President's Committee on Mental Retardation Quarterly meeting:

May 12-13, 2003

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

Monday, May 12, 2003 Minutes
Tuesday, May 13, 2003 Minutes

Attendees

MONDAY, MAY 12, 2003

The President’s Committee on Mental Retardation (PCMR) officially convened at 9:00 AM on Monday, May 12, 2003, in Washington, DC.

Opening Remarks

Chairperson Madeleine C. Will welcomed PCMR members and guests. Ms. Will called for approval of the minutes of the January 27-28, 2003 quarterly meeting. Kathy Hargett asked for an amendment to the minutes to clarify her discussion of the Special Olympics report and a discussion by the Public Awareness Subcommittee members concerning the name change for the PCMR. The minutes, as amended, were approved.

Ms. Will stated that the next quarterly meeting is planned for September 2003 and asked that the members have a strategic plan and draft recommendations at that time.

Ms. Will discussed a recent meeting with a delegation from Denmark. Two members of the delegation work in the field of disabilities and they have developed a proposal for a European Union Committee for Persons with Intellectual Disabilities.

Introduction of Dr. Wade F. Horn, Assistant Secretary, Administration for Children and Families (ACF)

Ms. Will introduced Dr. Wade F. Horn.

Dr. Horn addressed the extraordinary work of Ms. Will in the field of mental retardation and thanked Sally Atwater for the outstanding job she has done as Executive Director of PCMR. After a brief discussion of his education in child psychology and special education, and his deep concern for people for developmental disabilities, Dr. Horn introduced the Honorable Edward Sontag, Ph.D., Assistant Secretary for Administration and Management, U.S. Department of Health and Human Services.

Swearing In Ceremony

Dr. Sontag expressed his appreciation for the work that the PCMR is doing and the progress it had made since January 2000. He asked re-nominated members, Nancy Case-Blanchard, Mary Christine Bruene, Zoraida Fonalledas, Brenda Leath, Alvaro Marin, Kim Porter-Hoppe, Michael Rogers, Windy Smith and Gene Stallings to come forward, and conducted the swearing-in ceremony.

Self-Advocates Panel Discussion

Ms. Will welcomed and introduced the Self-Advocates’ Panel Group who made presentations to the members regarding the proposed name change of the President’s Committee on Mental Retardation. All of the panelists agreed that the name of the Committee should be changed. The name, “mental retardation,” was considered insensitive and unacceptable by all self-advocates.

Ms. Will thanked the panelists for their comments.

Question and Answer Session/Motions and Voting

Ms. Will asked for comments and questions for the panelists and a motion for a name change.

Ms. Porter-Hoppe shared her experiences as a member of a race of people who have been referred to by many unfavorable and derogatory names: “colored,” “African-American,” etc. “Names really do make a difference. PCMR has been honored to have an opportunity to listen to people who have come to us to explain their chosen name of reference. The self-advocate panel has asked PCMR to change its name to reflect the focus of individuality. They feel that the term ‘mental retardation’ is offensive to them. The use of the term ‘retardation’ frequently leads to the use of derogatory language that is hurtful to self- advocates and their families. The panel asked that the Committee use the term, ‘for people with,’ to recognize first person language, reflecting a more human focused approach.”

“We talk about changing the way our government and communities see persons with intellectual disabilities, yet we hesitate in making a grammatical change to start the process. We speak about programs and opportunities for people with intellectual disabilities but people with intellectual disabilities need to be allowed to speak for themselves. The following questions and concerns have been raised by Committee members:

Martin Gerry addressed the question about beneficiaries and explained that if the name were changed, the Social Security Administration (SSA) is prepared to change its listings to reflect the change in terminology. “The SSA can define the term ‘intellectual disability’ precisely as we define the term ‘mental retardation’ and extend the same benefits and opportunities to the same group of people that are now covered.”

Ms. Will pointed out that the proposed Executive Order is based on scenarios, change or no change, which explicitly states that we are referring to exactly the same population we have referred to in the previous executive order.

Ms. Porter-Hoppe assured PCMR members that the Public Awareness Subcommittee has been discussing the possibility of a public awareness campaign, and that the matter would be put before the Subcommittee again.

Mr. Gerry also addressed the possibility of large groups of people with disabilities other than mental retardation applying for benefits under the new terminology. He explained that the SSA definitions and said that the SSA “could simply use the same definition that it currently uses which tracks the AAMR definition: ‘Sub-average intellectual functioning originating during the developmental period associated with adaptive behavior’.” The SSA listings describe the characteristics of individuals who are eligible. There is a separate listing for Alzheimer’s and there are several categories of what could be called “intellectual disabilities” that are covered separately. By creating the term “intellectual disability” and defining it precisely as AAMR defined mental retardation, SSA can have an exact overlap. “That would at least apply to the eligibility for both SSI and SSDI, and Medicare and Medicaid.”

Mr. Gerry discussed the question of what happens if the psychiatric community refuses to change the name, since it still follows the DSM to give the diagnosis. SSA cannot internally change how anything is coded within the psychiatric community, but in terms of medical evidence and arriving at determinations, what they really want is the measurement of functioning, not labels. He felt that even if the psychiatric community were not prepared internally to change its labeling to the standpoint of our process, it would not make a difference because the determination that someone was intellectually disabled, which would be the decision for eligibility, would be made by the SSA communicators.

Annette Talis, Chairperson of the PCMR Subcommittee on Education and Transition, asked that the Public Awareness Committee look into communicating with the people working on the new DSM.

