 
Quarterly Meeting Minutes
PRESIDENT’S COMMITTEE ON MENTAL RETARDATION
Quarterly Committee Meeting
September 23-24, 2002
Indian Treaty Room
Old Executive Office Building
17th and Pennsylvania Avenue, N.W.
Washington, DC
ATTENDEES
| PCMR Members: Vijaya L. Appareddy, M.D. PCMR Ex-Officio Members Jo Anne Barnhardt, Secretary, SSA |
PCMR Members Not in Attendance: Bishop William E. Lori, S.T.D. PCMR Staff: Sally Atwater
|
MONDAY, SEPTEMBER 23, 2002
The President’s Committee on Mental Retardation (PCMR) convened on Monday, September 23, 2002, in the Indian Treaty Room, Old Executive Office Building, 17th and Pennsylvania Avenue, N.W., Washington, DC.
Opening Remarks
Sally D. Atwater, Executive Director, PCMR, called the meeting to order at 8:00 a.m., welcoming Committee members and guests.
Ms. Atwater announced that effective October 1, 2002, the PCMR would become a part of the recently created Office on Disability that will be headed by Dr. Margaret G. Giannini, M.D. F.A.A.P. Dr. Giannini was most recently the Principal Deputy Assistant Secretary for Aging at the Administration on Aging, Department of Health and Human Services. She served under the Reagan, Bush and Carter Administrations and was the first Director of the National Institute of Handicapped Research, now known as the National Institute of Disability and Rehabilitative Research.
Greetings and Purpose of the Meeting
Dr. Giannini greeted the new members and guests and expressed her appreciation to the newly selected members for their willingness to serve on the PCMR. She advised the members that Tommy G. Thompson, Secretary, Department of Health and Human Services would conduct the Official Swearing In Ceremony later in the day. Dr. Giannini gave a brief overview of the role of the new Office on Disability in bringing awareness to issues, interest, leadership and focus to the disability community under the President’s New Freedom Initiation. She spoke about the collaborative efforts being made with other government agencies and provided a summary of a report that was submitted to President Bush by DHHS this year on recommendations to improve programs for people with developmental disabilities, as well as programs that have been implemented and initiated for the disability community by other federal departments. Dr. Giannini provided a brief history of the President’s Committee on Mental Retardation (PCMR). She introduced the Honorable Jo Anne Barnhardt, Commissioner of the Social Security Administration, as the first speaker.
Social Security Administration
Commissioner Barnhardt expressed her pleasure at being in attendance and extended congratulations to Dr. Giannini on her new post and to Secretary Tommy G. Thompson for having the vision to create the new Office on Disability. She spoke about the activities of the Social Security Administration (SSA) and how those activities relate to the PCMR’s work. Specifically, she discussed how the SSDI and Ticket to Work Programs work and explained the Incentives to Work Act. Commissioner Barnhardt said SSA is working with the Departments of Labor, Education, and Health and Human Services and that she is dedicated to achieving the President’s goal under the New Freedom Initiative.
Introduction of Committee Members and Staff Recognition of Constituency Group Representatives and other Special Guests
Madeleine Will, Chairperson Designate of the PCMR, welcomed members and guests and asked them to introduce themselves. She spoke about PCMR areas of concern - shortage of special education teachers, care providers for adults, employment, education, loss of medical benefits when employed and transition into the community. Mrs. Will added that the PCMR has a great opportunity to focus on the New Freedom Initiative as it relates to people with mental retardation.
Swearing-In of New Committee Members
Photo Opportunity
Dr. Giannini introduced the Honorable Tommy G. Thompson, Secretary, Department
of Health & Human Services (DHHS).
Secretary Thompson extended his thanks to Dr. Giannini for her passion and dedication to people with disabilities and expressed his affection for and thanks to Sally Atwater for her work and dedication as Executive Director of the PCMR. Secretary Thompson remarked on the importance of the President’s Committee on Mental Retardation to the President of the United States, the people that the Committee will help and to himself. He called upon the PCMR to meet the standards of their compassion and charged them to what they can do to improve the quality of live for people with mental retardation. He asked them to be innovative, excited and push the envelop to make changes for the better.
