President's Committee on Mental Retardation Quarterly meeting:

January 27-28, 2003

U. S. Department of Health and Human Services
6th Floor Auditorium, East
Aerospace Center Building
901 D Street, SW
Washington, DC 20447

Monday, January 27, 2003 Minutes
Tuesday, January 28, 2003 Minutes

Attendees

Monday, January 27, 2003
The President’s Committee on Mental Retardation (PCMR) convened Monday,
January 27 - 28, 2003, in Washington, DC.

Opening Remarks

Chairperson Madeleine C. Will thanked everyone for attending the meeting. She recognized Dr. W. Roy Grizzard, U.S. Department of Labor, Office of Disability and Employment Policy, and his Special Assistant, Nancy Skaggs. Steven J. Tingus, Commissioner of NIDRR (National Institutes for Disability Rehabilitation Research), Milton Aponte, a member of The National Council on Disabilities and liaison to PCMR, and PCMR intern, Jennifer Roden.

Ms. Will introduced new Committee appointees, Zoraida F. Fonalledas and Michael J. Rogers.

Ms. Fonalledas, from Puerto Rico, is a lawyer and mother of four children, including a daughter with a mental disability. She stated that she would do everything she can to improve situations for people with mental retardation.

Michael J. Rogers, from Washington State, works for GSH and GDD for Developmental Disabilities. He is co-chair of Self-Advocates Becoming Empowered (S.A.B.E).

Ms. Will introduced Wade F. Horn, Ph.D., Assistant Secretary of the Administration for Children and Families (ACF). ACF programs include temporary assistance to needy families, foster care, adoption assistance, family preservation and support, Headstart Childcare, child support enforcement, runaway and homeless youth, low-income home energy assistance, community services, refugee resettlement, mental retardation and developmental disabilities and, lastly, community services.

Dr. Horn has directed that every ACF office and program try to integrate persons with disabilities into all of its programs. He asked Pat Morrissey, Commissioner, Administration on Developmental Disabilities, to head that charge. Dr. Horn asked that discretionary funds be targeted towards ensuring the integration of a perspective on how to work people with disabilities into each of those program offices.

ACF is working on a new initiative called “TANF 360,” which is intended to do a better job of working with welfare reform advocates and welfare-to-work programs. This initiative will ensure that the needs of persons who are on the welfare roles are met and will address the needs of persons with disabilities to move them from welfare to work.

Dr. Horn offered to answer questions from PCMR members.

The Assistant Secretary provided a summary of ACF programs and described each. Most non-healthcare related programs are in ACF. The human service programs were designed to support vulnerable children and families, and to support community development. ACF handles the Human Service side of the social service safety net; for example, Headstart and child welfare (including foster care and adoption assistance), childcare and youth programs, and child support enforcement and welfare (the temporary assistance for needy families program). There are other programs under the vulnerable population category, such as Administration for Native Americans, the Office of Refugee Resettlement, and Victims of Sexual Trafficking. ACF oversees about $46 billion in human services that are non-health care related. It is difficult to get agencies and various operating divisions to coordinate with each other, but it is very important, particularly in issues related to persons with developmental disabilities and mental retardation.

Dr. Horn introduced Claude Allen, Deputy Secretary of the U.S. Department of Health and Human Services.

Deputy Secretary Claude Allen greeted Committee members and talked about some of the priorities of the Department and how they relate to the President’s Committee on Mental Retardation. He noted that President George W. Bush is focusing on how governmental programs and policies have been beneficial, or in this case and in most cases, had adverse impacts on individuals living with disabilities or on their family members.

He discussed “The New Freedom Initiative,” (NFI) which focuses on what HHS is doing - and across government – looking at programs, policies, and practices to determine where there are barriers that prevent men, women, and children living with disabilities from fully participating in all of American society. HHS hosted that activity and reviewed all the Departments inventories, looking at more than 400 identified barriers of which a large number existed in this Department. This Administration has committed to work to remove those barriers one by one. The Department is way out in front, taking the lead.

Deputy Secretary Allen mentioned that, in mid-January Secretary, Thompson announced a waiver program that will to allow states to use federal dollars to create innovative ways to allow men, women and children living with disabilities to be fully involved in their communities.

Deputy Secretary Allen conducted the swearing in ceremony of the three PCMR appointees, Zoraida Fonalledas, Michael J. Rogers, and William Edward Lori.

