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

*A series on contemporary supports to people*

*with mental retardation*

#### Changing Systems

# Co-Authors

Amy Hewitt

Susan O'Nell

# Editor

Yolande Bestgen

## August 1998 

# Acknowledgments

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

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

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

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

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

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

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

## Valerie J. Bradley Gary H. Blumenthal

## Chair Executive Director 

**PREFACE**

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

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

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

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

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

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

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

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

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

supports, and the educational system.

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

vocational opportunities, and supported recreation.

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

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

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

# Acknowledgments

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

James Beaty

Rick Berkobien

Charlotte Booth

Jean Bowen

David Braddock

Val Bradley

Darden Bynum

Steve Dresniers

Mark Englander

John Filler

Doug Forand

Sally Carson Gaines

Jill Galvin

Vicki Gaylord

Kim Guin

Deborah A. Gilmer

Bob Gettings

Mary Hayden

Richard Hemp

Vicky Hicks-Tunich

Kathy Hulgin

Joyce Keller

Mary Kay Kennedy

Jay Klein

Troy Konarski

Charlie Lakin

Sheryl Larson

Jennifer Macleod

Marijo McBride

James Meadours

Joe Meadours

Jean Ness

Emily Murgo Nisenbaum

John O\'Brien

Janet Peters

John Peters

Joe Pichler

Miriam Podrazik

Irene Rausch

Leigh Ann Reynolds

Alan Robichaud

Kristin Ryan

Christine Salisbury

Wayne Sargent

Caren Sax

Julie Silver

Michael Smull

JoAnn Sowers

Marianne Taylor

Jean Tuller

Matt Zeigler

> **Thank you!**

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

## A Note About Language

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

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

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

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

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

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

## 

## 

## Table Of Contents

Overview 1

What Gets Measured Gets Done: Quality Assurance and Enhancement 1

#### New Definitions of Quality 4 

#### Redesigning Quality Assurance 5 

Examples of Alternative Quality Assurance/Enhancement Models 10

#### Internal Quality Assurance 12 

Money, Managed Care and Self-Determination 15

### How Federal Medicaid Money is Used to Support People 

with Developmental Disabilities 17

Possible Future Directions of Long Term Care Spending 20

Participant-Driven Managed Supports and Managed Care 24

Conclusion 26

Resources 27

References 29

Glossary 30

Common Acronyms 34

PCMR Citizen and Ex-Officio Members 36

PCMR Staff 39

Overview

As people with developmental disabilities continue to have greater
opportunities to receive individualized supports and as these supports
are designed to provide opportunities for inclusion in communities of
choice, the importance of and difficulty in ensuring quality and
securing funding become more complex. Changing Systems is designed to
provide information regarding various approaches to quality enhancement
and information on how services and supports are and can be paid for
given these new challenges. Quality and funding in light of potential
managed care models are also explored.

**What Gets Measured Gets Done:**

**Quality Assurance and Enhancement**

The importance of monitoring the quality of services received by people
with developmental disabilities became very apparent in the 1970's when
various exposés uncovered scandalous conditions in State institutions.
Many people living in these institutions were subjected to substandard
living conditions: children were tied to cribs, adults wandered naked
and ate off the same floor where they were \"bathed\" by being sprayed
with a hose. Sexual and physical assault by staff were common, as was
neglect of even the most minimal standards of health and safety. The
Federal government responded to this intolerable situation with a long
list of regulations designed to eliminate this abuse and neglect. These
regulations required documentation on a huge number of health and safety
issues, as well as documented proof that people were given certain types
of opportunities (e.g. recreational, medical, etc.) and that
environmental factors were in place (e.g. a certain amount of living
space, availability of personal grooming supplies, etc.)

As time went on, a cry was heard to return people to their communities.
Many felt that despite health and safety regulations, the isolation of
these large facilities, and the people living and working in them, made
abuse and neglect more likely. A service system was eventually developed
that provided more options, and during the 1980's and 1990's many people
moved from large, isolated institutions to smaller, homelike group homes
located in community neighborhoods. With this move to the community, the
values underlying the service delivery system changed, and ideas like
choice, normalization, community integration and inclusion, having
friends and intimate relationships, became the desired criteria for a
quality program. But while the setting was different, the methods for
assessing quality in these new smaller settings was not. The hundreds of
Federal regulations developed for better living conditions in large
congregate care facilities followed people into the community group
homes.

These state-of-the-art community group home services began to tarnish
with time. Increasingly, people began to realize that living in the
community was not the same as being part of the community. People with
mental retardation and other developmental disabilities lived in typical
homes but they had few friends and community connections, and they
generally lived, worked and played in segregated settings. Not only were
the standards created during the era of institutions inadequate to
monitor quality of life in areas of personal satisfaction with services,
they also interfered with areas such as choice and self-determination.
This shifting focus of services from basic health and safety to
individualized consumer-centered supports has not been met with and
equal shift in monitoring for quality in these services. Because formal
quality assurance mechanisms have not kept pace with these structural
and ideological changes there is a great deal of frustration about what
is getting measured compared to what many people feel is most important.

Quality assurance in residential facilities for people with
developmental disabilities has primarily meant compliance with the
regulations developed for Intermediate Care Facilities for the Mentally
Retarded (ICFs/MR) and other State and Federal regulations. These
regulations specify minimum standards of care, focus on process (e.g.
that meals are made by following strict nutritional guidelines and
served at a certain time) and rely heavily on documentation. Reviewers
periodically make site visits to regulated facilities and write up the
deficiencies that are observed. In response to these citations, service
agencies write plans to correct the identified deficiencies. Stories
abound about site visits where the adherence to regulations appears to
be more important than the actual people who are receiving services. For
example, reviewers coming out and never seeing the person who is
receiving the services, or issuing citations for trivial matters like
crumbs in the toaster or the use of bar soap instead of liquid soap, are
not uncommon. This regulation-based approach to quality assurance was
developed for a system of large public institutions and assumed that
services would continue to be provided in these settings.

Since the mid-1970's, and the birth of the partially Federally funded
but State regulated Home and Community Based Services (HCBS) , a
deinstitutionalization movement has resulted in services being provided
in smaller, more geographically dispersed living arrangements. Yet,
during this change, little consideration was given to the compatibility
of institutional-based regulations with the new smaller, more homelike
settings. Although, the principle of normalization (helping people who
receive services to lead lives as much as possible like other people)
had become the guiding principle of the reform movement, the practical
implementation of this principle was not made part of many State
policies and regulations. In fact, many States developed regulations
very similar to Federal ICFs/MR standards. Ironically, although these
regulations were put in place to improve services, studies have shown
that in terms of choice, self-determination, and other areas of today\'s
definition of quality of life, services are often superior in settings
that are not subject to the intensive ICFs/MR regulatory structure.

The ICFs/MR regulatory structure is based on a medical model of
providing services with an emphasis on providing \"continuous active
treatment\" so that people\'s \"deficits\" can be fixed - making them
more independent and more \"appropriate.\" The medical model is slowly
giving way to a supports model. In the supports model, the people who
receive services are viewed not so much as patients or clients who need
to be \"fixed,\" but as people with the same needs and desires as other
people, who have talents and abilities, but who need supports to live a
full, rich life. The role of the service provider, therefore, becomes to
help develop a variety of individualized supports to this end. In the
medical model the emphasis is on preparing a person for normal adult
living (i.e., the person must have a certain level of competency and
skill before adult responsibilities and privileges are allowed) whereas
in the supports model the emphasis is on supporting a person in normal
adult living. The medical model is a professional/provider-driven
system, the support model is driven by the choices and preferences of
people with disabilities and their families. In this new approach, the
traditional system of prescriptive rules and regulations, many of which
are very intrusive and reinforce the \"fixing\" notion, seems
meaningless and actually works against quality.

The following are some of the numerous problems that have been
identified with both the process and the consequences of the
regulatory-based approach to provision of care and quality assurance:

-   *The process is ineffective and lacks reliability and validity.*
    Site visits are made infrequently (usually once per year or less)
    and reviews of paperwork, rather than meeting recipients of services
    or touring program sites, have been used for quality assurance.
    Perceived compliance with regulations often is dependent on the
    values and expertise of the reviewer. For instance, if the reviewer
    is a nurse there may be a stronger focus on medication
    administration procedures, whereas if the reviewer is a dietitian
    there may be stronger emphasis on written menus and adherence to
    dietary guidelines.

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-   *The process emphasizes paperwork and compliance becomes an end in
    itself, stifling innovation and creativity and perpetuating
    mediocrity.* For instance, much of the training effort and direct
    support hours in highly regulated facilities are devoted to making
    sure that staff understand and comply with the regulations rather
    than focusing on what the people receiving services want and need.
    There is little motivation for providers to improve services other
    than maintaining the minimal standards necessary to pass inspection.

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-   *The process places control and power in the hands of regulators and
    not people with developmental disabilities and their families.* It
    can be used to maintain and extend the power others have over people
    with developmental disabilities. Historically people with mental
    retardation and other developmental disabilities have not had very
    much power or voice in how they will live their lives. The
    regulatory system perpetuates this situation by making the
    regulations the focus of services. When people receiving services
    ask for something that conflicts with the regulations they are
    usually denied the request.

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-   *The process focuses on concrete and tangible things.* For example,
    the number of times a person leaves a facility to participate in a
    recreational activity, which can trivialize the more important
    quality of life factors, such as the caliber of relationships that a
    person experiences. It standardizes services and doesn\'t recognize
    differences in individual needs by assuming that quality means the
    same thing to everyone.

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-   *The process of monitoring has become an extremely expensive burden
    on already strained service system budgets.* Travel time and costs
    are higher and fewer people are seen. Modern services are located in
    many small places rather than in a few large places and there is a
    separation of vocational and residential services.

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-   *The current system is punitive and encourages even legitimate
    service providers to \"cover-up.\"* Under the current system the
    threat of fines or closure is used as a way to keep service
    providers in compliance with the regulations. Providers who are
    honestly struggling with issues have learned to hide their problems
    from the reviewers in fear of citations and fines.

Looking back, the regulations implemented for many of the Federal and
State funded programs have

resulted in the basic health and safety needs of people with
developmental disabilities being met.

Arguably, quality of life could not have emerged as an important issue
until the majority of people were

safe and free from harm. Now it is time to look beyond---to get to the
heart of quality and how it touches

the lives of the people who receive services. It is time to look for
approaches to identify and respond to the needs of people that
substantially improve the quality of their lives, community membership,
self-

determination, and personal outcomes of community living.

**New Definitions of Quality**

Traditionally, if an organization was found to have all of its processes
in order and to be in compliance

with all of the relevant regulations, it was considered to be a quality
program. Increasingly however,

concepts of quality are extending to include how programs affect the
lives of the people they serve. Some of the dimensions of quality
currently being identified and discussed which relate to a person\'s
satisfaction with services include the following:

-   Quality is based on values, not regulations.