Secretary Thompson expressed his appreciation to the members of the PCMR for accepting their appointments and the work that they are charged with doing. He administered the Oath of Office to the Committee members and photos were taken of the members and the Secretary.
Office of Special Education and Rehabilitation Services
Dr. Giannini introduced Dr. Robert Pasternack, Assistant Secretary, Office of Special Education and Rehabilitation Services (OSERS), Department of Education.
Secretary Pasternack thanked Dr. Giannini, welcomed the Committee members to the Nation’s Capitol and congratulated them for being chosen by the President of the United States to serve on the Committee. Secretary Pasternack expressed greetings from Roderick R. Paige, Secretary of the Department of Education, whom he was representing at the meeting.
Secretary Pasternack discussed the barriers facing people with disabilities and how the Committee, and other agencies together, can meet the goals set by the President under the New Freedom Initiative. He talked about the incredibly high unemployment rate for adults with disabilities - 70% for the 54 million adults with disabilities has been steady for the last 12 years. He urged improvement in education, employment, housing, transportation and technology. Dr. Pasternak said that he looks forward to working with the Committee, to being a resource and to providing any information that he can to help the Committee be successful in its efforts.
Call to Order
Mrs. Will called the meeting to order. She initiated a discussion to set a date for the next meeting and to the select a Vice Chair. Ballots were provided to the member who would be unavailable on Tuesday, September 24, 2002, the date that votes would be cast. Dr. Bouthilet was asked to explain the procedures for setting dates for the future meetings. He explained that meetings are held on a quarterly basis with four meetings per year, generally lasting one and a half days, and held in Washington, DC. Usually the Chair proposes dates and the Committee members decide what dates would be acceptable. The Chair suggested potential dates to the PCMR members for consideration. The meeting was then recessed for lunch.
Department of Labor
Dr. Giannini reconvened the meeting after lunch and introduced the next speaker, the Honorable Elaine Chao, Secretary, Department of Labor.
Secretary Chao gave special recognition to Windy Smith and her parents and to Sally Atwater for her dedication to the cause for people with disabilities. She also extended her thanks to the new members of the PCMR.
Secretary Chao discussed the Department of Labor’s role in implementing the New Freedom Initiative. The Department has created a permanent Office of Disability Employment Policy (ODEP) which is the only federal office focusing only on disability employment. ODEP’s mission is to provide national leadership in the development of increasing employment opportunities and eliminating barriers. ODEP received a $20 million increase in funding that will help build the capacity of the workforce system to better serve all people, including people with disabilities. It will help people move from institutions and nursing homes into the community to have the opportunity to work; it will draw upon the talents of the faith-based partners to help ODEP in this effort.
Secretary Chao thanked the Committee for all that it is doing and asked members to share their questions and goals with her. She then introduced Mr. Roy Grizzard, Assistant Secretary of Labor, Office of Disability Employment Policy.
Department of Labor Office of Disability Employment Policy
Assistant Secretary Grizzard expressed his thanks to the PCMR and Secretary Chao for the opportunity to attend the PCMR meeting and expressed his passion for helping people with mental retardation. Mr. Grizzard talked about ODEP’s role which is to help people with disabilities enter the work force and to realize that they have talents, gifts and abilities that they can use to enhance the country, the economy and the communities they live in. Mr. Grizzard said that his office wants to leverage ODEP/PCMR future collaboration and resources to bring people with disabilities into the work force. He pledged the support of the ODEP to achieve this goal.
Department of Health & Human Services
Dr. Giannini introduced Claude Allen, Deputy Secretary, Department of Health & Human Services, who has a special interest in minority health and disparities and takes the lead in HHS for the New Freedom Initiative.
Deputy Secretary Allen discussed how HHS is partnering with the Department of Labor, Department of Education, Department of Housing, Social Security Administration, and other federal departments to implement the President’s New Freedom Initiative and develop a comprehensive plan to tear down the barriers facing people with disabilities. HHS is addressing work force shortages, health care services, home and community- based services, employment, technical assistance, respite care, quality review of community placement and affordable housing.
Ethics Information to New Committee
Dr. Giannini introduced Karen Kucik, Attorney and Adviser in the Office of General Counsel Ethics Division. Ms. Kucik explained the ethics rules and regulations to Committee members and discussed how they could prevent and resolve conflicts of interest. She discussed the prohibition on fund raising, procedures on how to file financial disclosure reports and other ethics statutes and regulations.