Chairperson Madeleine Will returned to the business of the meeting and invited Bishop William Edward Lori to introduce himself. Bishop Lori is the Roman Catholic Bishop of Bridgeport, Connecticut. He has a brother with mental retardation. Bishop Lori mentioned that he has apostulates in his diocese that reach out to individuals with special learning needs.

Ms. Will called for the approval of the Agenda and Minutes of the first quarterly meeting. Both documents were approved.

Ms. Will introduced presenter Martin Gerry, Deputy Commissioner of Social Security for Disability and Income Support Programs. Mr. Gerry addressed the issue of changing the name of the President’s Committee on Mental Retardation.

Prior to his appointment with the Social Security Administration, Mr. Gerry was asked by Resource Network International to prepare a report on the use of the term mental retardation and alternate terms.

Mr. Gerry discussed questions that have influenced trends over the past decade and have occurred in textbooks and research articles, including the relationship to both prognosis and diagnosis of the term mental retardation. How does the term mental retardation in the United States compare with terminology in other countries and the international organizations to describe the same populations and characteristics? To what extent is the label mentally retarded viewed as pejorative within the general culture and media by service professionals and by their families? And to what extent do changes in the use of or definition of the term mental retardation, including with respect to the use of other terms, represent federal and state policy shifts?

Mr. Gerry talked about terms other than mental retardation that have been identified. For example, terms such as mental deficiency, mental disability or handicap, intellectual disability or impairment, organic mental disorder (a term used by the Social Security Administration) and developmental disability or delay. He noted that mental retardation is by far the term most frequently used in the United States to describe the population of people described in the PCMR Charter. At state and local levels, there is a general tendency to move away from that term, but there appears to be no consistent agreement on what a substitute would be.

Following Mr. Gerry’s presentation, PCMR members raised several concerns related to changing the name of the PCMR. Kathy Hargett noted that even across those who are advocating a name change, concerns seem to be consistent that the law of unintended consequences might be invoked. Gene Stallings’ view was that if the name is changed, there is a good possibility that someone will slip through the cracks. A question was raised regarding what role agencies would play if PCMR recommends a name change? What steps would agencies have to take in order to either support the change or allay the fears that the change is actually going to affect regulations, grants, and all those other things? Martin Gerry expressed his belief that changing of the name of this Committee, in and of itself, would not change those regulations and grants and structures. Another question was raised on the importance of the DSM in setting up names? Will PCMR efforts, since the DSM is going to be looked at in the next couple of years, influence the DSM to change first? Mr. Gerry responded that if one used the DSM definition of mental retardation and simply substituted another term that was defined precisely the same way, the use of the DSM would be easy. He did not see a particular reason to wait for the DSM and that the real question for PCMR would be is this in the best interests of the people that the organization is serving.

Martin Gerry’s presentation and extensive dialogue with Committee members were followed by a presentation from Robert Pasternack, Assistant Secretary for Special Education and Rehabilitative Services (OSERS).

Dr. Pasternack made a lengthy presentation on the “No Child Left Behind Act “ (NCLB), signed into law by the President on January 8, 2003.

The four principles that the President used in the bicameral/bipartisan approach to this historic legislation are:

Dr. Pasternack said that the only national measurement used for academic performance in America, is the National Assessment of Educational Progress (NAEP), a voluntary test. Forty-three states participated in the last NAEP test, but 38 percent of the fourth grade kids who took the test, are reading below basic proficiency. If you separate that data into groups, about two-thirds African-American, two-thirds Latino, and two-thirds Indian kids are reading below levels of basic proficiency. That’s despite the fact that from the federal perspective, the investment in education during the last seven years has increased 300 percent.

We must demand accountability and focus on results, achievement and performance. That is the fundamental premise and the promise of No Child Left Behind. Another goal of the No Child Left Behind Act is to help close the achievement gap between disadvantaged, disabled and minority students and their peers. He said that the best predictor of academic achievement is Zip code. Dr. Pasternack continued that there is also a tremendous relationship between income and academic scores. The wealthier the family, the higher the scores.

