issue and consider how P&A\'s may be
given more resources to provide adequate services for these individuals
on a consistent basis. The council should appoint specific individuals
and organizations to provide assistance for self-advocates and other
advocates who are unable to find assistance elsewhere. This network of
criminal justice/developmental disability advocates could consist of
staff persons with P&A\'s, national non-profit organizations, such as
SABE (Self-Advocates Becoming Empowered), PCMR, AAIVIR, The Arc of the
U.S. and other national, advocacy-related organizations.

**Develop A National Clearinghouse on Criminal Justice/Developmental
Disability Issues**

A clearinghouse would serve to accomplish several important initiatives
currently lacking within the criminal justice/developmental disabilities
field. These include:

• Promote the use of already existing training for 1) self-advocates (to
have a better understanding of criminal justice issues whether a
defendant or victim), 2) law enforcement (including probation/parole
officers, correction officers and others who work both within and
outside of the prison/jail facilities) and 3) court personnel (including
judges and lawyers to increase awareness of the requirements of the ADA
as it relates to people with various developmental disabilities).

• Provide a central location where information on criminal
justice/developmental disabilities can be gathered, organized and
disseminated as needed. The information to be obtained should
include: 1) a comprehensive database of past and current research
findings to provide criminal justice policy makers with factual data
with which to make important policy decisions, 2) a national listing of
experts with experience in the fields of both mental retardation and
criminal justice systems that can be used for referral purposes and to
identify new leaders in the field who can play pivotal roles in
continuing advocacy efforts on behalf of people with mental retardation
in the criminal justice system, 3) a national listing of programs and
resources serving people with mental retardation who are offenders or
victims.

These activities create opportunities to provide a consistent flow of
education to all those involved in the mental retardation, criminal
justice and court systems. Implementation of these strategies would not
be too difficult since some of this information is already in existence.
The Arc of the U.S. has already began the task of identifying programs
serving people with mental retardation and The Arc of California\'s
Criminal Justice Task Force has developed a somewhat comprehensive
listing of experts. As mentioned previously, ADD-funded projects are
currently developing training for self-advocates, police and attorneys.
Another benefit to having a national clearinghouse is to identify which
educational materials are still needed. For example, one possibility
that I have seen the need for is a handbook for parents, service
providers, caseworkers and other advocates to help them become their own
expert (to the extent possible) when advocating on behalf of someone
with mental retardation in the criminal justice system. Advocates often
seek information on the basics of criminal law, what to expect when
going to court and how to best advocate on behalf of the individual who
has been accused or victimized. The National Alliance for the Mentally
Ill (NAMI) has discovered the same need and responded by creating a
handbook specifically on mental illness issues for advocates. This book
should be replicated with the focus being on issues specific to mental
retardation. Providing this information to advocates increases the
chance that someone with mental retardation will not have to face the
criminal justice and court systems alone.

**Conclusion-Confronting On A Global Scale**

A number of excellent past and current efforts have demonstrated that
attention to this problem is worth our limited resources, time, effort
and money. Individual projects, programs and (a few) research
initiatives provide a solid foundation for which to begin developing new
strategies to confront injustices in the system against people with
mental retardation. Yet, one or two federally-funded programs a year is
not going to bring significant change. A statewide network of
interested, passionate and highly motivated advocates that can be held
accountable for ensuring equal access to justice for people with mental
retardation must be created in order to better understand the
far-reaching implications of this nationwide problem and to respond
effectively. The past inability to see the big picture issues within the
mental retardation/criminal justice policy arena has resulted in
recurring problems that could have been more adequately handled had the
entire system been considered during program and policy development. A
number of large systems interact to provide services for these
individuals, yet few people actually receive the kind of advocacy
required to ensure equal and safe treatment in America's system of
justice. Facing this harsh reality head-on by successfully confronting
injustices suffered by people with mental retardation can happen only
when a global perspective of the multifaceted issues is taken into
account.

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DHHS. Publication No. (ACF) 93-21046.

Reynolds, L. (1995). People with mental retardation in the criminal
justice system. Q&A of The Arc of the U.S: Arlington, TX.

Scheinost, Thomas. (1994). The criminal justice and human services
systems: A coordination handbook. South Dakota UAP: South Dakota.

Sobsey, D., & Doe, T. (1991). Patterns of sexual abuse and assault.
Jounal of Sexuality and Disability, 9 (3), 243-259.

Sundram, C. (1990, November). Inmates with developmental disabilities in
New York correctional facilities. Albany. New York State Comnimission of
Q\~&5 Cu-tot the Mentally Disabled.

The Arc (1993*). Introducation to mental retardation*. Q& A: Arlington,
Tx.

White, D. & Wood, H. (1986). The Lancaster County, Pennsylvania,
Mentally Retarded Offenders Program. *Prison Journal*, 65 (1) 77-84.

**TOPIC III: DIRECT SUPPORT ISSUES**

Papers/Presenters:

WORKGROUP REPORT: DIRECT SUPPORT ISSUES

Seth Krakauer

Rockaway Park

New York, New York

SOCIAL ACTION: A MODEL FOR COMMUNITY INCLUSION AND SELF ESTEEM FOR
PEOPLE WITH DEVELOPMENTAL DISABILITIES

Ruthe Levy Kahn, BS, RSW

And Shoshana Arden Rubenstein, ACSW

Independent Living Specialists

JARC

Southfield, Michigan

**Direct Support Issues**

By Seth Krakauer

Rockaway Park

New York, New York

PCMR\'s Next Generation Symposium in just one short year has shown its
vision by giving direct support issues its own platform for young
leaders to influence policy and practices which affect the lives of
people who support people with disabilities. Though people with
disabilities have more opportunities for services than ever before, the
services provided lack staff stability. Partnership and collaboration
between staff and consumers is needed for the best possible outcomes.
Some of the issues resulting in instability are as follows:

Nearly 10% staff shortages.

-   A tumover rate of 50-70%.

-   An average hourly wage of only \$5.97 an hour.

-   A high rate of staff being fired (15 % within first 12 months).

-   Very high recruitment costs (6 million a year in Minnesota).

-   A national and personal feeling of low status and value.

Clearly this results in a lack of continuity and support in the lives of
people served. Next Generation clearly supports the ideal of assisting
and challenging persons with disabilities to pursue quality lives. An
integral part of this initiative also means supporting the staff
intimately involved in their everyday activities. This includes
advocating for better wages, training and recruitment for qualified
people.

It is difficult to recruit and keep people who have a college education
because of the low wages. Though it is hard to determine exact
demographic information about direct support professionals, it is
believed that 80% are women between 18-36. This lack of diversity is
alarming. Additionally, only 33% have a BA or an Associates degree; 53%
have some college; and 21% are currently students.

Entry level requirements into the field are similar to those in a fast
food delivery job. An applicant simply must have no felony convictions
and a valid driver\'s license. It is no wonder that many newly hired
have little to no understanding of the hard work and dedication it takes
to serve people with special needs. Ironically, agencies helping the
disabled are one of the fastest growing industries. There is such a
desperate need for staff that in Minnesota, for example, a whopping 53 %
of all applicants are hired.

During the Next Generation Symposium on Direct Care Professionals, these
challenges were discussed. Following are some of the priorities
established to better support employees in the field:

-   Reduce turnover through better initial screening processes and more
    stringent required qualifications.

-   Offer better training programs for supervisors and direct care
    staff. Mentoring programs where seasoned staff train and support new
    staff have shown much success.

-   Educate the community through media press releases and improved
    relationships with local businesses.

-   Work to discover ways to increase job satisfaction. Ask staff
    directly about their needs.

-   Pursue efforts to offer higher pay and better benefits. For example,
    offer information to staff regarding day care and housing load
    opportunities. Consumer and staff could participate in in­services or
    some college courses together.

-   Ensure staff and consumer representation on all decision-making
    boards and committees. Encourage better communication between direct
    support professionals and administration. Ensure team collaboration
    on writing goals and objectives (i.e., Self-advocates chair their
    own goals/needs meetings and ensuring the inclusion of direct care
    staff.).

-   Offer more opportunities for conference/trade show participation.
    Encourage management to fill in for direct support workers in their
    absence. Allow the formation of local committees with initiatives
    similar to PCMR\'s on a local level.

-   Pursue ways to get more young people interested in the field.
    Encourage agencies to participate in volunteer

-   Encourage collaboration between agencies.

-   Individuals should lobby for more flexibility in state requirements.

Although the goals are clear, the potential barriers to change loom
large. Many fear that middle management would not support these
initiatives. More empowered direct care staff might somehow result in a
reduction in mid programs (Youth groups, Fraternities, High Schools,
etc.). Offer high school and college internships.dle management\'s power
or status. Therefore, there must be support for these goals at all
administrative levels. Even more important to the success of these
initiatives is the procurement of funds to support increased wages and
benefits. Currently, most agencies are unable to offer increased pay and
benefits, especially costly pensions and on-premise employee childcare.

These recommendations need to be advocated not just by staff, but by
consumers and their families; the community; and local, state and
national leaders. This collaboration will lead to a win-win situation.
The millions of dollars wasted on current practices can be funneled to
increase the numbers of long-term competent staff who satisfy consumer
and family needs. This will not happen by keeping silent. We as direct
support professional need to be, along with consumers, diplomatically
assertive until a top down mindset realizes the benefit to having all
involved. We do believe that this is slowly occurring and are excited
about the 21st century.

This report could not have been presented without the hard work of
direct support professionals, staff agencies, state leaders,
self-advocates and families. I would like to thank Amy Hewitt for her
research; self advocate and 1997 Elizabeth Boggs award recipient, James
Meadours for his heart felt personal experiences; Shoshana Rubenstein,
also a Elizabeth Boggs award recipient, for her presentation of 21st
century ideas that she has been instituting for years; Beth Pittinger
for her mentoring; the entire Direct Support Issue Workgroup; PCMR
Staff; and finally Hoong Yee Lee Krakauer for her intense support of her
Direct Support Professional husband and recording of this topic.

**Social Action:**

**A Model for Community**

**Inclusion and Self Esteem for**

**People with Developmental Disabilities**

By Ruthe Levy Kahn, BS, RSW

and Shoshana Arden Rubenstein, ACSW

Independent Living Specialists JARC

Southfield, Michigan

**The Direct Support Challenge: Community Inclusion With Dignity**

The barriers to community inclusion for persons with developmental
disabilities are vast with lingering effects. Too often, adults have
been greeted with child-like interactions and expectations. Adults with
developmental disabilities have been viewed exclusively as recipients of
goods and services, when in reality, every person has the potential to
be a productive member of society. It is not uncommon to encounter those
in the community who want to \"do something for the kids\", when
referring to adults. These attitudinal barriers have negatively impacted
the self-esteem of those with disabilities, isolating the individuals
and creating diminished self-concepts. This results from feeling
dependent, insignificant and on the fringes of society.

While we have each been created with unique qualities, we also have
similarities. Individuals with developmental disabilities, just as you
and I, have the capacity to give to the community, in their own unique
way. The greatest source is the human heart and the desire to give of
oneself. Supports to actualize one\'s dreams must be given in a manner
that provides dignity to every individual.

As direct care workers, we have been involved with activities of daily
living, such as cooking, budgeting, personal care, employment,
education, legal, social and quality of life issues. We have been
relatively successful in offering supports as directed by the recipient
via person-centered planning (PCP) to create an immediate environment
that enhances self-esteem. Perhaps, we have also played a role in
building a positive atmosphere at the workplace or the local pharmacy or
other establishments. However, \"the community\" is a much larger place
than one\'s hometown. It includes local, national and more global
settings.

The challenge remains: to foster community inclusion of persons with
developmental disabilities in all aspects o life. As Albert Einstein
said, \"A person first starts to live when he can live outside himself.
.. we are here to d good and make this world a better place \... Life is
a gift, and if we agree to accept it, we must contribute in return.\'
The social action model was chosen to overcome these challenges.

**Social Action Model Objectives**

1\. To educate the community through personal contact by focusing on
common goals and similarities, talents, abilities and contributions.

2\. To build feelings of self-esteem and self-worth by being on the
giving end.

3\. To enhance empathy through opportunities to see others\' needs.

4\. To improve the social independence of Social Action Committee
members (hereafter referred to as SAC) through opportunities to
demonstrate leadership skills, make social contacts, work cooperatively
with others and be recognized for their efforts.

5\. To provide a truly meaningful service by meeting community needs.

6\. To enhance community integration by providing opportunities to form
natural relationships with other community volunteers as they work side
by side as equals.

**The Journey of the Heart-The Beginnings**

Although the idea of starting a SAC had floated around for a couple
months, it was difficult to determine how to start. It was a new
experience for all involved. The role of the supports staff person was
more involved initially, but as the numbers grew (from a handful, to
eventually 50 participants) and experiences expanded, SAC members took
on more of the leadership role. Support staff and committee members
worked side by side, stepping into the project with both trepidation and
anticipation. Little was known at that time of the challenges, growth,
social changes, pride, tenderness and bonding that would come from the
simple notion of giving to those in need. \"It is in giving that we
receive\" (author unknown) became the foundation of the group.

**The Projects**

The following stories will serve to illustrate SAC\'s journey to become
a model for inclusion, as well as the role of the direct care or
supports staff, the changes and the implications.

**The Cannery: The First Venture**

TV news flash: \"Several trucks were stolen from the local food bank,
each carrying food for needy families \... the intended recipients would
go without..\" This news story was the spark that lit the fire for the
birth of SAC. The food bank was contacted to offer help packing and
canning food to replace the stolen goods. The initial response was
positive. However, when it became known the volunteers were individuals
with developmental disabilities, the response changed to obvious
reluctance. The reasons given were : \"they will be slow\" and \"they
won\'t be able to keep up\" with the packing. It was also mistakenly
assumed the SAC was requesting food, since, after all, it was a group of
people with disabilities. It became quite apparent that a major priority
of the project would be educating the community and breaking down the
stereotype of the person with a disability as \"helpless\" and the
\"needy recipient\" which seemed to be so prevalent.

Once the project was identified, the staff role was to recruit
volunteers. For this initial project, 13 volunteers agreed to
participate. Flyers were sent to each volunteer confirming
participation, confirming all essential information (date, time,
suggested attire, summary of the project, transportation information,
etc.) and offering words of encouragement and gratitude in advance for
their upcoming efforts. (Note: Interestingly enough, it was later
learned that the flyers were kept by several SAC participants as a means
of recording their achievements.) This project (as well as all
subsequent projects) were photographed by the staff support person.
Volunteers were each given a photo album and photos of their
participation in this initial and subsequent projects. Following the
project, it was clear that social action participation had a definite
effect on self-esteem. SAC members shared their experience with family
members and friends with a great deal of pride. This offered family
members the opportunity to see the special gifts and achievements as the
central attributes as opposed to the \"disability\".

Social skills were also evident as participants were able to converse
with ease about their experience and capture eager audience with the
subject matter.

The group packaged food and canned several thousand items. For many,
this was their first volunteer experience. e volunteer who has severe
rheumatoid arthritis, scoliosis and Lupus, spent hours labeling cans.
She wanted to the electronic canning machine, but felt she didn\'t have
the physical strength to do so. She spotted another C member, who also
experienced numerous physical challenges, operating the machine, and
felt encouraged to try. She stated: \"If she can do it, I can too! I am
happy that I am able to help others, as many have helped me in life,
too. I feel good knowing that we will help make a difference.\" Quite
obviously, the SAC members inspire one another.

Following the project, volunteers lunched together, conversing about
their experience, their feelings, their effect on others and how the day
impacted them on a personal level. One volunteer shared that he felt
good that he could be of the larger picture \... an active, productive
member of society who is able to give the best he has to others in

meaningful and uplifting way. Another volunteer, who actually receives
food bank resources to supplement his limited income, commented \"I am
glad I can give back to show my appreciation for what I was given.\"

Clearly, the staff support role beyond initial organization of the
project, community education related to inceptions/stereotypes and
providing transportation, is one of providing opportunities. The
opportunity for actual participation as well as the opportunity to
\"debrief\' are equally important. The staff role is one of facilitator.

The SAC members who participated in this project gained skills in
working as a team on an assembly line, an experience which most had not
had (an opportunity to know success as a \"team\"), feeling a part of
something bigger. Volunteers shared feelings of empathy for those in
need, looking beyond themselves and their own needs. s particular piece
is significant, as unfortunately the stereotype model of persons with
disabilities being the recipients (as opposed to the givers) has given
rise to a \"welfare mentality\". To realize one\'s capacity to act and
\"me\" when \"give me\" is what has been reinforced most of one\'s life,
is quite an accomplishment.

The SAC was invited back several times, in efforts to package and ship
goods to Rwandan refugees and preparing packages for shelters for
homeless persons. Quite obviously, the initial perceptions/stereotypes
had changed! Each project offered opportunities to learn more about
others\' plights; in a sense, these were catalysts -for becoming a part
of a more global community. This was only the beginning.

**The Valentine Project**

As the SAC gained momentum due to members enthusiasm and desire to be
involved, the support staffs role was to facilitate exploration of
potential future projects. A decision was made by individuals in the
group to give Valentine remembrances to a homeless shelter so
individuals/families there would know they had not been forgotten. The
SAC decorated and stuffed 250 gift bags with 35 pounds of candy and
hand-written messages. While involved in the project, several volunteers
mentioned that they chose this idea because they were usually forgotten
on Valentine\'s Day when they were growing up. The packages, when
completed, were delivered to a local homeless shelter. When a
50-year-old volunteer was asked if the operation could be hosted at his
apartment, he was very reluctant. He eventually agreed. He expressed his
fears related to never having guests and not knowing how to host. Staff
support allowed him the opportunity to express his fears and to meet the
challenge. He successfully hosted a fabulous project (making cards and
packaging candy), cleaning his apartment, purchasing snacks and
welcoming each guest with grace. Fifteen projects later, he stated that
the Valentine project was his favorite as he built confidence in
himself, was the leader of the group and had since had many guests to
his home.

Homeless Shelters

Each year, local temples shelter and feed the homeless, typically around
Christmas time. SAC members agreed that they would like to join hands
with this existing project. The first year SAC was involved, the
volunteers were invited to put lunches together in an assembly line.
While every part of the project was valuable and necessary, it appeared
that we were assigned this particular task, once again, due to some
misconceptions related to abilities.

By the third year of participation in this project, the challenge was
met. The volunteer members of SAC planned, shopped, cooked, hosted and
served the meal. Many people wished to participate, but for a variety of
reasons could not be there. Their donations of money and baked goods
were just as significant. Everyone came to realize that giving comes in
all forms: financial, hands-on work, a smile, an open ear, a tender
touch \... The SAC volunteers worked hard to prepare a five-course meal,
and with a great deal of warmth, easily reached out to touch another
human being. The recipients of the meal brought tears to the eyes of
some of the SAC members involved when the comment was made that in the
past, they had never been served appetizers. The idea of being treated
with dignity and the value of this seemingly small act was easily
identifiable by committee members who understand all too well that
dignity is important to all of us.

As the support staff facilitated discussion amongst participants, the
social significance of homelessness was explored. The full impact of
homelessness was brought home to some volunteers when they had the
opportunity to talk and play with families with young children who were
homeless. Circumstances which create homelessness were also explored.
Once again, volunteers gained information and a comfort level which has
translated into improved social skills in making conversation. A SAC
member in her 50\'s, who spent most of her life in an institution,
actually leant a very attentive and empathetic ear to individuals who
were homeless. She expressed experiencing a bond \... a knowledge of
what it feels like to have no home of your own.

**Martin Luther King Day**

Each January, SAC members march and participate in community-wide events
honoring Reverend King and learn about civil rights. The SAC members are
side by side with people of all backgrounds, races and faiths. The
volunteers were initially afraid to venture out and expressed fears
about being with individuals who did not have developmental
disabilities. When asked to elaborate as to why they would feel more
secure with others \"just like them,\" comments were made that
individuals with developmental disabilities would not make fun of them.
Many members related stories of how they were called cruel names,
laughed at and degraded. The support staff role here was clearly to
facilitate a discussion related to \"equality for all,\" the embodiment
of the civil rights movement. Discussion moved on to how SAC members
could be self-advocates in such situations. The support staff was able
to facilitate a deeper introspective look, whereby individual members
became aware that they too, were labeling groups of people instead of
seeing others as individuals with their own thoughts, ideas, interests,
etc.

By looking at their own feelings of isolation when labeled and lumped
together by a single trait (disability), as opposed to their more
numerous unique attributes, SAC members came to understand the barriers
created by such thinking.