President George W. Bush’s New Freedom Initiative
Troy Justensen, Associate Director for Domestic Policy, Domestic Policy
Council at the White House, discussed the President’s New Freedom
Initiative and increasing opportunities for people with disabilities, including
people with mental retardation.
He mentioned the four major components of the Initiative: (1) Increasing
the educational opportunities, (2) Increasing employment opportunities (3)
Increasing access to and affordability of assistive technology devices,
services and universal design, and (4) Increasing the opportunity to integrated
community living and communities of individual choice.
In 2002 President Bush called for $65 million to be given to the National Institute on Disability Rehabilitation Research (NIDRR) at the Department of Education, to increase the availability of assistive technology. Last year and again this year, the President called for a $1 billion increase in funding for the Individuals with Disabilities Education Act.
In response to the Olmstead decision, the President issued an Executive Order designating ten federal agencies to examine their policies, practices and procedures, and to make recommendations on how to examine and improve coordination among federal agencies. The President charged the Secretary of Health & Human Services, and designated HHS staff to provide the report - Delivering on Promise –, which contained about 400 suggestions on how to improve services to people with disabilities at the federal level. The main issue in the suggestions was transportation.
On July 26, 2002, President Bush asked upon Congress to fund transportation pilot programs and to match incentive programs to the tune of $145 million - $100 million for pilot programs and $45 million for the incentive program. Unfortunately, the programs were not funded in FY 2002 or in 2003 and they are crucial steps to increasing transportation usability, regular transit services and para-transit services.
Mr. Justensen announced that on October 16th a new government website will be launched entitled “DisabilityInfo.gov” which will be a one-stop portal for people with disabilities, service providers, family members and others who are interested in accessing all federal services and programs that are available. The website will be updated continually. It will be available for access on National Mentoring Day of People with Disabilities.
Administration on Developmental Disabilities (ADD)
The next speaker was Pat Morrissey, Commissioner, Administration on Developmental Disabilities (ADD), who was introduced by Dr. Giannini.
Commissioner Morrissey discussed the major points of the ADD mission: Making health, education, early intervention, employment, housing, transportation, recreation, transition, integration, protection of rights, and promotion of the quality of life available to people with developmental disabilities commonplace. Under the Developmental Disabilities Act, the ADD and the Administration are charged with collaborating with other federal agencies to bring about these things. The President has decided to make the ADD’s ability to leverage other federal dollars as one of the benchmarks for success.
Four programs currently exist under the Developmental Disabilities Act:
- State Councils on Developmental Disabilities.
- University Centers for Excellence on Developmental Disabilities.
- Protection and Advocacy Agencies.
- Projects of National Significance that are administered by ADD.
ADD has partnered with the CDC, Social Security Administration, Department of Education, Department of Labor and self-advocates. Pending initiatives are varied:
- The Commission’s Forum, which is scheduled for February 2003,
will focus upon promising practices related to people with developmental
disabilities and ways for them to live in their communities as well as
the direct care issue.
- The TANF 360, a one-stop concept applied to families who are eligible
for welfare and have a family member with a disability.
- The Inclusive ChildCare Initiative is one that will look at state policies
on child care and young children with developmental disabilities.
- The Adoption Initiative will focus on one region of the country and
training community and faith based organizations on how to develop adoption
campaigns for children with disabilities.
- The Micro-business Initiative with the Office of Community Services
and the Department of Labor is an attempt to promote more opportunities
for people with disabilities to become entrepreneurs.
- The Special Families and Friends Program will be a program to help encourage
commercial retailers to welcome families who have children with disabilities
when they go shopping.
- A Housing Initiative is being discussed.
- Public Awareness.
Charge to the Committee; Working Segment
Mrs. Will asked that the Committee focus on two priorities: (1) What the Committee wants to accomplish, and 2) structure - how to attack the issues. She mentioned that PCMR’s report to the President is due September 2003 which doesn’t allow much time to prepare a report.