Annette Talis noted that the Committee is looking at universal standards, and raised the following questions: (a) When states developed universal standards about what children should know and be able to do, can they be linked to high priority outcomes for children with intellectual disabilities or mental retardation? (b) Does the Administration assume that the universal standards developed in States were written with a range of students in mind? (c) Theoretically, do we know that universal standards can be effectively translated for that population? (d) Do states write their standards with that in mind? (e) Are they ready to meet the aggressive timeline of No Child Left Behind? (f) Given the assessment requirements, what is the Department of Education hoping to see in districts on behalf of children with cognitive disabilities? (g) What does the Department hope to happen in districts that are most productive for children with mental retardation? Dr. Pasternack responded that they use the terms “academic content standards” and “achievement standards” rather than universal standards. The term “universal design” is used in order to accommodate the diversity of learners that we find in most classrooms. There has to be rigorous standards. When we talk about local control and flexibility, we are assuming that states are in the best position to make those kinds of decisions. But, the states have to submit plans to us and those plans will be rigorously reviewed. We will ensure that the accountability systems proposed are well constructed, well designed, appropriate, and rigorous. We have the same standards for all kids, including kids with mental retardation. However, the achievement standards, a demonstration of whether the student has mastered a particular concept or not, may be different in order to accommodate a person who learns more slowly or differently.

We also have academic content standards - what you want the kids to learn. But not all the kids are going to be able to learn that content the same way. How they demonstrate the mastery of that content gives the state some flexibility in terms of the achievement standards; then most kids with disabilities can take the standard assessments with accommodations such as extra time, a scribe, or using assistive technology.

The relationship between the academic content standards and the achievement standards is something with which we are really struggling. The PCMR Subcommittee on Education and Transition has talked about what adequate yearly progress and proficiency means for kids with the most significant cognitive disabilities? We don’t want these kids to be left out of the accountability system. We want to make sure that they are included in an accountability system that acknowledges unique needs and their learning differences.

Ms. Talis asked Dr. Pasternack if the Department of Education is concerned, as the accountability piece gets moving forward, and some states will do it well and some states will do it poorly, that there will be a rollback of wanting these? Is the Department worried about the inclusion continuing to evolve in a progressive way, given that this is viewed by some school districts, states and education folks as accountability for the system and a penalty depending on how these kids are included in assessment? Dr. Pasternack said that he is concerned because there have been some alarming discussions about that. Dis-aggregating the data and reporting on adequate yearly progress for a minimum of 95 percent of kids with disabilities, might have the unintended consequence of schools not wanting to include kids with disabilities in their school. Discussions have taken place about aggregating those data at a district level so that we can look at how to maintain accountability, but ensure that all the kids are included in the accountability system. One of the things that has not been discussed nearly enough is the notion of safe harbor. There is a tremendous carrot being offered to include kids with disabilities to make sure that they are not perceived as the reason why a school is identified as a low performing school.

Ms. Will thanked Dr. Pasternack for the elucidation of a lot of very complex technical matters and expressed appreciation for his help.

The next presenter was Tom Nerney, Director and one of the founders of the Center for Self-Determination.

Mr. Nerney talked about the history and origins of the self-determination movement, which is now active in almost 40 states across the country. The goals of self-determination and the enormous complexity involved in the fundamental systems change are issues that the Center is asking states, counties, cities, towns and everybody involved in the field of disability, to engage in. He addressed the forced impoverishment of individuals with cognitive and intellectual disabilities, the issue of quality and quality assurance and the issue of public dollars and public policy.

The self-determination movement began about a decade ago, when a small group of people with disabilities and professionals in New Hampshire examined the system of supports and services for people who were then labeled mentally retarded. They found the system totally wanting. In return for supports and services, they had asked individuals with disabilities to give up the basic freedoms that every other American takes for granted. So the group set out to create a set of principles that could be adopted by states, counties, localities and implemented with some integrity. The principles are basic American principles.

The first principle was freedom. The second principle that goes to the heart of the systems change issues was that individuals with disabilities, their families and allies have got to control the money in the system of long-term care. The third principle was that we end, once and for all, the cookie-cutter mentality that exists in human services where people are placed into programs and services in slots. The fourth principle was responsibility, because with freedom goes responsibility.

Employment has become a tremendous issue for persons involved in the self-determination movement. A paper called The Poverty of Human Services describes the lethal personal implications of keeping an entire population impoverished. We have never, ever looked closely at what it means to never have a dollar in your pocket and how that cuts you off in terms of relationships and your community. Under self-determination, we have to change the goal from simply getting a job, to producing income. There are projects all over the country where people with the most significant disabilities, people who cannot even do the labor associated with a typical job, are beginning with redesigned support systems with new job descriptions for people owning their own micro-enterprise. People who can barely leave their homes own vending machines. People are making $300 on a weekend selling popcorn. There is simply no end to what can be done in terms of cracking this whole notion of enforced poverty. Florida is the only state so far to use an experimental 1115 waiver where you actually control the cash that comes with long term care. It’s the only state in the country that included folks with developmental disabilities in that 1115 waiver.

