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Administration on Developmental Disabilities
Administration on Children and Families
US Department of Health and Human Services
Committee on Appropriations
United States Senate
Field Hearing on the Health Status of
People with Mental Retardation
March 5, 2001
Chairman Stevens, Members of the Committee:
Thank you for the opportunity to testify today in the beautiful
State of Alaska about the health status of people with mental
retardation. My name is Sue Swenson and I am the Commissioner
of the Administration on Developmental Disabilities (ADD)
in the Administration for Children and Families in the Department
of Health and Human Services. I am also the mother of three
sons, one of whom has multiple disabilities, including cognitive
disabilities (mental retardation). I will be speaking today
from my experience as Commissioner, but as you know, no
mother ever ceases being a mother. Most of what I am addressing
is very close to my heart.
on Developmental Disabilities
ADD is a nationwide system of State-based programs designed
to help people with developmental disabilities such as mental
retardation, live productive, independent, decent, ordinary
lives, living in the community and integrated into our American
way of life. Local programs funded by ADD are present in
all 50 States, the District of Columbia, and the territories
of the United States.
The programs are authorized by the Developmental Disabilities
Assistance and Bill of Rights Act (The DD Act). The Act
was successfully reauthorized in the 106th Congress,
and signed by President Clinton on October 30, 2000. The
reauthorization was genuinely bi-partisan in both Houses,
and reflected a strong partnership between the Administration
and the Congress. The Act authorizes the following activities:
Council on Developmental Disabilities (DD Council) in every
State and territory. The DD Council includes people with
disabilities and their family members, with a special focus
on including people who have severe developmental disabilities
and their families. It also includes the chief State agencies
that are responsible to serve people with developmental
disabilities. The Council must track the needs of people
with developmental disabilities in a State, plan for service
improvements, and make grants and administer programs to
test and demonstrate new ideas and service models. The Council
is responsible for informing State leaders, including legislators,
about the needs of people with developmental disabilities
in the State.
and Advocacy Agency (P&A) in every State and territory.
The P&A offers individual advocacy and legal services
to Americans who have severe disabilities and would otherwise
be unrepresented. The P&A is responsible for ensuring
that individuals with developmental disabilities may be
safe and free from harm. It seeks to improve conditions
in congregate settings that are unsafe or abusive, and when
improvements are not possible, it seeks to close these facilities
and move residents to settings that are safer.
At least one
University Center for Excellence in Developmental Disabilities
Research, Training and Service is in every State and most
territories. Previously known as University Affiliated Programs
(UAPs), University Centers for Excellence (UCE) are housed
in a university and mandated to work in and with the communities
they serve. The goal of the nationwide network is to bring
validated, best-practice disability initiatives into community
practice in each State. UCEs translate the best of what
science has to offer through interdisciplinary research,
training activities and service demonstration efforts. UCEs
train professionals for leadership positions and direct
care workers for community services; work to ensure that
systems are designed so that people with developmental disabilities
have access to the services and supports they need; conduct
research and validate emerging state-of-the-art practices;
provide technical assistance to agencies and the community;
and disseminate information to individuals with disabilities,
families, public and private agencies, and policymakers.
National Significance, a program that addresses nationally
significant and emergent issues that affect people with
developmental disabilities and mental retardation. This
program has historically identified emerging issues years
before other larger grant programs fund them. Recent projects
have focused on finding ways to meet the health care needs
of people with mental retardation and developmental disabilities,
as well as on housing, employment, and self-advocacy leadership
development and self-determination initiatives. Also, Family
Support projects are now operating in 40 States and territories.
With the reauthorization
of the DD Act of 2000, two new titles were authorized. Title
II, Family Support provides for a program of grants to develop
and implement a statewide system of family support services
for families of children with disabilities. Family support
is a small and fast-growing part of every State=s
human services budget. It is a cost-effective family-centered
service concept that is based on the principle that children
should grow up in their own families, while recognizing
that families of children with disabilities may need a little
help to be able to raise their children at home, and that
they are the experts on what that help should be. The other
new authority, Title III, is a program for Direct Support
Workers Who Assist Individuals with Developmental Disabilities.
The program is to develop technology-savvy distance learning-based
training programs for direct support workers, and establish
in every State scholarships for people working in direct
support who are earning college degrees.
Progress In The General Status of
Americans With Mental Retardation
People with cognitive disabilities (mental retardation)
are leading the way to a time of rapid change in how they
are treated by society. Only 40 years ago, most Americans
who had the label grew up in very restricted circumstances.