After discussion by the members, Ms. Will asked for a motion on the name change. Ms. Porter-Hoppe moved that the title of the President’s Committee on Mental Retardation be changed to the President’s Committee for People with Intellectual Disabilities. The motion was seconded by Windy Smith and approved by majority vote. The Committee will submit a recommendation to the President for the name change.

Individual Development Accounts (IDAs)

Ed Mambruno, Chairman of the Employment Subcommittee, introduced Robert Zdenek Senior Consultant, Assets for Independence Act, Office of Community Services, ACF, HHS.

Mr. Zdenek summarized the activities of the Office of Community Services (OCS): It currently manages initiatives, including the Community Services Block Grants, the Social Services Block Grant, Community Economic Development, Job Opportunities for Low Income People, and Compassion Capital and a new initiative called “Assets for Independence Act” (AFIA). He expressed excitement about the possibility for OCS to partner with the PCMR in developing a program for Individual Development Accounts (IDA’s). His presentation centered on Individual Development Accounts and the Assets for Independence Act.

Copies of Mr. Zdenek’s presentation are available to members of the Committee on disk.

Working Lunch

PCMR member Gene Stallings, discussed his book, Another Season … A Parent’s Story.

The book is about raising a child with special needs. He described the impact that his son’s disability had on the lives his wife, his children and himself, and how it affected his coaching career. He discussed the heartache, the tears and pain that he and his wife experienced when they learned that their newborn son had Down Syndrome. He spoke of the medical treatments, options for institutionalization, hospitalizations, surgeries, and derogatory words that people used. He spoke of the joy and love that his son has brought to his life and said he wouldn’t trade him for anything. Mr. Stallings discussed the success of the “Rise” programs at universities throughout the southeast that he helped develop for people with mental retardation as a result of his own son’s disability.

Claudia Coleman, Chairman of the Assistive Technology Subcommittee, introduced David Braddock, Ph.D., Associate Vice President for Research, University of Colorado, and Executive Director of the Coleman Institute for Cognitive Disabilities.

Dr. Braddock’s presentation encompassed emerging technology, cognitive disabilities and the mission of the Coleman Institute and the results of The Arc Research Conference in 2003.

Dr. Braddock stated that by unanimous vote, the participants at The Arc National Research Congress adopted a Resolution to be submitted to the Secretary of Education and to the President to calling upon the Congress to support continued federal funding for State Assistive Technology Act projects which is to expire in 2004.

All of the projects illustrated by Dr. Braddock can be viewed at www.cu.edu/Coleman Institute. Also, copies of Dr. Braddock’s presentation are available to members of the Committee on disk.

Next, Mr. Dennis Smith, Community Medicaid and Medicare Services (CMS) in the U.S. Department of Health and Human Services, was introduced by Ms. Brenda Leath.

The speaker talked about CMS programs. Home and Community Based Services and Home and Community Based Waiver Services are considered vital to people with mental retardation. One of the charges that Secretary Thompson gave to the CMS in the Medicaid Program was to make the program more responsive to the people that are served. Medicaid administers two distinct programs and serves three distinct populations:

Copies of the full presentation by Mr. Smith are available to members of the Committee on disk.

Mr. Smith opened the floor for questions.

A dialogue took place on the possibility of proposed grants to states, the Florida waiver, Block Grants with caps, the federal matching program and the similarities of the Reform to the SCHIP program, IDA's, assistive technology and income limits.

Mr. Smith explained that a Waiver, under Title 19 of the Medicaid Law, has certain provisions that waive federal law and the requirement for statewide provisions. He also explained that states will save money under the proposed Reform. Some states are spending 95% of their long term care dollars in institutions. The State of Washington has documented a long term care savings of 15%, compared to what they have spent in nursing home care, by moving to Home and Community Based Care. CMS believes that states will have an incentive to adopt these reforms because, rather than returning saved money to the federal government, they will keep the savings.

A discussion ensued regarding assistive technology which is not reimbursable under Medicaid. Mr. Smith said that a Waiver would be needed in order to qualify for reimbursement and that CMS would be interested in pursuing coverage for assistive technology.

An attendee whose daughter is on the MR Waiver waiting list asked if states can be pressured into participating in a program. Mr. Smith replied that there is a new Presidential Initiative in which the federal government would pay the entire cost for the first year, so it would not cost the state anything. After the second year, then costs are matched at the usual rate. A year’s worth of funding is a good incentive for states.

Mr. Smith discussed the lack of funding for medical and mental health coverage and the stages necessary to increase funding: the first stage is to introduce reform at the federal level: Congress needs to enact a statute; the second stage is reform at the state level; and the third stage is to introduce reform at the local level.

In response to the Committee’s concern about adult dental coverage, Mr. Smith stated that it is optional for states. A number of states dropped that coverage this year due to fiscal problems. Solutions to states’ fiscal problems need to be expanded.

Next, Ms. Brenda Leath introduced Martin H. Gerry, Deputy Commissioner, Office of Disability and Income Security Programs, Social Security Administration.

Mr. Gerry spoke about the role of the Social Security Administration (SSA) and the initiatives that are focused on persons with intellectual disabilities. SSA insures the entire American population through the SSI and Disability Insurance Programs. It pays benefits to almost 12 million people, approaching $100 billion in coverage. SSA has a volume payout of approximately 10 times the size of either Provident or Metropolitan Life Insurance Companies, the two largest private disability insurers.