**The Purim Parcel Project**

Note: the holiday of Purim, observed by Jews, commemorates the rescue of
the Jews of Persia in the fifth century B.C E. One of the customs of
this holiday is to send gigs and goodies to friends and neighbors

Each year, a local agency spearheads a community-wide project to package
and distribute these food parcels to seniors, hospice patients, and
other isolated individuals just prior to the holiday of Purim. Some
years ago, SAC members were the recipients of these luscious packages.
The involvement of the SAC in this project, first and foremost, served
to meet a community need. In addition, through the involvement of
members of SAC, the host agency acquired quite a different perspective
on persons with developmental disabilities. The SAC is now an integral
part of the committee that plans and implements this annual community
event. Moreover, several members of the SAC sit on the planning board
for this activity, side by side with other leaders of community agencies
as equals. The SAC involvement has increased to at least three annual
community-wide efforts each year. One SAC member who now sits on the
planning board stated , \"We don\'t want a disability to be in our way.
We have so many things we can offer the community. It opens other
people\'s eyes to people with disabilities and what we can do.\"

Clearly, at one time the perception of persons with disabilities as the
receivers rather than the givers was held by the host community agency.
Not only has their perception changed, but a greater opportunity became
available to the SAC members. With prominent positions on the planning
board for several annual community events, SAC members have the
opportunity to interface with other community leaders as equals, to role
model for their peers, to offer encouragement to parents of children
with disabilities, not to mention to shine in their own right as persons
committed to their communities.

**Bosnia: Sweets For The Soldiers And Children**

In response to the suffering in Bosnia, the SAC organized a special
campaign in which they baked and shipped out thousands of cookies,
candies and cards to the American soldiers in Bosnia and to the Bosnian
children. They hoped these packages would bring a touch of home and let
them know that they are supported and appreciated.

SAC members from group homes and independent living programs all became
involved, side by side with staff and their family members. (Note: the
SAC members overwhelming response and enthusiasm sparked involvement of
general agency staff in the SAC project). SAC members baked and
contributed items they purchased. A conference room was turned into a
massive cookie decorating and candy packing event. Some individuals
volunteered to write notes/cards to accompany the packages.

A World War II veteran addressed the group, and brought home the point
that mail call was the day\'s highlight during his overseas experience.
SAC members heard firsthand that their valiant efforts would surely be
appreciated, warming hearts even under the most bleak circumstances.

The far-reaching effects of this project were evident:

1\. The global gateway was opened. SAC members touched the lives of
others on the other side of the world. A connection was made with a much
larger community. SAC became part of the international community, where
their actions and words had a direct impact on others\' lives.

2\. Members were recognized for their individual and collective efforts
not only by the guest speaker, but by the recipients of these packages.
A copy of a soldier\'s letter of gratitude was sent to all SAC members.

3\. SAC members realized their leadership qualities as they developed
and orchestrated this project completely on their own.

4\. In selecting this project, SAC members learned about other
countries, about war, politics and humanity. The more one learns about
others, the more one learns about oneself, about his/her capacity to
give, to be empathic and understanding. SAC members now felt confident
and joined in conversation when the subject turned to war, Bosnia, etc.
Members reported, prior to this, feeling alienated and uninformed when
news topics were discussed. Many members reported seeking out further
information from the media, which had previously been intimidating.

5\. SAC members said they \"felt so good knowing they could help so many
people.\" One individual said he felt \"rich inside, like he was a
goodwill ambassador.\"

**Detroit Historical Museum City-Wide Birthday Party**

This particular project was a bit different in terms of the origin of
the SAC involvement. A former JARC staff person, very much aware of the
SAC efforts, requested SAC participation in this massive effort. The SAC
members reputation for commitment and enthusiasm would be an asset to
this effort.

For this project, numerous art, social and civic groups gathered to
celebrate Detroit\'s history, community and diversity. Our SAC ran the
children\'s activity booth. One member described how meaningful this
project was to her: \"I got along with people from so many different
backgrounds. I used to be scared to come to large events, especially if
they were in the city. I guess I had my own prejudices and
misconceptions, because I was misinformed. Today was so special to me
because I got to teach others. Children asked me for advice and how to
spell certain words. I couldn\'t believe it. That was the first time
that anyone ever asked me for advice. It gave me a wonderful feeling.\"

**Make A Difference Day 1996**

In August of 1996, a van carrying 17 residents from a nursing home in
Detroit, had a tragic accident. Many of the elderly residents were
thrown from their wheelchairs onto the road, causing numerous injuries
and several deaths. Some of their peers who didn\'t go on this outing
were very shaken up when they learned what occurred and too frightened
to venture out. SAC hoped to bring a little joy to the residents of that
home and a reprieve from their painful memories.

Following an initial meeting with the Activities Director of the nursing
home, the scope of the project was determined. SAC members would visit
the residents, arrange for entertainment and bring refreshments, in the
hopes of offering support, comfort and sunshine inside, when outside
there was broken glass, debris, graffiti and deserted buildings.

In October, members of the group assembled, armed with hundreds of
dietetic baked goods (baked by many volunteers), gifts, cheese and
crackers, soft drinks and parry supplies. The volunteers visited with
the residents and exchanged hugs, food and conversation for several
hours. The staff support person was able to arrange for a group of
singers and musicians to put on a lively show at the nursing home. The
performers ended with Amazing Grace, which brought full participation
and tears to many eyes. It is difficult to recapture in words the warmth
and glow in the nursing home at that moment, a far cry from the dismal
setting first encountered where bags of donated clothing not fit to be
worn, were the first thing we saw.

SAC members were moved by both the warmth and determination of the
residents. It was truly touching to see the joy in their eyes as they,
too, sang and held out their hands. SAC members who had fears of being
around elderly persons were able to put those fears aside and reach out
and touch another human being who was isolated and afraid, feelings with
which they could identify.

**Changes And Outcomes Attained By Sac**

1\. Significant volunteer manpower is provided to both the local and
global community. Aside from the above-mentioned projects, the members
have contributed money to AIDS projects, created home-made get well
cards for hospitalized children, and helped to paint and rebuild homes
in the inner city, etc.

2\. Self-esteem and self-image have improved substantially in committee
members. The SAC enables those who have been accustomed to being on the
\"receiving end\" to be on the \"giving end\". Confidence builds and the
feeling of making a difference in someone else\'s life elevates
self-worth. Positive changes have been noted in many aspects of
committee members\' lives, from social interactions to attitude and
energy. In addition, leader-ship and organizational skills are built as
committee members take on more significant roles in planning, organizing
and executing projects.

> After each project, SAC members fill out a Social Action
> Participant\'s Survey. The members have an opportunity to discuss how
> they felt being part of the project, the impact of the project, ideas
> for future projects, etc. The staff support person has an opportunity,
> through this forum, to facilitate meaningful discussion amongst
> volunteers related to emotions, assessing the success of the project,
> etc. It is a very empowering process.
>
> During one of the debriefing sessions, the members described the
> skills they have gained, how being a member of SAC has effected them
> and why they keep coming back. \"I learned that I get along well with
> people. I didn\'t know that before because I feared groups of people
> that I didn\'t understand. I avoided them, just as others might avoid
> someone with a developmental disability. It\'s important to see others
> as individuals.\"
>
> \"I see myself in a different way now. I can be a leader and get a job
> done. I can also make people laugh and smile. When I grew up, people
> laughed at me. It hurt me and caused me to be afraid. Now I feel very
> proud of what I do.\"
>
> Another member commented: \"I want to dispel rumors about
> disabilities. I am a good example. It\'s so important to give back to
> the community. I feel that SAC gives me an opportunity to meet new
> people, learn about the world, socialize, be part of the larger
> community. I do not want to be shown favoritism or treated like a
> child. I am an equal and I can help others as well as anyone\...\"
>
> Yet another member said that she felt appreciated and important. She
> also commented that working with SAC \"makes me feel like a human
> being.\" This particular individual felt she had been excluded from
> \"mainstream society\" for so long that she did not feel a part of the
> community. Clearly, presenting her with an opportunity to be part of
> the community was all it took. .

3.  Society\'s perception of people with disabilities is changed. The
    mere involvement of the committee in organized volunteer events
    contributes to changes in public perception. As committee members
    showcase their own abilities through participation via SAC, or
    independently, their abilities become the prominent feature in their
    identities. It is no longer the disability that attempts to serve as
    the identity.

Members of this committee are working side by side with other
volunteers, building a relationship and contributing to a better
community. As noted previously, members now sit on a planning board for
community ­volunteer events. Their participation is requested for major
charitable events. Volunteers have also volunteered to mentor other
individuals with disabilities, again increasing their visibility as
positive role models. One SAC member stated that his efforts have
motivated individuals who do not have a disability to get more involved
in their communities.

**Budgetary Issues**

For the first three years of operation, JARC received no outside funding
for the SAC. In 1996, we applied and were fortunate to receive a
\$5,000.00 grant from the Widman Foundation to expand SAC. These
additional funds have allowed JARC to provide the staff time and
transportation expenses to increase the number of committee members, as
well as expand the number and scope of projects to be initiated by the
committee itself.

This has provided increased planning and coordinating opportunities for
the members. It is critical to bear in mind that SAC was successful in
its infancy without specific funding. Depending on the projects
selected, costs can be limited to existing staff and transportation.
Volunteers may be sought to drive SAC members at no cost. It is possible
to join hands on existing projects, whereby no cost would be involved.
Donations can be sought for goods and services to complement efforts.
BUDGET SHOULD NOT BE A BARRIER!

**Future Directions/Recommendations**

As individual committee members begin to identify favorite projects,
staff support personnel can assist that individual in making a project
their own. Support staff can explore options and assist in problem
solving a project that a particular member may choose to execute on
his/her own on a one-time basis or as an annual effort. An example that
could be realized is the Valentine Project. The individual for whom this
was his most meaningful project, could, with very little support,
identify a small group of friends who could each come armed with a bag
or two of candy and a heart of gold. This particular individual who is
very proud of his newly developed computer skills (on a donated computer
with donated teaching time) might choose to make Valentine cards to go
with the packages. Once the cards/packages are done, he could drive them
to a homeless shelter himself, along with his friends. This could
potentially be **his** project.

SAC members might participate in more community leadership
training/social action training, which could give way to greater
opportunities and greater community visibility in a positive light.

An awards recognition program for volunteer participation might
encourage even greater participation.

Ultimately, creating a community where SAC no longer needs to exist is
the real challenge. Community inclusion will be achieved when
individuals with developmental disabilities are welcomed as neighbors
and taxpayers, participating fully in every aspect of community life
they choose. Larger communities usually have many social action groups.
Through visibility, persistence and heartfelt efforts, volunteers with
disabilities will be included, eventually, along with everyone else.

**Background**

JARC (Jewish Association for Residential Care for persons with
developmental disabilities) is a 501(c), non­sectarian organization
dedicated to providing quality services which support men and women with
developmental disabilities as valued and integrated members of our
community. JARC today operates 16 homes and 4 independent living
programs serving 150 individuals. JARC is funded primarily by the
Michigan Department of Community Health and Oakland County Community
Mental Health Services Board. One-third of JARC\'s \$5.4 million annual
budget, or \$1.8 million is raised from individuals, foundations and
businesses. JARC is governed by an active, dedicated and knowledgeable
45 member Board of Directors. Over 300 volunteers enrich the lives of
people JARC serves and improve the productivity of its administrative
operations. JARC is proud that 90.7% of its budget is used for program
services; 5.6% for management and general; 3.6% for fundraising. Joyce
Keller, executive director for the past 19 years, serves on the
President\'s Committee on Mental Retardation.

The Social Action Committee (SAC) is coordinated by Shoshana Arden
Rubenstein, who has a Masters Degree in Social Work from the University
of Pennsylvania and has over 14 years experience in the human service
field. Ms. Rubenstein has worked at JARC for the past 4 years as an
Independent Living Program Specialist. In addition to her case
management responsibilities to 12 adults with developmental disabilities
living independently, Ms. Rubenstein developed SAC. (Note: SAC members
participate on a voluntary basis and are not limited to persons living
independently. Persons living in group homes have participated, and
depending on the project, individuals participate in a number of ways as
you have seen in the examples throughout the paper). Her role as staff
support to this committee is as follows:

• to serve as role model for both the participants and other community
members. Ms. Rubenstein role models positive, adult interaction.

• to provide education/exposure to SAC participants in relation to
community needs, whether these needs exist in our local community, a
neighboring community or are of a much more global nature, such as
Bosnia or Rwanda..

• to provide opportunities to build leadership skills.

• to provide opportunities for decision-making beyond ones\' own
activities of daily living.

• to provide opportunities to plan and carry out the various tasks
involved in each project.

• to provide opportunities for both project and self-evaluation.

• to coordinate and guide the process/activity on an as needed basis
(dependent upon the project and the skills of the individuals
participating)

Ruthe Levy Kahn has a BS in Special Education from Wayne State
University and is a Registered Social Worker with the State of Michigan.
She has worked with individuals with developmental disabilities for 33
years, beginning with volunteer work at the age of 13, teaching special
education, doing job placement, case management and a great deal of
advocacy work. Ms. Kahn has been at JARC for 10 years where she
currently supervises the DeRoy Independent Living Program and provides
supervisory support to Ms. Rubenstein and the SAC.

NOTE: A FULL SET OF APPENDICES ARE AVAILABLE FOR THIS PAPER UPON
REQUEST. PLEASE CALL 202-619-0634 FOR MORE INFORMATION.

TOPIC IV:

HOUSING ISSUES

Papers/ Presenters:

**HOUSING ISSUES**

Sally Jachum

Johnson County Developmental Supports

Lenexa, Kansas

**IN HOMES OF OUR OWN: THE PATH TOWARD SELF-DETERMINATION**

Louisa J. Hext

Coordinator for Special Projects

Franklin County Board of Mental Retardation and Developmental
Disabilities

Columbus, Ohio

HOUSING ISSUES

By Sally Jochum Johnson

County Developmental Supports

Lenexa, Kansas

**Background**

The topic of housing is one that effects every person with mental
retardation and their circle of support. The search is on for housing
that is adequate, safe, affordable and accommodating for those who are
coming home to tbeir communities in which their family and friends live.
Consumers desire and should be allowed a choice in where they live and
improved opportunities to afford housing in neighborhoods they chose to
live in.

At the 1996 conference, the housing issues workgroup discussed the
decline of large public institutions, The Home of Your Own Alliance, the
Fannie Mae \"Home Choice\" underwriting experiment and continued
barriers and disadvantages consumers face in finding homes of their
choice.

This year, the housing issues workgroup chose to focus on specific
issues important to housing challenges faced by consumers today, with
the goal of improving the housing access process for consumers. The
housing issues workgroup was made up a diverse group of people: family
members, self-advocates, direct support professionals, and
administrators.

The combined perspectives of two senior presenters in the field of
mental retardation, Michael Smull, Support Development Associates, and
Gary Smith, National Association of State Directors of Developmental
Disabilities Services gave the work group several issues to consider in
terms of how housing issues are conducted at present and the direction
in which it needs to go.

In addition, a junior presenter, Louisa Hext, presented similar issues
and gave a touching account of a consumer\'s story on her pursuit of
housing. Housing issues were examined in terms of new age thinking;
person-centered planning, housing assistance; opportunities and
challenges, and supports; self-determination.

1.  **New Age Thinking; Person-Centered Planning**: According to Michael
    Smull, when dealing with housing issues the focus needs to be on
    what the consumer needs and desires in their choice of a living
    environment. The person-centered planning process asks the consumer
    many questions that will help aid in the final decision on where
    this person would like to live. These questions may be centered
    around where they want to live, if they want a roommate, any home
    modifications needed, what can they afford, and what kind of
    supports are needed to assist them in living in the most independent
    environment they can. The consumer is also shown different living
    situations and environments to make an informed choice. The circle
    of support for the consumer needs to listen, be consistent, show
    action, be realistic, and don\'t make promises they can\'t keep. The
    idea of person-centered planning is the commitment to act on what
    you learn for people with mental retardation now working with the
    person-centered planning concept the quality of life is sure to
    improve keeping in mind the whole focus of person-centered planning
    being the consumer\'s wishes that are acted upon. According to Gary
    Smith, it\'s important for people to have a home of their own.
    Independence is nothing else if not being able to decide where one
    lives.

2.  **Housing assistance; Opportunities and Challenges**: Assisting
    people with mental retardation to obtain the housing they want in
    their communities poses various challenges. During 1970s and 1980s,
    housing and services were welded together. Group homes and other
    living arrangements controlled by provider agencies defined
    \"residential services.\" The person-centered support principles led
    to supported living. Supported living holds that services and
    supports should be brought to the individual in a living arrangement
    he or she controls. Slowly but steadily the number of people with
    mental retardation and other developmental disabilities who receive
    supports in a home of their own is growing.

> The old way of funding residential services was to combine funding for
> housing and services. This funding was not portable-if a person left a
> group home, he or she could lose the funding. For supported living to
> succeed, new ways of thinking about funding and related aspects
> emerged. There are four elements of successfully supporting people
> with mental retardation to live in a home they can call their own:

**Supports**. Supports need to be brought to the person. The Medicaid
home and community based waiver program is a particularly effective way
to pay for these supports. Waiver services need to be tied to a
facility. Waiver funding has played an important role in aiding funding
for services and supports to be separated from housing. It aided many
states in getting supported living off the ground. But, not all states
have taken advantage of the flexibility afforded by the waiver program.

• **Income**. If people are to live on their own, then they will have to
have the dollars to pay for rent and living expenses. Individuals
usually are eligible to receive income assistance payments and other
public benefits to help meet these costs. Helping individuals obtain a
job is another important part of their having the dollars they need to
meet their living expenses. Usually, the amount of assistance needed is
modest. However, other states make it difficult for individuals to live
on their own by taxing their income at high rates to off set the costs
of services.

• **Housing Assistance**. There are many opportunities for people with
mental retardation to obtain assistance through the public and private
sectors to buy or lease a home of their own. In some of these programs,
parents can help with the down payment. Gary Smith shared an idea
(Individual Opportunity Accounts) to change federal SSI policies to
enable individuals to save for a home of their own. Taking advantage of
housing assistance opportunities in important because it makes housing
more affordable for people with mental retardation.

• Helping Agents. Frequently, it is complicated to pull together all
that\'s needed to help a person find, obtain and pay an affordable home.
Thus, it makes sense to provide helping agents to provide assistance to
individuals who need it in navigating the various opportunities.
Complements to traditional case management services have emerged in
various states to provide this assistance.

As supported living has grown, the \"technology\" for addressing these
elements has matured. There are fewer barriers today than in the past in
assisting people with mental retardation and other developmental
disabilities to secure a place they can call their own and still have
receive the supports they need. In several communities around the
country, all people-regardless of the severity of their disability-are
living in homes of their own while receiving the supports they need from
public programs, their families, friends, and fellow citizens. They are
included in their communities, have the security that comes with having
a homes of their own rather than being dependent on service system
housing, and thereby enjoy real independence and citizenship.

Still and all, despite many successes, only about one individual in
seven who receives publicly-funded residential services and supports
lives in a home of their own (cite is the University of Minnesota 1997
residential services report). There is still a long road ahead in
creating the opportunity for every person to live in a home they call
their own.

3\. Supports; Self-Determination: The issue still remains on people
being able to meet the financial and support requirements of obtaining
an apartment or home of their own. The important component to keep in
mind is the need to give thought on what supports do they need in their
home? Many people are leaving large state facilities and coming home to
their communities and need services.

> According to the Residential Services for Persons with Developmental
> Disabilities: Status and Trends Report through 1996 about 75% of the
> states (38) have either closed a large state MR/DD facility or are
> planning to do so by the end of 2000. Fifteen states plan to close at
> least one large state MR/DD facility between 1997 and 2000. Overall,
> 21 of 216 remaining large state-operated MR/DD residential facilities
> are currently projected for closure in Fiscal Year 1997-2000. The
> total decrease in populations of large state MR/DD facilities between
> 1980 and 1996 was 71,152 average daily residents.

With the closing of large state facilities this poses the need for
service providers to meet the needs of the persons with MR/DD in their
home communities as well as persons already in the community living with
family for friends that desire a residence of their own. According to
Louisa Hext, individuals must be given the opportunity to identify where
and with whom they want to live. These choices should not be determined
by funding sources, but rather driven by personal choice. The concept of
Supported living, presented by Louisa Hext, separates housing from
services, therefore allowing people to have more power and control over
where they live and how they choose their lives. Supported living allows
individuals, regardless of their disability, to live in typical housing
in residential neighborhoods, alone or with person of their choice, and
with a strong and complementary community-based system of supports. The
principles of supported living encourage individuality,
self­determination, independence and the opportunity to assume
responsibility and control over one\'s life. The focus desire is to
support one person at a time and not compare one individual with another
to determine overall equity. The control over their own money can be
achieved by working with the person-centered planning support
individuals and with technical assistance. Costs can be reduced by
empowering individuals to be more creative with their individual
allocations while remaining accountable for those dollars spent.