People often lived in institutions where the more able cared
for the less able, with no pay, and some people lived their
lives with no access to their families. To add to the indignity,
when these people died, they were buried on the grounds
of the institution in unmarked graves or in graves marked
only by a number. Families who had children like my son
often had no choice other than to institutionalize their
child. Families were regularly counseled to "put him away
and forget you ever had him." The secrecy surrounding such
a decision was often severe, and parents reported to their
neighbors that their child had died. Americans who believe
that there has never been a person with mental retardation
in their family may not have the facts. Like the Rain Man,
many people grew up isolated from their families to the
extent that even their brothers and sisters didn't know
It is sometimes thought that these institutions were "hospitals"
where people received excellent health care. Many families
institutionalized their sons and daughters hoping this was
the case. Although some institutions may have reached this
ideal, physicians who had lost their licenses to practice
medicine on the "outside" administered many. Most people
with mental retardation had life expectancies decades shorter
than their peers without disabilities. It may be surmised
that they received less medical care than their peers did.
Now, people with mental retardation are almost always able
to grow up in their families and go to school with other
children. Special education and Medicaid have made it possible
for people who even have more severe forms of mental retardation
- such as my son - to grow up and live where they are loved.
People with mental retardation are becoming more aware
of each other, more connected to their regular community
and to each other. They are forming "self-advocacy" organizations
to help other people with disabilities who may not have
families, move out of institutions and to help younger people
with cognitive disabilities grow up to be proud of who they
are. Many of the self-advocates are people who learned self-esteem
and organizational skills through participation in Special
In my testimony I will use the term "cognitive disability"
to mean what we usually mean by mental retardation - that
is, a cognitive disability that occurs during a person's
developmental years, before age 18. (Please note that cognitive
disabilities may occur later in life as a result of head
injuries or problems such as Alzheimer's disease, so not
all cognitive disability is the same thing as what is now
known as mental retardation).
The Administration on Developmental Disabilities (ADD)
is different from the major initiatives undertaken by the
Federal government around disability. ADD does not do basic
research into the biological causes of disability or into
potential cures, though we are quite involved in understanding
the social causes and behaviors that can increase a person's
chances of experiencing disability.
We are focused on finding ways to help people who already
have disabilities live with those disabilities productively
and independently, in the communities where they would otherwise
live to the greatest extent possible. We are focused on
listening and responding to people who have cognitive and
developmental disabilities and their families in their own
terms, so that improvements we seek to make are perceived
as improvements by people who need them.
Developmental disabilities are not the same as cognitive
disabilities (or mental retardation). The legislative definition
of developmental disability (DD) includes only those people
whose cognitive disability or other disability is severe
enough to require ongoing coordinated services and supports.
There are probably 3 to 4 million Americans with a developmental
disability and another 3 million who have milder forms of
It is not necessarily easier to live with milder forms
of cognitive disability. For example, no one ever mistakes
my son for a non-disabled person, while many people with
milder cognitive disabilities must choose whether to tell
others - such as doctors or employers - about their disability.
In addition, many persons with milder forms of cognitive
disability may not even know that their cognitive functioning
would classify them as such. Thus, many of the accommodations
available to Americans with visible or obvious disabilities
are not readily available to persons with mild mental retardation.
Even though the definitions of cognitive and developmental
disabilities are different, the needs of people who have
them can often be quite similar. Part of my job is to listen
to the voices of people with cognitive and developmental
disabilities and their parents. Let me share with you what
they say about improvements they would like to see:
I have met
countless mothers of children with a full range of disabilities
who feel they should be offered help when they reach out
for counseling in their churches or from a mental health
professional. They tell me they are frequently told there
is no hope of feeling better.
I have met
people with cognitive disabilities who want to manage their
own health care but they don't understand what a doctor
says and they are too sad - or angry - to ask for a clearer
I have met
people who have Fetal Alcohol Syndrome (FAS) and all of
its attendant problems with impulsivity who tell me they
wish substance abuse counselors understood their special
problems. One lovely young women told me that she thought
the fact that no alcoholism counselor talked to her about
FAS meant that she was doomed by her mother's drinking to
drink herself. She cried when she told me she still wanted
I have met
women who have been raped who want to know how to be sure
it never happens again - and women who have no hope that
they will ever be able to protect themselves.
I have met
people whose day consists of watching television - and they
can't see the screen because they have never had a vision
exam. Better health care for them would start with knowing
that there is a world beyond five feet in front of their
I have met
people with cognitive disabilities who have children, and
who do not understand instructions the pediatrician or school
nurse gives them.
I have met
many parents of children with cognitive and developmental
disabilities who trade the names and numbers of physicians
and dentists who will see them - or who take Medicaid -
as if they were the most important information imaginable.
I have heard people say over and over again, everything
changes when you find a dentist.