The Committee exchanged ideas on how to identify and tear down barriers to full community integration. Several areas of focus were discussed:
- Employment
- Dual diagnosis
- Education
- Mental Health/Mental Retardation
- Needs of persons with profound mental retardation
- A satisfying future for persons with mental retardation
- Labeling
- Placement
- Standards
- Assessments and alternative assessments,
- No child left behind … what does this mean for a child with mental retardation?
- Opinions of persons with mental retardation and their family members on what they think the PCMR focus should be
- A public awareness campaign to change attitudinal barriers.
- Streamline and simplify the system for parents to get the support they need
- Family support and family services
- Transition
Ms. Will led a discussion on how to address the numerous barriers facing people with mental retardation. The Committee agreed to create four subcommittees consisting of four to five members each: (1) Education and Transition, (2) Family Services and Supports, (3) Public Awareness and (4) Employment.
TUESDAY, SEPTEMBER 24, 2002
Dr. Giannini reconvened the meeting on Tuesday, September 24, 2002 and introduced Dallas Rob Sweezy, Director of Public Affairs for the Centers for Medicare and Medicaid Services (CMS).
Centers for Medicare & Medicaid Services
Mr. Sweezy provided information on the CMS budget/spending and discussed some of its initiatives. CMS has the largest budget in the Federal government except for the Social Security Administration. The proposed budget for 2003 is $429 billion dollars. About $254 billion is for the Medicare Program and roughly $158 billion for Medicaid Program Expenditures for the State Children’s Health Insurance Program (S-CHIP), which provides direct health care for low-income children. The states’ share is projected to be approximately $120 billion in 2003. In the next ten years, the Medicare budget alone is projected to reach about $500 billion, a growth of about 8 percent, which comes to a $1 trillion dollar budget for the two Programs.
Mr. Sweezy believes that Medicare recipients need options similar to those available to people who are under 65 through the private sector. One of the President’s initiatives is to develop a Medicare program similar to the Federal Employees Insurance Program with options for a fee-for-service plan or, to go into a private paid insurance plan, such as the Medicare Plus Choice Program. If the President’s budget for the next fiscal year is approved, CMS hopes to start the modernization next year.
A Medicare prescription drug benefit is another priority of the President. CMS has taken a number of steps to start the process. If a drug benefit plan were passed, it would take two or three years for CMS to implement it.
Another proposal is a Medicare Low Income Assistance Program. About $8 billion is funded over the next three years to the states so they can reach Medicare populations up to 150 percent of poverty level.
Part of the Low Income Assistance Program is a Pharmacy Plus Model Waiver that will allow states to develop their own plans to reach populations up to 200 percent of poverty. If a senior or a person with a disability is at 100 or 150 percent of poverty level, this program would allow the states with a 90/10 Federal match to provide that prescription drug benefit. The Pharmacy Plus Waiver will also allow the states to expand their own Prescription drug benefit to Medicare beneficiaries, not just Medicaid eligible people.
One of the President’s, and Secretary Thompson’s, key goals is to streamline and find a common sense approach to regulatory reform for the Department and particularly for the Centers for Medicare and Medicaid Services.
Mr. Sweezy elaborated on CMS’s Open Door categories -- nursing homes, doctors, nurses, allied health and end stage renal disease, home care, hospice and durable medical equipment, nursing home quality and transition -- and how CMS is dealing with those issues. All of these categories are important steps as part of the President’s New Freedom Initiative.
He referred to charts he had distributed prior to the meeting. They reflect the number of home and community-based waivers that CMS has granted states over the years, home and community-based services expenditures for mental retardation, developmental disabilities through 1988 and the number of intermediate care facilities or institutions that CMS had funded in 1982.
Mr. Sweezy also mentioned that a pilot PPO program is under consideration for Medicare beneficiaries and people with disabilities who don’t quality for Medicaid.
In response to a question by Dr. Appareddy regarding funding for applicants who have mental health problems, Mr. Sweezy said that funding for mental health comes from different sources. Medicare has very little mental health benefits, but there are some states that choose to cover mental heath through the Medicaid Program.
Introductions
Dr. Giannini introduced Paul Marchand, Assistant Executive Director of Policy and Advocacy, The Arc. Other individuals from constituency groups introduced themselves: Susan Goodman of the National Down Syndrome Congress and Ron Vederman of Special Olympics International.