The Disability Insurance Program was created as a “Disability Early Retirement Insurance Program.” Originally, the average age of people on the Disability Program was 59 years old. It was an early retirement program and covered workers, not people who had been out of the labor force. It paid benefits for an average of six years because at age 65 people then went on the Retirement Program. For many years, and in many ways, it still operates as an early retirement program.

The majority of people insured by the program are not receiving benefits, and the age of beneficiaries has significantly lowered in the Disability Insurance Program. Additionally, the SSI Program insures over 2 million people below age 25. SSA does not insure against the risk of disability, but rather against chronic unemployment or underemployment. Historically, about .2% of the people that SSA insures and pays as beneficiaries have ever left the rolls for reasons other than death. Through a combination of strong punishments, disincentives and a lack of positive reinforcement, SSA has managed to maintain this .2%. Even for periods of economic boom where there were real demands in the labor force, they have never gotten much higher than .2%

Mr. Gerry also discussed some larger efforts. The President’s New Freedom Initiative has made a significant difference in SSA’s ability to address these topics. Some of the initiatives exist in large part because of the cooperation and work that has gone across the agencies, and particularly with the Domestic Policy Council coordinating these activities.

Ms. Will stated this Committee wants to ensure coherence, continuity and the results-oriented objectives that the President has expressed in the New Freedom Initiative across all agencies, and she asked if this is something to recommend to OMB. Mr. Gerry responded that this is something OCM can and should do.

Mr. Gerry concluded his presentation by saying that he had tried to outline some major things that SSA is doing for the disability community, and that the Commissioner has promised major overall in the Disability Determination System. They are looking at some changes in the Social Security Administration that are truly changes, in terms of where the Agency has been up until now in its 70 year history.

Ms. Will thanked all of the speakers and presenters and recessed the meeting until 8:30 AM Tuesday, May 13, 2003.

Tuesday May 13, 2003

Ms. Will reconvened the full committee meeting at 8:30 a.m. and asked for reports from the Subcommittee Chairs.

Subcommittee on Public Awareness

Kim Porter-Hoppe, Subcommittee Chair, reported that the Public Awareness Subcommittee had made a specific list of the things they would like to have accomplished. Reports from the self advocates were crucial in helping them make their decision about the name change. The Subcommittee proposes a National Day of Recognition, if the President signs the Amended Executive Order changing the name of the PCMR. The Subcommittee also invites opinions from the self advocates on what consumers want, what the doctors want, what social workers are looking for, what would move them, and what will help support them.

She asked Kathy Hargett to address the Special Olympic program called “So Get Into It.”

Ms. Hargett described the program as a public awareness program for school children. It is a curriculum backup by video tapes geared to specific age groups. So far 3500 have been sent out to schools in the country. Due to budget constraints, Special Olympics cannot mail out copies. Schools that do not have it can get it online. Additional video tapes may be obtained by getting in touch with Special Olympics.

The “So Get Into It” program is not a mandatory requirement for schools, but they are encouraged to use it. It is a sensitivity program that teaches kids without disabilities what is involved with being a friend and a companion to a child who has a disability. It makes each one aware of what the other has to offer and highlights the gifts and special talents of the kids with disabilities so there can be greater acceptance of them in the mainstream.

Ms. Porter-Hoppe reported that the Subcommittee had discussed several possible methods to use for public awareness such as televised messages, public service announcements, articles in newspapers, magazines, journals and television shows. Windy Smith recommended people to the Subcommittee that she felt would be good role models for a commercial. Any other suggestions should be directed to one of the Committee Members.

Dr. Appareddy addressed the importance of working with the psychiatric community, from psychiatrists, to psychologists, to social workers and, more specifically, with the American Psychiatric Association (APA). She felt that until the name change is official in DSM, the psychiatric community will have to use the old label in their reports.

Mrs. Porter-Hoppe reported that the Subcommittee has been working collaboratively with the Chairs of the other subcommittees and with PCMR in order to come up with a comprehensive message. A scripted message is recommended for the spokesperson or the print. The Subcommittee also talked about logos and continuity throughout the entire campaign.

Annette Talis suggested that the PCMR consider creating an ad similar to the one she had previously sent to the members which was sponsored by the Lutheran Services in Wisconsin. The ad is one of the newer, edgier commercials that make people think. It shows that the individual has some kind of disability, but he has a life.

Mr. Lohff concurred that the commercial was a positive one which showed that individuals with disabilities can handle work assignments, and can make work-related as well as social judgments.

Subcommittee on Family Services and Supports

Brenda Leath, Subcommittee Chair, reported that her Subcommittee is challenged with streamlining over 20 recommendations into three priority areas. The priorities agreed upon are:

Research has shown that there has been no centralized database or data collection effort to discern what various types of respite care services are available, how they are being provided and access to them. The Subcommittee hopes to have a major conference, hopefully a White House Conference, where they can begin to systematically collect information, have various respite care provider organizations participate and give them some answers to these questions.

The Subcommittee is looking at a comprehensive waiver and is trying to determine how they can marry a number of agencies to collaboratively do a comprehensive demonstration program that takes into consideration health, housing, education and employment.

Cultural competency and training of the providers that serve individuals with intellectual disabilities are issues of concern. The Subcommittee is looking at direct support professionals, physicians, nurses and other health professionals. They are also looking at behavioral scientists, psychologists, and psychiatrists, and all the people who have a hand in the overall care of individuals with intellectual disabilities. The two categories need to be divided. The curriculum offered to physicians and other professionals needs review.