These examples are common problems in every State. The
Administration on Developmental Disabilities is making a
difference. For example, ADD projects have:
Special Olympics International (SO) Healthy Athletes Program
to identify and train optometrists to work with patients
with cognitive disabilities - and then create a statewide
database of these caring, trained professionals so that
people can find someone to examine their eyes.
Olympics to collect and analyze dental data from the Healthy
Athletes Program, so that we might have a clearer picture
of the need for dental care among people with have cognitive
model wellness programs to understand what it will take
to engage people with cognitive and developmental disabilities
in being responsible for their health and wellness.
adaptations for exercise equipment to ensure that it is
accessible to people with a wide range of disabilities.
curricula to help people with cognitive and developmental
disabilities, their families and their caregiving staff
navigate managed care systems, and distributed the curriculum
of medical and related health professionals to understand
the needs of people with cognitive and developmental disabilities.
Much more is possible.
support to tens of thousands of people with cognitive and
developmental disabilities who did not understand or receive
the Medicaid and Medicare benefits that they need to survive
and be healthy.
sexual violence programs to help them provide counseling
to women who have cognitive disabilities - both after they
are victims and before, to help them avoid becoming victims.
substance abuse programs to help them become accessible
and effective so that people with cognitive and developmental
disabilities can be successfully treated for drug and alcohol
The above examples give some idea of the breadth of ADD's
efforts. Of particular note in the health arena is the work
of our University Centers for Excellence in Developmental
$ The Alaska
Center provides distance delivery of intensive home-based
early intervention for preschoolers with autism; operates
a computerized clearinghouse for mental health workers in
the DD field; and shares a lead role in a major statewide
Fetal Alcohol Syndrome (FAS) project.
Center examines the incidence of autism and other developmental
disabilities for CDC. Ongoing population-based review for
FAS is also performed for CDC. Both projects are collaborations
between the Arizona UCE at the University of Arizona (UA)
and the Section of Medical and Molecular Genetics, Department
of Pediatrics, UA. Partners in these projects include the
Arizona Department of Health Services, the State Division
of DD, and many other state agencies and consumer organizations.
$ The New Jersey
Center with funding from the New Jersey Technology Assistive
Resource Program of NJ Protection & Advocacy, Inc. and
The Boggs Center-UAP will train future family physicians,
special child health coordinators, and others about assistive
technology that supports communication and independence.
The Oregon Center
has a Project Disabled and Healthy that promotes healthy
lifestyle opportunities for persons with mental retardation.
Through workshop training and a buddy system to support
implementation, small groups of adult with developmental
disabilities in urban and rural communities in Oregon are
provided opportunities to learn and practice healthier lifestyles.
Areas of change include nutrition, physical activity, alcohol
and tobacco use, and stress management. With funding from
ADD=s PNS health
care providers are informed about how to support healthier
lifestyles in persons with disabilities who they serve.
The above profiles show how different the Centers are from
each other, and how their work complements work of other
Centers. The Centers receive administrative care funds from
ADD and then receive grants and contracts from State and
other Federal funding sources. Each Center responds to the
strengths of its host University as well as to the needs
of people with developmental and cognitive disabilities
in the home State. Each Center must focus on ensuring interdisciplinary
training is available to professionals working or being
trained in the State.
The 2000 reauthorization of the Developmental Disabilities
Act links these efforts together in a nationwide network
for the first time. This model is expected to create new
knowledge by helping us better manage what we already know.
In my professional judgment, the new national network and
knowledge management system will bring more change than
we have ever seen in the lives of people with developmental
and cognitive disabilities. It is our stated goal to ensure
that Americans who have developmental and cognitive disabilities
are as healthy as their non-disabled peers.
ADD is fundamentally interested in improving the data systems
to help our nation understand the health needs of these
individuals. We also see that people with more involved
disabilities rely on coordinated and integrated service
from many different systems. Data from all of these systems
should be integrated. We can then begin to understand that
a person who has cognitive disabilities and is unable to
drive a car may not be able to get from his or her home
or job to a health care professional using public transportation.
In this case, a transportation problem is expressed as a
health care problem.
Better integrated data systems would also allow us to explore
the relationship between the needs of people who grow up
with cognitive disabilities and the needs of people who
develop cognitive disabilities as a natural part of their
aging process or as an expression of Alzheimer's disease.
There is much evidence that our society's efforts to include
people with disabilities have collateral benefits for many
other Americans as well. We know that curb cuts meant to
make our neighborhoods and cities accessible to people who
use wheelchairs are useful to people pushing baby strollers,
as well as to joggers and delivery people. We should expect
that improvements in the training of medical and related
health professionals will allow them to treat aging Americans
experiencing new cognitive limitations as well as people
who grew up with cognitive disabilities. In turn, we will
all benefit from a more informed health care system.
Last Updated: January 22, 2003