-   Quality is different for different people and should be defined by
    them.

-   Quality services are provided by people who genuinely care and know
    the person well (i.e. long-time direct support workers, family,
    friends).

-   Quality is a continual evolution with no definite end and something
    to which service providers and service systems should have the
    endurance and ability to keep working toward perpetually.

-   Quality is very difficult, if not impossible, to assure or mandate
    through process compliance.

For the people who rely on the regular support of others in order to
work, to take care of their homes, and

to enjoy what life has to offer, there is no doubt that quality in
services is very important. Quality

assurance is the way that the system makes sure that services are the
best they can be. With a change in the definition of what quality means
there needs to be a corresponding change in quality assurance
activities. Some elements of the new view of quality assurance are:

-   Quality is increasingly being measured by the achievement of
    personal outcomes which are important to the individual.

-   Emerging quality assurance programs are beginning to emphasize
    providing the highest possible quality of life. This new way of
    looking at quality considers what the person wants and needs
    holistically and it recognizes that the measures of quality of life
    are the same for people with disabilities as they are for everyone
    else.

-   Emphasis is being placed on providers \"owning\" their own internal
    quality improvement programs rather than having the definition and
    reinforcement of quality being imposed by the outside. Service
    providers are beginning to develop or adapt their own standards,
    monitor their own progress, and develop mechanisms for continuing
    quality improvement.

The possibility of managed care models to oversee developmental
disabilities services brings up new

concerns which are just beginning to be addressed. Cost containment and
accountability are two major

components of managed care models which will influence future quality
assurance. Under a managed care system it is likely that Management
Information Systems will be used. These are large databases that let the
managed care provider use data to estimate or compare characteristics of
service providers as well as consumers. For example, how much supported
employment costs at one service provider versus another. Cost/Benefit
Analysis (i.e. a look at the possible outcome of services in comparison
to the cost of the service), and consumer satisfaction surveys are
likely to be common methods for assuring quality in a cost effective
manner.

Developing and institutionalizing a quality assurance system that
addresses the needs of this new service

structure and these new values will not be easy. Quality assurance is
performed at many levels of government by a range of agencies with
different public health, safety, and programmatic responsibilities. This
complex system has been described as a \"web of interrelated
regulations\" or as an onion, where peeling off one layer only reveals
another, and another, seemingly without end. In addition, there are a
number of conflicts of interest inherent in changing the current system.
For instance, each regulatory agency has a cadre of administrators and
monitors, often unionized, whose jobs

depend on the continuation of the current system. Advocates for people
with developmental disabilities often defend the regulations which they
have relied on to secure needed or desired services at the most basic
level for those they represent. Additional challenges as identified by
Bradley in 1990 include:

-   Designing a quality assurance system that protects the well-being of
    people with mental retardation but that is not intrusive into
    people\'s homes and job sites.

-   Ensuring that people with disabilities are involved in the process
    of setting standards and monitoring programs.

-   Developing a quality assurance system that is capable of assessing a
    constellation of specialized and generic services rather than
    discrete facilities and programs.

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-   Assessing whether or not people are receiving services that are
    truly meeting their needs.

Navigating these hurdles and challenges must be done in the context of
the following tensions:

-   The need to protect people with disabilities while simultaneously
    allowing them to exercise a full range of choices and
    self-determination.

-   Developing consensus on what makes good service practices while
    maintaining flexibility, individualization, and continued
    innovation.

-   Developing a system that can encourage and support the improvement
    of services while convincing those who provide services that
    consumer well-being will be strictly defended.

-   Creating a quality assurance system that changes to meet the needs
    of the time while granting providers some stability and
    predictability.

-   Balancing the need for providers monitoring the quality of their own
    services with the need for an outside disinterested monitoring
    system.

## Redesigning Quality Assurance 

There are a number of questions and issues related to designing quality
assurance systems for this changing service system that need to be
considered. Decisions about how the system will be designed and
implemented must be made. Additionally, it is important to look at some
newly developed alternative quality assurance models (i.e. accreditation
and State-wide systems) to get ideas for recreating or modifying
existing programs. Lastly, considerations for developing and using
internal quality assurance systems should be considered.

Several general considerations should be explored before beginning to
develop any quality assurance

system including the following:

-   Who will design the new system? Policy makers? Public
    administrators? Case managers/service coordinators? Program
    representatives? Consumer advocates? Families and guardians?
    Consumers?

-   Most contemporary quality assurance projects are trying, to varying
    degrees, to secure input from all of these groups.

-   Should basic health, safety, and rights information be treated
    differently from more individually prioritized factors?

-   Should the quality assurance system apply just to direct service
    providers or to other parts of the system as well, e.g., case
    managers/service coordinators, protection and advocacy, funding
    agencies, guardians/conservators?

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-   Should a variety of methods be used (e.g., interview, satisfaction
    surveys, standardized instruments) because services are
    multi-dimensional?

-   Should several people be involved in the evaluation activities? The
    more people that are involved, the more the information collected
    will be used. For example, if providers are involved, they can
    directly use the information to improve their services, and if
    community people are involved they will develop more understanding
    and support for the program.

-   Does the process make sense for the consumer of services? Is the
    individual asked to sit through a

> 2-hour interview in which he describes his desires and frustrations
> only to have the information not used in any relevant way?

Once these global questions are explored, there are more specific
questions to be answered: What is the

purpose of the program? What is to be measured? How should it be
measured? Who should be the

evaluator? Who should be the respondent?

The following are some possible reasons for developing and implementing
effective quality assurance

programs:

-   *To judge the program or to provide accountability.* In this case,
    individual consumer data would be aggregated and the total agency
    picture would be used for licensing or accreditation purposes.

-   *To improve the individual consumer\'s services.* This would require
    separating information that applies to the individual out of the
    total agency evaluation and using it to plan the person\'s services.

-   *To provide feedback for program improvement.* This may involve
    information about strengths and weaknesses or a composite rating
    which could be used by providers to publicize their programs.

-   *To provide feedback for system improvement.* If information is
    combined for the entire system, it could give feedback about the
    system-wide strengths and weaknesses as well as trends.

-   *To provide information about specific programs for consumers and
    other interested stakeholders.*

The following are some things that quality assurance programs could
measure:

-   *Inputs.* Inputs may be such things as the number of staff provided,
    or the number of hours of staff training. Traditional quality
    assurance is heavily concerned with inputs.

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-   *Process.* Traditional quality assurance also monitors compliance
    with regulations that prescribe exactly how a service is to be
    delivered. Some examples are: required daily logging of consumer\'s
    activities and moods or cleaning the kitchen counters with bleach
    solution twice a day.

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-   *Impact.* Impact refers to the effect on the greater society. An
    example might be the effect on the community through supported
    employment in terms of contributing diversity to the work force,
    supplying hard-to-find labor, and providing a stable, long-term
    employees.

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-   *Reactions of participants.* This might refer to their satisfaction
    with the program, staff, home, etc., or what they liked most or
    least about the services.

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-   *Organizational effectiveness.* Quality measurement can also relate
    to the activities of an organization in such areas as having a
    mission, appropriate policies, sufficient human resources, and
    fiscal responsibility.

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-   *Data profiles created by Management Information Systems* (MIS).
    These are computer-based systems intended to provide an ongoing data
    base to improve the quality of organizational or system-wide
    decision making.

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-   *Quality of life.* The concept of quality of life is rapidly
    becoming the assumed desired result of good services. Quality of
    life is difficult to define for others. Yet it is what most outcome
    models of quality assurance try to look at.

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-   *Outcomes.* Outcomes are the basis of most new quality assurance
    programs. \"Outcomes\" is a vague term with multiple meanings. It is
    currently trendy and often misused. An outcome is the \"result,
    consequence, aftermath.\" In the context of services and supports
    for people with developmental disabilities, it has been defined as
    changes in adaptive behavior(s) and role status that are logical
    consequences of the (re)habitation service(s) (Schalock, 1995), or
    the way in which the program influenced the participants and the
    community.

Some key points to keep in mind when considering outcome evaluation are:

-   Measuring outcomes is rooted in values and who selects the outcomes
    to be measured is an important ethical issue. Some choices for who
    selects the relevant outcomes might be the consumer, the
    \"experts\", or law makers.

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-   Outcomes can occur at different levels, e.g., the individual, the
    family, the organization, or the community.

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-   Individual outcomes may refer to quality of life factors (e.g.,
    living where one chooses) or to functional skills (e.g., cooking a
    meal) or valued social roles (e.g., being a member of the Jaycees).

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-   Although outcomes may be ultimately what counts, process should not
    be neglected. It is important for organizations to specify the
    process by which they intend to reach desired outcomes and to
    constantly evaluate its effectiveness.

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-   Focusing on outcomes should be balanced by systematically looking at
    unintended consequences as well.

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-   Measuring outcomes is difficult because outcomes take time to
    accomplish and they take time to measure. In addition, the
    definition of what constitutes a given outcome can vary and change
    over time.

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-   Outcomes are measured by selected indicators or proxies. They must
    be clear, specific, and measure factors that depict the outcome.
    Sometimes indicators are weighted in terms of their importance.

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-   Some strategies for outcome evaluation are (1) to compare the data
    to baseline data for an individual or group, (2) to compare the data
    to a control group, (3) to ask the participant or his or her
    representative to reflect back to determine whether the outcome is
    met, (4) to describe the outcomes in a narrative manner from the
    perspective of the customers and the providers, and (5) to have
    experts or community observers review indicators of outcomes.

Decisions need to be made on how quality should be measured. A major
distinction is made between

gathering information through quantitative and qualitative methods.
Basically, quantitative methods use

numbers, either to count things or to describe amounts of something.
Quantitative methods work well for combining information and making
comparisons which can be useful for obtaining information on the
organization or the system as a whole. On the other hand, qualitative
methods use words to describe things. Qualitative data gives more in
depth understanding of what\'s happening and work well in understanding
how services affect an individual\'s quality of life.

The following are some specific quantitative methods for gathering data:

-   *Standardized instruments.* There are many standardized instruments
    in the developmental disabilities field, many of them measure
    functional skills. The Instrument for Client and Agency Planning is
    an example (ICAP).

-   *Surveys with fixed responses.* Questions with fixed responses give
    specific answer choices for the respondent to choose, often by
    circling or marking an \"X.\" An example would be, \"Do you strongly
    agree, agree, disagree, or strongly disagree?\" Each answer choice
    is given a number value so the average response can be calculated.

The following are some specific qualitative methods for gathering data:

-   *Surveys with open-ended questions.* These questions allow the
    respondent to determine how to answer in their own words. Analysis
    is done by finding common themes. The analysis stage is more time
    consuming than that of surveys with fixed response questions.