**Recommendations**

1\. **Funding is portable**. The expressed desire by the housing issues
workgroup was the strong need for the individuals with MR/DD to have
individualized budgets, controlled by the individuals and flexible to go
with the person from service area to service area as they choose.
Pulling the funding streams together to meet their whole need rather
than the control being with the funding sources and agencies in the
states, counties, regions and provinces that provide the services. The
important aspect to focus on is that supports need to be brought to the
person. The Medicaid home and community based waiver program is an
effective way to pay for these supports. In addition, waiver services
need not be tied to a facility. Funding needs to be flexible and
portable. The continued availability of HCBS waiver will aid in the
funding for services and supports to be separated from housing.

2\. **Affordable housing**. The need for affordable housing is great.
Often individuals are left on waiting lists for Section 8 housing and
other assistance programs for years and then later find out that they do
not meet the financial requirements to obtain even these housing
assistance programs. The \"Individual Opportunities Account\'(IOAs) is a
recommended solution to this problem. The other assistance programs such
as FannieMae and Home of Your Own programs also need the continued
support to fulfill the housing needs of consumers. Supporting and
forming allies in home communities, allowing tax breaks and offering
financial

> control to go with the person are all ways of achieving the desired
> outcome of affordable housing.

3\. **Assessable and safe housing**. Often is the case that individuals
on fixed incomes are directed to unsafe, sub­standard accommodations for
housing. We recommend the continued support and enforcement of the ADA
law and Fair Housing Act, and the support of educational programs on ADA
to service providers, families, communities, and business owners. The
emphasis is recommended to educate and enforce these laws.

4\. **Real choices provided**. Our recommendation is to support the
education of providers on what informed choice is for the person with
mental retardation. Increase opportunities for self-determination.
According to Lousia Hext, often times individuals are encouraged to make
difficult choices with limited personal experience and knowledge of how
these decisions might impact their lives. To increase opportunities for
self­determination, individuals should be offered the necessary support
to make informed and responsible choices. Informed choice is necessary
to truly fulfill the opportunity to make safe and adequate choices and
take responsibility for these choices. The support and practice of
person-centered planning is the cornerstone of success for real choices
being provided.

5\. **Develop natural supports.** Natural supports is not just a new key
phrase but a real direction we must take to be successful and creative
with the supports for people with mental retardation. It is also an area
that needs to be approached with caution as to not eliminate needed
supports or allow someone to provide supports that is not adequately
trained to offer needed supports. The person-centered planning approach
should allow a person to design their support network. The conflict
comes when there is not a separation of supports from housing. An
example is if a person needs supports and the requirements of a program
is that the person has to live in their residential facilities provided
otherwise the person is not eligible for services if they choose to live
elsewhere in a place of their own choosing. These rules created by
systems may allow the individual to become lost in the system. This
approach provides limited choices by companies owning properties,
providing supports and require minimal choice opportunities. We
recommend individuals be given the opportunity to identify where and
with whom they want to live. These choices should be driven by personal
choice and natural supports are created as an outcome of these choices.

**Summary of Recommendations**

• Funding for consumer services should be portable and flexible. The
consumer controls the funding by choosing the services that best meet
their needs. Support needs are brought to the person.

• Housing for individuals with mental retardation should be affordable.
Tax breaks and financial savings plans would enable a person to better
afford a home of their own.

• Enforcement and education required of the ADA law and Fair Housing Act
to assure assessable and safe housing options.

• Informed choice is necessary and a citizen\'s right. Necessary
supports need to be maintained and encouraged to allow a person with
mental retardation the opportunity to make an informed choice based on
opportunities of experience and to develop knowledge of choices and
responsibilities they have.

• Developing natural supports would allow an individual successful and
creative ways of support. The support of the person-centered planning
process would allow natural and timely transitions of persons and their
support needs to tangible and developed supports in the community.

**References**

Anderson, L., Blake, E., Bruininks, R., Lakin, C., Polister, B., Prouty,
R., Sandlin, J. (May 1997) *Residential Services for Persons with
Developmental Disabilities: Status and Trends Through 1996*. The College
of Education & Human Development, University of Minnesota.

FannieMae. (July 1997). HomeChoice*. Homeownership for people with
disabilities.* (Brochure). Washington, D.C.

Hext, L. (August, 1997). *In Homes of Our Own: The Path Toward
Self-Determination*. Franklin County Board of Mental
Retardation/Developmental Disabilities. Columbus, Ohio.

Smith, G. (1997). *Individual Opportunity Accounts.* National Alliance
of State Directors of Developmental Disabilities Services. Littleton,
Colorado.

Smull, M. (1997). Support Development Associates. Kensington, Maryland.
Presenter at Next Generation Leadership Symposium, Washington, D.C.

Technical Assistance Center at the University of New Hampshire,
Institute on Disability/University Affiliated Program. *National Home of
Your Own Alliance.* (Brochure). New Hampshire.

In Homes Of

Our Own:

The Path Toward Self-Determination

By Louisa J. Hext

Coordinator for Special Projects

Franklin County Board of Mental

Retardation and Developmental Disabilities

Columbus, Ohio

Historically, people with mental retardation and related disabilities
were protected and corrected by the service delivery system.
Professional staff typically \"cared for\" and \"did for\" individuals
rather than providing them with opportunities to make independent,
informed choices. Similarly, while families provided the impetus for
many changes, they tended to shelter and isolate individuals. Such
practices resulted in limited encouragement or support for individuals
to lead autonomous and proactive lives.

Positive changes have occurred since the early 1970\'s. People with
disabilities are being viewed with increasing value and given more
opportunities to lead satisfying lives. This trend has emphasized
inclusion rather than segregation, increased opportunity for informed
decision-making and promotion of independence rather than dependence.
Despite progress, individuals have not always received support in
assuming these new challenges and corresponding responsibilities.

During the 1980\'s, *supported living* has emerged as an alternative way
of doing things which allows for greater autonomy in life choices for
individuals with disabilities. Supported living as a concept separates
housing from supports, therefore allowing people to have more power and
control over where they live and how they choose their lives. More
specifically, supported living evolved to allow individuals, regardless
of their disability, to live in typical housing in residential
neighborhoods, alone or with persons of their choice, and with a strong
and complementary community-based system of supports and services.

*Supported living* has created a powerful vision for the future. While
compelling and desirable, it has also introduced significant risks and
challenges. People have begun to experience increased power and control
and have been instrumental in defining lives that make sense to them.
Life is no longer confined to a \"program\" but according to how
individuals determine their life quality. It is successful when an
individual \"experiences a sense of place, when they or their agent
control their home and the support necessary to live there, and when
they occupy the valued role of homeowner or tenant and thus build equity
or credit through rent or purchase payments\" (O\'Brien, 1991).

The increasing gap between the defined principles and actual practices
of supported living has profoundly impacted ways people are supported
according to their preferences and desires. With reference to housing,
and *supported living* philosophy, some individuals are directed to
unsafe, sub-standard accommodations to demonstrate that they are living
in their own homes. In reality, this practice does not constitute home
ownership, nor choice and control of where these persons live.
Similarly, when facilities are simply re­labeled as the person\'s home,
or non-profit housing associations lease to individuals under the guise
of home ownership, the dimensions of supported living and it\'s guiding
principles are compromised. Commitments must be made to ensure that
philosophy becomes consistent with practice. Key stakeholders must be
encouraged to consider current practice and envision positive, desirable
futures, identify and discuss the challenges and barriers, and determine
what it will take to support people to live quality lives as defined by
the individual.

Professionals, practitioners, scholars, families and self-advocates have
raised endless questions such as:

1\. Given the inevitability of more restrictive funding sources and the
onset of managed care, can we support people effectively?

2\. Given the diversity of each person\'s disability, can we support all
individuals?

3\. Given each person\'s abilities, preferences, desires together with
their challenges and needs, can we create outcome-based, quality
supports for everyone?

4\. Given professional, family and public opinion, can we provide
effective, equitable, flexible supports which respond to these concerns?

5\. Given the significance of personal choice, how will systemic and
personnel issues maintain their balance while encouraging individuality,
initiative and innovation for those people we support?

6\. Given the importance of offering supports, which define the person
holistically, how can we guarantee a reasonable balance between choice,
health and safety, the provision of supports, which are equitable and
cost-effective, and those, which do not impinge on the person\'s defined
quality of life.

The overall vision is to lay out a path that makes sense to the
individual, a path which is pro-active, realistic and outcome-based.
Issues surrounding existing policies and procedures, equity, costs,
health and safety, often prevent us from making the requisite
commitments, experiencing accomplishments and creating change. Often,
simply open communication and willingness to discuss visions and
challenges, hopes and fears can lead to a more successful and flexible
approach to supports for persons who experience disabilities.

Now responding to individual needs and preferences and supporting people
in their own homes has become the verbalized norm, yet practice does not
always demonstrate the true acceptance of these principles. Supported
living as practice continues to grow in response to a variety of
financial incentives. The most significant impetus has come from the
recognition that individuals have the right to choose how they prefer to
live, who they live with and who will support them. This vision
challenges the traditional service delivery system. Housing is not
always considered separate from the supports provided to individuals.
Typically, operators of residential facilities place \"residents\" into
structured ways of living which reflect policy and procedure. On the
other hand, the supported living principles challenge this by
complementing each individual\'s unique vision. These principles
encourage individuality, self-determination, independence and the
opportunity to assume responsibility and control over one\'s life.

Despite some success in supporting individuals in more flexible ways,
funding is becoming increasingly limited at the federal, state, and
local levels. Most states are moving toward a managed-care approach to
supporting individuals with long-term disabilities and health-care
needs. Traditionally, managed health-care entities have operated will
supporting individuals with short-term disabilities. As individuals who
need long-term supports are funneled towards a managed-care approach to
service delivery, individual support plans must be developed which
clearly articulate how money will be spent. Key stakeholders must think
more creatively about spending which will lead to positive outcomes
which are equitable, affordable, and desirable. It is also imperative
that individuals and their circles of support have the opportunity to
develop useful decision-making skills so they can be empowered to
control dollar allocations.

The individual and their support network must trigger and direct the
design of their supports. Consonant with supported living philosophy,
all individuals should receive the supports which can lead to
independent, quality lives. In certain situations individuals have been
considered too expensive or not eligible for services, and therefore,
have been refused supported living dollars. If the principles of
supported living are embraced, each person\'s needs must determine what
it will take to make their life meaningful. Moving slowly and supporting
one person at a time will provide opportunities to make changes for
larger numbers of individuals over time. Certainly, supports must be
cost-effective and equitable, however, if individuals are compared with
one another to determine overall equity, the core principles will be
threatened. Initial investment in people\'s lives will create savings
further down their support path. Rather than paying close attention to
entire budgets within supported living programs and dispensing monies
according to perceived need, individual allocations should be calculated
for individuals with their support network. Together with technical
assistance and person-centered planning individuals can then assume
control over their money. Overall, costs will be reduced by empowering
individuals to be more creative with their individual allocations while
remaining accountable for those dollars spent.

**Liz\'s Story: No Way Out!**

Liz is a young woman in her thirties who resides in her own condominium
in a suburb of Columbus, Ohio. Liz lives close to family and friends and
receives daily assistance from her chosen support circle. At this time
Liz is very happy and leads a quality life created with the support of
her family, friends, direct support professionals and others who care
about her. Following an automobile accident in 1980, Liz suffered a
significant brain injury. Consequently, Liz\'s plans to attend
university as an art major and pursue her dreams as an artist were
postponed. Following her rehabilitation she began to receive services
from the local county board of mental retardation and developmental
disabilities together with monies from a federally­funded waiver. Over
time, Liz began to voice concerns that the \"system\" was not responding
to her preferences and needs. Initially, Liz had lived with her family
and received supports in her home. She was later given the opportunity
to move to a house leased by a non-profit housing association. The
process provided many opportunities for choice-making including which
side of town she wanted to live on, the type of house she wanted to
reside in and whom she wanted to live with. She was also involved in the
development of her individual service plan. While these were significant
opportunities to make choices, a number of conditions and restrictions
were imposed. Liz had to choose two housemates from a list of
individuals who were eligible for services and each person had to agree
on the same provider. Liz asked to bring her own support person with
her. It was decided that an exception could be made, and Liz moved into
her house with two other women, a common provider and her own support.
She lived there for three years.

Over time, Liz did not feel at ease with her housemates. She expressed
difficulty relating to them feeling that her disability was quite
different from theirs. She began to ask people to listen to her
frustrations. Few people took the time to empathize with her and
encourage her hope to move to a place of her own. This was in part due
to the policies of the supported living program. While it encouraged
individuality and independence, most opportunities were not separate
from the non-profit housing association and most of the funding was
directed towards this housing. While people were encouraged to make
choices, they were not given other residential options such as leasing
off the open market, buying a home, living alone or sharing with
individuals who do not receive services from the county board.

Given Liz\'s frustrations, she chose to participate in a self-enrichment
program which allowed her to articulate her hopes and wishes and to
create a plan of action. Liz clearly indicated her desire to move, yet
again the \"system\" did not listen to her. Her wants and preferences
did not appear to coincide with the menu of opportunity offered by the
supported living program. As Liz became more frustrated, she directed
her dissatisfaction towards her housemates by shouting and hitting them.
Though it was unfortunate that Liz chose this way to communicate her
preferences, she felt there was no way out; that this was the only way
to be heard. Her negative actions clearly had a significant impact on
the opportunities which became available to her. During this time, Liz
also responded positively by developing a circle of support to help her
define her path. Her circle pursued a variety of home ownership options.
Finally, Liz and her family identified their desire to buy a condominium
close to her sister\'s home. Since Liz received waiver supports, she
could choose where she wanted to live and still bring her supports with
her. She wanted to buy her own residence, make it accessible to her
needs, afford to live and still maintain her benefits. The circle
communicated their hopes to the supported living program which then
agreed to assist Liz if she could come up with a reasonable plan. Liz
was asked to consider ways to reduce her cost to support herself over
time. She was offered a rent subsidy and a loan to make her condominium
accessible and provided with the opportunity to think creatively about
what it would take to make her vision a reality.

Liz\'s family purchased the condominium to protect Liz\'s social
security benefits. Considerable discussion was given to making the
condominium accessible to Liz so she could increase her independence and
in so doing reduce the amount of daily support she needed. The initial
investment required \$10,000, money Liz did not have. The supported
living program loaned Liz the money to complete these accommodations and
a re-payment plan was established over a five year period. Liz was able
to reduce the amount of money she required for her rent subsidy, which
allowed her to reallocate money towards her loan. In addition, she
reduced the amount of formal supports through the establishment of a
natural support network of family and friends, defined periods of time
she chose to spend alone, and established an emergency contact plan. All
of these supports have offset the need for extensive professional
services. Liz is already saving money in comparison to her previous
support costs.

Liz has found more time to pursue her artistic talents. She is currently
considering ways to generate income to support herself more effectively
and to be less reliant on assistance. Liz recently hosted an art show at
a local coffee shop which created new relationships in her neighborhood.
She has networked with peer artists and has found people are very
interested in her work. This interest triggered her desire to start her
business selling notecards and prints. In addition, she has found more
time to involve herself in local community events facilitating the
development of even more community connections.

Thinking creatively and allowing the flexible allocation of funds, the
\"system\" finally responded to Liz\'s own vision of a desirable life.
This solution has proven to be cost-effective. Some may consider this an
inequitable way to spend resources, but it has proven to be an
investment which has allowed an individual to live according to her own
identified outcomes. While more expensive initially, costs will diminish
over time. Liz herself is committed to re-paying the loan and making
monthly rent payments to her family. This form of best practice can be
replicated. Liz\'s story offers a vivid example of the importance of
asking people what they want and demonstrates the creativity that can be
afforded in effectively supporting individuals, rather than expecting
people to fit into pre-defined programs and limited options.

**Prescription for Change**

Liz\'s story highlights ways to enable people to start on a path towards
a self-determined, quality life. Her story offers hope that individuals
can be supported in ways which acknowledge, respect and build personal
visions for positive futures. More generally, we learn from Liz the
benefits of supporting individuals to:

1\. define their own quality of life;

2\. choose how, where and with whom they live;

3\. select their own supports and providers of service;

4\. direct the planning, and implementation of these supports;

5\. have the opportunity to increase personal life experiences by moving
towards their desired goals;

6\. lead life and choose supports based on individual and personal need;

7\. increase the flexibility and control of the financial resources
available; and

8\. assume the dignity of risk and responsibility for aspects of this
life.

Individuals with disabilities have the same dreams and desires as those
who do not have disabilities. The only difference is they require
assistance to identify and work towards these dreams. Notions of quality
are often affected by the presence of disability. \"Systems\" have
typically pictured lives of persons with disabilities as quite different
than the lives of others. The standard held for quality of life should
be consistent and not compromised because of disability or for any other
reason. Overall, people do not rely totally on professional services and
supports, yet this is the backbone of service delivery for individuals
who experience disabilities. Generally, people reach out to one another
through mutual support networks. Individuals with disabilities should be
encouraged to do the same. Direct support professionals should help to
connect individuals with other community members. The hope is for
support professionals to become companions rather than supervisors and
ensure a connection with unpaid community members, together with
families and friends.

To help people achieve self-determined futures, and to respond to the
supported living principles, the following strategies should be
considered:

1\. **Increase Opportunities for Self-determination**-Individuals now
have an unprecedented range of choices in their lives. Often they are
encouraged to make difficult choices with limited personal experience
and knowledge of how these decisions might impact their lives. To
increase opportunities for self-determination, individuals should be
offered the necessary support to make informed and responsible choices.
Provided with opportunities to make valuable contributions, individuals
will begin to assume increased responsibility in their lives and in the
development of their service plan. At the same time, it is crucial that
individuals understand their roles and related responsibilities when
making decisions. Support should be offered so that individuals can make
realistic and informed choices, and assume the risks associated with
each option. As individuals become more comfortable identifying what is
important to them, and participate actively in the process, the supports
developed will reflect more desirable and meaningful outcomes.
Individuals should be afforded opportunities to choose people to assist
them to participate in a circle of support. Circles of support happen
when groups of people get together and brainstorm what it will take for
the individual they care about to reach their visions and dreams.
Families, advocates, friends and direct support professionals are
encouraged to become active participants in support circles.
Furthermore, these advocates should be empowered to help people plan and
to define their vision of a desirable future.

2\. **Use Circles of Support and Build Personal
Networks**-Individualized planning and support can maximize the
individual\'s voice together with support from people closest to them.
Active support networks offer individuals the opportunity to develop
skills to speak out and to be heard and respected. Each individual
should be assisted to develop a support circle which can define, plan
for and realize an individual\'s hopes, dreams and preferences. It
should be proactive and future-oriented, helping to develop positive,
realistic and responsible images of desired futures. Family, friends,
advocates and direct support professionals should be encouraged to
participate in circles to the extent desired by the individual.

> The circle of support should be considered a complement, and thus a
> component of, the individual planning process. In this way the
> individual service plan can be driven by the individual and those
> people important to them. Individuals will be encouraged to cultivate
> their gifts, and talents and use them to define and implement their
> life plans. Furthermore, the circle of support, together with the
> individual should be afforded the opportunity to access resources
> utilizing individualized budgets which will be spent according to
> consensus of an individual\'s needs. In essence the circle assists
> with problem ­solving and supporting individuals to achieve a desired
> life-style.
>
> It is routinely assumed individuals with disabilities are reliant on
> structured, professional supports in order to lead quality lives. This
> implies that individuals with disabilities lead lives which are unique
> and different than other individuals. But everyone relies on personal
> networks to some extent. Natural support networks should assist people
> plan their lives with people who care about them. Personal
> relationships will vary by situation, need and intensity of
> involvement, and can help to build community belonging and facilitate
> an individual\'s participation in their communities to the extent and
> level desired.

3\. **Support Individual Choice of Housing and Housemates**-Individuals
must be given the opportunity to identify where and with whom they want
to live. These choices should not be determined by funding sources, but
rather driven by personal choice. Individuals should be offered the
assistance to make informed decisions pertaining to this. Individuals
should not be expected to live with various people assigned to waiting
lists. They should be encouraged to select people whom they value,
respect and are prepared to live with. By developing their own vision,
including such options as living alone or with housemates, buying or
leasing property independent from non-profit housing associations,
individuals will assume the basic freedoms associated with
self-determination.