Most quality assurance systems, especially for folks with intellectual and cognitive disabilities, don’t produce very much. The best we do is to ask folks with disabilities if they’re satisfied. We use the lowest common denominator when we look at whether or not people have quality in their lives. By and large, results show that individuals with disabilities are satisfied, whether they live in an institution or in the community. Individuals with disabilities are satisfied, if they have friends or if they have no friends. Individuals with disabilities are satisfied, basically, if they have a job or if they have no money whatsoever and live totally impoverished lives. Because we have no expectations of individuals with disabilities, we allow this stuff to happen. We suggest moving from the notion of quality from “satisfaction with human service” (the lowest standard of all and an insult to individuals with disabilities), to satisfaction with universal human aspirations. In other words, we norm quality on what the aspirations are for everybody who lives in the community, not just people with disabilities.

Looking at the issue of health and safety, from the Center’s work across the country, it seems that the only people who improve their safety and health are people who have enduring relationships with people without disabilities. Disabled people are perpetually at risk if they do not have enduring relationships with people who truly care about them. The complexity of the systems change that we’re asking for is going to take a generation to change.

Results from studies in New Hampshire, Michigan and California show that we can achieve better value. When people can purchase deep in the community, outside of human services where they’re not restricted to typical provider agencies and what they sell, individuals with disabilities and families can teach us a lot about being cost effective.

Mr. Nerney engaged in dialogue with PCMR members.

Question: If you give the money to the family that you can save money - - is it the job of the family?

Reply: The money goes to a fiscal intermediary who takes care of all the paperwork, taxes, etc. If families want to care for a person with a disability, they ought to have the right to do it. However, most families don’t want to start managing services or supports for their adult child.

Question: Regarding micro-enterprises, where can we, as parents, go when we have a child with significant disabilities but who also has some abilities that can be translated into business ideal products?

Reply: The Center on Self-Determination conducts 2-day training courses on developing micro enterprises for anybody. Lots of people with mental illness are very interested, but have episodic mental illness and there are days when they can’t work. It can be designed in a way that supports a person’s job description changes.

Question: How does one get around the Social Security and Medicaid rules and regulations.

Reply: Most of the micro-enterprises don’t trigger reductions in SSI or SSDI at the very beginning. They do after while, if they grow. A person with a disability can get a waiver under SSI but states never apply for them.

Question: How do parents hear about this – how is the public awareness aspect going?

Reply: By word of mouth. One of the things that PCMR could do is to publicize the information and data currently available.

Ms. Will thanked Mr. Nerney for his presentation and introduced Michael Morris, Director of the National Disability Institute of the National Cooperative Bank Development Corporation, Washington, D.C.

Mr. Morris’ presentation complemented Mr. Nerney’s. He observed that very little time has been devoted to the issues of economics and finance, and understanding how to translate the power of money into power that is also available to people with the most significant disabilities, people with mental retardation. Mr. Morris negotiated a relationship with the National Cooperative Bank (NCB) in November 2001, which was originally chartered by Congress some 30 years ago, to provide access to capital for cooperatives. About 20 years ago NCB created a non-profit called National Cooperative Bank Development Corporation. Its mission was to try to attack the causes of poverty, to assist disadvantaged communities, work with issues of housing and economic development and to find ways to lift people out of poverty. Our mission is to also provide them the means to have choices, which only come with access to capital, with economic gains and movement towards self-sufficiency.

The National Disability Institute came as a result of those discussions. They had worked with every disadvantaged community, but had not really focused or targeted people with disabilities. Again, relatively small when you consider the size and scope of the problems associated with poverty that attacks disadvantaged populations across this country. However, it is a rather unique place because it is using its expertise in finance, lending, and public policy to look at new ways of building solutions to see if we can apply their knowledge and expertise to advance social and economic independence for people with disabilities.

Unless we move beyond a discussion of employment to a discussion of what the roots of poverty are and how to find new strategies to escape poverty, we’ will be having the same discussions for the next 20 years. Mr. Morris said that he brings an unusual combination of a day-to-day working relationships with an institution that is focused on access to capital, service delivery systems, research on public policy, understanding what works and what doesn’t work and, building new bridges between the disability world and the generic world.