-   *Interviewing.* Interviews involve asking questions, either to the
    program participant or some other informant. Interviews can be
    structured by having a list of pre-determined questions or they can
    resemble an informal conversation, with the interviewer looking for
    certain information.

-   *Focus groups.* Focus groups consist of a series of discussions with
    different, but similar, participants on a predetermined topic of
    concern using focused questions. The purpose is to gain
    understanding of various points of view.

-   *Participant observation.* Participant observation involves social
    interaction between the evaluator and the program participant in the
    participant\'s own environment and involves collecting information
    systematically and unobtrusively.

-   *Document review.* This refers to reviewing program or other written
    records to obtain the information that is desired.

The following are some possibilities for who should be asking the
questions or monitoring quality:

-   *External, professional evaluators/monitors.* This is the
    traditional approach. Some advantages are that paid staff are
    available and can perform reviews in a systematic, timely manner.
    They can be trained and gain experience which will contribute to
    consistency. Disadvantages are that this is an expensive system and
    funds are not available to have them spend sufficient time in
    programs to become familiar with them or to get to know the
    consumers. Also, strangers coming into the home and observing,
    reading program records, or asking questions is intrusive and can be
    very disturbing to the people who live there.

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-   *The consumer\'s support network and/or case manager.* An advantage
    of this approach is that the information obtained about the
    consumer\'s life and services can be used to improve them.

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-   *Program staff.* Even in external quality assurance programs, there
    is often a provision for agency staff to do a preliminary
    self-assessment which is later verified by external evaluators.

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-   *Community monitoring teams.* These teams may consist of consumers,
    families, professionals, and interested community people.

The following are some of the possible people who should be telling us
about quality:

-   *The individual who uses the service.* Obviously, having the person
    respond to questions about his or her own services is the ideal
    choice. This brings up a number of challenges, however, when people
    have cognitive and/or communication disabilities. It may take more
    time to get the needed information which is more of a problem with
    external evaluators. It may involve having a support person
    interpret responses which may reduce the accuracy. Sometimes, there
    are some problems with response bias such as a tendency to repeat
    the last choice given (recency) or the tendency to agree with
    whatever is said (acquiescence).

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-   *The service providers*. Often the service providers, particularly
    with residential services, are the people who know the most about
    the individual\'s daily life. Direct service professionals get to
    know an individual\'s preferences and needs very well in the course
    of their daily interaction. The disadvantage of asking service
    providers about matters that reflect on the quality of service given
    is their obvious conflict of interest.

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-   *The individual\'s family.* Families have known the individual the
    longest and are usually the most committed to them. A disadvantage
    of using their perspective to evaluate quality is the tendency of
    all families to stress protection and security for their loved ones
    which may come at the expense of self-determination. In addition
    older people or people who were at one time separated from their
    families may not have close family members to fill this role.

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-   *The case manager/service coordinator.* The case manager is often
    officially charged with monitoring the quality of services and has
    the advantage of seeing the service system as a whole. The flip side
    of this may be a resignation that things can\'t be any better for a
    person given the constraints of the system. Case managers are
    responsible for high numbers of people (case loads) and therefore
    have difficulty in getting to know people well.

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-   *A combination of people*. It is desirable to get as many of the
    above perspectives as possible to be sure that an accurate and
    complete picture is obtained.

**Examples of Alternative Quality**

**Assurance/Enhancement Models**

Some States and agencies have already begun using alternative forms of
quality assurance and

enhancement based on the new definitions of quality. External review
processes are used to satisfy States expectations that quality services
are being provided. Internally agencies are redefining their own ways of
monitoring and improving on the services they provide.

One form of external quality assurance/enhancement is the use of
accreditation where an outside agency

reviews the service provider and accredits the provider for a certain
length of time depending on how well it did. There are two major
accreditation organizations that are active in the developmental
disabilities field, The Council (formerly The Accreditation Council) and
Carf. Both have revised their methodology extensively in the past few
years to focus on individual outcomes.

*The Council on Quality and Leadership in Supports for People with
Disabilities* (formerly The

Accreditation Council). The Council developed the Outcome Based
Performance Measures between 1991 and 1993 through a series of focus
groups with people with disabilities across the country who identified
what they wanted from their service providers. The original methodology
has been met with a great deal of interest and is being used in many
States for demonstration projects or as a basis for development of new
State-wide quality assurance systems. The original 30 outcomes were
identified in ten categories: personal goals, choice, social inclusion,
relationships, rights, dignity and respect, health, environment,
security, and satisfaction. Some examples of specific outcomes are:
people have friends, people are afforded due process if rights are
limited, and people are satisfied with services. In 1998 the Council
released revised outcomes and methodologies. The 1998 outcomes include
24 personal outcomes clustered into seven categories: identity,
autonomy, affiliation, attainment, rights, health and safeguards.

The organization seeking accreditation completes a written
self-assessment which is submitted to the

Council before the official review. The review is done by Council
reviewers, usually in pairs, who

interview and/or observe the focus person, and interview staff, and when
appropriate, family members or

friends. The Council\'s methodology suggests questions and criteria to
determine whether the outcome is

present---from the point of view of the focus person. Whether or not the
outcome is met, the reviewers also make an assessment of whether there
is an organizational process in place that supports the outcome.
Additional Performance Measures for Organizations are assessed in the
areas of assuring personal health, safety and welfare; fiscal
management; human resources management; and planning and evaluation.
Depending on the agency-wide results of the reviews, the organization
may receive a one, two, or three year accreditation. Whether or not
accreditation is granted, a written report which includes commendation
(areas of strength) and recommendations (weak areas) is provided.

*Carf\...The Rehabilitation Accreditation Commission* is an
accreditation organization that has been in business since 1966. It
accredits employment and community services including residential,
vocational and supports to individuals and families. The 1996 standards
and accreditation guidelines were developed following an extensive study
to solicit thinking of a wide range of individuals and organizations
concerned with persons with disabilities, a customer service needs
analysis, input from the field (with an emphasis on listening to the
persons served), and an international field review. Most recent revision
of these standards was published in 1998. The accreditation standards
are divided into three areas:

-   *Organizational quality*. The existence and demonstration of
    organizational policies regarding:

a\. Input from persons served.

b\. Physical accessibility.

c\. Outcome measurement.

d\. Rights, health and safety.

e\. Human resource development.

f\. Leadership.

g\. Legal requirements.

h\. Financial planning and management.

-   *Service quality.* Individual centered planning and service delivery
    and the organization\'s evaluation of consumer satisfaction.

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-   *Service specific standards.* The standards for community support
    services, for example, specify that services should be individually
    tailored, and that the organization should facilitate inclusion,
    relationships, self sufficiency, learning new skills, informed
    choice and decision making, and risk assessment among other things.

Carf reviewers ask organizational representatives to demonstrate their
compliance with their own policies in the above specified areas. They
also review agency documents, make observations, and interview the
persons served, staff members and community members to confirm that
consumers play a lead role in the planning, development, delivery and
evaluation of the services they receive.

**State models.** Most States are in the process of redesigning their
quality assurance systems and many, if

not most, are substituting or including quality of life outcomes as a
focus. There is a decreasing focus on

document review and an increase in observation and interviews,
particularly increased contact with the

individuals who receive the service. Process measures continue to be
assessed but with a greater emphasis on processes that are tied to
specific outcomes. There is a general trend toward a reduction of
prescriptive rules and standards and development of streamlined
licensure and certification procedures. There is recognition of the
importance of involving stakeholders in developing and building
consensus on the new quality assurance systems. There is also an
increased focus on individuals, their satisfaction and choices, as well
as an emerging approach to focusing quality assurance on the individual
rather than on the provider agency. Other emerging trends are increased
decentralization of quality assurance activities, tying quality
assurance reforms to managed care and using cross-disability quality
indicators. Massachusetts, Oklahoma, and New York are among the States
with re-designed quality assurance systems. Following is a brief summary
of each of their programs.

**Massachusetts.** The QUEST (Quality Enhancement Survey Tool) program
has been operating since 1994. It was developed by a group consisting of
State officials, provider agencies, consumers and family

members in order to align licensing and certification procedures with
the Mission Statement of the

Department of Mental Retardation (DMR). QUEST is a single tool that is
applied to all individuals across all settings where services are
provided. The survey consists of two parts. Part I measures quality of
life outcomes in the areas of (a) rights and dignity, (b) individual
control, (c) community membership, (d) relationships, (e) personal
growth and accomplishments, and (f) personal well-being. Part II
measures overall performance of the provider organization including (a)
the organization\'s commitment to ongoing planning and evolutionary
change, (b) how well staff are supported in providing high quality
services, and (c) how well the organization safeguards the rights,
dignity, and personal well-being of the individuals it supports. The
survey is done by a team headed by a DMR staff person and includes
either another DMR staff, other human service professionals or citizen
volunteers. The team does interviews with consumers, support workers,
and others who know the consumer well, and if necessary, they do
observation and record review. The outcome of the survey is a single
score which determines the length of certification (2 years, 1 year, or
\"with conditions\"). The organization is also given feedback regarding
both individual results and organizational performance. In addition to
its use for certification, the data from the QUEST surveys is compiled
for the entire service system and used to provide information about how
the system is meeting its mission, to spotlight high-performing
agencies, and to identify areas where technical assistance or training
is needed.

**Oklahoma.** Oklahoma has a four tier quality assurance system. The
first level provides for basic

safeguards and consists of a State surveyor monitoring the standards
that are specified in the State\'s

contract with the provider. These standards consist of some funding
requirements, health and safety

standards, and include some personal outcomes such as opportunities for
inclusion. The surveyor makes

site visits at least once a year and interviews the individual receiving
services, staff and families and

reviews program documents.

Another level of the system monitors outcomes beyond the expectations of
the contract. This program is

called Oklahoma Advocates Involved in Monitoring (OK AIM) and is
operated by the Tulsa Arc under

contract with the Oklahoma Department of Human Services. Teams of
volunteers composed of

consumers, family members, friends and advocates visit provider agencies
to evaluate services and suggest improvements as well as to gather
information to assist consumers in choosing service models or providers.
The reviews are done for every consumer every one to two years. The
surveyors use a handbook containing 26 items in four categories to be
assessed. The volunteer team reports back to the officials at the area
office who follow up with providers. The recommended changes aren\'t
always required.

Person-centered audits are another quality enhancement activity. In this
program, State employees do a 4-6 week assessment of randomly-chosen
consumers and his or her housemates. They look at the design of the
service and assess whether it meets the person\'s desired outcomes as
well as whether it is the most cost-effective appropriate alternative.
This function is considered a technical assistance activity with reports
being issued to the consumer\'s planning team as well as to the State
regarding larger system issues.