> Leasing from housing associations is a viable option for some,
> although it occasionally limits individual choice, and does not always
> reflect creativity and flexibility in the design of housing and
> supports provided. The limitations can be demonstrated when
> associations purchase multiple properties and lease to two to three
> individuals at a time. Often the person\'s needs are overlooked with
> the most attention given to reducing waiting lists by filling houses
> and serving large numbers of people. Supports should be offered which
> reflect individual need, and are separate from the actual residence.
>
> Individuals should receive allocations to spend as they choose. In so
> doing, they can lease or buy property, invite people to live and share
> expenses if desired and take an active role in the planning,
> implementation, evaluation and revision of their supports. In certain
> situations individuals will realize their choices may expend more
> resources, however, determining how they live their lives makes the
> most sense. Individuals should be afforded the dignity of risk
> together with the related responsibilities to make these choices, and
> will require training and support to be proactive. In some situations,
> individuals will desire additional support to meet potential
> housemates, to spend time together and to understand life issues
> surrounding cooperative living. People should be supported to choose
> housemates outside the \"system\" and waiting lists. They should also
> have the opportunity to choose who provides support to them.
> Individuals should be encouraged to hire support professionals who may
> be different than those of their housemates.

4\. **Increase Clarity about Roles and Responsibilities of Direct
Support Professionals**-Individuals\' lives change dramatically as they
begin to experience more choice and control in their lives. One major
area of change is their relationships with service providers which may
become more mutual and reciprocal. Roles and responsibilities of direct
support professionals will be determined by each individual\'s unique
situation. Comprehensive training should be provided to ensure an
ability to implement and realize consumer self-determination. Support
professionals should be valued and respected and provided with
incentives to develop quality supports with people. Frequently, the
significance of their role is underestimated. This is reflected by
limited involvement in planning with individuals and their families, low
salaries and limited opportunities for education and training. Support
professionals by virtue of their roles should assume the responsibility
to respond to individual preferences and needs and to enhance positive,
respectful and reciprocal relationships among those they support. In
return, direct support professionals should be valued and empowered to
help individuals actualize their desired futures.

> Opportunities to help individuals develop naturally supportive
> networks and connections with local communities should be encouraged.
> They should strive to reduce their reliance on resources from the
> \"system\", and become more actively involved in reciprocal
> relationships in their neighborhoods. Certainly, these are challenges
> since many support professionals may not be connected to their own
> communities, nor have the time or resources to develop such
> connections themselves. To expect that individuals become successful
> in promoting linkages to their community, and ultimately replacing
> them with non-paid community supports is a great challenge. Support
> professionals, however, should be provided with the resources
> necessary to assist individuals increase their connections, improve
> their life experiences and begin to assume responsibilities for their
> choices.

5.  **Identify Financial Resources Available**-As funding becomes
    increasingly scarce, individuals should be offered opportunities to
    utilize individual budgets. In this way they will be afforded
    increased flexibility, control and creativity in spending their own
    allocations. In some cases, individuals who receive federal waiver
    funds already experience greater flexibility designing supports as
    they choose, since they are more likely to know what their budgeted
    allocation is, and to spend it accordingly. Essentially, this gives
    individuals more opportunity to identify their needs and prioritize
    spending, rather than relying on professionals to do this for them.
    Currently, for many individuals who receive monies through other
    funding streams, individual budgeting is less common. Typically,
    needs are translated into services with input from individuals,
    however, little time is given to the actual cost for supports.
    Unfortunately, this does not give individuals responsibility to
    account for how dollars are spent or for them to learn to budget
    money effectively.

> As stated, by empowering individuals to assume more financial
> responsibility, they will experience increased control and flexibility
> of their resources. Utilizing budgets, based on unique needs
> identified by individuals and their support circles is a key step
> towards self-determination. In addition, individuals will need
> assistance brokering for necessary supports so they can live
> successfully in their own homes. As individuals identify their needs
> they should have access to financial support in the form of start-up
> money or loans which will facilitate increased independence. Examples
> for such expenses might include home accommodations or services for
> job development. As people understand the importance of budgeting,
> they will realize the significance of using non-paid, informal
> supports whenever possible. This will safeguard money for other
> necessary services and more importantly, will enrich peoples lives by
> creating less reliance on a fee-for-service support system.
>
> Furthermore, funding sources should not dictate which residential
> options are available. Individuals should be afforded opportunities to
> decide where to live and with whom. Individuals will choose whether to
> lease from a non-profit housing association, an apartment off the open
> market, or to buy their own house, condominium or apartment, or live
> with family or friends. Given increased opportunities for creative
> spending, people will be more likely to think freely about what makes
> sense to them.
>
> Overall, \"systems\" should consider alternative and creative ways to
> fund and empower individuals to encourage self-determination. In so
> doing, funding sources can save money which can then be re­allocated to
> other individuals in need. Currently, most individuals experience
> limited control since their allocations remain part of entire agency
> budgets. Funds have also been tied up in housing which has limited
> individual choice. Individual budgets should complement the individual
> planning process by infusing creative spending with cost-effective
> measures.
>
> While individuals are supported using budgets, \"systems\" must create
> a reserve pool for emergency situations, to help others on the waiting
> list or those not currently served. Allocations negotiated for
> individuals will not be consistently available. As individual needs
> change and abilities develop, budgets may change, leaving resources
> available for those who need them.

6.  **Develop Education and Training Opportunities**-Individuals with
    the assistance of families, friends and direct support professionals
    need a clear understanding of what constitutes self-determination,
    person­ centered philosophies and how this can translate into
    personal empowerment. Individuals, together with people who care
    about them, must develop the skills to think about what is important
    and ways people can more lead self-directed, autonomous lives.
    Often, individuals lack an understanding of what they want or how to
    reach their goals. Education will help individuals develop a clearer
    sense of self and define their desired life course by building on
    their identified strengths and abilities.

> Self-determination is about choice and power. Individuals are more
> likely to realize personal power when others who care are empowered to
> share their vision and support them to develop their goals.
> Individuals and their circles of support should be provided with the
> tools and resources to build the knowledge and consider various life
> choices on their path towards independence.
>
> Educational programs should be developed for consumers and presented
> in ways that make sense to them. Education is successful when
> individuals learn to see their lives as a process of growth and change
> in which they have the power to determine its direction. Furthermore,
> education is meaningful when it is functional and will be used to
> directly support individuals to improve their lives.
>
> Individuals will be best supported through the training by people who
> know them well, who are invested and who are chosen to participate by
> the participant. Where individuals do not have the skills to
> participate independently, family, friends and support professionals
> should be empowered to advocate on their behalf. Overall, with
> education and training individuals will assume the ability to make
> informed choices and increase their control in the decision-making
> process.
>
> Given these skills, individuals and their circles of support will
> become less reliant on the \"system\" for direction and can look to
> themselves to develop plans of action and to their local communities
> for the support and opportunities to make valued, reciprocal
> contributions. As individuals develop their abilities and exhibit
> their strengths, their life quality will be enhanced.

These basic principles clearly challenge the way we currently support
individuals. Families, advocates, direct support professionals and
friends must share the vision of each person\'s desire to realize their
own futures. Quite distinct from how things have traditionally been
done, key stakeholders must ensure that supports are individualized and
reflect a commitment to providing needed, outcome-based supports defined
by the individual. By definition, success is quality of life defined by
the individual and becomes the standard for evaluation, rather than the
number of \"programs\" completed in a given day, in a particular
residence. Success truly becomes a celebration when individuals feel
their lives make sense and they are supported to move towards their
personal visions.

**References**

Carson, K, Holden, L. Supported Living: It\'s Not Easy But We Make It.
\"External Evaluation of Ohio\'s Supported Living Program\". Columbus,
OH. Ohio Developmental Disabilities Planning Council. 1995

Hext, L., Holden, L. Home-Of-Your-Own: It\'s My Life Facilitators Guide.
Columbus, OH. The Ohio State University Nisonger Center. 1996

Nerny, T, et al. The New Hampshire Self-Determination Project:
Individual Budgets. Keene, NH. Monadnock Developmental Services Inc.
1995

O\'Brien, J. Down Stairs That Are Never Your Own. Lithonia, GA.
Responsive Systems Associates, 1991

Smull, M.W. Moving From Supported Living to a Supported Life. Baltimore,
MD. Community Support Unit. Center of Human Services Development. 1995

**With special thanks to**: Elizabeth Burkart, Melissa Brundage, Thomas
P. Bilodeau, and

Larry Macintosh

TOPIC V: EMPLOYMENT

Papers/Presenters:

RESULTS OF THE EMPLOYMENT WORKGROUP: RECOMMENDATIONS FOR REALIZING
MEANINGFUL AND REAL WORK WITH PERSONALIZED SUPPORT

Julie Silver

Human Services Research Institute

Cambridge, Massachusetts

MINUTE MAN ARC FOR HUMAN SERVICES, INC.- OWN ON YOU OWN PROGRAM

Jim McAleer

Executive Director

Minute Man Arc for Human Services

Concord, New Hampshire

BREAKING OUT OF THE STEREOTYPE: RETHINKING TRADITIONAL JOBS FOR WORKERS
WITH MENTAL RETARDATION

Joy Orzechowski

Job Developer

VinFen Corporation

Cambridge, Massachusetts

EMPLOYMENT

Recommendations for Realizing Meaningful and Real Work with Personalized
Support

By Julie Silver

Human Services Research Institute

Cambridge, Massachusetts

In August 1997, young leaders from around the country gathered in
Washington, D.C. at the President\'s Conunittee on Mental Retardation\'s
Next Generation Leadership Symposium to discuss the achievements and
challenges in their field and to provide recommendations about specific
policies and practices. The results of the workgroup of young leaders
charged with discussing and making recommendations about employment are
reported below. This workgroup was comprised of young leaders (people
under the age of 35) who are self-advocates, direct support
professionals, administrators and researchers from across the nation.
The diversity of their professional and personal experiences coupled
with their commitment to ensuring meaningful and successful employment
of people with mental retardation created a forum for lively debate,
insightful analysis and solid recommendations to the President\'s
Committee on Mental Retardation. The results of the young leaders\'
discussion are organized in three sections: the State of Employment, the
Vision of the Future of Employment and Recommendations to Achieve the
Vision.

In preparation for their discussion, the workgroup heard presentations
from senior presenter, Dr. John Kregel and young leaders, Joy
Orzechowski and James McAleer. Dr. Kregel highlighted the growth of
supported employment attributed to the enactment of the Rehabilitation
Act of 1986 and the Rehabilitation Act Amendments of 1992. In 1986 only
10,000 people participated in supported employment, whereas by Fiscal
Year 1995 over 139,000 people participated in supported employment.
People with mental retardation are the most frequent participants in
supported employment, comprising more than 61% of those participating
(Kregel, 1997).

In addition to the promising reports of the growth of supported
employment across the nation, Dr. Kregel discussed the benefits of
employment experienced by the employee, her co-workers and her
employers. Although on an individual by individual basis, the
development of jobs and support of individuals may be challenging, the
effects are quite positive.

Ms. Orzechowski and Mr. McAleer provided the audience of young leaders
with best practice solutions to the challenges of developing jobs and
supporting people in those jobs. Ms. Orzechowski\'s discussion of the
application and effectiveness of person centered planning in the job
search and job development reiterated the theme of self-determination
and individualization of support and services heard throughout the
symposium. Mr. McAleer discussed the individual and organizational
implications of supporting people in their own businesses. Again, the
necessity of using person centered planning techniques becomes apparent.
Additionally, Mr. McAleer\'s discussed the impact on direct support
staff and the organization when moving from center-based (e.g. sheltered
workshop) to supported employment and business ownership. From all three
presenters, the workgroup participants heard the charge that (1) the
individual\'s interests, desires and abilities must drive the planning
process, (2) creative conceptualization of jobs and work are key to any
individual\'s success in a job, and (3) organizations must divest
themselves of center-based work models in order for people with mental
retardation to have the jobs they want and in which they will succeed.

**State of Employment of People with Mental Retardation**

With those charges in hand, the Employment Workgroup set about outlining
the state of employment for the President\'s Committee on Mental
Retardation. Multiple issues and concerns about employment of people
with mental retardation emerged from these discussions. The issues and
concerns most frequently mentioned and discussed in detail center around
the benefits of work; self-determination, choice and best practices in
employment; and the impact of policy on employment opportunities for
people with mental retardation.

**The benefits of work**: Young leaders point out that the benefits of
work captured by most workers in the US often elude workers with mental
retardation. In their experience, workers with mental retardation seldom
received adequate compensation for their work (sometimes below the
national minimum wage) and efforts to maintain eligibility for
entitlements to support services and medical insurance (Medicaid) limit
the amount they may earn. Thus, workers with mental retardation are left
in positions of economic insecurity despite the fact that they work.
Additionally, standard fringe benefits such as paid leave time (sick and
vacation) are frequently not available to such workers.

Further the young leaders who gathered in Washington point out that the
benefits of work extend far beyond the financial gains for the worker.
They note that employers of supported employees experience the benefit
of a stable workforce and the deferred costs of training and support for
the employee. Additionally, paid work *offers* all workers, regardless
of disability, the opportunity to be included in the day *to* day life
of their communities, increased and enhanced self-esteem resulting from
doing meaningful work, the opportunity to succeed and grow in one\'s
career and the expansion one\'s social network of friends, colleagues
and acquaintances.

Self-determination and the implications for practice: The young leaders
find that assisting people with mental retardation to gain and maintain
meaningful employment *rests squarely on the* utilization of best
practices in career planning, development and support. The individual\'s
desires, abilities and concerns must be the drive the process. They
maintain that the practice of person centered planning, the utilization
of natural supports, generic conununity services, commitment to the
individual\'s dreams and visions and equal and fair treatment in the
workplace are necessary prerequisites to successful employment.

This firm commitment to the self-determination of the person extends
beyond the planning process and must be incorporated in all aspects of
supporting the worker and his career development. The young leaders
maintain that choice about jobs, career development and direction must
be informed and that there must be options from which to choose. (That
is, a choice of \"do you want to work in this job or location?\" is not
informed or meaningful if no alternatives exist.) Additionally, the
young leaders note that while the natural supports, in particular
fancily, can be key to a person\'s success at work, choice making and
direction belong with the worker.

These young leaders point out that best practice in employment support
relies on specialized and generic resources and opportunities available
to the workers with mental retardation and the people who support them.
Although they find that low regional unemployment can impede the job
development process, knowledge of what is available in the community and
good job carving techniques create employment opportunities. A focus on
worker abilities, internships and skillful career exploration activities
are part and parcel of best practice in job placement and development.
Additionally, job and career development requires focused attention
across systems. Although it is primarily adults who participate in
supported employment, career and job development must begin before
people become adults. These young leaders suggest that when skill
building for employment for people under age

16 occurs, these people are better prepared to enter the job market.
Additionally, they find that the availability and use of assistive
technologies (e.g. adaptive devices, communication boards, etc.) can
increase and enhance the job opportunities for people needing such
technologies. Finally, the young leaders note that choices about job
changes and continuing education (such as college and certificate
programs) are frequently overlooked in planning ad supporting workers
(or future workers) with mental retardation. Such choices are, in fact,
typical of many workers and should not be overlooked.

Further, the young leaders find that access to support for employment
can be limited by the practices of the professionals. Their experiences
indicate that, although many people with mental retardation are
participating in supported employment, those with labels of severe and
profound mental retardation have limited opportunities to ,work in
integrated settings. (In fact, just 10% of the people with mental
retardation who participate in supported employment have labels of
severe or profound mental retardation \[Kregel, 1997\]) These young
leaders suggest that the field is moving away from \"creaming\"
(providing support to those most likely to succeed, those who may not
need support as much as others), and that when such movement occurs, it
is the result of individual, family Viand staff attitudes and commitment
to removing barriers to employment and support.

The impact of policy: The young leaders identified several policy issues
which effect the employment opportunities and experiences of people with
mental retardation. In particular, they expressed concern about the
:impact of block grants on funding of support and services to people
with mental retardation. They find flexible \--funding schemes (those
where the consumer and family control and direct the purchase of support
and services) promising for the continuation of supported employment and
the development of better support practices.

The lack of integration of employment initiatives, such as the separate
funding streams of School to Work and adult vocational services, was
seen is ill-conceived and a barrier to effective career development for
people with mental retardation. Additionally, they found that policies
which are seemingly unrelated to the field of mental retardation can
negatively impact the work opportunities of people with mental
retardation. In particular, welfare reform and the focus on work
requirements creates competition for those entry-level jobs which people
with mental retardation typically seek.

Finally, the young leaders noted that bureaucratic red tape and work
disincentives are embedded in some policies. For example, they debated
the utility and accessibility of the Social Security Administration\'s
PASS program, ultimately resolving that the program is complicated
enough that they, as young leaders, are unable to reach a conclusion
about it. Further, they assert that individuals enrolled in Medicaid
and/or receiving services funded through Medicaid and Home and Community
Based Waiver programs experience work disincentives and limitations to
the income they can earn through paid work. The young leaders believe
that some people with mental retardation and their supporters find that
the risk of becoming ineligible for support and services through
Medicaid is too high. Additionally, for those who do work for pay,
income and asset ceilings limit the amount of money they can earn and
can keep some individuals in a perpetual cycle of economic insecurity.

**The Vision of the Future of Employment**

The vision of the future of employment for people with mental
retardation includes simultaneously a vision of work which is integrated
and beneficial regardless of disability and a vision of support which is
individualized and consumer, rather than system, driven. The young
leaders defined the ideal future of employment as one where all workers
(people with mental retardation and others) receive adequate and
commensurate pay and benefits for their labor. They see a world of work
where people are not penalized for their successes, where working does
not make one financially vulnerable. They envision workers having
opportunities to advance in their jobs, opportunities to explore
careers, and access to resources and training and education. The vision
of the future of employment includes real choices among opportunities
and the availability of meaningful work, jobs that do not necessarily
involve food, filth, flowers and filing. The person making those choices
is the worker him/herself.

They envision employment services and support which are no longer
balkanized along age or disability lines. They see support available as
people need it, when and where they need it whether preparing to enter
the workforce or to sustain oneself in a job. The young leaders see an
end to funding and subsidies of work programs that segregate people from
their communities and real workplaces, and they see an increased
financial commitment to supporting people in real jobs. They envision
the universal availability of personal assistance/attendant care,
transportation and transition services.

**Recommendations to Achieve the Vision**

The young leaders recognize that to achieve the vision of employment
they have set forth will require major changes in public perception and
policy effecting people with mental retardation and others. They offer
the following four recommendations as first steps to improving and
enhancing the employment opportunities and experiences of people with
mental retardation:

1\. Influence public opinion

2\. Create incentives to work and eliminate disincentives

3\. Increase flexibility of funding of support and services

4\. Create transportation options

-   **Influence public opinion**-The young leaders in the field of
    mental retardation call for a campaign to educate employers about
    the opportunities and benefits of employing people with mental
    retardation. They recommend expansion of the efforts of the
    President\'s Committee on Employment of Persons with Disabilities
    and continuing the efforts of the National Disabilities Awareness
    Month throughout the year. In addition to showcasing in the media
    the employment success of people with disabilities, concentrated and
    coordinated efforts should be made to educate employers about the
    benefits of employing people with disabilities (including workforce
    stability, workplace integration and tax incentives for employers.)

-   **Create incentives to work and eliminate disincentives**-The young
    leaders recommend revising social security and other regulations
    which create barriers and disincentives to work. Specifically, they
    suggest revisions which would allow workers who receive benefits to
    retain their earnings as they develop their careers and revisions
    which would raise the assets ceiling to allow workers to save money
    for retirement, emergencies, and other contingencies. Additionally,
    they recommend that personal assistance/attendance care be available
    to workers as long as needed, and that such support not be subject
    to income limitations.

-   **Increase flexibility of funding of support and services**-The
    young leaders reject the funding schemes of service delivery which
    have limited choices and control of services for people with mental
    retardation and their families. They believe that individuals and
    their families can best determine which services they need, and
    recommend attaching funds to consumers rather than programs, so that
    market forces of quality and demand can influence service and so
    that consumers may design their own service and support packages.