Mr. Morris informed the audience about research from both the Research and Training Center and other research and training centers that NIDDR has funded regarding individuals with mental retardation. He discussed the context or framework for decision making in 2003, and shared challenges, but more importantly, almost a concise 10-point plan to reverse some of the difficulties and complexities of current public policy, historical problems and prejudices besetting individuals with mental retardation and their families. First, individuals with mental retardation, when compared with individuals with other disabilities are more likely to be educated in segregated environments more so than any other disability population. Second, individuals with mental retardation are the least likely to transition from school to post-secondary opportunities. Third, individuals with mental retardation are the least likely to be employed full time, less than 25 percent in terms of the working age population. Finally, over 300,000 individuals with mental retardation or developmental disabilities are currently in day activity centers or sheltered work settings and are earning less than half the federal minimum wage. Typical wage per week of ten dollars, let alone earning half the minimum wage in terms of working typically less than 10 hours a week.

We have to develop set a framework for decision making in the year 2003. First, we have the Supreme Court Decision, known as Olmstead, that creates a community imperative.

Second, we also have the President’s New Freedom Initiative which very correctly looks at, as an extension of Olmstead, what can we still do beyond the Americans with Disabilities Act.

Third, and equally critical, are the issues that Congress will be facing this year. It’s an almost unprecedented period of oversight and reauthorization.

Finally, the growing federal deficit raises interesting issues that will enable us to look at public policy in perhaps different ways than before. Congress and the American public will be looking for return on investment and more than ever before will focus on outcomes and performance. Those kinds of issues can bode well for a discussion about re-framing the system of supports for people with disabilities.

Mr. Morris spoke at length about some of the challenges and opportunities people with mental retardation, and their family members face, including:

Tuesday, January 28, 2003

Ms. Will reconvened the full Committee meeting and explained that each Subcommittee Chair would present a report on their activities since the first Quarterly Meeting.

Report of Subcommittee on Public Awareness

Mrs. Porter-Hoppe reported that the Subcommittee has three very specific charges.
(1) The PCMR name change, (2) a public relations campaign that might include TV commercials, radio ads, making sure that no one was left behind and, some sort of ad that would offer the general public an opportunity to change minds and attitudes; the Subcommittee is considering asking the President to be a part of the commercial and (3) changes to the PCMR Charter.

Ms. Porter-Hoppe noted that Subcommittee member, Kathy Hargett, met with the Special Olympics at the request of Ms. Will and would talk about the K-12 Program and discuss her meeting with the full Committee.

Ms. Hargett met with the Special Olympics because Eunice Kennedy-Shriver, former PCMR member and founder of Special Olympics, had approached Don Evans, Secretary of Commerce, about partnering with the PCMR; and also about a study that the Special Olympics was conducting.

Special Olympics is dedicated to improving the lives of those with mental retardation by focusing on health, community acceptance, and full inclusion in the community, both nationally and internationally. The Gallop organization is conducting a multi-national attitude survey on behalf of the Special Olympics. The survey is being conducted either by telephone or face-to-face not only in the U.S., but also in Brazil, China, Egypt, Germany, Ireland, Japan, Nigeria and Russia. Their survey consisted of 20 questions. Each question used the term mental retardation. When asked why they did that, Special Olympics said because it is the term internationally understood. The goals of the survey were: (1) To get an understanding and knowledge of mental retardation in many different domains on the perception of mental retardation by governments and societies all over the world. (2) To learn what people perceive as a personal impact on them, personally, as either community people or as family members; and (3) If they were exposed to or live near someone with mental retardation. This information is needed in order to develop a baseline for planning effective interventions in any of these countries that need it.

Special Olympics has a new program called the “Healthy Athletes Program.” This program will improve the health of these athletes by providing healthcare, oral health, eye care, hearing, physical therapy, nutrition, orthopedics, and dermatology. This program is event-based. Special Olympics has a cadre of professionals, medical professionals and volunteers, that are providing the screening. Families are involved because they are involved in the events.

Another program is called “SO Get Into It” (Special Olympics Get Into It). This program is a curriculum resource kit for students with and without mental retardation. The kits are designed for grades K-2, 3-5, 6-8, and 9-12, and the kits provide the schools and teachers with all the tools they need for involving youth in the Special Olympics – lesson plans, videos, and all sorts of things. They encourage children who do not have mental retardation to become a pal to a student with mental retardation and plan events and activities with that child – with that friend. Youth are taught about mental retardation and empowered to make a difference by learning about inclusion, tolerance, and respect. The SO Get Into It program has been designed to reach the most critical population and is a key to reducing the stigma of MR. The materials can be downloaded at www.specialolympics.org/getintoit. Secretary of Education Roderick R. Paige has seen it, embraced it and endorsed it, and is trying to get financial support to help Special Olympics conduct more evaluations.