A fourth level of quality assurance is provided under contract by
Oklahoma State University. Researchers do an annual assessment of
consumer quality of life outcomes for the majority of consumers in the
State. The assessment consists of three parts: an interview with the
primary care-giver, a consumer satisfaction interview (with a picture
book format), and a qualitative site assessment. Survey results are
given to provider agencies who use the results to improve service
quality as well as to an Advisory Council for system planning.

## Internal Quality Assurance 

Increasingly service providers are implementing their own internal
quality assurance programs. This is due in part to the popularity of
such concepts as Total Quality Management, Continuous Quality
Improvement, and The Learning Organization that have swept the business
sector. Internal quality assurance also is propelled by the gap between
what service providers feel their mission is and the indicators of
quality that have been monitored by external sources. The following are
some benefits to a provider in implementing internal quality assurance
programs:

-   An internal quality assurance program can help an agency prepare for
    external evaluation.

-   It can help the organization determine if activities and results are
    in line with the organization\'s mission and help to increase the
    quality of life of consumers.

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-   Quality assessment mechanisms can provide feedback for improvement
    and provide early warning signals of potential trouble. This is
    particularly important in the decentralized environments that are
    prevalent since deinstitutionalization. Program improvement can also
    be facilitated by sharing the quality practices that are discovered
    with the rest of the organization.

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-   Quality assurance activities can gather information to support
    structural changes and policy decisions.

-   Another benefit of quality assurance for a provider emerges when
    direct service staff are directly involved in the process. Direct
    involvement increases the likelihood of buying into an agency\'s
    mission and values and consequently implementing the agency
    policies. Staff who are involved in the process are also exposed to
    contemporary trends.

-   Quality assurance can be used to increase visibility of programs and
    to gain recognition and financial support for the agency.

-   Providers using cutting edge quality assurance principles can have
    an impact on the larger service delivery system.

While there are significant benefits for a provider in implementing a
quality assurance program, there are

clearly challenges as well as including the following:

-   The philosophy behind the quality assurance effort must be driven by
    the agency\'s mission and must be in alignment with all of the
    agencies policies and practices.

-   The goal of quality assurance is not as clear as it was in the days
    when quality assurance was designed to assure safety and adequate
    treatment. An agency must decide on the standards to which it wishes
    to hold itself accountable.

-   Paying attention to quality assurance ultimately means struggling
    with such issues as the tension between encouraging consumer choice
    and providing protection from harm and the question of who the
    customer is (i.e. the person receiving services or the people
    funding and regulating services).

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-   Quality assurance usually involves an element of intrusiveness and
    the harm/benefit ratio must be carefully assessed. As homes get
    smaller and more like real homes, finding the appropriate ratio gets
    more challenging.

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-   Quality assurance development may be seen as threatening to
    organization personnel, and there is likely to be organizational
    resistance to unwelcome news. It may provoke turf wars and it may
    instill fear of change as new roles emerge.

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-   It is especially important to have feedback and payback to direct
    service staff. In order to encourage ownership of the system and the
    philosophy behind it, they should be given information about use of
    the quality assurance program and reinforcement for their efforts to
    comply with its expectations.

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-   Providers need to have enhancement mechanisms ready to respond to
    the needs uncovered in the quality assessment. If such mechanisms
    are not in place, distrust and anger will ensue. The quality
    assurance system will be undermined by the idea that this system is
    not helpful either.

-   Effective quality assurance demands strong leadership. One agency
    sums it up well: \"The ultimate responsibility in any agency for
    ensuring the quality of service lies with the executive director.
    The degree to which he or she espouses and lives the principles is
    the degree in which the agency will implement them.\" (Dufresne,
    1990)

It can probably be assumed that in this time of shifting expectations
for the service delivery system, setting up a new quality assurance
system would mean major organizational change. Managers should therefore
approach it with a strong sense of commitment and a knowledge that
letting it subside will be greatly disappointing to stakeholders and
will greatly reduce their credibility in attempting future
organizational changes. Some specific recommendations are:

-   Begin by assessing the organization\'s readiness to change. Is there
    a perceived need for change? Is there a commitment to a vision? Do
    the key stakeholders really believe in the values behind the
    program?

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-   What is the organization\'s capacity for making changes at this
    time? Is there strong leadership that will guide the change? Ask:
    Are we able to commit the amount of time this takes right now? Are
    there lower priority things we can let go of? Can we allocate other
    necessary resources in addition to time---interest, expertise, a
    designated person to see it through, money for training and
    consultation?

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-   Ask if the necessary commitment can be made to carry the program
    through. Keep in mind that lack of follow through leads to a loss of
    credibility.

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-   Once begun, set up systems for follow through both on the individual
    and the organizational level. Make sure the individual
    recommendations are shared and periodically reviewed with the
    support team. Make sure staff and families and other stakeholders
    are informed about the status of the program and what is happening
    because of it.

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-   Set up feedback systems. Share stories throughout the organization
    about successes that have come from the program.

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-   Consider having external reviews periodically to get an objective
    assessment and to learn how external standards compare with the
    agency\'s.

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-   Use the results to set up improvement plans for the facilities and
    the agency as a whole. Keep data and have systems for follow-through
    and review.

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-   Strive for total system alignment. The mission statement, values and
    visions, training system, staff performance appraisals, consumer
    services, etc. should all work together.

Since \"what gets measured, gets done,\" redesigning quality assurance
systems provides an opportunity to

change service delivery to more closely match many new definitions of
quality. Quality assurance

programs use extensive resources (e.g., money, expertise, time of both
the evaluator and respondent), and

the expectations implicit in the new programs raise hopes of higher
quality and more relevant service

delivery. For these reasons, there is an obligation to make maximum use
of the results of these evaluations.

Designing a quality assurance system in line with the new definitions of
quality and with attention to

ensuring that the results are used should go a long way toward making
quality assurance more relevant and the service system more effective.
This new way of looking at quality is exciting for consumers and

service providers alike. There are, however, additional challenges and
issues which will need to be dealt

with on the road to transformation. Some of them are: the difficulties
of organizational and system change, the need to negotiate new roles for
system participants, the tension between responsibility and

overprotection, and, perhaps most of all, the need for great creativity
on the part of all players in the midst of alternative and new funding
mechanisms and constraints.

### Money, Managed Care and Self-Determination

Quality enhancement? How can the quality of services to people with
developmental disabilities be

enhanced without additional money, and in the midst of a possible change
in funding through managed

care? Frankly, when it comes to money, it seems that the more there is,
the more gets spent, and the more is needed. And, more doesn\'t always
mean better. In considering services and supports for people with
developmental disabilities this certainly rings true. As services have
been developed and funded over the years, and as the demand for people
needing services has grown, there is a constant struggle to make ends
meet. Nationally there are still thousands of people on waiting lists
who want services, and yet even existing services seem to be
\"underfunded.\" There never seems to be enough to pay decent staff
wages, obtain needed assistive technology or services, or to help people
participate in the activities they want to be a part of. Yet, services
to people with developmental disabilities are some of the most expensive
available today.

The remainder of this booklet is designed to provide information on how
much money is spent on services to people with developmental
disabilities, where that money comes from, and the types of services it
buys. At a time of Federal Medicaid reform and the possibility of States
using managed care models to fund and manage services, key information
about managed care is reviewed. Additionally, the importance of
integrating and ensuring participant definitions of needed services and
supports is key to any managed care model discussed. Examples of
processes and programs developed by States to ensure consumer-driven
services are identified.

As stated, services to people with developmental disabilities are some
of the most substantially funded

public programs today. So, where does the money go? In Fiscal Year 1996
public spending for services to people with developmental disabilities
totaled 22.8 billion dollars. *Table #1* shows, there has been a slow
but steady growth in the amount of money spent on these services over
the past 20 years. *Table #2* represents total spending for
developmental disabilities services in 1996 by program category. \[In
1996, over half (\$13.9 billion) went toward community services;
residential programs serving 16 or more people expended approximately
one third (\$7.34 billion); and less than 7 % (\$1.6 billion) was spent
on individual and family support services (supported living, personal
assistance, supported employment and family supports).\] *Table #3*
reflects the amount of Federal Medicaid spending for 1996 in long term
care for people with developmental disabilities. Other Medicaid
represents Community Supported Living Arrangements, targeted case
management, Model 50/200 waiver, clinic/rehabilitation services and
personal assistance.

**Table #1**

**Total Developmental Disabilities Spending**

  ------------------------ ----------------------------------------------
  **Fiscal Year**          **Billions of 1996 Dollars**

  1977                     \$8.5

  1978                     \$9.0

  1979                     \$9.6

  1980                     \$10.1

  1981                     \$10.6

  1982                     \$11.0

  1983                     \$11.4

  1984                     \$12.0

  1985                     \$12.6

  1986                     \$13.3

  1987                     \$14.2

  1988                     \$15.1

  1989                     \$16.6

  1990                     \$17.4

  1991                     \$18.3

  1992                     \$19.1

  1993                     \$19.7

  1994                     \$20.8

  1995                     \$22.3

  1996                     \$22.8
  ------------------------ ----------------------------------------------

**Table #2**

#### Total Spending by Program Category in 1996

+-----------------------------------------------+----------------------+
| # Program                                     | **Spending**         |
+-----------------------------------------------+----------------------+
| Community Services                            | 60.9%                |
+-----------------------------------------------+----------------------+
| Congregate/Institutional Facilities           | 32.1%                |
+-----------------------------------------------+----------------------+
| Individual and Family Support                 | 7.0%                 |
+-----------------------------------------------+----------------------+
| **Total Spending**                            | **\$22.8 Billion**   |
+-----------------------------------------------+----------------------+

**Table #3**

**Federal Medicaid Spending for Long Term Care**

**in 1996**

+-----------------------------------------------+----------------------+
| Program                                       | Spending             |
+-----------------------------------------------+----------------------+
| State Institution ICFS/MR                     | 34.9%                |
+-----------------------------------------------+----------------------+
| HCBS Waiver                                   | 29.3%                |
+-----------------------------------------------+----------------------+
| Private ICF/MR (\<16)                         | 15.2%                |
+-----------------------------------------------+----------------------+
| Other Medicaid                                | 10.0%                |
+-----------------------------------------------+----------------------+
| Private ICF/MR (16+)                          | 9.2%                 |
+-----------------------------------------------+----------------------+
| Public ICF/MR (\<16)                          | 1.4%                 |
+-----------------------------------------------+----------------------+
| # Total Spending                              | **\$9.4 Billion**    |
+-----------------------------------------------+----------------------+

Source: Institute on Disability and Human Development, University of
Illinois at Chicago, 1998.