Acknowledgment of Birthday
Mrs. Will acknowledged Windy Smith’s 29th birthday and presented her with a gift from the PCMR. The committee members sang “Happy Birthday” to her. Windy asked for some time on the agenda to have her father speak and Ms. Will indicated that time would be made for her father.
The Committee members then voted via anonymous ballot for the PCMR Vice Chairperson. After a vote count, Mrs. Will announced that Dr. Vijaya Appareddy was elected as PCMR Vice Chairperson.
Name Change
Dr. David Smith made a presentation to the Committee on behalf of his daughter, Windy, on the subject of changing the name of the PCMR because many people believe that the words “mental retardation” are offensive and hurtful. A discussion ensued with committee members offering support of and in opposition to a name change. Ms. Will suggested that Committee members get input from self-advocates and others and that a group or panel be created to discuss the issue. The panel could then make a final recommendation to the Committee.
Brenda Leath suggested adding technology to the categories of focus that the Committee had discussed on Monday.
Ms. Will restated the four categories under consideration by the PCMR: Education, Employment, Family Services and Public Awareness. After discussion, Committee members agreed to establish the following Subcommittees:
Subcommittee on Education
Annette Talis
Olivia Colvin
Kim Porter-Hoppe
Mark Gross
Subcommittee on Family Services
Karen Staley
Brenda Leath
Nancy Blanchard
Vijaya Appareddy, M.D.
Alvaro Marin
Subcommittee on Public Awareness
Kathy Hargett
Mary Bruene
Brenda Leath
Kim Porter-Hoppe
Kenneth Lohff
Windy Smith
Subcommittee on Employment
Kenneth Lohff
Mark Gross
Claudia Coleman (?)
Office of Special Education Programs
Dr. Giannini introduced Stephanie Smith Lee, Director of the Office of Special Education Programs (OSEP) which is a part of the Department of Education’s Office of Special Education and Rehabilitative Services (OSERS).
Mrs. Lee thanked the PCMR and expressed her delight at being with the Committee as it embarks on efforts to assist the President in shaping a new vision for the future of people with mental retardation.
Mrs. Lee recognized the wide spectrum of experience and expertise the Committee members have in education, employment, religion, law and many other areas that are going to serve them well as they perform their work for the Committee. She stated that the Committee is also fortunate to have as its Chair, Madeleine Will, who has been an outstanding visionary leader on behalf of children and adults with disabilities for almost 30 years.
Mrs. Lee presented OSEP’s mission and explained how OSEP administers the Individual with Disabilities Education Act (IDEA). OSEP provides leadership and financial support to assist states and local districts in the education of students with disabilities. It monitors states to ensure that they know their public agencies and continues to implement programs that are consistent with Federal requirements and designs to improve results for children. OSEP also supports a systemic program of research, demonstration, outreach, technology development, technical assistant, training, evaluation and service delivery.
Mrs. Lee highlighted issues regarding IDEA that are of particular interest to children with mental retardation and their families. A very promising opportunity for students with disabilities is the passage and implementation of the No Child Left Behind Act. Under this legislation, states and schools will be required to de-aggregate or separate the data on testing and will have to report specifically on students with disabilities and their progress on these assessments. OSEP is working very hard to align IDEA with No Child Left Behind and ensure that what they are doing in special education and general education mesh.
Working on aligning these systems will continue, as IDEA is re-authorized.
Part B of IDEA, the state grant program that covers school-aged students,
is permanently authorized. Part C, which covers early intervention for infants
and toddlers, and Part D, which provides discretionary programs for research
and technical assistance, are re-authorized every 5 years. Capitol Hill,
the White House and the Department of Education are preparing for re-authorization.
Mrs. Lee reminded the group that in October 2001 President Bush appointed
a Commission on Excellence in Special Education. The Commission’s
report, issued in July 2002, can be accessed through the Department of Education’s
website (www.ed.gov). OSEP has solicited and is still accepting comments
on the Commission’s Report.
PCMR was invited to submit comments on IDEA re-authorization. The Senate and House of Representatives held a series of hearings over the past year to examine issues related to IDEA re-authorization.