Ms. Hargett concluded her report by adding that Special Olympics would like to partner with PCMR. It would give them credibility and, in return, they will work with PCMR to develop positions and papers.

Ms. Porter-Hoppe then discussed changing the name of the PCMR. She informed the Committee that because Subcommittee members cannot agree on whether the name should be changed (and, if it is, what name to use), they would like to convene a panel consisting of self-advocates and people addressing both sides of the issue at the next PCMR Quarterly Meeting. This would give the Subcommittee an opportunity to hear the information and help them make a decision on the name change.

Ms. Talis encouraged the Subcommittee to look at what the Diagnostic and Statistical Manual (DSM), currently in its 5th revision is doing. Medical practitioners and diagnosticians use interest groups as a key guide.

George Bouthelit, Ph.D., PCMR Research Director, pointed out that the American Association of Mental Retardation (AAMR) is a multi-disciplinary association, while the American Psychiatric Association (APA) is a single disciplinary association. He stressed the fact that PCMR needs to look at the definition used by the AAMR which represents the MR focus and it’s multi-disciplines, including medicine, psychology, social work, nursing, and so forth. Dr. Bouthilet suggested that PCMR not depend upon the American Psychiatric Association alone; rather, it should be careful about comparing a single disciplinary organization with a multi-disciplinary organization.

Revisiting the public awareness ad campaign, an audience member suggested that the PCMR contact the Ad Council, which may implement the campaign pro bono.

In response to a request from Ms. Porter-Hoppe that he talk about some of the partnering we might do, Gene Stallings informed the Committee that Wal-Mart spends several million dollars a year on advertising and they hire a lot of people with both physical and mental disabilities. He suggested that PCMR might go to a corporation like Wal-Mart and ask for a million dollars or more. Marriott has basically the same hiring practices as Wal-Mart and other chains like McDonalds and Target. Edward Mambruno suggested partnering with Best Buddies, a grassroots organization that does a great job with taking college students and consumers with MR

Ms. Porter-Hoppe thanked everyone for their suggestions. A report will be available at the next quarterly meeting. Also, the Subcommittee will try to put together a glossary of terms, directives, and focus for Committee members.

Report of Subcommittee on Education and Transition

Ms. Talis presented the Report on the activities of the Subcommittee to the full Committee.

Ms. Talis praised the remarks given by Dr. Robert Pasternack provided a history of changes in public education and helped distinguish between the IDEA and ESEA. ESEA now is referred as the, “No Child Left Behind,” law. The Subcommittee on Education and Transition prepared a letter on the “No Child Left Behind” law as it pertains to students with mental retardation that will be reviewed and voted on by the full Committee. If approved, Madeleine Will, Chairperson of the PCMR, will deliver it to the Administration. Of special concern are the new law, ESEA, and the resulting creation of new regulations and rules that will impact on pupils with mental retardation.

Ms. Talis expressed the Subcommittee’s concerns about the relationship between IDEA and ESEA over the years, but particularly as the two new laws exists now and the regulations and standards that will follow. She made remarks on the very useful presentation and discussion with Martha Thurlow of the National Center on Education Outcome when she met with the members of the Subcommittee on Education and Transition.

Certain education issues of special concern were identified: (1) How do we continue to emphasize full membership in society and meaningful achievement outcomes for our students with mental retardation? (2) How will IDEA provide the support and services to ensure that our students with mental retardation acquire ESEA achievement outcomes? (3) Can universal standards be linked to high priority outcomes for children with significant cognitive disabilities? (4) Is there a real dearth of instructional materials and training for regular and special education teachers? (5) Are teachers prepared to teach children with significant cognitive disabilities in a classroom within the context of standards based reforms?

Additional issues include: challenges of teacher retention in this new educational atmosphere; family knowledge and involvement in this new environment; community engagement; the most effective educational approaches; school accountability; the number, kinds and levels of accountability needed by federal, state, county and local educational offices?

Ms. Talis added that the two subcommittees had proposed a letter on the Medicaid Claiming Guidelines. The letter is to be sent as soon as possible and will be signed by Chairperson Madeleine Will. Since the contents of the letter concern two different Subcommittees, Madeleine will assume responsibility for merging ideas from both Subcommittees.