People used a number of different types of services in Fiscal Year 1996.
The following is the number of

people who received various types of services:

-   90,745 received supported employment services;

-   45,172 received supported living;

-   12,582 received personal assistance;

-   280,535 received family supports (e.g. financial subsidy, respite
    care);

-   139,167 received residential service in large congregate settings;

-   55,227 received residential services in settings serving 7-15
    people; and,

-   199,890 received residential services in settings serving 6 or fewer
    people.

These numbers show important trends regarding what types of services
people are receiving with the 22.8 billion dollars that are expended
each year, including:

-   That a significant number of people who receive residential services
    live in settings with more than seven people.

-   That supported employment options are used by only a small portion
    of the total number of people with developmental disabilities.

-   That although relatively little money is spent on family supports &
    personal care attendant services this type of service impacts a
    large number of families and individuals.

Federal Medicaid spending accounted for approximately \$9.4 billion in
Fiscal Year 1996. As Table #3

shows, these Federal Medicaid dollars were used to pay for State
institutions, public and private ICFS/MR services, Home and Community
Based Services waiver programs (HCBS), Community Supported Living
Arrangements (CSLA), targeted case management, model 50/200 Waiver,
clinic/rehabilitation services, personal assistance and other related
services.

Statistics used in this section provided by Braddock, D., Hemp, R.,
Parish, S., & Westrich, J. (1998) The State of the States in
Developmental Disabilities, fifth edition.

### How Federal Medicaid Money is Used to Support 

**People with Developmental Disabilities**

The Home and Community Based waiver (HCBS) program is one of the most
flexible pots of Federal

money coming to the States to provide services to people with mental
retardation and other developmental disabilities. This flexibility has
lead to increased use of waiver money over the last ten years while the
use of other programs, such as the ICFs/MR is on the decline.

Developmental disabilities service systems differ from State to State.
Each has its own history and unique characteristics. Because of the
flexibility of the HCBS program each State has been able to craft its
program(s) to meet particular goals and objectives and there is
considerable variability among them.

Differences include the relative size of State programs, the services
and supports offered and how they are administered.

Even though there are marked differences in developmental disabilities
HCBS waiver programs among the States, there are many common threads.
The vast majority of States employ their programs to underwrite the
costs of community residential programs (group home and foster care) and
training-oriented day programs under the \"habilitation\" service
category. More and more States are offering supported living and
in-home/family supports to serve as alternatives to \"facility-based\"
programs. Nearly all States offer supported employment services, and
most also offer housing modifications, assistive technology/adaptive
aids and respite care through their programs. Some States offer
health-related and therapeutic services through their HCBS waiver
programs to supplement benefits that are available through the State\'s
regular Medicaid program. About one-half of the States pay for case
management services through their HCBS waiver programs; the remainder
also furnish case management or support coordination services to waiver
participants but use other Medicaid options to finance these services.

Nearly all HCBS waiver programs for people with mental retardation and
developmental disabilities have undergone considerable change since they
were first launched. Over the years, the number and range of services
and supports that the \"typical\" State offers through its program has
considerably grown. It is not uncommon today for a State to offer twenty
or more distinct services through their HCBS. Generally, the increase in
the number of services which the States are offering reflects the
growing understanding of the need to offer supports to people in the
community beyond the traditional residential and daytime settings. For
example, the availability of Medicaid dollars through the HCBS waiver
program served a major role in enabling States to develop, implement and
expand supported living programs. States see considerable value in
covering a wide range of services and supports so that plans of care can
be more responsive to the particular needs of individual participants.

The HCBS dollars have some unique features in the way that they can be
used that are not found in all of the Federal Medicaid funding that goes
to States. HCBS funding has relatively few Federal requirements
attached. While the flexibility that States have is by no means
limitless, there is considerable latitude available to the States. In
developmental disabilities, for example, there is room under the waiver
authority to employ person-centered planning methods, assist people to
participate in regular community activities, and to accommodate the
needs of individuals with highly challenging conditions.

Since 1990, there has been a rapid growth in the use of HCBS funds in
services to people with

developmental disabilities. Why has the HCBS program been growing at
such a vigorous pace in recent

years?

-   *Changes in Health Care Financing Administration (HCFA) Policy.*
    There is little doubt that HCFA\'s removal of the limits that had
    been imposed on the size of HCBS waiver programs gave States the
    opportunity to dramatically increase the number of individuals
    participating in such programs. Obviously, most States have seized
    on this opportunity to expand their programs. Moreover, the types of
    services and hence, the potential eligible population also broadened
    as an outgrowth of changes in HCFA policies.

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-   *Changes in Program Emphasis.* Through the early 1990\'s,
    States---for a variety of reasons--- concentrated their use of HCBS
    waiver dollars on individuals residing in more costly community
    group living arrangements or receiving family foster care services.
    In 1992, 70.5 percent of all HCBS waiver participants were served in
    agency-managed group homes or family care arrangements. Only 8.1
    percent of all HCBS waiver participants lived in a home of their
    own; the remaining 21.1 percent resided in the home of a family
    member. By 1996, the proportion of HCBS waiver participants living
    in their own home had climbed by 130 percent and individuals living
    with their families represented 29.9 percent of all participants.
    Concurrently the proportion who resided in agency-managed residences
    or family care homes had dropped to 54.3 percent. The extension of
    HCBS waiver services to more and more individuals who live on their
    own or with their families reflects the shift in emphasis in State
    developmental disabilities systems away from facility-based programs
    to furnishing supports in the person\'s or the family\'s home. It
    also is an important contributing factor to the high nationwide rate
    of growth in program participants. Had States continued to
    concentrate program funding on traditional community residential
    service models, the program\'s overall rate of growth would not have
    been as great as it has been.

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-   *Number of States Offering HCBS Waiver Services.* The entry of
    additional States into the program during the early 1990\'s has had
    a significant effect on program growth; however, this factor has
    played itself out now that all States and the District of Columbia
    are offering HCBS waiver services to people with developmental
    disabilities.

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-   *Policy Changes in Large States.* The entry of New York State into
    the HCBS waiver program in 1991, and major expansions in the
    programs operated by California, Florida and Massachusetts has had a
    substantial effect on national statistics tracking HCBS utilization.
    These four States accounted for 59 percent of the nearly 84,000
    individuals who were added to HCBS waiver programs during the period
    1991-1994. Since 1994, growth in the HCBS waiver programs in these
    States has accounted for 30 percent of the approximately 99,000
    increase in HCBS waiver participants nationwide. In 1990, these four
    States accounted for 17 percent of all HCBS waiver participants
    nationwide; by 1997, their share had grown to 37 percent. If these
    States had not aggressively employed HCBS waiver financing, overall
    program growth would have been far lower.

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-   *Community Placements and ICFs/MR Conversions.* Throughout this
    period, the States have continued to down-size and close large
    public facilities. Frequently they used the HCBS waiver program to
    pay for community services for former State facility residents. In
    some States, privately-operated ICFs/MR have been closed in favor of
    serving residents through the HCBS waiver program; in other cases,
    the facilities have remained and the financing has been shifted from
    ICFS/MR to the HCBS waiver program. As a consequence, some of the
    recent growth in the HCBS waiver program stems from reallocating
    Medicaid dollars out of ICFs/MR into other alternatives.

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-   *State Leveraging of Federal Funds.* In order to receive Federal
    waiver money, States must come up with some money of their own. In
    some cases, States have expanded their programs in order to leverage
    more State general revenue dollars with Federal Medicaid dollars. By
    qualifying more individuals and services for HCBS waiver funding
    (programs and services previously 100% funded by the State), States
    have been able to draw down increased Federal funds to serve more
    individuals and/or sustain existing services. It is difficult to
    tell how much of the increase in HCBS waiver participation
    represents genuine program expansion versus the leveraging of
    existing service dollars.

Federal dollars through the ICFs/MR program have a number of rules and
regulations attached making them less flexible and less appealing in
today\'s climate of individualized supports. That is a significant
reason why most States are decreasing their use of the ICFs/MR program.
The following is some basic information about the use of ICFs/MR
programs to fund long term care for people with mental retardation and
related conditions and how it compares to the use of dollars through the
Home and Community Based Services waiver program.

Because these are expensive, comprehensive services, spending on ICFs/MR
services has continued to

grow, climbing to \$9.7 billion in 1996 even though ICFs/MR utilization
has been declining. While roughly 50 percent more individuals
participated in the HCBS waiver program than resided in ICFs/MR in 1996,
spending on HCBS waiver services was slightly less than one-half the
amount expended on ICFs/MR services. Even though HCBS waiver spending
has grown very rapidly, it remains along way from catching up to the
money spent on ICFs/MR services. However, the rate at which ICFs/MR
spending has been growing has slowed considerably in recent years.

The annual costs of serving an individual in an ICFs/MR have increased
steadily since 1990 from approximately \$51,958 per resident per year to
\$73,572 in 1996. Annual 12-month costs of serving a

person in the HCBS waiver program also grew during this same period;
however, in constant dollar terms average per capita costs were
virtually the same in 1996 as in 1990. Throughout the period, average
HCBS waiver costs per participant was about 40 percent less than the
costs of serving an individual in an ICFs/MR. HCBS waiver costs have
proven to be more stable and considerably lower than ICFs/MR costs. When
HCBS waiver and ICFs/MR spending are combined, since 1990, they
increased in combination by 70.5 percent (from approximately \$8.5
billion in 1990 to \$14.5 billion in 1996).

Total Medicaid spending nationwide for all types of services (such as
health care) more than doubled over the same period, increasing at an
annual compound rate of growth of 14.1 percent. Hence, Medicaid spending
for developmental disabilities long-term services has grown in real
terms since 1990, but at a significantly lower rate than overall
Medicaid expenditures. Based on the results of the 1997 HCBS waiver
survey and assuming that recent ICFs/MR expenditure trends continue, we
estimate 1997 Medicaid expenditures for specialized long-term service
(ICFs/MR and HCBS waiver) for people with developmental disabilities
will reach roughly \$15.5 billion in 1997.

Information provided by Smith, G. & Gettings, R. (1997). Medicaid Home
and Community Based Waiver Services and Supports for People with
Developmental Disabilities: Trends Through 1997.

## Possible Future Directions of Long Term Care Spending 

What directions are States likely to take in employing ICFs/MR and HCBS
programs? There are several

possibilities:

-   *Continued Expansion of the HCBS program.* Most States will continue
    to expand the scope of their HCBS programs, although probably at a
    slower pace than has been the case over the past five years or so.
    In most States, the HCBS waiver program has become the preferred and
    in many cases, nearly the exclusive strategy for accessing Federal
    dollars to finance both current and expanded community DD services.
    With few exceptions, there is virtually no interest among the States
    in encouraging the development of new ICFs/MR facilities. Indeed as
    previously noted, several States are sponsoring or encouraging the
    conversion of existing ICFs/MR facilities. Simply stated, the future
    will see a continuation of HCBS waiver program expansion accompanied
    by declining ICFs/MR utilization.