Mrs. Lee named the four educational principles of the No Child Left Behind proposal: Accountability, Focusing on What Works, Empowering Parents and Increasing Local Flexibility.
A question and answer session was held on recommendations for issues that the Committee could focus on: Funds for research, assistive technology and incentives for the states to conduct self-assessments.
Disabilities Centers for Disease Control and Prevention
Dr. Giannini introduced Dr. Edward Brann, Director, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC).
Dr. Brann advised the Committee that The National Center on Birth Defects and Developmental Disabilities (NCBDDD) is the newest of the 11 centers at the CDC. Dr. Brann works on primary prevention and the health and wellness of persons living with disabilities.
Dr. Brann spoke on the following CDC topics:
Autism
The CDC has launched the Autism Information Center, which focuses on the activities of federal and federally-funded programs, and the resources offered by these programs. The center includes information about autism spectrum disorders (ASDs), the CDC and other federal activities, state activities funded by the CDC, education, services, research and resources, and activities to help children use the Internet to learn more about ASDs.
Definition of Mental Retardation
Mental retardation is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive behavior. This disability originates before age 18.
Five assumptions are essential to the application of this definition:
- Limitations in present functioning must be considered within the context of community environments typical of the individual's age, peers and culture.
- Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors.
- Within an individual, limitations often coexist with strengths.
- An important purpose of describing limitations is to develop a profile of needed supports.
- With appropriate personalized supports over a sustained period, the life functioning of the person with mental retardation generally will improve.
IQ
Significant IQ limitation is defined as two or more standard deviations (SDs) below the mean for the test administered. The examiner can use the standard error of measurement when considering the diagnosis. Standard errors vary from test to test and for different ages within a specific test. Adaptive behavior can be assessed using various instruments that can yield scores indicating performance in terms of deviation scores such as SDs, quartiles, z-scores, etc.
ICD or DSM has not yet adopted the 10th revision of the AAMR DX system, but it is expected. The manual discusses similarities and differences of this system with International Classification of Functioning, Disability, and Health (ICF).
The major work involved after diagnosis involves the development of a “system of supports” for the diagnosed individual by an interdisciplinary team.
Legacy for Children
The CDC has initiated Legacy for Children, a set of longitudinal, randomized, controlled studies examining the potential for improving child developmental outcomes through parenting programs designed to promote self-efficacy and a sense of community. Legacy for Children™ endeavors to promote optimal child outcomes by improving child development through promoting self-efficacy in parents. Parental self-efficacy helps parents understand that their behavior can positively influence the development of their children and give them the chance they truly deserve.
ICF Conceptional Model
The Collaborating Center is also responsible in North America for the family of ICD classifications, which includes the International Classification of Functioning, Disability, and Health (ICF). The ICF Conceptional Model focuses on categories of functioning rather than on what caused the disability.
Healthy People 2010
Healthy People 2010 Objectives for People with Disabilities. The 1979 U.S. Surgeon General's Report on Health Promotion and Disease Prevention, Healthy People established the Healthy People initiative. Under this initiative, the U.S. health plan is updated every 10 years. Recommendations made during the Healthy People 2000 progress review included developing health objectives for people with disabilities; and examining their health and receipt of clinical preventive services.
Building on those recommendations, people with disabilities are represented in 207 of the 467 objectives that span 21 of the 28 Healthy People 2010 chapters. However, data on people with disabilities are available for only 88 of those 207 objectives. Chapter 6 of the plan specifically contains 13 objectives that focus on promoting the health and well being of children and adults with disabilities across their life span. Chapter 6 is co-led by the CDC’s, Disability and Health Team and the National Institute on Disability and Rehabilitation Research at the U.S. Department of Education. Ongoing activities include the following:
- Achieving the 13 Chapter 6 objectives. [HP2010 National Forum Announcement]
- Increasing data on the health of people with disabilities
- Assessing data for people with disabilities among the 10 Leading Health Indicators
The CDC encourages providers of healthcare services to look at aspects of the individual rather than the disabling condition.
ADJOURNMENT
Sally Atwater thanked the members for their service and Madeline Will informed the members that they would be contacted regarding the PCMR budget and the process for conducting future Committee business. The meeting was adjourned at 10:45 a.m.