Comprehensive standards should be implemented for training opportunities to ensure that people with intellectual disabilities have access to quality care are under review.

PCMR's commitment to accessible quality care for all who need it by addressing the health care needs of persons with intellectual disabilities across their life span. Doing so requires improving provider knowledge and skills in order to support a continuum of care that incorporates: antenatal care, universal coverage, mechanisms to determine full blown manifestation of mental retardation, and palliative or end of life care through expiration.

Subcommittee on Assistive Technology

Claudia Coleman, Subcommittee Chair, reported that her Subcommittee has two thrusts in assistive technology: research and development of assistive technology devices and getting it to the consumer. Two extremes to assistive technology exist: (1) highly sophisticated, state of the art products, such as computers and computer programs on special devices; (2) fundamental products such as garage built devices that fit specific needs for special needs in the family.

The Subcommittee wants to explore, through private industry or potentially through SSI, the creation of a center on research specifically for assistive technology. It would be a collaborative research center where computer science, engineering, special education, psychology, health and science have an all encompassing way of looking at technology. The Subcommittee is discussing a center that can view the disability community as a whole and find out what tools are the needed, what the price points are and what we need to do to how to get the tools to the community for employment transition.

Marketing is another issue. The first area to explore is whether or not PCMR can participate in and look at the potential Florida Demonstration. The Subcommittee has discussed expanding upon the Cash and Counseling Program, the Passed Plan, technical funding through SSI, the Extra Ticket Voucher, the Youth Transition program and is exploring how to get assistive technology nestled into these programs.

Mrs. Coleman asked the Subcommittee on Public Awareness to consider her subcommittee’s ideas on public awareness. She recommended showing a person with a developmental disability reading, whether in a library scene, an ad or elsewhere. It is literacy, using assistive technology as a vehicle. Some of the many software tools that are available for reading could be used.

Subcommittee on Employment

Ed Mambruno, Subcommittee Chair, discussed a proposal for a savings account, which would be called the Qualified Disability Savings Account that ties into employment. The proposal would offer a savings plan with tax deferred earnings. Contributions would not be tax deductible and the interest earned on the account would not be taxed. Distributions to the qualified disabled individual would not be considered taxable income for them.

The program is one where every child would have the opportunity, when he is employed, to have a savings account. The Employment Subcommittee is charged with these issues because they help to encourage individuals to seek employment. If the parent puts away money from the first year of birth, in 20 years they will have a substantial sum of money. They would have the extra income, if they need it, to purchase a vehicle, purchase transportation and accessible technology. Parents plan for education all the time, why not have parents of children with disabilities plan for those things. The Subcommittee is very hopeful that the full Committee will review this proposal and take it under consideration.

The Subcommittee is also working with the Education and Transition Subcommittee on voc rehab and public awareness. The help of all of the subcommittees is needed in promoting ideas to move persons into employment.

Mr. Mambruno asked Jim Brett to speak about the Qualified Disability Savings Account.

Mr. Brett discussed how the average person plans for the future. There are IRA’s, Roth IRA’s, SEP Plans, 401(k)’s, etc. In Massachusetts, there is a “529 Plan” for families with a young child who are thinking of college for that child. But, no plan exists for a disabled person. The proposed Qualified Disability Savings Account is to supplement other plans. This proposed plan focuses on self determination, independence and choice. It complements the President’s New Freedom Initiative.

Medical services such as dental care and eye glass care are not a guarantee for every person under Medicaid. Seventy-five percent of federal and state money spent on ID, DD or MR in this past year is about $30 billion on this account. Approximately 70% of that is out of Medicaid.

The proposed plan would provide families with an opportunity for long term planning for people with disabilities. There would be no cost to the federal government. A person can hop in or hop out. Participants would not lose any benefits because they are the beneficiary, not the custodian, of the accounts. The account would be in someone else’s name - a father, a brother or a sister.

A lengthy discussion was held among the members n questions regarding whether or not the funds would be tax exempt. For example, if the disabled person dies, would the balance of the account go to their heirs? Would the heirs pay taxes? Would taxes be paid under estate tax?

Mr. Gross was very supportive of the proposal but said that it would have some tax consequences and suggested that it be reviewed by the various regulatory agencies, especially tax people. He recommended that the Committee endorse the proposal and move it down the line.

Ms. Will agreed that the Committee will have to go to the relevant people in the Administration and may even have a panel of those people come to our next meeting or talk to them by phone to discuss the next steps.

Mr. Aponte offered a motion that the Committee adopt the proposal as a recommendation to forward to the President or other appropriate office. Ms. Will said that while the Committee endorses the proposal, it does not have the ability to move it forward. It needs to be explored with the Administration.

The motion was approved.

Subcommittee on Education and Transition

Annette Talis, Subcommittee Chair, said that the committee has reviewed standards and assessments in schools regarding the “No Child Left Behind Act” as it applies to people with mental retardation. The PCMR is organizing a Round Table with the Office of Special Education and Rehabilitative Services to discuss the skills that people with intellectual disabilities need to acquire for employment. Mrs. Talis asked for recommendations from the full Committee for an experienced transition person who has worked in a large school district.

