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Statement of
Sue Swenson

Administration on Developmental Disabilities
Administration on Children and Families
US Department of Health and Human Services

Before the
Committee on Appropriations
United States Senate
Field Hearing on the Health Status of
People with Mental Retardation

Anchorage, Alaska
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.

The Administration 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:

A Governor-appointed 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.

A Protection 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.

Projects of 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 they existed.

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 Olympics.

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 cognitive disabilities.

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 explanation.

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 children.

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 face.

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:

Worked with 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.

Funded Special 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 disabilities.

Developed 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.

Developed adaptations for exercise equipment to ensure that it is accessible to people with a wide range of disabilities.

Developed curricula to help people with cognitive and developmental disabilities, their families and their caregiving staff navigate managed care systems, and distributed the curriculum nationally.

Trained hundreds of medical and related health professionals to understand the needs of people with cognitive and developmental disabilities. Much more is possible.

Provided legal 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.

Worked with 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.

Worked with 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 abuse.

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 Disabilities.

For example:

$ 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.

The Arizona 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