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-   *Service Emphasis.* Program expansion will continue to be tied to
    the States\' efforts to emphasize in-home/family support services
    and other integrated supports. In recent years, several States have
    taken steps to broaden their waiver service coverage beyond
    traditional 24-hour supervised residences and facility-based day
    programs. Based on discussions with State program managers, several
    States that used to limit their programs to more costly community
    services will be taking similar steps to broaden their programs in
    order to: (a) leverage as many Federal dollars as possible; (b)
    improve the overall cost-effectiveness of their programs; and, (c)
    provide greater flexibility in the services and supports that
    individuals can obtain through the HCBS waiver program. This, too,
    is a continuation of a program trend that began roughly in 1990 and
    has resulted in a steady increase in the service and support options
    that are available to waiver participants.

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-   *Payment Policy.* It is evident that there is mounting concern in
    many States regarding cost-effectiveness of existing MR/DD waiver
    programs. Even though nationwide the per participant costs of HCBS
    waiver services have remained remarkably stable since 1990 (and in
    most States have not increased in real dollar terms in recent
    years), officials in many States are concerned about such costs
    rocketing upward due to increased service utilization or increases
    in the prices paid for services and supports. At the same time,
    controlling spending by imposing tighter limits on utilization of
    certain services or tightly managing provider rates in order to
    contain costs also has real drawbacks, including the possible
    effects on quality, access to and availability of services as well
    as the ability to individualize support plans. Some States (AR, KS,
    MN) have taken steps to develop \"tiered\" payment limits that set
    maximums in terms of the total amount that may be expended on behalf
    of an

individual but permit flexibility in the make-up of the services and
supports that a person might receive within the overall limitation.
Other States are examining the utility of such stratified cost limits,
either within a single HCBS waiver program or by creating multiple
programs which correspond to various eligibility criteria. How widely
and at what pace these approaches will be used is uncertain at this
time.

-   *Managed Care Arrangements.* The interest in reforming the financial
    management of HCBS waiver programs through tiered or stratified
    funding limits also has some States seriously considering shifting
    their programs to a more overt \"managed care\" model. In some
    respects, the HCBS waiver program has always had some features
    similar to managed care programs. In most respects, however, HCBS
    waiver programs for people with developmental disabilities were not
    designed and implemented as a managed care program employing all of
    the principles and strategies typically associated with managed care
    programs.

> *---adapted from Smith, G. & Gettings, R. (1997). Medicaid Home and
> Community-Based Waiver Services and Supports for People with
> Developmental Disabilities: Trends Through 1997. So, What is Managed
> Care?*

**So, What is Managed Care?**

For most people, the phrase \"managed care\" is familiar and is
associated with the way in which many of

them receive their health care. People commonly associate the term,
therefore, with a variety of

\"managed\" care insurance companies that contain costs through limits
placed on service utilization.

However, while managed care strategies contain costs, they also have the
potential to improve the

efficiency and effectiveness of service systems.

Unfortunately, most people do not see the latter side of managed care.
Consumers fear that managed

health care will mean long waiting periods for appointments, lack of
choice of primary provider, and

reduced access to services. Providers fear it will mean delays in
payment, less control over what services

can be provided, and disruption of existing consumer-provider
relationships. The image conjured by

\"managed care\" is of an isolated \"medical case manager\" making
decisions about what health services will be provided based more on
their cost than on the individual needs. As a result, most people,
recipients and providers alike, greet with mistrust the expansion of
managed care beyond acute health care.

In reality, managed care is neither malevolent or compassionate. It is a
collection of administrative

methods aimed at rationalizing decisions regarding the allocation of
scarce resources to a growing pool of potential consumers. Three key
factors motivate the purchasers of managed care (employers and

government): the cost, the quality and the demand (i.e. the number of
potential recipients) for services.

When a decision is made to use managed care strategies, one of these
three elements has usually become

more important than the other two. For instance, a State may be faced
with exploding service costs and

turn to managed care to rein them in; or it may look to managed care to
help it define and improve quality; or it may be seeking to stretch
limited State resources to serve a growing waiting list. Whatever the
predominant goal---reducing costs, improving quality or expanding the
number of people served--- managed care techniques offer a rational and
efficient approach to restructuring the system.

Under any given managed care arrangement, efforts are made to contain
service costs in one or more of the following ways:

-   by changing the price paid for services.

-   by inserting economic incentives for providers to hold down their
    costs.

-   by influencing how services are utilized by the number of available
    providers and the amount of services used.

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-   by better coordinating the services needed. (Smith & Ashbaugh, 1995)

Managed care strategies ultimately alter the flow of money and the
balance of power in a service system, inevitably affecting all
stakeholders in some fundamental way.

There are four major groups of players that interact in managed care
arrangements--- the payer, the managed care intermediaries, the service
providers, and the service recipients---all of whom want to increase
their power in the system and expand their access to the limited
resources. It is important to understand who these players are and the
stake that they have in the outcomes of managed care.

The *payer* in a managed care arrangement is the entity (private or
governmental) that bears the ultimate financial responsibility for the
services that individuals receive. In the public sector, the payer is
the State agency charged with administering programs authorized under
State law. When multiple funding streams are involved, there can be more
than one payer. Because Medicaid is by far the largest funding source
for developmental disabilities services, the State Medicaid agency would
be a key payer in a managed care model for long term care services. With
managed care, payers need to agree on a simple arrangement for managing
resources---a managed care plan.

The *Managed Care Intermediary* is the link between the payer on the one
hand and the service provider

and/or the service recipient on the other. Typically, the managed care
intermediary receives a fixed

payment (called \"capitation\") from the payer, in exchange for the
responsibility (the \"risk\") to provide all needed services to the
specified service recipients in the entire pool. This entity arranges or
provides the services, attempting to manage costs per recipient within
the fixed payment. The intermediary\'s function

may take a variety of forms including: a Managed Care Organization
(MCO), a Managed Service

Organization (MSO), or an Administrative Service Organization (ASO), all
of which have different

responsibilities and risks.

A *Managed Care Organization* (MCO) is responsible for seeing that
services are provided as needed by service recipients, within the
boundaries of the fixed amount of money the MCO received from the payer.
The Managed Service Organization (MSO) has these same financial
responsibilities but it also directly provides services and supports.
The MSO may be an organized network of service providers, or it may be a
single service provider that contracts for supplemental services that it
can not provide itself. The Administrative Service Organization (ASO) is
very different from both the MCO and the MSO. It is only responsible for
administrative tasks (e.g. maintaining data bases, legal services), not
service provision and it does not bear any of the financial risk
associated with providing all needed services for a fixed amount of
money.

*Service providers.* The service providers are the organizations and
individuals who furnish the various

services and supports. These may include formal organizations, both
not-for-profit as well as profit-

making entities. It may also include informal affiliations, such as
volunteer church groups or community

cooperatives, and individuals, paid and unpaid, who provide supports to
one or more service recipients.

*Service recipients.* The service recipients are the people who receive
services.

What are the major components or concepts of managed care? Managed care
offers an array of technical

mechanisms to improve or decrease costs in service systems, but these
techniques can be confusing and

increase complexity. There are ten basic components of managed care
systems many of which are really

not new to the field of developmental disabilities. What is perhaps new
to the field of developmental

disabilities is that managed care integrates all ten of these components
into a coherent plan to contain costs while enhancing quality or
expanding the number of service recipients. Here are ten basic
components or elements of managed care systems.

*Eligible population.* This component basically determines who is in and
who is out. Who will receive

services and who will not?

*Capitation.* Capitation is the process whereby a fixed amount of money
is paid in advance to cover costs

of services needed by the eligible population.

*Risk.* Risk is the financial uncertainty associated with agreeing to
provide all needed services to eligible

service recipients in exchange for a single specified amount (the
capitation).

*Care criteria.* Care criteria are the standards used to determine what
services can be made available to any particular individual, based on
the identified needs of the individual. This could be a list of
allowable services, a \"benefit package,\" or a set of criteria that
must be met before services can be provided.

*The flow of money.* Control over funds is a key to the power in any
service system. In traditional managed care arrangements the payer
contracts with the managed care entity, who in turn contracts with
providers to deliver services. The intermediary and providers have a
genuine interest in delivering quality services, yet as obligatory
requirements are passed down, each entity must keep the one before it
satisfied, with service recipients again occupying the lowest position
in the structure. This dynamic is unaltered even when the provider
network also takes on the intermediary role to function as a Managed
Service Organization (MSO).

*Network management.* The formal arrangements for coordinating a group
of providers under a managed care plan. This role is usually played by
the managed care intermediary and the network consists of a group of
affiliated service providers.

*Care coordination or gatekeeping.* Care coordination or case management
is a system in which a single

professional is responsible for ensuring that a recipient obtains the
full range of services required.

*Utilization review.* Utilization review is a formal process for
ensuring that the services and supports being furnished are necessary,
appropriate, and the least costly available.

*Service substitution.* Service substitution is a process requiring the
use of a lower cost but equally

effective service in place of one of higher cost.

*Quality assurance and improvement.* Quality assurance consists of
procedures to assure an acceptable

level of performance, to protect participants, as well as to foster
improvements in performance over time.

> *---adapted from Smith, G. & Gettings, R. (1997) Medicaid Home and
> Community-Based Waiver Services and Supports for People with
> Developmental Disabilities: Trends Through 1997.*

**Participant-Driven Managed Supports**

**and Managed Care**

What does managed care have to do with people with developmental
disabilities? How can the value and philosophy base of consumer driven
services and participant empowerment be maintained in light of

changes brought about by managed care? Many people within the field of
developmental disabilities have been working to understand the
connections and possibilities in bridging managed care models with

systems reform and participant-driven services and supports. The
National Association of Directors of

Developmental Disabilities Services, Inc. recently produced a
publication entitled, \"Managing Our Own

Support\", which provides information on using the \"tools\" of managed
care to move toward more

consumer-driven participant managed supports. They provide several
reasons why the field of

developmental disabilities should move toward participant driven managed
supports.

#### Participant-Driven Managed Supports 

Reduced to its essence, a participant-driven managed support system is
an arrangement whereby the

participant and/or family decides how limited service funds will be
spent. This approach is consistent with emerging trends in the field,
strengthens self-esteem, facilitates empowerment and can contribute to
cost containment. The following are some reasons that participant-driven
managed supports could be

beneficial.

*Reason #1: Participant-driven approaches are consistent with trends in
the field*. The opportunity to participate fully in community life is
increasingly recognized as a right of all members of society regardless
of ability. People with developmental disabilities have come to expect
that their lives,

like those of others without disabilities, will be lived in the
community and will follow a self-selected

rhythm which may involve work, home and play. They also have come to
expect that they will be

physically and socially integrated and that they will have opportunities
to contribute to their communities. Finally, the extent to which an
individual exercises control over life\'s many choices has become a
critical measure of independence and well-being. Participant-driven
approaches are consistent with these emerging ideals, because this
allows consumers to choose which services and supports are most
important in order to meet their particular needs.