The Subcommittee is examining barriers to people with intellectual disabilities, as well as looking at ways to create a seamless proactive system One barrier is the lack of post secondary options and having the personal resources to avail themselves to those options. Partnering between banks and school districts is an area to explore. Another barrier is teacher preparation. The National Center on Secondary Education and Transition has invited the PCMR to help shape its conference in September.

Research is needed to build a seamless system of standards, skills, dispositions, assessments, and accountability. The Subcommittee should examine how the states systems are working.

Social Security Administration Proposed Rulemaking—Updating and Revising the rules to Evaluate Mental Disorders.

Ms. Will introduced William C. Anderson, Director of the Office of Medical Policy, Office of Disability Policy, and Office of Deputy Commissioner for Disability and Income Security Programs at the Social Security Administration.

Mr. Anderson made a presentation on the Social Security Administration’s Proposed Rulemaking to update and revise the rules to evaluate mental disorders. The steps involved in making determinations for SSDI and SSI eligibility are:

(1) Sequential Evaluation Process. A process used for adjudicating disability claims determinations. The definition of disability begins with “inability to work if a person is working,” an SGA level.

(2) Severity Screening. Individuals who have a very minor impairment would get screened out at this step. Everybody else who has a disability that impacts their ability to work would move on through the process.

(3) Whether or Not an Individual Meets the Criteria Listing. This step is to identify individuals who are disabled, without having to look at their past history of work activity, age, education and work experience. If an individual has an impairment that is in the Listings of Impairments, they would be considered disabled and would not have to go through the rest of the process. The other purpose of the Listing is to allow for consistent adjudication.

Two additional steps in that process determine if an individual is severely impaired. An individual may have an impairment that results in restriction of function but he does not necessarily meet the Listings Criteria. The determination of whether or not they will meet the disability criteria involves what they did in the past and what their current abilities are.

(4) The last step is the SSA definition of disability which requires that an individual be unable to perform, not only any work he has done in the past, but any work that exists in the national economy.

Mental retardation falls under the system that SSA calls “Mental Disorders” and the Mental Disorders Criteria are driven a lot by the DSM which is put together by the American Psychiatric Association. Each time the DSM changes, SSA updates its criteria to stay current with the DSM.

To update the Listing Criteria, SSA develops a “Notice of Proposed Rule Making,” that is published in the Federal Register. It describes the purpose of the rule, and asks for public comments. SSA reviews the written comments, decides how to respond to those comments and then publishes a Final Rule.

SSA is trying to develop a process that will be a little more inclusive on what the criteria would be. On March 17, 2003 SSA published an “Advanced Notice of Proposed Rule Making,” that says they are going to update the criteria in the Mental Disorders’ Section of the Listings and are interested in comments from the public. The notice asked a lot of questions such as “Do the Listings work for you individually or for a group that you represent? If not, how can we improve them, what do we need to change to make them more appropriate and how do we move forward? “

SSA next reviews the comments and meets with individuals and groups that have an interest in how SSA can be more responsive to what they want. Then a Notice of Proposed Rule Making will be published in the Federal Register and the public will have 60 days to comment on it.

Several questions were presented to Mr. Anderson on the definition of SGA, adaptive behavior, qualifiers, and IQ criteria.

RFC means Residual Functional Capacity, a determination of severity of impairment. That determination is based upon the ability to walk, stand, lift, sit, push, pull, cognitive thinking, planning, following 1 and 2 step directions and so forth. These things are defined in the Regulations Summary.

Copies of Mr. Anderson’s presentation are available to members of the Committee on disk.

International Special Olympics Survey and Results

The next speaker was Dr. Gary Siperstein, PH.D., Professor of Psychology and Director of the Center for Social Development and Education, University of Massachusetts, Boston. Dr. Siperstein addressed the International Special Olympics Survey and Results, a public awareness campaign which is the largest study on public perception of people with mental retardation conducted in the last 30 to 40 years. Nine countries and over 8000 people worldwide were studied. Dr. Siperstein’s presentation compared the United States to the countries researched. The objective of the study was to examine public perceptions, beliefs and expectations regarding inclusion of individuals with mental retardation.

Special Olympics’ approach was a multinational effort to look into attitudes and to think about how to impact society. The development of the survey questionnaire took over one year. Over 600 questions were reviewed from all of the research studies conducted nationally and internationally. Countries selected represent vast differences in culture and geographic areas that were involved in different ways with Special Olympics International. A random sampling of 800 was collected by Gallup International from telephone to face-to-face interviews.

Copies of Dr. Siperstein’s presentation are available to members of the Committee on disk.

Panel Discussion: Public Perception of People with Mental Retardation: A “New Face” for the 21st Century.

Panelist Bette Levin works with the Centers for Medicare and Medicaid, the National Institute of Neurological Stroke and Disorder, NINDS at NIH, other governments, and the Government of Puerto Rico. She previously ran Public Relations at AARP.

Ms. Levin said that when she was at AARP, one of the things they were interested in was changing the images of aging as the baby boomers turn 50. In thinking about a public awareness campaign, she urged the PCMR to take it in a thin slice, i.e., figure out what the target area is and the behavior they want to change. Is it going to be employers, parents or people that are uninvolved?

Panelist Kim Porter-Hoppe, PCMR Member and School Board Member in the Epsilon Public Schools, Ann Harbor, Michigan.

Mrs. Porter-Hoppe’s presentation focused on changing perceptions. She mentioned that we actually ask people “How do you feel about students with intellectual disabilities being included into the school setting?” As a School Board Member and a tax payer, Mrs. Porter-Hoppe believes that people with disabilities already belong there. “Who is at fault when they are not successful in the community? That says to me that they are not members of our community.”