When the Notice of Proposed Rules is published, the Committee should respond immediately pertaining to implementation of the new law, No Child Left Behind. Hopefully we will be able to get what we want. However, this does not mean that we will dispense with the special education law, IDEA. We will also track progress on IDEA.

Report of Subcommittee on Family Services and Supports

Reverend Lon Solomon presented the report on the activities of the Subcommittee on Family Services and Supports.

The mission statement of the Subcommittee on Family Services and Supports is to improve the quality of life for persons with mental retardation and their families by (1) enhancing services available to individuals and (2) promoting systems that afford easier and faster access to those systems.

Eight priorities were originally identified: (1) Medicaid Waiver, (2) National Information Center, (3) Respite Care, (4) Accessing Culturally Competent MR Services, (5) Inconsistencies from State to State in Medicaid Policies, (6) Compliance with the Olmstead Decision, (7) Accessing Advocacy Organizations, and (8) Working with Direct Service Professionals. The eight issues have been reduced to three major priorities: (1) Medicaid, (2) Direct Service Providers and (3) Respite Care.

Medicaid itself is an overwhelming task. It has over 50 different wrinkles to it and is a fairly complex program. The Subcommittee is trying to get its arm around this elephant. We feel that the Medicaid system is broken. Respite Care has a number of issues and so does Direct Care Providers.

The Subcommittee has heard from some experts in the field of mental retardation. Tom Nerney, Sharon Brendt, and Dr. Rick Rader and members of the Subcommittee would like to be able to visit with President Bush in a face-to-face manner as has been done with many of the early Presidents of this nation, such as Abraham Lincoln. The Medicaid Waiver came about that way with President Reagan.

Reverend Soloman informed the Committee that Dr. Rick Rader, Exceptional Parent magazine, had offered PCMR some assistance through his magazine. The magazine has over 200,000 readers a month and its web site gets 800,000 hits per month. The Subcommittee will discuss his offer with Ms. Will and seek her advice.

Report of the Subcommittee on Employment

Edward Mambruno reported that the Subcommittee on Employment is engaging in many different areas with linkages to various other Subcommittees of the PCMR. He cited the Subcommittee on Education and Transition because of pre-vocational programs and the one-on-one Family Services and Supports on Medicaid Waiver issues, plus private and public sectors, including federal, state and local agencies. He noted the role of the U.S. Department of Labor, Office of Disability Employment Policy, EEOC and the National Disability Council.

Mr. Mambruno spoke on the importance of a Medicaid Waiver for employment opportunities and the need for an Independence Template for people with disabilities, particularly mental retardation. Special focus was placed on the Ticket to Work Program, giving some of the major pros and cons of the program. He indicated that there was a special need for marketing the program.

There was a series of discussions on prospects for micro-enterprises for people with mental retardation, citing a few examples of successes.

A somewhat lengthy discussion among members of the Subcommittee on Employment took place between the role of facility-based employment situations, such as sheltered workshops and work activity centers, vs. opportunities for open competitive employment in the community. Most members had a preference for open competitive and/or supportive employment in the community for citizens with intellectual disabilities. Currently, about nine percent of the total population of persons with mental retardation is in competitive employment situations.

A PCMR Committee member commented on the merits of facility-based employment, citing comments from families, particularly their view of advantages in safety, security and supervision.

Mr. Mambruno stated that allowing states to apply for waivers and having an independence template would give more choices to families and persons with disabilities.

The Ticket to Work Program can be a win-win situation for both the employee and the employer. There is a lack of marketing of the program. We need to focus on both the potential employee and the potential employer. Ms. Will believes that there is a parallel between the Workforce Investment Program and the Ticket to Work Program. She asked if the Subcommittee would develop a set of questions that relate to the Ticket to Work Program and request SSA and the U.S. Department of Labor to respond.

Mr. Nerney raised a question about costs and benefits of employment in a sheltered workshop. The government pays $14,000 to set up an employment situation for a person with mental retardation; yet the employee with the intellectual disabilities earns only $800.

Report of Subcommittee on Assistive Technology and Information.

Claudia Coleman presented the report on the activities of the Subcommittee on Assistive Technology and Information.

The Subcommittee has identified three major areas of concern for the Subcommittee: (1) The Tech Act, (2) Communication, and (3) Marketing.