*Reason #2: Participant-driven approaches reflect sound practice.* What
is the best way to help another person? This is a difficult question,
but it is clear that some ways of helping are more effective than
others. Research across a variety of disciplines has repeatedly shown
that to effectively help others the person receiving help needs to be
encouraged to lead the way and to \"take control\" of his or her own
life. Having such control has been positively correlated with an
enhanced quality of life. This approach to helping others involves
teaching the person receiving the help new skills, but it also requires
that help be offered in ways that encourage the individual to recognize
his or her own needs, dreams and aspirations, and to act on them by
crafting and implementing personalized solutions (Brammer, 1993;
Brickman et al., 1983; Dunst, Trivette & LaPointe, 1992; Skinner, 1995).
Participant-driven managed supports embraces the idea of individuals and
their families taking charge and leading the way in determining their
needs for services.

The majority of past and present service practice surrounding assisting
people with developmental

disabilities emphasizes a more narrow focus, tied primarily to skill
building (e.g., eating, dressing, fixing

meals, crossing streets, cleaning house, performing a job) without
providing many choices about what

skills will be worked on. Many people with developmental disabilities
spend much of their day learning a variety of life skills, using well
regarded instructional formats, such as task analysis, chaining, and

reinforcement. These practices are effective and should not be
abandoned, however, building on research related to the broader view of
assisting others, the field is coming to recognize that providing
effective help or support to people with disabilities means more than
skill building. Increasingly sound instructional practices that both
enables and empowers the person receiving support to direct his or her
own life are being developed and used. These new practices are already
showing results.

In one recent study, adults with mental retardation who demonstrated
self-determined behaviors were more effective problem-solvers, were more
assertive and self aware, and had higher expectations regarding their
own efficacy and the outcomes of their actions (Wehmeyer, Kilchner &
Richards, in press). Similarly, Conroy (1997) found improved quality of
life outcomes for individuals participating in New Hampshire\'s \"Self
Determination\" demonstration project where participants exercised great
freedom of choice regarding life goals and the arrangement of needed
supports.

*Reason #3: Participant-Driven Approaches Reflect A Valid Cost
Containment Strategy*. An underlying premise of traditional managed care
strategies holds that: "Managed Care Organizations with network
management responsibilities, free of political obligations, free of
regulatory constraints and equipped with competent management can better
run service networks.\" (Smith & Ashbaugh, 1995) Based on this belief,
some argue that managed care companies can administer developmental
disabilities systems in ways that both contain costs and maintain
\"quality\". Yet this assumption is largely unproved in

human services, and fully untested in developmental disabilities.

In contrast, an alternative assumption, which forms the basis of
participant-driven approaches, holds that

participant-driven managed supports are also a valid strategy for
improving organizational performance.

One of the central tenets of total quality management (Osborne &
Gaebler, 1992) is \"customer first\"

behavior, based on the premise that customers who do not find what they
want, at a price they consider

fair, go elsewhere to make their purchases (assuming there are other
places to go). In this context,

participant-driven models do support the goal of cost containment. Smith
& Ashbaugh (1995) argue that:

> "Service recipients, working on limited budgets, will spend more
> prudently to get the most value for their money, and
> participant-driven arrangements will spawn a market economy in which
> those providers representing the most value will survive."

In applying the ideal characteristics of participant-driven approaches
to existing services and to proposed

State reforms, the following questions are pertinent. They should be
answered affirmatively by key

stakeholders within States and local entities prior to embarking on
reform toward participant-driven

managed supports.

1*. Vision.* Are the values underlying the system reflective of
participants\' beliefs? Is the system seeking to improve the lives of
people with developmental disabilities in terms of community inclusion,

independence, and quality of life?

2\. *Participant self-determination.* Do participants have a real say,
at a systems level, in the design of

disability policy? At an individual level, do participants have real
authority over how funds are spent?

Can they freely choose among services and among providers?

3\. *Flexible array of services.* Are there real choices to be made? Are
there different types of services,

providers and administrative support arrangements available?

4\. *Personal advocates/brokers and business agents.* Is there a voice
for participants within the managed system (e.g. within the quality
assurance mechanism)? Is the system-centered role of gatekeeper balanced
with a participant-centered control point? Are various types of
intermediary organizations available to participants, to assist them
with financial and administrative tasks?

5\. *Community partnerships.* Does the system foster the creation of
community and familial networks

(e.g. supporting families to keep children at home vs. using out-of-home
placements)? Are there incentives for organizations to collaborate in
supporting participants (e.g. partnerships with acute care and long term
care entities, or between day service and residential service
providers)?

6\. *Unified funding.* Are funds for services and supports unconstrained
by categorical limitations? Is the

participant or the participant\'s agency easily able to fund innovative
responses to needs?

7\. *Outcome focus.* Is the bottom line how well participants have
achieved their desired goals? Does

payment hinge on whether the participant is satisfied with the services
and supports received?

8*. Cost containment.* Does the system manage within its budget? Is the
system able to stretch the

available funds to serve people who have been unnerved in the past?

> *Adapted from Agosta, J. & Kimmich, M. (1997) Managing Our Own
> Supports: A Primer on Participant-Driven Managed Supports.*

### Conclusion

As the new millennium approaches it is critical that the developmental
disabilities field continues to

analyze how current services are monitored, funded, how much money is
being spent on these services and more importantly, whether or not the
people receiving services (and those on waiting lists) are getting what
they need and want. This must all happen at a time when the momentum
within the Federal government is toward balanced budgets,
cost-efficiency and Medicaid/Welfare reform. It\'s a time to be
creative, expand possibilities, and create efficiencies while at the
same time staying committed to consumer choice, participant-driven
services and individualized supports. It\'s a time of change, it\'s a
time of efficiency, it\'s an opportunity to seize!

**Resources**

*Carf\...The Rehabilitation Accreditation Commission.* Carf has
publications on its accreditation

methodology and guides for consumer selection of service providers.
Their list of publications can be obtained from them at 4891 East Grant
Road, Tucson, AZ 85712, (520)325-1044 or fax (520) 318-1129.

*Continuous Quality Improvement in Oregon\'s Programs for People with
Developmental Disabilities.* (1992). M. Brodsky and D. Wilson. This book
describes the application of total quality management

approaches to small programs for persons with developmental
disabilities. It follows the quality

philosophy of W. Edwards Deming, and uses a seven-step system for
developing and implementing an

improvement plan. The book also contains a profile of Oregon\'s System
of Continuous Quality

Improvement. Available from Paradigm Systems, P.O. Box 967, Salem, OR
97308-0967,

\(503\) 363-8609.

*Keeping the Promise: Managed Care and People with Disabilities.* This
publication provides information on a successful process that can be
used by all key stakeholders in the field of developmental disabilities
within a State or local system to develop a plan for how managed care
will or will not effect services for people with developmental
disabilities. The American Network of Community Options and Resources
(ANCOR), 4200 Evergreen lane, #315, Annandale, VA 22003. (703) 642-6614.

*Managed Care and People With Developmental Disabilities: A Guidebook.*
This guidebook was

developed to assist States and organizations in understanding the
complexities of managed care and how

changes in funding methodologies could effect services to people with
developmental disabilities. The

National Association of State Directors of Developmental Disabilities
Services, Inc. at 113 Oronco Street, Alexandria, VA 22314. (703)
683-4202; fax (703) 684-1395.

*Managing Our Own Supports: A Primer on Participant-Driven Managed
Supports.* This primer is designed for all people within the
developmental disabilities field. It provides concrete information on
the principles of managed care, who the players are and on how
participant-driven services and long term care can \"fit.\" The National
Association of State Directors of Developmental Disabilities Services,
Inc. at 113 Oronco Street, Alexandria, VA 22314. (703) 683-4202; fax
(703) 684-1395.

*Quality Assurance For Individuals With Developmental Disabilities:
It\'s Everybody\'s Business.* (1990).

V. Bradley, H. Bersani. (Eds). This comprehensive and still relevant
volume contains 22

chapters of various perspectives and issues in the emerging ideas about
quality assurance. Available from Paul H. Brookes Publishing Co., P.O.
Box 10624, Baltimore, MD 21285-0624.

*Quality Improvement In Employment And Other Human Services: Managing
for Quality Through Change.* (1992). J. M. Albin. This book contains
basic information about the continuous quality

improvement movement as well as tools for transforming an organization
from facility-based to

community-based employment services. Available from Paul H. Brookes
Publishing Company,

800-638-3775.

*Quality of Life, Volume I: Conceptualization and Measurement* (1996) &
*Volume II: Application to*

*People with Disabilities.* (1997). R. Schalock (Ed). These books
contain chapters on self-

advocates\' and family members\' perspectives on quality of life,
methodological considerations in

measuring quality of life, application of quality of life concepts in
service delivery, organizational change, public policy and cultural
considerations, and whether the concept of quality of life can make a
difference. Available from American Association on Mental Retardation.
(800) 424-3688.

*The Council on Quality and Leadership in Supports for People with
Disabilities (formerly The*

*Accreditation Council).* The Council has a number of publications on
their accreditation methodology,

most basically Outcome Based Performance Measures. (1993). Other
publications have a technical

assistance orientation. A list of publications can be obtained from them
at 100 West Road, Suite 406,

Towson, MD 21204, (410) 583-0060 or fax (410) 583-0063.

*The Fifth Discipline Fieldbook: Strategies and Tools for Building a
Learning Organization..*(1994).

P. Senge, A. Kleiner, C. Roberts, R.Ross, and B. Smith. This more
practical and readable adaptation of Peter Senge\'s original book gives
brief explanations and practical exercises to facilitate learning and
adopting systems thinking, personal mastery, mental models, shared
vision and team learning. Available from Doubleday Publishing, 1540
Broadway, New York, NY 10036.

*The State of The States in Developmental Disabilities*. fifth edition.
(1998). D. Braddock, R. Hemp, S. Parish & J. Westrich. This book
provides information on trends and issues in developmental disabilities
regarding: expenditures, institutional services, large private
residential services, community services, State spending patterns,
determinants of community spending, and models of State spending. The
American Association on Mental Retardation, 444 N. Capitol Street, NW,
Suite 846, Washington, DC 20001-1512.

*Utilization Focused Evaluation: The New Century Text.* (1997). M. Q.
Patton. This new, greatly expanded third edition of Patton\'s popular
book could serve well as a basic text on program

evaluation. It has a strong focus on designing evaluations. Available
from Sage Publications,

\(805\) 499-0871.