Panelist Annette Talis, PCMR Member and School Board Member in the State of Wisconsin. Mrs. Talis discussed inclusion and teacher training. She offered her observation about the data concerning schools and wondered why we are getting such a disheartening and inconsistent picture. First, children with all ranges of disabilities belong in schools. In the era of litigation with schools and policy makers, the doors got open; we created an individual civil rights for these students. Now we have competition between individual rights and the rights of the group.

The face of Special Education continues to be children with intellectual disabilities and those perhaps in wheelchairs or using other devices. “We need another word for ‘inclusion’” because we had a public policy that says “they belong, they should belong, and they are going to belong.” But, we do not get all the teacher preparation or support staff. Allison Ford made a presentation in Ms. Talis’ school district on how integrating students and how an integrated seamless classroom works. She had slides of the kids working and she described lessons. That is the only thing that changed the perceptions with School Board Members. Teacher training is a huge issue. Not only does the public believe the teachers do not have the skills, the teachers themselves do not believe they have the skills.

Panelist Nique Fajors, Assistant to Secretary Don Evans, Department of Commerce. Mr. Fajors is also the Policy and Strategic Planning Officer as well as a Detailee to the USA Freedom Core which is a coordinating council at the White House focused on service and volunteerism.

Mr. Fajors asked that the PCMR link this movement directly to patriotism and what America is about. He commented that Secretary Evans and his family are one out of ten families who are directly affected by mental retardation. Secretary Evans has a daughter that would fall into that category.

“It is critical for the PCMR to make the business case as it relates to employment opportunities.” Mr. Fajors mentioned that in his last corporate assignment, he ran a division of marketing services. One of the facilities they used for a sampling product was staffed by people who were intellectually challenged. It was cost effective for the company and a win, win for the employees. “These things need to be spotlighted and highlighted more often, because that is the best way to make business pay attention and have a lasting affect.” He said that documenting these things would educate the business community.

The entertainment industry should be held accountable for its mis-education. Each ethnic or racial group has had its challenge with how they are presented on television and in the movies as it related to people who are challenged. A number of the media companies are putting resources and dollars against these sorts of efforts. They may be funding sources.

Mr. Fajors offered to help spread the message through the Secretary of Commerce who might drop in a couple of strong bullets around these issues when he attends conferences and makes speeches. And, it would get picked up by the media. He asked the Committee to let him know who they can partner with to spread the message, once they have defined their specific principles on the awareness.

Panelist Armentha Cruise, President of the Aspen Group. The Aspen Group is a Human Resources Facilities Management and Staffing firm. Normally Ms. Cruise deals with the Fortune 100 companies, medium size businesses and government agencies. However, she has been thinking about how she can help the disability community in the future. There is a projected shortage of 4.8 million workers in the labor market over the next ten years. In the next 20 years, a shortage of 19.7 million workers will occur. That means that employers are going to have to look differently at whom and how they hire. Ms. Cruise said that her understanding is that most people with mental retardation work heavily in areas such as retailing, hospitality and in food service. There are also other areas such as, counseling and even teaching college for people who are mildly retarded. In placing people in jobs, first an agency does an assessment. The tools may be different because of the type of work that the person is going into. It does not have to be a written test. It could be using a verbal game, blocks, many, many things, but it would be relevant to the job that the person is going into. Part of that would be working very closely with the individual and family members because they are the people who can really help in partnership.

As we move forward, the industry will have to change because of the shortage. Birth rates have decreased substantially and with the aging American population, there is a hole. Ms. Cruise recalled a recent incident at a restaurant that made her more aware of the pain people with mental retardation experience. Her waitress was a person with mental retardation. “We must do something to make the public aware; we must sensitize the public to what is going on; how people feel; how they hurt and, finally, we must put in action steps that are going to make a difference in terms of how we deal with it.” She said that in terms of the marketplace, having to deal with many, many employers across the board, this is certainly one area that she, personally, will work at.

Dr. Siperstein complimented Ms. Cruise’s statement about not just public awareness but also emphasizing that action is needed. In order to move toward an awareness campaign, we need target audiences and to identify reinforcing channels; not just interesting, stimulating, provocative events or activities, but things that actually reinforce outcomes. We need to leverage whether they are corporate leaders, government leaders, religious leaders, charismatic leaders, good science, people who can turn a phrase, good spokespersons that come from this population, and evaluation. He asked to explore the perspectives of the Committee on scope issues, major target issues and central themes.

A question was raised on how not to give a mixed message in an awareness campaign when we are not clear on the terminology. Many national organizations have moved away from the term “mental retardation,” but Special Olympics still uses it.

Dr. Siperstein replied that the issue about terminology could be part of an awareness campaign. “We need to shift the paradigm.” He quoted Tim Schreiber: “Can we convince people that folks with intellectual disabilities need an opportunity; they need a chance just like everybody else?”

The members discussed various methods to use for the ad campaign, the necessity of being bipartisan, target areas and changing images and attitudes. They concluded that President Bush and Senator Kennedy would be excellent examples of bipartisanship; that actually seeing people with disabilities doing things would be a powerful thing. Messages from self advocates can also be very powerful. Target audiences could be the physician community, adults, school aged children, public and special schools, employers and the general public.