-   **Create transportation options**-The young leaders recognize that
    the lack of adequate and accessible transportation poses a
    significant barrier to employment for many people. They recommend
    advocacy for enhanced public transportation and the development of
    alternatives to public transportation, where public transportation
    is not available or feasible. Creative funding and financing
    mechanisms (including reimbursement to neighbors, friends and
    private companies) should be considered in the alternative
    transportation solutions.

**References**

Kregel, J. (1997). Supported employment: A Decade of national growth and
development. Paper presented to the Employment Issues Work Group,
President\'s Committee on Mental Retardation, Washington, D.C.

Minute Man Arc For Human Services, Inc.

Own on Your

Own Program

By Jim McAleer

Executive Director

Minute Man Arc for Human Services

Concord, New Hampshire

**Synopsis**

Minute Man Arc for Human Services, Inc. (MMAHS), a 501 (c)(3) non-profit
agency dedicated to providing support to persons with labels of
disability in Massachusetts, has implemented a business ownership
program for persons with significant labels of mental retardation. The
MMAHS Own On Your Own Program, recognizing how such individuals are
often underemployed, identified eight people who were being served in
sheltered workshop settings and developed business plans tailored to
their individual desires, talents and resources. The Own On Your Own
Program employed a comprehensive planning approach that included:
accessing personal support networks and the resources found therein;
targeting individual desires, skills and strengths; and forming a
community based employment advisory board to support the individuals as
they formed businesses over an extended period of time.

The goal of the Own On Your Own Program was to successfully plan and
implement individual business initiatives over a period of two years
with business plans manifesting over five years. Through this process,
individual consumers experience real employment opportunity through the
development of their skills, mentored by MMAHS staff, family and
community supports.

These business initiatives were supported in the first stages through a
combination of funding resources including: MMAHS funds generated by
contract with the state Department of Mental Retardation (DMR); funds
produced by the businesses themselves; funds from federal programs such
as the Social Security PASS and IRWE Programs; grant funds; and in-kind
contributions of services and supplies generated by the employment
advisory board. The program is continuing to serve the needs and desires
of additional consumers through the same primary funding sources. First
year grant funds are being replaced through community business support
and an increase in MMAHS program offset in the original target group.

Each individual business plan includes short and long term goals wherein
funding support is decreased incrementally. The plans allow individuals
or a small group of individuals with mental retardation to successfully
own and operate their own, self-sustaining businesses, sometimes in
concert with non-disabled business partners.

**Purpose/Problem Statement**

Minute Man Arc for Human Services, Inc. (MMAHS) implements the service
principles of rights, dignity and individual control in every aspect of
service design and delivery. It is agency policy and practice to treat
all individuals receiving services from the agency with the utmost
respect and dignity. MMAHS staff value the opinions and choices of
individuals with disabilities as the most important component of any
program. Every aspect of agency service delivery is offered with
consumer choice in staffing, location and all other areas as the
baseline. MIVIAHS promotes the development and growth of relationships
and natural support networks within the context of community living.
Families are encouraged in their efforts to promote the inclusion of
family members with a disability in educational and recreational
activities as well as in other aspects of community life.

MMAHS provides vocational services to 64 individuals with labels of
mental retardation As services have shifted from facility based
programming to community based programming, MMAHS has developed a
significant number of supported and competitive employment opportunities
in eight communities in Massachusetts. Nine individuals have been
encouraged to continue their education through the ground breaking
Personal Enrichment Program (PEP). Forty-seven individuals have been
successful in finding and maintaining competitive or supported
employment opportunities through the MMAHS Business Resources Program
(MMBR), with an additional eight people in the process of job searching.

MMAHS is committed to providing employment opportunities without regard
to perceived level of disability and without prejudice in regard to
stated levels of handicapping conditions. The mission of MMAHS is to
impact positively on the lives of persons with mental retardation,
thereby supporting the concept that each consumer has an equal right to
employment and employment services, regardless of the perceived extent,
nature or significance of their disability.

According to statistics available as far back as 1985, unemployment
figures for persons with severe disabilities were calculated as high as
88%.3 This clearly defines a trend of unemployment for individuals with
\"severe\" mental retardation. It has become increasingly difficult to
equalize opportunities for those individuals with significant labels of
disability. Therefore, the individuals without immediate access to work
opportunities beyond sheltered work due to the level of their disability
have been the target population of the Own On Your Own Program. Of all
persons served in supported employment, it has been shown that only 1.2%
are classified with the now seldom used classification of profoundly
mentally retarded. As Kregel noted in his research of 1989, increased
severity of handicap can necessitate development of tailored support
services.

Significant labels of mental retardation often preclude consideration of
an individual for available jobs. The process of \"cream skimming,\" or
selecting those individuals who have the most immediately identifiable
skill sets for employment, has relegated persons with less obvious
talents to sheltered work and day habitation, regardless of their desire
to find employment. According to the President\'s Committee on
Employment of People with Disabilities released in 1997, 800,000 more
people with \"severe disabilities\" between the ages of 21 and 64 were
employed in 1994 than were employed in 1991.6 While this represents a
positive shift, it may be inflated by an increase in the population
size.

The Committee\'s report goes on to note that 73.9% of people with
\"severe\" disabilities were not employed as of 1994. 26.1 % of the 14.2
million people who carry a label of significant disability as defined by
this report, or 3.71 million people, are considered to be employed. When
juxtaposed against the 82% of the general population considered to be
gainfully employed, the obvious need for targeted services is shown.\'

Compounding the problem, local government funds are not available in
Massachusetts for vocational services to persons with labels of mental
retardation. State and Federal funds are increasingly sparse. Existing
contract money has been level funded in respect to operations for eight
years, forcing more consumers to be served with fewer resources. Any
significant innovation funding available in recent years has come from
the private sector, as the state and federal governments struggle to
provide minimal services to all who are in need.

The State of Massachusetts has defined a residential and vocational
services waiting list for persons with mental retardation of 4,000
people! As noted, there has not been a rate increase for over eight
years to most contracts, thereby reducing the funds available to
existing consumers as a result of inflation. These facts underscore the
ongoing and increasing shortfall of state funds. Federal funds, as
represented through Social Security Programs, also fail to keep pace
with inflation and other cost of living indicators. The obvious decrease
in value of dollars provided, coupled with the continual rise in the
unserved or underserved populations, evidences the need for innovative
and self-sustaining services which allow the consumer some measure of
self-sustenance.

**MMAHS Response**

The purpose of the Own On Your Own Program has been to provide
individuals with significant labels of disability with realistic
employment opportunities through the development of ownership in
businesses tailored specifically to the individuals\' skill sets and
desires. The initial process of identifying and developing support
services involved a group of eight MMAHS consumers, three targeted MMAHS
staff members, a community based advisory committee and a variety of
community supports.

The Own On Your Own Program selected eight consumers and three staff
members to enter the program. Staff members worked with each consumer to
identify resources within the consumer\'s circle of support. For
example, a consumer may have a neighbor able to provide transportation,
a brother interested in providing support or a friend with contacts in
business or banking. All resources, both tangible and motivational, were
identified. Each consumer was asked to participate in defining skills
and interests in an effort to tailor new business ventures to both
ability and desired work.

Wehman, Kregel, & Seyfarth, (1985) Employment Outlook for Adults with
Mental Retardation, Rehabilitation Counseling Journal. 29 (2), 90-98.

Shefer, (1989) National Supported Employment Initiative: A Preliminary
Analysis, American Journal of Mental Retardation, 1990, Vol. 95 No 3,
(316 - 332).

Kregel, Wehman, Revell, & Hill, (1990), Supported Employment in
Virginia: 1980 - 1988, Supported Employment for persons with severe
disabilities: From Research to Practice, (Vol. 3, pp. 1-30).

*\'Ability To Bridge The Future*, President\'s Committee on Employment
of People with Disabilities, Released July, 1997. Op Cit., July 1997.

*People First: What Massachusetts Does for People with Disabilities*,
Massachusetts Developmental Disabilities Council, Massachusetts Human
Services Coalition Publication, February, 1997.

After supports available and supports needed were charted, the potential
for new businesses was analyzed. Originally intended to be sole
businesses, it was clear in the early stages that a greater chance for
success was found in forming partnerships with several consumers who
clearly identified similar interests. Consumers were presented with many
potential businesses, including options currently found in day service
enclaves, such as cleaning crews, packaging crews, etc. New business
ideas, including printing and laundry concerns, were also presented.
Consumers and staff partners chose the business concept that most
appealed to them, and an initial sketch was drawn of that new business.

MMAHS successfully identified a large group of community members,
businesses and groups that agreed to assist with this project. Each
member of the community advisory committee agreed to assist in the
development of individual businesses for one or more consumers as
identified in the initial stage of the program plan. The advisory
committee meets quarterly as a group to evaluate business plans, to make
recommendations and to offer support. Individual members agreed to be
available as needed to provide direct services such as loan assistance,
in-kind donations, management consulting and other ancillary business
assistance. Members have served as business mentors for new business
owners. The advisory committee analyzed each potential business for
viability. Resources from the committee were added to the resource lists
compiled from staff and consumer support circles, and complete business
plans were formulated.

Potential business areas were presented to the community advisory
committee for review and recommendation. Following the committee\'s
input, a business plan was then outlined for the consumer or for a group
of consumers. The business plan incorporated the following elements: the
consumer\'s support networks, the financial resources needed, a fade-out
plan for any external subsidy, identification of subsidy and alternative
funding plans such as MMAHS loan financing, community financing and
individual initiative grants.

The overall project outcomes were the creation of three new businesses
to be owned and operated by people with mental retardation and the
creation of an ongoing program to continue to support business
development. The three new businesses included the following groups:
three individuals involved in a marketplace, four individuals involved
in a stables maintenance business and four individuals in a cleaning
business. One non-disabled business partner is involved in each of the
three businesses and is counted in the aforementioned numbers.

**Plan Of Work**

The MMAHS Own On Your Own Program began in month one with the
identification of one staff member within day services and the hire of
one additional staff member, both dedicated to providing support to
persons with labels of significant disability. The Project Director,
with the assistance of the Project Manager and staff, called the initial
meeting of the advisory committee to begin the initial evaluations of
consumers needed to develop targeted business plans. The target
population was defined as those individuals with labels of significant
disability currently served by the state Department of Mental
Retardation in sheltered work, day habilitation or respite services.
Project staff worked through months two and three on identifying what
supports existed in each consumer\'s sphere that could assist in the
formation of a business. Family supports, established relationships in
the community and any other existing supports were studied and charted.
Project staff dedicated 20 hours per individual to identify desires,
strengths, and skill sets prior to the selection of a possible business
plan.

Months four through seven included the establishment and evaluation of
business plans for each consumer that included timelines for
implementation, evaluation by the advisory committee, securing of
financing, establishment of PASS and IRWE plans as needed and the
acquisition of appropriate community services as identified in the
plans.

Months six through nine included the implementation of the business
plans developed and the identification of at least one new consumer to
enter the program for each consumer established in a business. New
consumers entered the process as outlined and were recruited from
outside the existing population through established DMR contacts.

Months nine through twelve included the implementation of business plans
for the initial target consumers, continuation of business plans for
consumers previously implemented, and the identification of new
individuals to begin the project process.

**Finance**

As previously stated, the Own On Your Own Program and its initial
business initiatives are supported through a variety of funding
resources. MMAHS provides funds generated by contracts with the state
Department of Mental Retardation (DMR). Additional funding comes through
federal programs such as the Social Security PASS and IRWE Programs.
Grant funds provided by foundations and in-kind contributions of
services also supplement the program\'s funding. In addition, the
businesses contribute from their generated revenues.

The business plans incorporate into their goals the incremental decrease
of external funding over the first three years of the business. In this
way, the businesses become self-sufficient entities, owned by the
consumers and the non-disabled business partners in the third year of
operation.

Careful consideration is to be given to the impact of the business
implementation and ownership on consumer finance. As consumers gain more
independence financially due to increased salary potential and as the
ability to be gainfully employed increases, the consumers\' eligibility
for governmental benefits may be jeopardized. These factors may affect
eligibility for Social Security Disability Income (SSDI), Supplemental
Security Income (SSI), Medicare, Medicaid, food stamps, Section 8
housing subsidies, low interest housing loans and fuel assistance.

Further issues are raised regarding the consumers\' financial status by
the shared value of the business itself. Each business plan incorporates
an individual analysis of consumer finances, the impact of income and
business value, and contingency plans for future problems should
benefits be compromised.

Breaking Out of the Stereotype:

Rethinking Traditional Jobs for

Workers with Mental Retardation

By Joy Orzechowski

Job Developer

VinFen Corporation

Cambridge, Massachusetts

Let\'s face it, workers with mental retardation are often classified
into stereo typical jobs. When people think of supported employment,
they most often think of baggers at the supermarket or table cleaners at
McDonalds. Individuals with mental retardation are often boxed into
entry level jobs with little room for advancement. Commonly known as the
five Fs, these jobs can be broken down into the following categories:
Food (cafeteria assistant, dishwasher etc.) Filth (cleaning), Folding
(laundry, retail stocker) Filling and Fetching. While not to minimize
the value of these jobs, we as human service providers need to look
beyond the traditional job roles that people with mental retardation
usually fill and come up with a more person centered approached to job
development that addresses the skills, interests, and dreams of the
individual.

We need to reassess the role of vocational programs and create better
opportunities for workers with mental retardation. Although much
progress has been made in the field of supported employment, human
service providers need to take it to the next level to transition people
into the economic mainstream. By looking at jobs that encompass a
greater variety than the five Fs, we can expand the possibility of
finding jobs that lead to careers, and the potential for advancement.

**A Brief History of Supported Employment**

In the early 1980\'s a paradigm shift occurred which changed the way
human service providers served consumers with mental retardation.
Traditionally, the only work opportunities they were provided were
sheltered workshops or enclaves. While these programs did provide
valuable training opportunities, they could not replicate an actual job.
Individuals with mental retardation who were served by the day program
model were not integrated into the economic mainstream. Often work shop
jobs provided minimal, if any pay. They also segregated consumers from
the general population. The workshop jobs offered no opportunity for
advancement and growth.

Supported employment is defined as \"real jobs for real pay.\" Workers
are supported on site by a job coach until they have transitioned into
the workplace. Since the 1992 amendment to the Rehabilitation Act,
approximately \$2.3 billion in federal funds have been targeted to
employment services for individuals with disabilities. (National Council
on Disability, 1996) The Amendment also requires state vocational
rehabilitation agencies to provide the individual with a choice of
services and providers; to focus on careers, not just entry level jobs;
and to presume that most individuals with disabilities can and should
work.

Many work incentive programs have also been developed by the Social
Security Administration to encourage individuals with disabilities to
enter or reenter the workforce. Programs such as the PASS (Plan for
Achieving Self Support), the IRWE (Impairment Related Work Expense) and
the BWE (Blind Work Expense) have been very useful in allowing
individuals with mental retardation to receive and pay for the supports
they need to become successful in the workplace. (See charts A & B at
the end of this paper)

While all of these programs have had an impact on the lives of people
with disabilities and allowing them to achieve their employment goals,
much work still needs to be done. Although unemployment rates are
dropping nationally, individuals with disabilities continue to have the
highest unemployment rate. According to the National Council on
Disability, in 1995 only 28% of the 16.8 million working age Americans
with disabilities were employed.

• 86% of consumers with mental retardation/developmental disabilities
are being served in segregated day or employment programs

• Three times as many people with developmental disabilities are being
placed into sheltered employment settings as are entering into supported
employment.

• 84% of rehabilitation facilities currently providing supported
employment or who are planning to provide supported employment will
retain segregated work sites.

• 80% of state funding dollars are used to fund segregated day or
employment programs (Keirnan, McGaughey, Lynch, Morganstern & Schalock,
1991)

Vocational rehabilitation agencies have been successful in getting
people with disabilities jobs. They currently serve about one million
individuals and successfully place about 200,000 per year in employment.
(National Council on Disability, 1996) However, the types of jobs that
people with mental retardation are consistently placed in often remain
within the five F\'s. While national statistics are not readily
available, a recent demonstration grant tracked 44 supported employment
placements in Massachusetts over a three year period. Although this is
only a cross section, it does give an example of the typical jobs that
individuals with mental retardation hold. All of the jobs were part time
and provided few if any benefits.

  ------------- ----------- ------------------------------- -------------
  Industry type Percent     Type of Employment              Percent

  Restaurant    30%         Cleaning/Maintenance            34%

  Retail Store  30%         Food Service                    14%

  Supermarket   14%         Assembly Worker                 14%

  Factory       11%         Inventory/Stock Clerk           11%

  Other         13%         Floral Assistant                7%

                            Delivery Person                 7%

                            Bagger                          6%
  ------------- ----------- ------------------------------- -------------

**Benefit type** Percent of Jobs providing Benefit

Medical Benefits 0%

Paid Sick and Vacation 0%

Free Products or Services 9%

Discounts on Products or Services 39%

To combat the problem of boxing people into employment types, vocational
rehabilitation professionals need to be more creative in their approach.
Vocational assessments need to become more positive. Traditionally,
assessments had been used to weed out people rather than weed them in.
Focus was on the disability. More positive assessment tools focus on the
skills, interests and talents of the individual regardless of the
disability. Focusing more on what the individual can do rather than what
they can\'t is the first step. Brainstorming for employment options is
the next.

**Brainstorming**

An effective way to brainstorm about possible employment for the
individual is to hold a person centered planning meeting. These meetings
are completely consumer driven. Focus is on the positive and what the
person\'s strengths, skills, and abilities are. A team is created that
consists of people who know the individual well and can provide positive
insights as to their talents. The team might consist of staff, such as a
vocational rehabilitation counselor, teachers, family members, friends,
or past employers; anyone who can be a resource. The facilitator then
directs the team to explore all areas of the persons life to see how
those skills and interests might translate into a job.

One format based on the self-help book \"What Color is Your Parachute? A
Practical Manual for Job-Hunters and Career Changers.\" was implemented
by the Massachusetts Rehabilitation Commission via the Massachusetts
Supported Employment Statewide Systems Change Grant. The person centered
planning meetings proved very useful as a way to get the individual,
their family and support group to look at them in a new light. Hidden
talents were discovered that were then transferred into job skills.
Because all members of the person centered planning team were committed
to finding and supporting the individual on a job, the synergy that was
created was enormous.

By compiling a group of people that could be used as a resource, the
individual increased their networking circle and increased the
possibility of finding a job. The following is a breakdown of the person
centered planning process, taken from the Supported Employment Systems
Change Project Massachusetts Rehabilitation Commission, Office of
Employment Services & the Institute for Community Inclusion.

**Initial Career Planning Session Focus-Overall Components**

-   Conducted as a friendly, informal and positive brainstorming
    session: everybody\'s contributions but the focal person has the
    power.

-   Held in a comfortable location, for example the persons home

-   Include person\'s significant others, e.g. family, friends and
    colleagues.

-   Modeled after, marketed as and follows a \"non-disability, non human
    service\" approach to avoid creating additional \"labels\"-goes
    beyond existing traditional service models.

-   Written on flipcharts so everyone can see input -transferred after
    meeting so everyone can have a copy.

**Format**

1\. **Leisure Learning Labor**-This section lists past, present and
future strengths, experiences and or interests a person may have had
under each of these headings.

2\. **People Things Information**-This section lists transferable
skills, preferences, interests and assets a person may have and/or may
want to cultivate in the future under each of these headings.

3\. **Working Conditions**-This section lists both favorable and
unfavorable working conditions, e.g., schedule, geographic location,
environmental factors, person and/or technology supports, transportation
needs, health coverage and work culture.

4\. **Work Rewards**-This section lists concrete needs, e.g. salary and
insurance but also other motivating factors that make a job positive,
e.g. social contact, challenge, respect, creativity.

5\. **Outcomes/Potential Jobs**-Following a review of all the
information gathered in sections 1- 4, what are patterns of strength,
skills, interests, work rewards and working conditions? What does an
ideal career, job look like for this person? What kind of supports might
be necessary?

6\. **People Contacts/Who Do We Know?-**Following the identification of
potential jobs, the group brainstorms on contacts each member may have
in these areas to contact regarding potential employment in these areas.

7\. **Strategies**-The group describes planning tactics that might lead
to jobs identified in the Outcomes such as job visits, talking to
someone doing the job, researching potential employers needs, taking a
course, internships, developing a resume or volunteering. Also
identified in this section are plans for job supports, assistive
technology, assistance in one\'s home that is needed for work, and
insurance needs.

8\. **Action Plan**-This last step specifies tactics identified in
Strategies and the group develops specific objectives, responsible
person(s), and time lines. Each participant usually shares
responsibility in helping the person achieve his/her work goals.
Usually, the group schedules a follow-up meeting at this time to review
progress toward Action Plans.