*What Legislators Need to Know About Managed Care.* This brief
publication provides practical

information about managed care models, managed care organizations, how
States have implemented

managed care programs and the role of managed care in national health
care reform. State profiles for

Maine, Oregon, California, New Hampshire, Illinois and Missouri are
provided. To obtain a copy contact the National Conference of State
Legislators, 444 North Capitol Street, N.W., Suite 515, Washington, D.C.
20001.

Check out these WWW sites that contain information on managed care,
funding and quality assurance:

http://www.nasddds.org - National Association of State Directors of
Developmental Disabilities Services, Inc.

http://www.ancor.org - The American Network of Community Options and
Resources.

http://theArc.org/welcome.html - Arc National

http://www.hsri.org - Human Services Research Institute

**References**

Agosta, J., & Kimmich, M. (1997). Managing Our Own Supports: A Primer on
Participant-Driven

Managed Supports. Alexandria, VA: The Center for Managed Long Term
Supports for People with

Disabilities.

Bradley, V.J. (1990a). \"Conceptual issues in quality assurance\". In
V.J. Bradley & H.A. Bersani (Eds.),

Quality assurance for individuals with developmental disabilities: It\'s
everybody\'s business. (137-146).

Baltimore, MD: Paul H. Brookes Publishing Co.

Braddock, D, Hemp, R., Parish, S., & Westrich, J. (1998). Fifth Edition.
The State of the States in Developmental Disabilities. Washington, D.C.:
American Association on Mental Retardation.

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

Brickman, P., Kidder, L., Coates, D., Rabinowitz, V., Cohn, E. & Karuza,
J. (1983). \"The dilemmas of

helping: Making aid fair and effective.\" In Fischer, J., Nadler, A., &
DePaulo, B. (Eds.), New Directions in Helping, 1, 18-51. New York, NY:
Academic Press.

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

Dufresne, D.F. (1990). \"The role of service providers in quality
assurance.\" In V.J. Bradley & H.A.

Bersani (Eds.), Quality assurance for individuals with developmental
disabilities: It\'s everybody\'s

business. (137-146). Baltimore, MD: Paul H. Brookes Publishing Co.

Dunst, C., Trivette, C. & LaPointe, N. (1992). \"Toward clarification of
the meaning and key elements of

empowerment.\" Family Science Review, 5, 111-130.

Osborne, D. & Gaebler, T. (1992). Reinventing Government: How the
Entrepreneurial Spirit is

transforming the Public Sector - From Schoolhouse to Statehouse, City
Hall to the Pentagon. Reading,

MA: Addison-Wesley Publishing Company, Inc.

Schalock, R.L. (1995). Outcome-Based Evaluation. New York, NY: Plenum
Press.

Skinner, E. (1995). Perceived Control, Motivation, and Coping. Thousand
Oaks, CA: Sage Publications.

Smith, G., & Ashbaugh, J. (1995). Managed Care and People With
Developmental Disabilities: A

Guidebook. Alexandria, VA: National Association of State Directors of
Developmental Disabilities

Services, Inc.

Smith, G., & Gettings, R. (1997). Medicaid Home and Community-Based
Waiver Services and Supports

for People with Developmental Disabilities: Trends Through 1997.
Alexandria, VA: National Association of State Directors of Developmental
Disabilities Services, Inc.

Wehmeyer, M., Kilchner, K., & Richards, S. (1996). \"Essential
characteristics of self-determined behavior of individuals with mental
retardation. American Journal on Mental Retardation, 100(6), 632-642.

**Glossary**

**Advocate:** A person who speaks up and is active in working toward
equal rights.

**Arc National:** A national advocacy group for people with mental
retardation. There are also many State

and local Arc chapters throughout the United States.

**ASO:** An Administrative Service Organization, a non-risk bearing
entity that is hired to perform fiscal,

legal, & administrative tasks.

**Capitation:** A method of service financing where the payer pays a
fixed amount of money per person to a managing intermediary to deliver a
set of services, whether or not the person uses the services.

**Care criteria:** List of allowable services, or standards used to
determine what services can be provided.

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

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

**Case rate:** The dollar amount that the payer pays per \"user\" to the
managing entity. Case rates are keyed to people who actually receive/use
services. Capitation rates are keyed to an entire services group.

**Cash and counseling:** Describes recent innovative service
arrangements for elderly Americans, where

cash is paid directly to the individual needing assistance and the
individual receives counseling from a paid professional to: set benefit
levels, hire and fire, manage, assist the individual to find resources
and monitor quality.

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

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

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

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

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

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

**Family support:** Describes service programs for families who provide
support at home for children, and

sometimes adults, with developmental disabilities. Within a family
\"centered\" or \"driven\" context, the

programs make use of structured services, natural supports, and often
cash assistance to: (a) make it

possible for families to keep their family member at home, (b) assure
that the person with disabilities

receives needed services at home, (c) enhance the capacity of families
to provide supports at home, and (d) realize some cost savings related
to promoting care at home over out-of-home options.

**Fee-For-Service:** Reimbursement to a provider for the provision of
services on a service-by-service basis.

**Gatekeeping or primary care case management:** A single practitioner
is responsible for determining the quality and mix of services a
recipient needs and receives.

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

**Group home:** A typical home in the community which has one or more
people with disabilities living in

it and receiving services. These homes can range in size from 2 people
to 15 people and can be publicly or privately owned and operated.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

**Managed care intermediary:** The organization which links the payer
and the service providers or

recipients.

**Managed Care Organization (MCO):** The risk-bearing entity which
receives a fixed payment to assure that a set of recipients get all the
services they need as specified in the managed care plan; it does not
directly provide any services.

**Managed Service Organization (MSO):** Like an MCO except that it is a
network of service provider

organizations, and does directly provide services.

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

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

**Network:** A group of service providers assembled by an MCO or who
come together independently to

increase their competitiveness and to assure a clientele. The providers
share responsibility for the

network\'s smooth performance. Often service recipients are limited to
using providers in the network, or

have to pay additional costs to use an out-of-network provider.

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

**Participant:** People who are direct or indirect recipients of
developmental disabilities services. In

participant-driven service systems these individuals may play a strong
role in directing policies and

practices related to the delivery of services.

**Participant-driven managed supports:** A variety of strategies for
administering systems to increase their effectiveness and efficiency,
while maintaining a commitment to community integration and self-

determination for people with developmental disabilities.

**Performance indicators:** Specifics, including service results, to be
measured to determine service quality.

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

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

themselves if they did not have a disability.

**Purchasing Alliance:** A formal pact or union of service recipients
where they act cooperatively to

purchase or acquire needed services or supports from potential
providers.

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

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

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

developed for people receiving services.

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

**Risk:** Managed care entities assume responsibility for services and
supports in exchange for receiving a

fixed payment (capitation). If costs exceed this sum, the intermediary
is \"at risk\" for the excess costs and

covers the loss. If costs are less than the capitation, the intermediary
earns a profit or retains revenue. In

essence, it is the financial uncertainty associated with agreeing to
provide all needed services for fixed

payment.

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

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

**Self-determination:** To act as the principal causal instrument in
one\'s life and to make choices and

decisions regarding one\'s chosen lifestyle independent of undue
influence or interference from others.

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

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

staff.

**Service substitution:** A process requiring the use of a lower cost
but equally effective service in place of a higher cost one.

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

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

**Utilization review:** Evaluation by an outside party of the
appropriateness, necessity, and/or efficiency of a given service for an
eligible recipient.

## Common Acronyms

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

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

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

Developmental Disabilities

**ADA** - Americans with Disabilities Act

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

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

**ARC** - Association for Retarded Citizens

**ASO** - Administrative Service Organization

**BIA** - Bureau of Indian Affairs

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

**CEC** - Council for Exceptional Children

**COBRA** - Consolidated Omnibus Budget Reconciliation Act

**COLA** - Cost of Living Allowances

**CP** - Cerebral Palsy

**CSLA** -- Community Supported Living Arrangement

**DAC** - Developmental Achievement Center

**DD** - Developmental Disabilities

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

**DHS**- Department of Human Services

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

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

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

**ECFE** - Early Childhood Family Education

**ED** - Emotionally Disturbed

**EEOC** - Equal Employment Opportunity Commission

**ELP** - Essential Lifestyle Plan

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

**EPS** - Early and Periodic Screening

**FAPE** - Free Appropriate Public Education

**FAS** -- Fetal Alcohol Syndrome

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

**FY** - Fiscal/Budget Year

**GAO** - General Accounting Office

**HCBS** - Home and Community Based Services

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

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

**HMO** - Health Maintenance Organization

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

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

**IDEA**- Individuals with Disabilities Education Act

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

**IQ**- Intelligence Quotient

**LEA** - Local Education Agency

**LRE** - Least Restrictive Environment

**LTC** - Long Term Care

MA - Medical Assistance

**MH** - Mental Health or Mentally Handicapped

**MI** - Mental Illness

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

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

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

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

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

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

**OT** - Occupational Therapist

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

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

**PCA** - Personal Care Attendant

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

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

**PCP**- Person-Centered Planning

**PFP** - Personal Futures Planning

**PKU** - Phenylketonuria

**PL** - Public Law

**PT** - Physical Therapist

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

**QMRP** - Qualified Mental Retardation Professional

**RFP** - Request for Proposal

**RRTC** - Rehabilitation Research and Training Center

**RSA** - Rehabilitation Services Administration

**SABE**- Self-Advocates Being Empowered

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

**SILS** - Semi-Independent Living Services

**SLA** - Supported Living Arrangements

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

**SNF** - Skilled Nursing Facility

**SSA** - Social Security Administration

**SSDI** - Social Security Disability Insurance

**SSI** - Supplemental Security Income

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

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

**TDD** - Telecommunications Devices for the Deaf

**VR** - Vocational Rehabilitation

**WAC** - Work Activity Center

PCMR CITIZEN AND EX-OFFICIO MEMBERS

Valerie J. Bradley

Chair, President's Committee on Mental Retardation

Washington, D.C.

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

**PCMR STAFF**

**Administration for Children and Families**

**President's Committee on Mental Retardation**

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

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

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

**Phone: 202-619-0634**

**FAX: 202-205-9519**

**Gary H. Blumenthal**

Executive Director

**John L. Pride**

Deputy Executive Director

**Laverdia T. Roach**

Special Assistant to the Executive Director

**Yolande Bestgen**

Director of Special Projects

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

Research Director

**Thelma B. Lucas**

Mental Retardation Program Specialist

**Joan Williams**

Special Projects Specialist

**Bena Smith**

Program Analyst

**Sheila Whittaker**

Budget Officer

**Peggy Butler**

Secretary to the Executive Director

**Angie Green**

Secretary to the Deputy Executive Director

**Terry Lion**

Clerk-Typist

**Dina Bergman**

Clerk-Typist