Shelva Weaver, representing HUD, mentioned that she had worked at a school for people with mental retardation and disabilities for three years. No one ever came to her school and asked them to help with Special Olympics. She suggested that one of the target areas to focus on is schools.

Dr. Siperstein mentioned that at World Summer Games Special Olympics in Dublin, on Monday, June 23, 2003 there will be a Global Youth Summit that will have youth with intellectual disabilities, and some of their colleagues and peers without intellectual disabilities from different countries, participating. Prominent leaders, such as Secretary Paige, will be there. The youth are going to be presented with some of these findings from the survey and they will be upset. There will be an exquisite tension between what grown ups say and what young people say about the capabilities of people with disabilities and about inclusion opportunities. Hopefully, that tension will lead to some productive calls to action.

Michael Rogers commented that we have to change the beliefs of people with disabilities that they cannot work. “There are very few of us who actually do work.” There is no incentive for a person with a disability to say “Oh, everybody says I can’t do anything.” If you hang around people who say you can’t do anything, guess what, you can’t do anything. If you hang out with people who say I can work, you can work.

Dr. Siperstein inquired about a recent report that he had seen on tax legislation that allows Fortune 500 companies to claim certain types of tax benefits for employing people with disabilities. The report said that none of them have really taken advantage of it. He asked “Is it that the law was not right? Was there no education? Were there no case studies of demonstrated success?

A member responded that it probably was the Ticket to Work Program which is implemented by the Social Security Administration. SSA is looking at ways to market it in the public awareness campaign. That would be appealing to the USA Freedom Initiative because it is about contribution, and it is about everybody being part of the society.

Comment (unknown speaker): “We are not going to have a whole lot of effectiveness with any efforts made until this Committee begins to develop a consensus profile of who we represent. I do not think we have done a very good job of that. I think we should move on to the problems. I do not think that we have decided what kind of individual typically fits.’’

Mark Gross mentioned about the variations in mental retardation levels. That is only the tip of the iceberg. “We have variations in many other aspects of mental retardation.”

The Committee members exchanged thoughts and ideas on transition into employment. How do you change employment structures to absorb people who need different help? The idea that people can work at home, people can share jobs; this is all part of the continuum of treating people as individuals and finding their skills. Dr. Siperstein said that he has two people with intellectual disabilities working in his department at Special Olympics and he realized that he was not trying to find a shape in the organization that fits them. What he saw about them was really unique.

Ms. Will introduced Dr. William E. Kiernan, Director, Institute for Community Inclusion, University of Massachusetts Boston.

Dr. Kiernan stated that there are a lot of studies that show if a person with mental retardation has a work experience while in high school, he is much more likely to be working five years after he leaves school than those folks who do not.

The statistics vary from state to state, from 10% to 60% of the number of persons who are being served in integrated competitive settings.

Dr. Kiernan said that he would provide the PCMR members with a copy of the report card, comparing six national data sets and ranking states to the level of integrated settings. It is not just MR; one of the things they looked at was how state systems work together, if at all, to increase employment opportunities for people with disabilities.

Copies of Dr. Kiernan’s full presentation are available to members of the Committee on disk.

Kathy Hargett asked why some states do better than others. Dr. Kiernan replied that there is strong leadership at the state level. If they are convinced that it is really important, they will do it. Some states decide that it is too risky for them and they will choose not to do that. The 2000 data shows that about 25% of persons who served in the MRDD system are in integrated settings. The public rehab system has asked the same questions. Why is there a difference? What constitutes the difference? Does it matter whether the state’s structures are the same or different; the rehab agencies, the Department of Labor and the Department of Education.

A member commented that some states are cutting back on people who qualify for services, because of the big crunch on the state budgets.

Dr. Kiernan replied that forty eight to fifty states have a deficit situation and the public rehab system very often will run into something called an “order of selection” where they “only serve the persons with the most severe disabilities.” In some instances, they determine that a person’s mental retardation disability is so severe that they are not eligible for services.

A question and answer session ensued on the increase in total people served, people employed in integrated work settings, job satisfaction, self determination and technology.

Dr. Kiernan said that there are three reasons for the increase. (1) Many states have a waiting list and several states are engaged in litigation, so more money was appropriated to serve folks on the waiting list. (2) A group of individuals came along who were not yet identified and who had not been served in the system, (3) More of the individuals who were coming out of the schools.

People in sheltered work settings are working but there is a subtle difference. There is a parallel that happens in going from institutions into community settings and group homes, etc. Several studies show that the numbers of social interactions that people in integrated work settings have with people without disabilities is greater. But, not every one can go to work every day. We must look at an increase in the quality and the numbers of hours a person works on average.

Persons have to work more than 20 hours a week to get benefits and in order to have some level of economic self sufficiency. Average earnings are about $8, $10 or $12,000 per year. Real employment is not another rung up on the poverty ladder. Real employment is a good quality. We looked at overall earnings from 1985 to 2000 and they sent up. When adjusted for inflation, they dropped. Salary in the integrated work setting is not increasing. A number of people get up to a certain level and they park on this cliff so they do not lose their benefits.

About 150 individuals were followed over time in facility based programs. Their earnings went from $29 to $79 per week. $79 is still quite low. There are some individuals who, either by choice or level of involvement, may not get to work 40 hours per week. So we need a system that supports those folks as well. The Ticket to Work Program is a variation of combining income with benefits, but it stops after five years.