Following the meeting, a designated person writes the notes from the
planning session and then disseminates them to each participant. Once
the skills and interests have been assessed, and a career plan has been
developed, the actual job search needs to take place. Based on the
career plan, the job search should also be a creative process. If for
example, the individual is interested in working with children, a number
of possible jobs could be explored. Depending on the person\'s skill
level, a job could be created at a day care center, a school, or an
activity center. The person might also want to explore working at a
place where children are likely to be such as a museum, a toy store, the
children\'s section of the public library, a zoo or pediatricians
office. There are any number of possibilities as long as the individual
and vocational rehabilitation staff, allow themselves to think outside
the parameters of a traditional job. Ideas should also not be written
off before exploring them. Do not eliminate an individual\'s career goal
as unrealistic, instead refine it so it may become obtainable. One
consumer in particular stated that she wanted to be a doctor. Rather
than explaining that this was an unrealistic goal, the job developer
asked her to explore the reasons she wanted to be a doctor. The woman
explained that she enjoyed helping people and wanted to work in a
medical facility. After further exploration, a job was carved for her in
a nursing home. She works in the evenings assisting residents with their
dinner. This allows her to help others and to work in a medical
facility. If her original goal had not been further developed, she may
never have received the opportunity to work in place where her skills
were so well suited.

**Where The Jobs Are**

According to the Department of Labor:

> 1% of the population has found their job through private employment
> agencies 2% through public employment agencies
>
> 3% through the help wanted advertisements in the newspaper
>
> 6% through school placements
>
> 24% through having a direct contact with the employer
>
> 48% through friends and relatives

13 % through friends and relatives having direct contact through
employers.

The Internet is a very good way to search for jobs. More and more
companies are posting their openings on the Web. Nationally read
newspapers such as the New York Times and the Boston Globe post their
help wanted section, and national job banks are continuously creating
more diverse sites. The search can be done by job type, location,
industry type or any number of variables. To find job postings on the
Internet try the following sites.

Job Posting Site Address

Americas Talent Bank: Job Seekers Section
<http://www.atb.org/atb/text/consorts.htm>

Americas Job Bank http://www.ajb.dni.us/

Career Magazine
[http:/](http://www.ajb.dni.us/http:/)/[www.careermag.com/careennag/
http:/](http://www.careermag.com/careennag/  http:/)

Career path- to search in national newspapers /
[www.careerpath.com/info.html](http://www.careerpath.com/info.html)

Catapult <http://www.jobweb.org/catapult/catapult.htm>

Job Bank USA [http://www](http://www/)
[jobbankusa.com/search.html](http://jobbankusa.com/search.html)

Job Hunt [http://www](http://www/).job-hunt.org/

The World Wide Web Employment Office
http:[www.harbomet.com/biz/office/annex.html](http://www.harbomet.com/biz/office/annex.html)

**Job Carving**

Job carving is an excellent way to get individuals with mental
retardation into the workforce. With the advent of \"down sizing\"
companies are more willing to look at alternative staffing to meet
production needs. Job carving breaks down the components of a job and
assesses which pieces can effectively be done by the applicant.

Often times job carving benefits both the employer and other employees
in the worksite because it breaks the job down into more effective
steps. An effective approach to job carving is to sit down with the
hiring manager and discuss what there employment needs are. Find out if
there are any needs that currently aren\'t being met. The following is a
job carving questionnaire that has successfully been used to get
managers to think of workers with disabilities as an asset, rather than
a burden.

**Job Carving Questionnaire**

-   Does your department have any entry level tasks which many employees
    do or which direct employees from their more critical job?

-   Are there tasks which you would like to see done more efficiently or
    in a more timely fashion?

-   Are there busy times of the day or week when you feel you could use
    some extra help?

-   Are you paying higher wages to technical or highly skilled employees
    to perform entry level tasks?

-   Are there any tasks which aren\'t being done on a regular basis
    because there isn\'t enough work to justify hiring a full time
    employee?

-   Are there jobs that you fill with work study students, high school
    students or temporary workers?

-   Would you like someone to fill those needs on a more stable basis?

**Examples Of Job Carving**

A secretary making \$15 an hour found that 30% of her time was spent
faxing and photocopying. By having someone come in 2 hours a day to take
care of those responsibilities, she became much more productive and her
time was used more effectively. A chef spent much of his time measuring
out the serving portions before preparing the meal. Several of the items
on the menu were very popular and sold consistently. By creating a
position called a food portioner, the kitchen ran much smoother. The
chef could use his time to create mere extravagant meals while the
portioner weighed out each amount. A restaurant manager found that much
of her wait staffs time was spent folding napkins. This was a dreaded
task because it took away from the time they were working toward tips.
The manager hired a worker with a disability to come in when the
restaurant was slow to pre fold the napkins. This allowed the wait staff
to spend more time with the customers, providing better service.

**What Can Vocational Rehabilitation Providers Do?**

One of the most difficult obstacles that job developers have to overcome
is the individual with mental retardation\'s lack of self esteem and
awareness of their talents. It is as though they have been programmed to
believe that they can only do a certain type of job. When several people
with mental retardation were asked what their ideal job would be, the
number one answer was \"To work in McDonald\'s\". Not only do we as
human service professionals need to think outside the boundaries of
traditional placements, but we also need to encourage the individuals to
see themselves in a different light. The biggest problem is lack of
exposure. People with mental retardation aren\'t exposed to a myriad of
employment options the way the mainstream population is. A very simple
way to get an individual with mental retardation to think about
different employment options is to go through the yellow pages. Open it
up to any section and read the names of the business. Ask the person to
imagine what the company does and what types of jobs they may have. If
the person doesn\'t know anything about the company, call them and ask
then what they do. Many companies are willing to talk briefly with an
individual if you explain to them that this is only an information
gathering phone call.

Another way of exposing people to different job settings is to have them
walk around in their own neighborhood and see how many different types
of employment settings they can name. Make sure not to overlook the
obvious such as the police and fire stations or the local hospital.
There are many different types of job descriptions that an individual
with mental retardation may not know about such as the dispatcher or
support staff:

An informational interview is also helpful to introduce people with
mental retardation into different types of employment situations. The
applicant can meet with a human resources representative or hiring
manager to discuss the job and get an idea about the skills and job
descriptions. The informational interview allows the applicant to
explore different work opportunities in a low pressure environment.
Because the person isn\'t actually applying for a job, the interviewer
may be more inclined to share information and allow the person to find
out what a day in the company would be like. This also gives the person
the opportunity to practice interviewing so they become more and more
comfortable with it.

An even more effective way of exposing people with mental retardation to
a variety of work opportunities is the situational assessment. A
situational assessment allows the applicant to actually go to the job
site and try the job out for a short period of time such as an hour or a
day. This is positive for both the employer and the applicant. The
applicant gets the opportunity to try out the job and see if it is
something they might be interested in doing. The employer benefits by
actually seeing the employee perform the task. Many people with
mental\'retardation have a difficult time during the interview session,
but they are more than capable of handling the job. If the hiring
manager sees the applicant perform the job, they may base their hiring
decision on the person\'s work skills rather than their interview
answers. It allows the employer to try the applicant \"risk free\". A
situational assessment is also helpful for vocational rehabilitation
professionals because it allows them the opportunity to assess the
applicant\'s skills in a real job setting. A workshop can\'t adequately
duplicate a work situation. But a situational assessment may show an
applicant\'s hidden talents. To break the stereotype of the five F\'s,
vocational rehabilitation providers must first acknowledge that
individuals with mental retardation can do a myriad of different things.
If job development is driven by the skills and interests of the
consumer, a job can be carved out in almost any industry. Vocational
rehabilitation providers can also prepare the consumers for the
workplace by exposing them to more opportunities. Rather than providing
contract work at a sheltered workshop, day programs should focus more on
transferable skills such as interview techniques, job search strategies
and appropriate work attitudes.

**Three Examples of Non-Traditional Jobs**

Joan H. is a thirty six year old woman with mental retardation. Joan had
been working in a supported workshop as a cafeteria aide. She enjoys
interaction with people and especially enjoyed new people coming in to
the cafe. Although she liked her job, she was interested in working
outside the workshop and getting a job in the community. Joan applied
for a job as a line server in a local high school cafeteria, but she
found the fast pace difficult to keep up with. Although Joan had a job
coach to support her at the worksite, she still could not maintain the
steady pace. After a few weeks, Joan was terminated from her job. An
assessment was made to determine all of Joan\'s strengths, her skills
and her interests. A job where there is a lot of customer interaction
was important to her, as social interaction is one of the main reasons
she enjoyed her job in the workshop cafeteria. She has a very outgoing
personality and can be very persuasive. It was decided that Joan should
get a job where there is a much customer interaction, but where she
could also set her own pace. Several options were explored until the
perfect job was found. Joan currently works as a product demonstrator
for C.A. Courtesy Demo. Joan\'s job involves greeting the public and
demonstrating new products to them. As new food products go on the
market or go on sale for the week, Joan hands out free samples and
coupons. Joan\'s outgoing personality is perfectly suited for this job
because she gets to speak to people and convince them to try the
product.

Joan gives out free samples of new products such as Nabisco Crisps. She
also tracks how well they did in the store that day by counting how many
items were on the shelf before she gave out the samples, then counts how
many were on the shelf at the end of the day. This allows Nabisco to
know how successful the product demo was. Joan also takes comments from
people and she asks them how they like the product. Joan loves her job.
She has a flexible schedule and can work at her own pace. This job was
found through an ad in the Cambridge TAB, a small local newspaper.
Because Joan was so perfectly suited for this job, no carving was
necessary. Joan is supported by a job coach who helps her with
transportation to and from the worksite. As each demonstration is
different depending on the product, Joan\'s job coach also assists her
by explaining the minor details and going over the paperwork to ensure
that it is accurate.

Jane G. is a 54 year old woman with moderate mental retardation. Jane
had been institutionalized for much of her life, and had only one work
experience at a flower shop. Jane had expressed an interest in working
with plants, but she didn\'t enjoy the close interaction with the
customers. A person centered planning meeting was held to brainstorm
about an ideal work situation. During the person centered planning
meeting, it was discovered that Jane had a love of crafts. While she was
in the institution, her favorite activity was sewing. Several craft
stores were contacted to expose Jane to a variety of job types but all
of the jobs involved heavy customer contact. Finally a craft store
agreed to hire Jane to do the detail work on items that they sold. Her
job only entails the actual making of the craft, it does not involve
selling to the customer. Jane is now able to do a job she loves and she
is provides a valuable service to the craft shop.

Bob A. is a 28 year old man with mild mental retardation. Aside from his
mental retardation, Bob has a secondary disability of being wheelchair
bound. A person centered planning meeting was held to discover what
Bob\'s interest were. It was determined that Bob particularly enjoyed
talking on the phone and helping people. Bob also had light typing
skills and was able to operate a computer. Different career
opportunities were explored and several local businesses in Bob\'s area
were contacted. The local cable company was willing to meet with Bob to
see if he could work in their customer service department. The job
entailed setting up new appointments, confirming the appointments and
handling customer complaints. After a situational assessment, it was
discovered that Bob had difficulty handling the customer complaints.
However, a large part of the job was the actual confirmation of
appointments. Because it was difficult to reach people at home, this was
the most time consuming aspect of the job. The cable company agreed to
restructure the position so Bob would only do the confirmation of
appointments. Incoming calls for appointment setting and customer
complaints were rerouted to other customer service representatives. The
company carved a job that utilized Bob\'s strengths and at the same time
made their customer service department run more efficiently.

**Summary**

People with mental retardation can and should work. They should not be
boxed in to stereotypical jobs that do not make use of their particular
talents. By expanding the realm of possibilities to include jobs that
are non­traditional, workers with mental retardation can increase their
possibility for a career and advancement. By looking at a variety of job
settings and industries, vocational rehabilitation professionals can
increase the number of people with mental retardation who are employed.

**Recommendations For PCMR**

1\. Individuals with mental retardation should be empowered and the
primary director of their job search. They should be provided with a
variety of services and employment providers so they may make an
informed decision about the best service for them.

2\. Vocational rehabilitation should be made more available to eliminate
the wait list and create more opportunities for individuals with mental
retardation to enter the workforce.

3\. School to work programs should implement several internship
opportunities to expose students to a variety of work situations.

4\. Vocational rehabilitation agencies should develop a variety of
employment options for their consumers.

5\. The Department of Labor should be made aware that adults with mental
retardation are a viable part of the workforce. Statistics should be
kept on individuals with disabilities to track their unemployment rate.
Labor market trends for workers with disabilities should also be tracked
to determine if people moving out of entry level or part-time jobs into
viable careers that can sustain them financially.

6\. More initiatives need to be developed to support people with mental
retardation in real jobs for real money. The focus should continue to
change from sheltered workshops to supported employment.

7\. Greater flexibility should be built in to the support system of SSI
& SSDI so that people with mental retardation can continue to receive
the supports they need while they are transitioning into the workforce.

8\. Companies should have more access to information on assistive
technology. Human resource managers should become more aware of
assistive technology and how it can help a worker with mental
retardation. Many large corporations have realized the benefit of hiring
a worker with a disability. The Marriott and McDonalds have both been
very proactive in hiring workers with mental retardation and were
accommodating to supported employment, but other industries such as
computer and high tech need to follow suit. If employers become better
educated about the benefits of hiring a worker with a disability, more
jobs can be created for them in these fields.

9\. The expectation should be that people with mental retardation will
be employed and integrated into the economic mainstream.

Chart A

Diagnosis of SSI work incentive recipients

June 1997

![](media/image3.png){width="0.8472222222222222in"
height="0.5694444444444444in"}

![](media/image4.png){width="0.7222222222222222in"
height="0.5694444444444444in"}

Retardation Pschiatric Nervous System Other Physical

Chart B

Diagnosis of SSI Disabled Workers

June 1997

![](media/image6.png){width="1.75in" height="1.5694444444444444in"}

Retardation Other Physical Encodrine

Musculosketletal Nervous System Psychiatric

**References**

Louis Harris and Associates and National Organization on Disability.
*(1991) Public Attitudes Toward People with Disabilities.* New York, NY:
International Center for the Disabled (ICD

Kiernan, W.E., McGaughey, M.J., Lynch, S., Morganstern, D., & Schalock,
*R. (1991). National Survey of Day and Employment Programs for Persons
with Developmental Disabilities.* Boston: Training and Research
Institute for People with Disabilities, Childrens Hospital

*The Natioud Council on Disability. 1996. Policy Setting an Agenda for
the Future Achieving Independence: The Challenge for the 21st Century, A
Decade* of Progress in Disability,WashingtouD.C.^-^. Author.

Pickett, C., (1997) Quarterly Report on SSI Disabled Workers and Work
Incentive Provisions. Baltimore, MD: Social Security Administration,
Office of Research, Evaluation and Statistics, Division of SSI
Statistics and Analysis.

Sotnick, P. (1997) *The Massachusetts Supported Employment Systems
Change Project.* Boston:

Institute for Community Inclusion and The Massachusetts Rehabilitation
Commission Office of Employment Services.

TOPIC VI:

EDUCATION ISSUES

Papers/Presenters

EDUCATION WORK GROUP

Laurel Menthey-Silvio

Gaithersburg, MD

EARLY INTERVENTION AND PARENTING SUPPORT IN PUBLIC SCHOOL INCLUSIVE
PROGRAMS

Heidi L. Miller, Ph.D.

Watertown , MA

EDUCATION WORKGROUP

By Laurel Manthey-Silvio

Gaithersburg, MD

Background

Education is the foundation of any functional society. It is this
foundation that provides individuals with the skills, knowledge, and
ability to become contributing members of society. Individuals with
mental retardation are legally guaranteed the same education and
outcomes. Inclusion in the educational system consists of equitable
access to learning and social opportunities and the expected outcome of
becoming a functioning member of society.

At the 1997 Next Generation Leadership Symposium, the Education Work
Group examined the state of education in our society as it prepares
individuals with mental retardation for their role as contributing
members of society. The Work Group consisted of self-advocates, parents,
educators, administrators, and related service providers. This group of
individuals are the shareholders in the education of individuals with
mental retardation. This group, these shareholders all need to be
involved in the educational process providing direction, support, and
ownership for the educational system. Through a combined perspective,
the Work Group assessed the state of education for individuals with
mental retardation, discussed changes in attitude and policy that would
benefit individuals with mental retardation, and developed
recommendations to implement positive and necessary changes in the
educational system.

The Work Group began with an introduction from the senior presenter,
Michael Remus, the Director of Special Education for the state of
Kansas, who challenged us to contemplate philosophical questions. How do
we empower students with mental retardation and their families in their
educational process? What is inclusive education? Are students
succeeding? Why do we teach what we do in the way we do? Are the classes
and subjects related? Do we believe that all students have value and
worth? Does the present educational system lead to an individual who has
the skills needed to function in society? He challenged us to develop a
vision statement on which to base our actions as future leaders of the
educational system.

**State of Education for Students with Mental Retardation**

Students with mental retardation have the legal right to be educated in
the general education classroom. The Individuals with Disabilities
Education Act (IDEA, P.L. 94-142 passed as the Education of All
Handicapped Children Act in 1975) entitles students with disabilities to
the right to educational opportunities with nondisabled peers. This law
provides the legal basis for the inclusion of students with mental
retardation in the general education classroom. Therefore, inclusion in
the educational system is not an education issue, but an issue of civil
rights.

Inclusion is the practice of educating students with disabilities,
regardless of the severity, in the general education classroom, with an
appropriate level of on-going supplemental support. The student with a
disability is an active, equal member of the general education class.
Both general and special educators are responsible for the instruction
and progress of the student with mental retardation in an inclusive
setting. The student should begin his or her education in the general
education classroom with the support needed to be successful. A student
can only be removed from the general education classroom and placed in
an alternative, more restrictive setting, such as a special education
classroom or segregated center, \"when the nature or severity of the
handicap is such that education in the general classes with the use of
supplementary aides and services cannot be achieved satisfactorily\" (20
U.S.C. 1414(a)(1)(C)(iv). Removal from the general class must be decided
on an individual basis and not on the type of severity or the
disability. In other words, a student being labeled mentally retarded is
not reason enough to put the student in a more restrictive environment.

In the present educational system, students with mental retardation are
often placed directly into segregated settings and removed completely
from any opportunity to be educated in the general education classroom.
They are expected to gain the skills needed to be successful in the
general education classroom in the more restrictive setting. Students
with mental retardation are not considered developmentally ready for the
general education classroom. Placement in a segregated setting lowers
the expectations of the student. The deficits are seen to be in the
individuals skills and abilities and not with the educational system
that is legally charged to support and educate individuals with mental
retardation with their nondisabled peers.

This practice has led to the development of general and special
education into two separate entities, each with its own values, foci,
curricula, and outcomes. Over the years, special education has become
viewed as a placement instead of as a supplemental support to the
general education system. Inclusion in the general education class seen
as a privilege to be earned and a student could only leave the
segregated special education placement if he/she has reached a certain
level of skills and functioning.

This educational system promotes a society of inequality through the
segregation of individuals with mental retardation. The educational
system is comprised of two distinctly separate components: general
education for nondisabled students characterized by outcome based
instruction and special education for students with disabilities
characterized by fragmented instruction based on developmental
readiness. This dual system supports a society in which individuals with
disabilities are perceived as inferior and forced to live outside the
mainstream of the community . In order for individuals with mental
retardation to be valued members of the society, the educational system
must change to accept diversity. The educational system must reflect the
equality among all individuals and their differences.

**Changes in Attitudes and Policy**

> *\"Decide on the kind of society you want, then organize your school
> by that. Twelve years later, you will have that society. \" John
> Dewey*

The Education Work Group\'s vision is a society in which all individuals
are valued members with their unique contributions recognized and
accepted. Individuals with mental retardation should not be kept behind
the walls of segregation, but instead integrated into the community for
housing, recreation, employment, and education. An educational system
that educates all students, an inclusive and unified educational system,
teaches students to value all individuals and expresses equality among
all, regardless of their differences. This system would promote a
society organized on equality for all individuals including individuals
with mental retardation. Schools must be organized in a way that all
students are educated together as a community of learners regardless of
ability levels. An inclusive educational system is child centered. It
offers acceptance and it celebrates diversity.

General and special education should be unified into one effective
educational system that holds high expectations for all students.
Creating an inclusive, unified school system is an on-going, ever
evolving, long-term goal. It requires flexibility, patience, and belief
in the basic principle of inclusion: all students, regardless of their
abilities, have the right to belong. Belonging means being treated with
dignity and valued as a productive member of the classroom, neighborhood
school, community, and society in general. Students with and without
mental retardation are educated in an atmosphere of acceptance of
different levels of abilities as a community of learners.