Marketing of assistive technology is a major issue. There are personal devices (PDAs) that help people with intellectual disabilities identify the correct bus, among many, to get on. A global position system (GPS) is now used as an integral part of all public transportation buses, which are available for identification and location of buses, particularly those that are approaching a certain bus stop or intersection. The PDAs are available for purchase or rent. Of course, there are many other technological devices available but not known to people with intellectual disabilities.

Ms. Will noted that the issues identified under assistive technology cut across all of the PCMR Subcommittees. Families, teachers, employers and the American public need to become more aware of the new possibilities that exist for people with intellectual disabilities.

Ms. Will introduced Susan Hasazi, University of Vermont, who made a presentation to the PCMR focusing on educational and transitional issues, and findings from a study. Next, Dr. Stephen Corbin, Special Olympics, made a presentation to the PCMR on a special study conducted by Special Olympics.

Ms. Will chaired the conclusion of the meeting. She reported on her overview of past reports emanating from the PCMR over the years. She identified a list of recommendations made by the Committee, noting their variability in number and kind. She noted that some of the recommendations were quite narrow and some quite global in nature.

Ms. Will plans to present a report on past PCMR recommendations at the next quarterly meeting. A review of past reports might yield some ideas for recommendations, from our current Committee, to the President.

Dr. Giannini asked how many of the recommendations had been implemented. Ms. Will’s impression was that most had not been implemented. PCMR is still dealing with many of the recommendations issued in the past by other Committees. However, one recommendation that was implemented is the one on de-institutionalization (appearing in the 1974 Executive Order issued by President Nixon). In the late 1960’s there were as many as 275,000 individuals with mental retardation residing in our institutions. Today, there are about 44,000, representing a dramatic change.

Reverend Solomon remarked that it is important to provide solutions along with recommendations. Recommendations, by themselves, are not sufficient for any President to act upon. The President’s staff would have to determine solutions. The Committee needs to provide suggested approaches for acting on recommendations. It is better to have a few good recommendations with viable solutions than to have a long list of recommendations as may have been presented by former Committees. This Committee may have more impact on the President with a shorter list of recommendations accompanied by clear solutions. Ms. Will agreed with Reverend Solomon’s proposal and said that the current Committee should work on suggested solutions to each recommendation to maximize impact.

Ms. Will emphasized that the President’s New Freedom Initiative called for major system reform efforts. The New Freedom Initiative fits well with many of our discussions. Noting remarks made by Tom Nerney, we know of barriers and systems that are broken. She suggested that the PCMR use the same format as the President’s New Freedom Initiative, approximately 15-16 pages, for its report.

Ms. Will asked the Subcommittee members to maintain consistency in preparing their reports, beginning with a mission statement, then cite barriers or problems that are being addressed, and then list recommendations so that the PCMR can begin to see the major report take shape. The members will be provided a template for their use.

Ms. Will next discussed the proposed $1.75 billion program to help transition Americans with disabilities from institutions to community living. The funds would be spent over five years, with some $350 million proposed in 2004. The President would like to make it possible for people with disabilities to be eligible for assistance, without being impoverished in order to qualify, e.g., from Medicaid and other programs. In follow up, reference was made to the Ticket to Work Program. As appropriate, references were made to the President’s New Freedom Initiative.

Troy Justesen, from the White House Public Policy Office, spoke to the Committee about the New Freedom Initiative (NFI). The proposals evolved from the community through the Olmstead Decision, the New Freedom Initiative and through the President’s continuing concern. This is the design created with Secretary Thompson on how to move a focus within Medicaid that requires statutory, Congressional approval to move people from institutionalized settings to home and community-based settings. Institutions may still be an option, but there is an over-emphasis on institutional preference within the Medicaid statutes.

Mr. Justesen stated that President Bush hopes that a person will be able to choose home and community-based services, as well as other options, not currently allowed within the statutes. Waivers are the only option. They are optional for states and states must come up with matching funds. The statutes don’t make it entitlement like it does for institutionalized settings. This is the first time this has ever been proposed by any President. The President understands that people with disabilities are limited by the structure of society. The President is seeking to make changes with respect to Medicaid policy towards people with disabilities.

Mr. Justesen remarked that Texas has one of the most responsive systems of control for individuals with disabilities. That stems from the President’s governorship of the state, and he brought that concept from Texas to the national level.

Ms. Will thanked Mr. Justesen for his remarks and asked if there were any further questions. Hearing none, she thanked everyone for being at the meeting and the meeting was adjourned.

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