Claudia Coleman observed that technology for highly specialized areas is going to move out into the mainstream and make a huge difference. For example, screens readers for easier accessibility to the internet or other kinds of access to computers. Take that accessibility and put it into your adult senior community that has great intimidations about using technology. Look at college kids and how they get all their things from the dorms to the cars; they use wheelchair access. Technology benefits everybody and the quicker we can get to that stage of thinking about it, the more likely we are going to make differences.

Ms. Will asked if Dr. Kiernan saw a difference between employers in large companies as opposed to small businesses.

He responded that small businesses are probably less flexible about job sharing, etc. If a company employs 100 people as opposed to two, it is more likely to share and change things around a bit. One of our assets in this whole issue of job development, one of our emerging assets, is our aging work force. As our work force ages and the demand for technology and jobs go up, companies are quite willing to question “what do I need, what changes do I need to make to accommodate this work force?” That is our door in. Our allies are our senior work force. When we think about whom our partners are, marketing and design, the larger audience in the workplace is the older worker and they are really placing some demands on the work force. There are some individuals with very significant disabilities who are engaged in employment. What we are talking about is customizing the setting and it all starts with the very first question, what do you want to do when you grow up?

Report of Executive Director

Sally Atwater reported that the Executive Order requires PCMR to submit an annual report to the President of the United States. She distributed copies of some of the past PCMR reports to the members as a guideline in preparing the report. The report must be ready for the press by January 2004. In the past about 10,000 copies have been sent to different constituency groups, parents, etc. at a cost of $25,000-$50,000

She asked the members to be thinking of ways that we could sell our wares which really would make a difference to the general public. We have got to go beyond the disability community and reach out while, at the same time, doing a public awareness campaign and tie it all together.

Ms. Will asked the members to think about the recommendations they would make to the President. She provided a summary of recommendations that she would make:

“Mr. President, we have taken the New Freedom Initiative and have built our work around committees that relate to the basic categories that you addressed. We want to send something to you that constitutes a set of recommendations that will allow people with intellectual disabilities to take a giant step forward in the 21st century.

Mr. President, the Public Awareness Committee thinks that, based on its research, there are enormous problems in terms of public attitudes towards people with disabilities - in schools, in the workplace and in their neighborhoods; therefore, we have certain recommendations that we are going to make to you.

Mr. President, one of the things that we have learned is that these agencies have no coherent understanding or policy with respect to people with intellectual disabilities. We found that we have barriers to employment in the agency next door. A lot of the work, positive innovative work, is really a function of the individuals, on their own, in those government agencies seeking cooperation and collaboration.

We are going to send you a recommendation with respect to the Office of Management and Budget which is the heart of the government that determines policy and budget. We want a recommendation that would call upon that agency to make sure that there is coherent planning and processing across the federal government to ensure that those programs are delivering the result oriented outcomes that you talked about in your campaign and afterwards.

Mr. President, one of the biggest problems that we see is that people with intellectual disabilities have to be poor and that they are not able to go above a certain ceiling in terms of income. They are not allowed to save money and that isolates them. So, one of the things that we are recommending is a Joint Waiver of Medicaid and SSI to get at those problems. We do this in a number of states. We also think that assistive technology is critically important to the results that you want and it needs to be in education, at certain key junctures, and in employment. We need to work with those agencies to help figure out how we are going to pay for assistive technology and how we are going to deliver those services to people at the local level.

Mr. President here are the footnotes that go into great detail about the various agencies and things that could be done.”

Mr. Aponte suggested that the Chair set a timetable for her to receive input form the various subcommittees for specific recommendations. That would produce a set of ideas and concepts to produce the report.

Ms. Will set the date for September 2003.

Mr. Aponte said that if the recommendations are submitted to the Chair in September, then in October and November the Committee could revise and add to the text of the report. He suggested creating a special committee to oversee the publication of the report with input from either the Chairs of the subcommittees or some other individuals who are not members of the committee.

Mr. Gross commented that the Committee not say to the President “just because we have the initiative we are waiting for your input to tell us what to do next.” We should ask “is there anything we have missed. Have we missed the ball or can we improve something for you and make your job easier”?

Ken Lohff felt that profiling PCMR’s constituency is critically important because we need to know what their needs are. We cannot overlook the lion’s share of people, the adults with mental retardation, and try to understand their needs as a segment of the population. We do not want to end up focusing upon the peripheral areas of the population, doing something perhaps that will serve a few people in a meaningful way but overlook and ignore the real voice of the silent majority. We need to find out what is the profile that represents the majority of people with mental retardation who are adults.

A member asked for clarity about the age range that we are talking about; is there an age range or is it from womb to tomb.

Dr. Bouthilet commented that the President will have some very important things on his agenda in 2004. Therefore, the report should not be too lengthy or detailed because the President would not have time to look at it carefully and digest it. The report will be hitting at a politically crucial time in his Presidency.

Mark Gross suggested that the Committee put the report on CD so that the President could view the CD as well.

Ms. Will asked that during the next telephone conference each of the Subcommittee Chairs, working with their Subcommittees, go over all the recommendations and tell us what they need to do in order to have the report fully fleshed out by September. If it is something that will take two years, maybe we have to say “and there will be a continuation, Mr. President.”

A member suggested that using a format similar the New Freedom Initiative report would be a true compliment to what the President has charged us with. Ms. Will concurred. Members will be contacted regarding a date for the next conference call.

The Chair of the Committee thanked everyone for their participation and the meeting was officially adjourned at 4:30 PM on May 13, 2003.