In a unified educational system, students with mental retardation need
to be taught functional skills in the environment in which they will be
required to use the skills. If these students are expected to function
in a society alongside their nondisabled peers, they must be educated
alongside them. General education is the real world on a school level.
The curriculum is designed to teach concepts and subjects to general
education students, to prepare them for life as adults. Students with
mental retardation need this as well. The specific goals for the student
with mental retardation can be integrated into the general education
curriculum with creativity and ingenuity to the benefit of all students.
All students would be better prepared for life as independent adults in
society.

**Factors in Place That Should Facilitate Change**

There are three factors in place that should facilitate change in the
current educational system: the law, advocacy of individuals and
families, and current thoughts of educators on best practices in
educating students with mental retardation. As previously stated, the
Individuals with Disabilities Education Act (IDEA) mandates that
individuals with disabilities be educated with nondisabled peers with
supports needed to be successful. Again, inclusion is not an educational
decision, it is a civil right. Many individuals with mental retardation
and their families are advocating for an education in the general
education classroom. Families have decided that it is in their best
interest to have their children educated with siblings and peers in
their own communities. These are the children who in the future will be
living in the communities as adults together. Therefore, they should be
educated together.

Educators, supported by research findings, are turning to inclusion as a
best practice to educate students with mental retardation. The problems
of a dual educational system are becoming evident to more educators,
families and advocates. Students with mental retardation need to be
taught specific skills in the environment in which they will be using
them. If we expect them to function as adults in the community, then we
must educate them in the community schools with their peers.

**Barriers to Change**

There are three barriers that stand in the way of the changes for which
we are calling: attitudes of educators, fears of families, and structure
of the educational system. Many special and general educators do not
believe in educating students together in the general education class.
Special educators are set in their developmental instruction and feel
that general educators lack the ability to teach students with
disabilities. General educators believe that the general education
classroom is for the type of child who learns in the traditional ways.
Students who learn in different ways should be removed and placed in
special education.

Another barrier is the fear of families who, like the educators, do not
understand how inclusion would work in a unified education system. They
are afraid that their child might receive fewer services and decreased
attention from the special educators. Many families are unable to see
that, with support of both general and special educators, their children
will be exposed to more curricula and effective instruction. Their
children would also have the opportunity to learn from their nondisabled
peers in a normalized, age-appropriate classroom.

The third barrier is the established structure within the educational
system. The educational system has spent years separating general and
special education, general and special educators, and students with and
without disabilities. People find comfort in established structures and
the idea of completely restructuring the educational system is produces
fear and anxiety.

**Recommendations from the Work Group**

1\. **Create a unified, child centered educational system for all
students that respects differences and celebrates diversity**. One
unified educational system that is characterized by outcome based
instruction would benefit all students in the preparation to become a
contributing member of society. The best components of general and
special education should be combined. From general education would come
outcome based instruction, curriculum based assessment, and effective
teaching strategies. From special education would come the
interdisciplinary team approach, problem solving strategies, and
individualized instruction. By joining the best aspects of both
educational systems and creating one system, an educational system that
teaches all students a functional and effective curriculum would
develop. Special education would no longer be a separate entity but a
support to general education.

2\. **Recognize best practices and model programs.** There are states,
counties, and individual school systems that have embraced inclusion and
a unified educational system. As the saying asks, \"Why reinvent the
wheel?\" Infonnation and knowledge of effective educational strategies
and the task of creating an unified educational system should be shared.
Highlighting programs that are including students with mental
retardation in general education would educate by example. The most
effective argument is proof that a concept works.

3\. **Implement changes in teacher training and preservice that focus on
a unified educational system that includes all students**. Teacher
training and preservice needs to facilitate the unified educational
system by preparing teachers in best practices and curricula. that
benefits all students, regardless of ability. General and special
education teachers who are presently in the classroom need to be trained
in the principles of inclusion and how to educate children together in
the general education classroom with support from special educators.
Preservice training for individuals who want to become teachers needs to
focus on outcome based instruction and assessment for all students. No
longer should colleges and universities educate general and special
teacher candidates separately. Teachers need to be taught the effective
strategies that have developed from both general and special education.
They should be prepared to deal with all students in an individualize
manner and develop a classroom that focuses on the child\'s abilities.

4\. **Educators and families must collaborate**. Students and families
need to feel that they are the center of the educational system. Their
ideas, issues, and concerns need to be heard and understood. Educators
and families are a team and need to work as any effective team with
respect, dignity, and honesty. Open communication is the foundation for
planning and creating an individualized educational program for students
with mental retardation. We are each experts in our own field, be that
educational practices, our own children, or ourselves. Without each
other, as a team, we are limited in our own abilities.

5\. **Develop a curriculum to promote functional living in society**.
Students with mental retardation need to learn skills that will enable
them to function as independently as possible as adults. Curriculum can
no longer focus on developmental readiness and skills. We need to
examine the skills needed as adults and specifically teach them in an
original or modified form.

6\. **Teach self-advocacy skills to students with mental retardation**.
Students need to be taught to be their own advocates. The students need
to be empowered and involved in their education and lives. We need to
teach and encourage them to make decisions, choose options, and voice
their opinions. Beyond that, once they are self-advocates, their
decisions and choices need to be honored. They need the skills and
ability to choose how to live their lives as much as any other
individual.

7\. **Develop a system of advocacy and case management that is
independent of the educational system**. Students with mental
retardation and their families need access to a professional who would
represent their best interest. As a safeguard, an advocate who could
also play the role of case manager, should be available to families as a
part of their guaranteed educational rights. This advocate would help
student and family through the technicalities and paper work of the
educational system while ensuring that the priorities and needs of the
student and family are addressed. This person would not be employed by
the school system but by a separate service agency to avoid conflicts of
interest. Another aspect of the advocate\'s role would be to help the
student and family through transitions into and out of school. The
person would be able to connect students and families with resources and
services available through the government and community.

8\. **Implement a campaign of public awareness and education regarding
disabilities.** Society needs to be aware of the abilities and
contributions that individuals with mental retardation and disabilities
in general make to their communities. By accepting individuals with
mental retardation in the communities, we are sending the message that
all people belong. We must live what we believe and teach all
individuals, regardless of abilities, have a place of dignity and value
in our society. This public awareness campaign would highlight the
abilities of individuals through events such as Disability Awareness
Day, national conferences, and media coverage. By accepting individuals
with mental retardation in society and giving them exposure, their
abilities will speak for themselves.

**Conclusion**

It was an honor to be involved in such an undertaking as the 1997 Next
Generation Leadership Symposium. Together, as the education work group
and shareholders in the educational system, we examined the state of
education for individuals with mental retardation, discussed the needed
changes, and developed recommendations. We, as future leaders of
education, agreed that we must lead by example and action. Our beliefs
in inclusion, equality, and dignity for all individuals must guide our
words and actions in order to create the society that we envision.
Through us, let there be an inclusive educational system that is
child-centered and offers acceptance and celebration of abilities and
diversity.

Early Intervention

and Parenting Support

in Public School Inclusive Programs

By Heidi L. Miller, Ph.D.

Watertown, Massachusetts

This paper presents portions from a larger study (Miller, 1994) on
providing inclusionary early intervention programs. Included is a
proposal for a legislative mandate which would provide early
intervention and parenting support programming in the public school
system. The intent of this proposal is to spark legislative action to
provide the option for early intervention in inclusive settings with
services available to all children and their parents who choose to
participate regardless of at-risk or disability status. Current
legislation, Part C of the Individuals with Disabilities Act, provides a
multi-disciplinary system of early intervention services for children
with disabilities and those considered at-risk. However, services for
the remaining portion of infants and toddlers in this country are not
similarly addressed. The benefits early intervention provides are not
limited to at-risk populations. Indeed the benefits that early
intervention holds for children at varying ability levels in inclusive
settings has been documented to benefit both the children with and
without disabilities (Ross, 1992). In recognition of the needs of young
children and their families many states have implemented forms of
inclusive intervention services. However, no program thus far has
reached the multitude of American families in need.

**Methodology**

This study was an analysis of early intervention programs across the
country between 1975 and 1994. The purpose of this study was to document
findings from early intervention and family support programs to discover
key elements of success. Secondly, this study was intended to provided a
vehicle for facilitating early intervention and parenting support in the
public school system.

Research Questions

• Why begin formal education so early?

• Can variables of success be isolated within viable programs?

• How do we bring these programs to our schools?

1\. **Populations and Programs Studied**-An exhaustive literature search
was conducted on a variety of programs nationwide. Model programs were
selected and reviewed. Eight states were selected as sites of model
programs including Arkansas, Connecticut, Kentucky, Maryland, Minnesota,
Missouri, Oregon and Vermont.

2\. **Scope and limitations of this Study**-This study was limited to
research on the educational impetus and components of working programs.
As programs in these states have likely undergone some changes in the
three years since the original study, details of specific programs are
not outlined below. However, a synthesis of successful program
components is included in the following legislative proposal. An
analysis of legislative processes in program implementation was included
in the larger study.

3\. **Presentation and Analysis of the Data**-Why begin formal education
so early? The learning opportunities of a child during the earliest
years of life make a permanent difference in his/her lifelong
intelligence and functioning. Scientific research shows that the brain
can actually develop more neurons and interconnections so it will become
more intelligent and more capable of learning and thinking for the rest
of life (Beck, 1993). Additionally, parental attitudes and child-rearing
practices, during the child\'s crucial early years will help or hinder
the child\'s chance for success later in school and into adulthood.
Without education parents are likely to perpetuate intergenerational
patterns of behavior which may adversely the child\'s growth and
development. Can variables of success be isolated within viable
programs? Yes, the findings of this study draw several conclusions about
the structure of successful intervention/parenting programs. The goal of
these programs is to empower parents to give their children the best
possible start in life. This mission must be executed through a highly
developed support structure and well-organized system of service
delivery. This system of service delivery is outlined in the following
section.

How do we bring these programs to our schools? The following program
components were synthesized from the literature by the researcher into a
model program proposal, hopefully to be adapted into a legislative
mandate.

**Parent And Child Together (PACT) Goals**

To assist children nationwide in maximizing their potential and
readiness for school through a curriculum which:

• Realizes the importance of the child within the family and the
interdependence of family/school education. Thereby, the program will
provide the parents with the necessary education and skills to function
more effectively as parent educators.

• Acknowledges the role of the community in the education of children;
viewing the child and family as interconnected or as a vital link in the
community.

• Promotes the development of a healthy generation with a strong and
positive sense of self-worth, and with the knowledge that each
individual can contribute and own a special place in society.

• Minimizes the need for expensive remediation, and special education
services.

• Reduces the intergenerational dependence of the family on the current
welfare system through parent education and skill training.

1\. **Services**-The researcher suggests a Federal legislation to
mandate the availability of early intervention and family support
programming through the public school system. Each state shall be
responsible to coordinate programs with local schools systems. Although
programs will have universal acceptance (available to all children and
their parents or guardians), they will be tailored to the populations
and individuals served.

2\. **Assessments and Evaluations-**Children should be periodically
assessed (or screened) for general development along with language,
hearing, vision and motor skills. Evaluation of children\'s progress in
these areas should be noted on an on going basic. Furthermore, any child
who is found to be in need of additional services under IDEA should
receive them. Additionally, family needs as they pertain to the child\'s
development should be assessed.

3\. **Home Visits and Group Sessions**-It is important to see the child
interact in the home environment in order to facilitate appropriate
suggestions and intervention. Group sessions often provide inspiration
and build a support network.

4\. **Interagency coordination services**-Interagency coordination with
human services and health care agencies in addition to referrals to
other community resources for childcare and other necessary services.

5\. **Transportation and accessibility**-Transportation should be
provided. Successful programs also provide a variety of times for
working parents to meet.

6\. **Parent literacy and skill training**-Courses that will bring
parents up to a high school equivalency should either be provided or a
referral should be made to an appropriate resource.

7\. **Participants**-Universal eligibility for all children 0-5 (or
formal school age) and their parents (primary caretakers or legal
guardians) It is suggested that grandparents, other caretakers, and
siblings be included in some sessions. Prenatal education and counseling
is suggested as well.

8\. **Funding**-The researcher suggests funding through the public
school system. Federal funds, foundation grants, bond issues, tax
levies, community and corporate contributions (of services as well as
money) may also be utilized.

9\. **Staff**-Unity and consistency are crucial elements of an
appropriate program which outline the need for inter­agency coordination
at the state, local community and program levels(Harbin & McNulty; and
Lowenthal; as cited in Chen, 1993) and for trans disiplinary teaming at
the program level. Staff should therefor work to coordinate services
with any necessary agencies. Regularly scheduled comprehensive
in-services should be provided to train all staff about inclusionary
methods and special needs of children in their programs as well as to
keep staff up to date on current research and practices. It is
recommended that all teachers have a certification in special education.
Consults and direct care by specialists should be provided as needed.
Selection criteria for staff should be set by the state board of
education. Due to the particular needs of families and infants, special
requirements for qualification and training in the area of early
intervention and family support should be established.

10\. **Parents Role**-Parents are their children\'s first teachers as
such they share a leading role in the development of the young child. It
is a parent\'s responsibility to ask questions when appropriate,
follow-through with interventions at home and view themselves as
informed consumers.

11. **Evaluation**-Thorough evaluations are required to meet the program
    guidelines suggested above. The researcher suggests each state be
    given the liberty to determine how evaluations are to be conducted
    in accordance with meeting federal program requirements.

12\. **Miscellaneous**-A high degree of creativity is suggested for
implementation of this program. Programs are successful when they are
frequent and occur over an extended period of time. Services must be
provided which are appropriate to the developmental level and needs of
the individual child. Note: Although this paper focuses on early
childhood programming, studies indicate parental involvement throughout
the child\'s schooling is important. Classes in middle and high school
on basic parenting and prenatal care are advisable as well.

13\. **Future Research-**Research shows that educating children from
birth, when done appropriately over an extended period of time, and with
consistent parent involvement, will produce dramatically positive
effects. Yet, the full scope of social repercussions from a nationwide
program is unknown. An area for further study is the impact of early
education and parent involvement on the productivity of our children as
adults in the global market. We have already seen evidence that by
producing happy, healthy, well educated children we are creating a
future workforce of adults who will have more productive living and work
skills.

**References**

Beck, J. (1993) Schools must follow sciences lead to nourish young
minds. Chicago Tribune. P25

Chen, D. (1993). \"Early Intervention: Prevention\". In J. W. Reiman &
P. Johnson (Eds.), Proceedings of the National Symposium on Children and
Youth Who are Deaf-Blind. p37-51. Monmouth, OR: Teaching Research
Publications.

Harvard Family Research Project, (1992). Pioneer States: Innovative
Family Support and Education Programs. Cambridge, MA

Harvard Family Research Project, 1992. Innovative States: Emerging
Family Support and Education Programs. Cambridge, MA.

Miller, H.L (1994).Early intervention and parenting support in the
public schools: An inalienable right for all. Unpublished

Ross, H.W. (1992). Integrating infants with disabilities? Can ordinary
caregivers do it?. Young Children, March, pp. 65­71

Rouse, J. M. et al. Sept. (199 1). Parents As Teachers: Nurturing
Literacy in the Very Young. Presented in an article from Zero to Three,
Arlington: VA

TOPIC VII: RESEARCH ISSUES

Papers/ Presenters:

**RESEARCH ISSUES**

Yona Lunsky

Nisonger Center

Columbus, Ohio

**REDUCING THE INDICENCE OF DEVELOPMENTAL DISABILITIES: BUILDING BRIDGES
BETWEEN RESEARCHERS, POLICY MAKERS AND SERVICE PROVIDERS**

Laura L. Jelliffe

Doctoral Candidate

University of California, Davis

Research Associate

President's Committee on Mental Retardation

RESEARCH ISSUES

By Yona Lunsky

Nisonger Center

Columbus, Ohio

**Background**

The topic of research is one which relates to every issue discussed at
the Next Generation Leadership Conference. Whether one is seeking
answers about best educational practices, how to implement a job coach
project in a rural town, or the percentage of prisoners with mental
retardation in a maximum security setting, some type of research is done
or could be done. Thus, research issues apply to the broader field of
mental retardation, or at least they should, and not just to those
individuals that traditionally refer to themselves as researchers.

At the 1996 conference, the research issues workgroup discussed recent
advances in the areas of genetic mechanisms associated with mental
retardation, poverty, mental retardation and policy implications, and
the increasing need for supports in the community. This discussion led
to a series of recommendations about topics for future research, along
with some suggestions of how research could be done. This year, the
research group chose to focus on the broader importance of research,
rather than on specific research topics, with the goal of improving the
research process and expanding the utility of research findings. In
keeping with this theme, the research issues workgroup was made up of a
diverse collection of individuals: administrators, family members,
students, direct support workers, and teachers. This diverse group
shared a common \"drive to discover\" and a vested interest in the
future of the field of mental retardation and other developmental
disabilities.

The combined perspectives of a senior researcher in the field of mental
retardation, Laraine Master Glidden, and a junior researcher, Laura
Jeliffe, gave the work group several issues to consider in terms of how
research is conducted at present and the direction in which it is going.
Research was examined in terms of its value, its participants, existing
hierarchies, and research training.

1\. **Value of mental retardation research**: According to Master
Glidden, researchers in the field face the constant challenge of having
to prove the value of their research to researchers and non-researchers
alike. The non-researchers in the field are not as interested in
research as they could be. Their disinterest may be due in part to prior
negative experiences with research. For example, some families and
consumers participated in past research that they did not fully
understand and for which they felt coerced to give their consent. Even
in a recent study (Heller, Pederson, & Miller, 1996), 22% of leading
self advocates reported that they did not understand the purpose of a
study that they completed.

> Not only must researchers prove the value of their research to the
> non-researchers in the mental retardation field, they must convince
> researchers in other areas that mental retardation research is
> valuable. Researchers in the general population rarely consider
> findings from the literature on mental retardation. Reasons for this
> neglect may be based on imperfect experimental designs, small sample
> sizes and non-standardized instruments frequently found in mental
> retardation research. Other researchers may not refer to the mental
> retardation literature simply because of the misconception that
> findings are not relevant to their population. A side effect of the
> self-containment of research is that mental retardation researchers
> may be forced to \"reinvent the wheel,\" because of limited
> communication with outside researchers.
>
> There is a third group to whom researchers in the field of mental
> retardation must prove the value of their research, and that is the
> researchers themselves. Increasing specialization within the field of
> has led some researchers of the same topic to feel as if they are
> speaking different languages. Greenspan discusses an example of this
> when he compares the quantitative to qualitative approaches to mental
> retardation, which are generally considered as separate and
> incompatible. He suggests that few researchers if any, qualitative or
> quantitative, show any interest in using a combined approach (1997).

2.  **Changing role of research participants**: An important shift is
    taking place in terms of how individuals with mental retardation,
    family members, and other advocates are viewed by researchers. The
    leading journals in the field are now requiring that \"people first
    language\" be used, emphasizing the humanity of people with mental
    retardation. Those involved in studies should now be described as
    participants as opposed to subjects.

> The 1992 definition of mental retardation (Luckasson et al., 1992),
> emphasizing levels of support in 8 areas of functioning, should
> further alter how researchers view their participants with mental
> retardation. According to this definition, a given participant cannot
> be classified by IQ score alone, or as falling under a broad level of
> functioning category. Individuals are no longer categorized as having
> mild, moderate, severe or profound mental retardation. Acceptance of
> the new definition, viewing individuals in terms of the level of
> support they require to complete different tasks, requires a major
> shift in conceptualization and corresponding changes in research
> design. Such modifications have yet to occur in the research
> literature. Thus far, many researchers are continuing to use the 1983
> definition when they recruit participants and describe them in their
> studies.
>
> Individuals with mental retardation are no longer the captive audience
> they once were when they lived in large state facilities. It is
> therefore more challenging to recruit participants for a given study.
> Community research necessitates less control, and brings with it
> complications. For example, more children are attending their home
> schools in integrated classes which would require the researcher to go
> to several schools rather than one school for participant recruitment.
> Many individuals previously recruited from sheltered work settings may
> now work in the community with unpredictable hours, making their
> recruitment difficult. On the other hand, if individuals with mental
> retardation are more involved in their communities, then it follows
> that more research should be conducted in those natural settings. The
> self-advocacy movement deserves mention as another influence on the
> changing role of participants. Self advocates are voicing their
> concern about the importance of consent in research, and also an
> interest in being more involved in the research process. Thus, they
> are striving to move from being subjects to participants to
> co-investigators, as are parents and others in advocate roles.

3\. **Existing hierarchies in the research community**: As discussed
above, traditionally there exists a hierarchy between experimenter and
subject. This hierarchy is lessening as subjects become participants and
will evolve further if participants become more actively involved in the
research process.

> A second hierarchy exists within organizations that support or reject
> research proposals. When an organization is approached to be involved
> in research, particular high status individuals make the decision for
> that organization. With more consumer representation on boards, this
> process may be changing. However, without the consumers understanding
> the proposals and feeling safe enough to express their opinions, the
> inclusion of community members in the decision making process is
> merely a form a tokenism.
>
> Young researchers are also confronted with hierarchies. It is
> difficult for them to obtain grants and recruit participants because
> of their limited experience. It is challenging to gain experience
> unless they are somehow attached to a researcher or an administrator
> in a powerful position. It is also difficult for young researchers to
> present their ideas, unless they are supported by well known
> researchers in their field. Those at the bottom of the research
> hierarchy have limited funds to attend conferences and to present
> their ideas in conference organized symposiums. Existing efforts to
> lessen these barriers faced by new researchers include anonymously
> reviewed journal submissions and young researcher awards and paper
> competitions. Unfortunately, many young researchers are unaware of the
> opportunities that do exist.

4\. Lack of research training programs: There are few graduate level
programs that allow an individual to pursue studies in mental
retardation, and such programs are not well publicized. Thus, finding a
program that meets ones research interests is challenging, and students
often have to settle for peripheral study of mental retardation issues.
Few students are drawn to the field of mental retardation research at
all because it is so under-represented in the undergraduate curriculum.
A common theme articulated by several young researchers at the
conference was that they were relieved to meet other individuals in
their field, as they felt rather \"alone.\"

> The training that exists can be so specialized that cross domain work
> is limited. The young researcher is trained on a specific topic and
> not given the skills to communicate that topic to others unfamiliar
> with it, and is not exposed to other important models, or content. It
> is difficult for young researchers to meet with other young
> researchers to gain alternative perspectives to their own.
>
> Finally, research is not emphasized in other sorts of training
> programs in the field, so that research students, unless already
> studying in an interdisciplinary setting, get minimal exposure to
> collaboration with others. Conversely, students in non-research
> oriented training programs gain limited exposure to the importance of
> research in their area. This dichotomy in training models reinforces
> the current split between research and practice.

**Vision**

Our vision of future research centers around three themes:
responsibility, accessibility, and utility.

• *Responsibility*: The state of being answerable, accountable,
important

• *Accessibility*: The quality of being easy to approach, open to the
influence, attainable

• *Utility*: The state of being useful, beneficial, advantageous

These three themes need to be addressed in terms of the research process
(how research is done), and in terms of the research outcome (what is
done with research). As noted previously, there are several factors in
place that hould facilitate the change: new definition of mental
retardation (AAMR, 1992); young researcher grants and awards;
conferences like PCMR\'s Next Generation Leadership Symposium;
self-advocacy movement; and community collaboration, membership on
boards. There are also several existing barriers:

• resistance to change

• lack of training under new model

• lack of funding for training

• low number of young researchers being recruited into the field

• the continued existence of more \"invisible hierarchies\".

**Recommendations-Research process**

Researchers must strive for quality research. We define quality research
as research that is objective; based upon roper methodology, training
and ethics; data driven and is responsible to stakeholders needs. These
stakeholders iclude the broader research community, service providers,
funding entities, and people with disabilities and their families.

1\. **In order to ensure quality research, research should include a
strong evaluation component (such as an Institutional Review Board (IRB)
or peer review system) which involves all stakeholders**. University
IRBs, for example, do not necessarily involve experts in the field of
mental retardation research, and certainly no persons with disabilities
or their families. IRBS might therefore have a limited understanding of
consent and confidentiality issues as they apply to this population,
which are of utmost importance. Involving all stakeholders means that
all stakeholders have an equal voice. If a family member, self-advocate,
or direct support worker is unfamiliar with the research review process,
or any aspects of the study, it is the researchers\' responsibility to
explain the study in a way that it is understood.

2\. **Researchers should maintain a clear focus upon producing research
that supports the interests of persons with disabilities and contributes
to knowledge of the field.** One way to determine what would be of value
to stakeholders would be to take a participatory action-research
approach. This would necessitate more qualitative examination of issues
in the preliminary stages of research with participants playing an
active role. To best contribute to knowledge in the field, this
qualitative exploratory work could then be followed by more detailed,
perhaps empirical examination. This combined sequential approach has
been implemented successfully in some areas, such as research on social
intelligence (Greenspan, 1997).

3\. **In order to maintain quality research in the future, we need to
provide quality training**. Efforts should be made to recruit, support
and mentor young researchers, keeping in mind that young researchers
come in all shapes and sizes. Training should be more accessible to A)
traditional mental retardation student researchers; B) students studying
other research areas, so that they can gain an appreciation for mental
retardation issues, and C) students in the mental retardation field who
would not ordinarily consider themselves to be researchers. A guide
listing all avenues of mental retardation research should be made
available in every undergraduate studies office, as well as high school
counseling office, and reference library.

The programs themselves should offer several perspectives, and teach
different research methods, outlining the pros and cons of each.
Appreciation for the history of mental retardation research is
important, both to celebrate the great steps taken, and to learn from
important mistakes in the field. Practice writing grants and reviewing
journal submissions should be available to students as part of their
training. The leading journals could have a student editorial board, as
has been done in other journals (e.g. American Journal of Community
Psychology). Young researchers should be taught how to collaborate with
other researchers and to work within the community. Existing
professional and advocacy organizations (e.g. The Arc, AAMR) could
better publicize research grants and opportunities for young
researchers. More formal mentorship and internship programs could be
implemented. Finally, \"non-research\" students should study the
importance of research in their area of study, and gain an understanding
of their potential role as research collaborator.

**Putting Research To Use: Everyone Plays A Role**

What happens with research is not inherent in the research process
itself, but is just as important. To ensure that future research in
mental retardation is useful, efforts can be made by all stakeholders,
and on several levels. Our recommendations are categorized in terms of
responsibilities on a national level, by professional organizations, and
by the researchers themselves.

1\. **On a national level, a greater and more accurate public awareness
of mental retardation research needs to occur**. We propose the
information centers or clearing houses be created that disseminate
information about research related to mental retardation and other
developmental disabilities. In addition to written information, they
could establish Internet sites with abstracts and simplified
information, as well as information in audio-visual format for
non-readers . The clearinghouse would need to be easy to access and
those involved would have to be trained to work with researchers and
direct care staff, families and consumers. The clearinghouse could also
be responsible for dissemination of research literature to public
libraries and community newsletters.

2\. **We encourage service providers and community organizations to
invite researchers into the service delivery system to share their
research findings and to learn from the organization**. Meetings with
researchers could help community members recognize their own potential
to be researchers. Providers could delegate and encourage staff and
community members to gather information on topics of interest to present
to colleagues, organizations, parents and self advocates. Workers and
advocates in the field could generate ideas, observe outcomes, do pilot
studies and collaborate with researchers.

3\. **Researchers must accept responsibility to do more than publish
their product for a select audience**. As Jeliffe describes in her
paper, it is vital that researchers publish and present their work in
different arenas for different audiences. Researchers could present and
prepare simple descriptions of their studies to disseminate, as standard
practice. Such descriptions could become a mandatory part of any journal
submission. Finally, researchers need to actively explore avenues for
sharing information and learning from service providers, parents, policy
makers and self-advocates. Community collaboration efforts should not be
left entirely to the community members.

**Summary of Recommendations-Future Research: Emphasis on
Responsibility, Accessibility and Utility**

Research process:

• evaluation component that involves all stakeholders in equal manner

• research that supports interests of persons with disabilities

• quality training for young researchers and non-researchers alike
(guide listing programs; training under collaborative model; student
editorial board; more grants available and better publicized to young
researchers)

Research outcome:

• national effort for greater more accurate awareness of research,
national clearinghouse

• service providers encourage partnerships, reward staff for using
research, foster role as collaborator

• researchers publish findings for several audiences, prepare simple
summaries, active role in community

**References**

Greenspan, S. (1997). President\'s comer. *The Academy on Mental
Retardation Newsletter*, 16, 1-2.

Heller, T., Pederson, E., & Miller, A. (1996). Guidelines from the
consumer: Improving consumer involvement in research and training for
persons with mental retardation. *Mental Retardation*, 34, 141-148,

Luckasson, R., Coulter, D.L., Polloway, E.A., Reiss, S., Schalock, R,
Snell, M., Spitalnik, D., & Stark, J.A. (1992). *Mental retardation:
Definition, classification, and systems of supports. (9th edition).*
Washington, DC: American Association on Mental Retardation

REDUCING THE INCIDENCE OF DEVELOPMENTAL DISABILITIES:

BUILDING BRIDGES BETWEEN RESEARCHERS,

POLICY MAKERS AND SERVICE PROVIDERS

By Laura L. Jellifle

Doctoral Candidate

University of California, Davis

Research Associate

President\'s Committee on Mental Retardation

**Overview**

The goal of this presentation is twofold; first, the importance of
collaboration between researchers, policy makers, service providers,
family members and persons with developmental disabilities is discussed
with special emphasis on working together without hierarchy towards a
common goal of bettering the lives of individuals with developmental
disabilities and/or reducing the incidence of developmental
disabilities. Secondly, research from The Kauai Longitudinal Study is
presented which reflects the efforts of collaborative work that has
significantly influenced both policy and service delivery in the past
and continues to yield results which suggest avenues for reducing the
incidence of developmental disabilities.

Researchers and policy makers alike have noted a shift during the past
thirty years in how the concept of early intervention and prevention of
disabilities is viewed. In the not so distant past infants and children
with developmental disabilities were segregated from their families and
institutionalized- often for the entirety of their lifetimes (a
practice, which sadly, still persists in some developed and developing
countries worldwide). These are trends in the past that young
researchers, policy makers and service providers must take note of for
they provide the inspiration and grounding for charting a course that
reflects a willingness to work together and invest in the futures of ALL
children.

During the past twenty years there has been a clear shift towards the
recognition of the rights of individuals with developmental disabilities
and an adoption of a service approach based on care and understanding.
This has, thankfully, led to a great deal of progress in how and where
people with developmental disabilities live and has led to the
recognition that, people with developmental disabilities may be allowed
and encouraged to play an active part in decision making that impacts
their lives and those of their peers. In many ways, continuing this
trend and carrying this torch is what the Next Generation Leadership
Symposium is about. The challenge however, comes in the form of a
question: Where do we go from here? This question is especially salient
in the area of prevention and early intervention where progress has been
made but not nearly at the needed pace given the incidence of
developmental disabilities in the United States.

**Where DO we go from here?**

Making progress in the area of prevention and early intervention (and
thus, reducing the incidence of developmental disabilities) will require
that researchers, policy makers, service providers and families WORK
TOGETHER! What this statement really means is more than has been
traditionally accomplished when interested parties have \"worked
together\" and is more than is typically being done in today\'s venues.
For progress to be real progress in prevention and early intervention
(as well as in other areas) participants in the process must be invited
to the table as equal partners, without hierarchy and without prejudice-
only then can those involved in the process truly work together. All too
often research projects, policy recommendations, and service delivery
plans are drafted and carried out without consideration for the
interests and expertise of their fellow professionals, concerned family
members, and individuals who themselves have developmental disabilities.
An alternative to this scenario (which is becoming more and more common-
but is perhaps just as ineffective) takes place when researchers, policy
makers, service professionals, family members and individuals with
disabilities are invited to participate in decision making activities
and are \'Talked-at\', \'Talked-over\' and/or \'Talked-around\'.

**\'Talked-at\',\'Talked-over\' and/or \'Talked-around\'**

Most concerned professionals, family members, and individuals with a
developmental disability have probably had the experience of being
invited to participate in a decision making activity and been
\'Talked-at\', \'Talked-over\' and/or \'Talked-around\'. This tendency
often creates the impression that an approach, decision and/or policy
was arrived at collaboratively when in fact, in may be the case that all
parties were present but did not participate as partners, or perhaps,
did not participate at all but were merely present. This tendency has
been all too present in service delivery for the past decade where
individuals with developmental disabilities and their families have
increasingly been invited to the discussion table but have often been
treated merely as observers to a process they are unfamiliar with and
unaccustomed to. More recently this tendency is being observed in the
realm of policy making and research design where individuals with
developmental disabilities, their families, and community members are
being invited to decision making forums but are treated as observers to
an unfamiliar activity where people speak at them, around them, or over
them in \'alphabet soup\'. For example, at a recent meeting with
parents, policy makers and individuals with mental retardation a
physician (who I had done some research with before) turned to me and
asked, \"do infants with SGA or IUGR qualify under ADA or just IDEA.\"

**Partners in Research, Policy Making and Service Provision**

The concept of bringing people together as partners begins with
addressing the issue of how avenues of communication can be built,
opened, and traversed. Obviously ideas about how this can be done are
numerous, perhaps key however, is the importance of encouraging full
participation of individuals not familiar with a given decision making
process and encouraging researchers, policy makers and service providers
to explain concepts, diagnoses, programs, laws etc \... rather than to
just refer to them using acronyms or \'code-words\'. This is, in many
ways, the most difficult aspect of bringing different professionals to
the table.

Clearly there is still progress to made in conducting research, creating
policies and developing service programs that focus on creating equity
for individuals with developmental disabilities. Along with this focus
however, is the need for treating individuals with developmental
disabilities, their families and colleagues from different fields as
experts in their own right. It must be realized that these experts have
contributions to make that are essential and without which, research
design, data interpretation, policy recommendations and service delivery
systems are intrinsically flawed.

Figure 1

Building Supportive Communities:

Levels of Support and Influence

![](media/image7.png){width="6.0in" height="8.152777777777779in"}

> State And Community Supports

**Getting Connected**

Working together as colleagues and experts requires that professionals
working with or on behalf of individuals with developmental disabilities
increase their awareness of how the different disciplines and components
of research, policy making and service delivery are connected. An
understanding of how disciplines and components are connected can then
allow for subsequent evaluation of where and if essential components are
located within the communities in which they live and/or study and thus,
help professionals, families and individuals with developmental
disabilities develop and/or make use of their community resources.

Figure 1 depicts a system of service delivery, policy making and
research design that is \'person centered\'. What this model suggests is
that there are different levels of functioning and support that all
concerned members of the system should be aware of- especially
researchers, policy makers and service providers. For example, if
researchers, policy makers, and service providers are interested in
increasing the cognitive functioning of developmentally delayed
children, all of these professionals should be aware that there are
avenues of potential support and intervention located within and between
different levels. At the individual level an infant or toddler may in
fact display noticeable cognitive delays but in fact appear physically
healthy and happy-thus this individual\'s physical abilities and
social-emotional functioning may serve as a potential support for
increasing cognitive functioning. The functioning and level of support
and/or intervention most beneficial for this individual may then differ
dramatically from that of an individual with cognitive delays and
significant health problems. A similar contrast can be made at the
familial level where the degree of intervention and/or support needed to
prevent long-term cognitive delays may differ dramatically as a function
of socio-economic status, the presence or absence of siblings, the
presence or absence of extended family members and/or a myriad of other
factors. At the community level the availability and accessibility of
services and intervention efforts may differ dramatically based on
whether or not individuals live in urban or rural settings, and at state
and national levels services and intervention efforts may differ
dramatically as a function of state interpretation of national mandates
and/or as a function of fiscal management.

The degree of understanding by a researcher, policy maker and/or service
provider of the different dynamics inherent in each of these levels will
likely mediate the effectiveness of a program and/or the accuracy of a
given research project, therefore, increasing understanding requires
that researchers, policy makers, service providers, families, and
individuals with developmental disabilities work together. Without the
contributions of all these members who provide essential information
regarding potential levels of support and influence in the lives of
people with or at-risk for developmental difficulties, building
supportive communities for those with developmental disabilities will
continue to prove difficult and early intervention programs aimed at
preventing developmental disabilities will likely fall short.

**Recognizing Interconnectedness: Reducing the Incidence of
Developmental Disabilities**

In many ways it can be argued that professionals whose aim is prevention
of developmental disabilities and/or early intervention with individuals
at risk for or diagnosed with a developmental disability are
particularly obligated to work with colleagues from other disciplines in
order to reduce the incidence of developmental disabilities. Clearly,
researchers in this area should aspire to influence policy and service
provision. Similarly, policy and systems of service provision should
reflect current research and should be open and flexible enough to allow
for changes that would serve to buffer individuals against long-term
developmental difficulty.

With regard to levels of influence, professionals whose aim is to
prevent long-term developmental difficulty should recognize that
individual, family, community, state, and national factors may mediate
long-term developmental functioning and should therefore be evaluated
and addressed in the design and implementation of research studies,
public policy and service delivery systems.

Recognizing the interconnectedness of research, policy, and service
delivery systems that share the common aim of preventing long-term
developmental disability should stimulate professionals into
collaborative work with each other. Similarly, the realization of this
interconnectedness should serve to encourage individual researchers,
policy makers and/or service providers to enter into unfamiliar
territory- thus becoming researchers and policy makers, policy makers
and service providers, etc\...

**Case in Point: Research on Intrauterine Growth Retardation**

Conducting research that is multidimensional, cuts across different
domains of study, and attempts to influence both policy and service
provision is a difficult, arduous task- nevertheless, this appears to be
what research in the area of prevention of developmental disabilities
requires today.

The research presented here reflects an attempt by investigators to
conduct research that cuts across individual developmental dimensions,
involves subjects from an array of ethnic and socioeconomic backgrounds,
involves researchers, practitioners and policy makers in research design
and implementation, and reflects an attempt by investigators to create
bridges of communication and collaboration between researchers,
practitioners, policy makers and service providers.

**Study Design**

Forty years ago, a team of public health workers, pediatricians and
psychologists began following a cohort of about 660 individuals born on
the Hawaiian Island of Kauai in 1955. This study population consisted of
Hawaiian, Filipino, Japanese, Portuguese, Puerto-Rican, Chinese, Korean,
Part-Hawaiian and Caucasian children from a range of socio-economic
backgrounds. Beginning in about the fourth week of gestation (through
intensive community efforts aimed at identifying all pregnant women
early in pregnancy) the reproductive histories, physical characteristics
and emotional status\' of the mothers began to be collected. Follow-up
efforts with these children included extensive data collection regarding
perinatal stress, extensive data collection regarding physical,
intellectual and socio-emotional development in infancy, childhood,
adolescence and adulthood (involving standardized and non-standardized
measures), and extensive data collection regarding quality life and of
family environment from infancy through age-40. The results from this
study- known as the Kauai Longitudinal Study, have been reported in
numerous publications including four books most recently of which is
\"Overcoming the Odds: High Risk Children from Birth to Adulthood\"
(Werner & Smith, 1992). The 40-year follow-up study with this cohort was
completed at the end of 1996.

In light of the growing body of research from around the world
indicating that infants suffering from significant Intrauterine Growth
Retardation are at increased risk for experiencing long-term
developmental difficulty, in 1996 (while the 40-year follow-up with the
Kauai cohort was being completed) efforts were undertaken to reevaluate
data collected as part of the Kauai Longitudinal Study to ascertain if
the patterns observed by researchers in the U.S. and abroad were evident
in the Kauai sample. The ultimate goal of this research was to determine
if intrauterine-growth-retardation was a significant indicator of
long-term developmental difficulty in this sample and as such, could
suggest the need to target similar groups of infants for early
intervention/preventative services.

**Background: What is Intrauterine Growth Retardation**

Generally speaking, significant intrauterine-growth-retardation is
considered to be indicated when an infant is born\'Small-for-Gestational
Age\' (SGA). The most commonly used definition of SGA (and the
definition endorsed by the World Health Organization) is birth weight
which falls below the tenth percentile on published birth norms. SGA
birth status is generally thought to be a marker of
intrauterine-growth-retardation and a likely indicator that an infant
experienced a deficient or otherwise deleterious uterine environment
during gestation. In the United States the rate of SGA appears to vary
greatly as a function of socioeconomic status and may include from 10%
to 30% of all live births in some poor communities (Parker, Schoendorf &
Kiely, 1994). It is important to note that infants born SGA often weigh
more than 2500 grams, meaning these infants are not categorized as
\'Low­Birth-Weight\' and thus do not qualify for early
intervention/prevention services in most communities around the United
States.