1
MINUTES
President’s Committee
for
People with Intellectual Disabilities
Quarterly Committee Meeting
September 15-16, 2005
6th Floor East Auditorium
AerospaceCenter
901 D Street, S.W.
Washington, D.C. 20447
ATTENDEESAT THE QUARTERLY MEETING OF THE PRESIDENT’S COMMITTEE FOR PEOPLE WITH INTELLECTUAL DISABILITIES (PCPID)
PCPID Civilian Members:
Madeleine C. Will, Chair
Vijaya L. Appareddy, M.D.
James T. Brett
Claudia L. Coleman
Olivia R. Colvin
Kathy Hargett
Kenneth E. Lohff
Edward R. Mambruno
Reverend Lon R. Solomon
Karen L. Staley
Annette M. Talis
PCPID Ex Officio Members:
Margaret Giannini, M.D., F.A.A.P.
Representing The Honorable Michael O. Leavitt, HHS
Mark Gross
Representing The Honorable Alberto R. Gonzales, DoJ
Troy Justesen
Representing The Honorable Margaret Spellings, ED
Roy Grizzard, Jr., Ed.D.
Representing The Honorable Elaine L. Chao, DoL
Susan Goodman
Representing The Honorable Jo Ann Barnhart, SSA
Mary Kay Mauren, Esquire
Representing The Honorable Cari Dominguez, EEOC
Milton Aponte
Representing The Honorable Lex Friedman, NCD
Henry Hager
Representing The Honorable Carlos M. Gutierrez, DoC
PCPID Federal Staff:
Sally Atwater, Executive Director
Ericka Alston, Administrative Assistant
George Bouthilet, Ph.D., Research Director
Laverdia Roach, Special Assistant
Lena Stone, Program Specialist
Sheila Whittaker, Budget Officer
PCPID Invited Speakers:
Robert Fletcher, D.S.W.
Chief Executive Officer
National Association for the Dually Diagnosed
Remarks: Dual Diagnosis of People with Intellectual Disabilities
Robert E. Robertson
Director
Educational and Workforce Income
Security
General Accounting Office
Remarks: General Accounting Office report to
Congressional Committee on Federal Disability Assistance
Steven James Tingus, M.S., C.Phil.
Director
National Institute on Disability and Rehabilitation Research
Office of Special Education and Rehabilitative Services
Remarks: NIDRRLongRange Plan for Disability
and Rehabilitation Research
Edward J. Kame’enui, Ph.D.
Commissioner
National Center for Special Education Research
Institute of Education Sciences
U.S. Department of Education
Remarks: NationalCenter for Special Education Research and
How it Relates to Intellectual Disabilities
James T. Brett
Member
President’s Committee for People with
Intellectual Disabilities
Moderator, Panel Discussion: Dental Care for People with Intellectual Disabilities
Sanford Fenton, D.D.S.
Professor, University of Tennessee
College of Dentistry at Memphis
Panelist
A. Conan C. Davis, D.M.P., M.P.H.
Chief Dental Officer
Centers for Medicare and Medicaid
Panelist
Raymond Lala, D.D.S.
Dental Officer
Division of Medicine and Dentistry
Bureau of Health Professions
Health Resources and Services Administration
USDepartment of Health and HumanServices
Panelist
Matthew Holder, M.D., M.B.A.
Executive Director
AmericanAcademy of Developmental
Medicine and Dentistry
Panelist
Richard Fox
Personal Security Specialist
Administration for Children and Families
Remarks: Emergency Preparedness
Anita S. Everett, M.D., D.F.A.P.A.
Senior Medical Advisor
U.S. Department of Health and Human
Services
Substance Abuse Mental Health Services
Remarks: Medicare Prescription Drug Coverage
David Chatel
Acting Director of Patient Advocacy
Centers for Medicare and Medicaid
Remarks: Medicare Prescription Drug Coverage:
Outreach to People with Intellectual Disabilities
John P. Benison
Senior Policy Analyst
Office of the Secretary
U.S. Department of Transportation
Remarks: Emergency Transportation Preparedness Website
For People with Intellectual Disabilities
Margaret J. Giannini, M.D., F.A.A.P.
Director
Office on Disability
US Department of Health and Human Services
Remarks: Report on White House Conference on
Aging Mini-Conference on Disability and Surgeon
General’s Call to Action
Josephine B. Robinson
Director
Office on Community Service
Administration for Children andFamilies
U.S. Department of Health and Human Services
Remarks: Assets for Independence Demonstration Program
Kathy Hargett
Member
President’s Committee for People with
Intellectual Disabilities
Remarks: Emergency Preparedness for People with
Intellectual Disabilities
Karen Staley
Member
President’s Committee for People with
IntellectualDisabilities
Remarks: Direct Support Professionals Challenges
PCPID Guests:
Julie Allen,ADA
Bill Coffin, ACF
Sheila Drake, GAO
Maura Farrell, National Fragile X Foundation
Karen Fay, CFXF
Susan Goodman, SSA
Claudia Gordon, DoT
Roy Grizzard, DoL
Ron Henry, Senate of PA
Scott Knittle, HUD
Monica R. Mack, Interpreter
Mary Kay Mauren, EEOC
April Myers, ADD
M.L. OsterGranite, NICHD/IH
Vivian Owusu, NIDRR
Nichole Park
Jeff Pattison, IES/NCSER
Steve Rhatigan
Bob Robertson, GAO
Linda Russell, HHS
Reid Schuster
Nancy Skaggs, DoL
Jack Schutzer
LaMonica Shelton, CNCS
Audry Spolarich, Conquer Fragile X Foundation
Michele Tennery, CMS
Steven J. Tingus, NIDRR
Mark Trapani, GAO
MinutesPresident’s Committee for People with Intellectual Disabilities
September 15-16, 2005
Thursday, September 15, 2005
Madeline Will, Chair, convened the quarterly meeting of the President’s Committee for People with Intellectual Disabilities (PCPID/Committee) at 9:00 A.M. on September 15, 2005. She announced that the terms of ten appointed civilian members had expired in May 2005 and the remaining eleven appointed members were in attendance at today’s meeting. She stated that the eleven active members would be a bridge from one committee to the newly constituted committee next year and would carry out the institutional memory of what has transpired at PCPID in the past several years. The Chair announced that the focus of the meeting would be the five topics: (1) Comprehensive Health Care; (2) Dental Care; (3) Aging and Housing; (4) Direct Support Professionals; and (5) Emergency Preparedness that the Committee had been working on and to continue to refine the recommendations that the Committee will make in its report to the President later this year.
The Chair called for approval of the minutes of the last meeting and approval of the agenda for the current meeting. A voice vote was taken on each of the documents. Eachwas approved unanimously.
The Chair asked Committee Member, Dr. Appareddy, to introduce the first speaker, Dr. Robert Fletcher, CEO, National Association for the Dually Diagnosed. Dr. Fletcher’s presentationaddressed thedefinition of dual diagnosis, outstanding clinical issues, program and policy matters and the NADD newly developed diagnostic manual. The NADD is a not-for-profit membership organization with a primary focus on education and training. Its book publishing company has the largest assortmentof educational material worldwide on dual diagnosis.
Dual diagnosis is a coexistence of two conditions—mental illness (MI) and intellectual disability (ID). The concept includes recognition, assessment, and diagnosis of both intellectual disability and psychiatric disorders. An intellectual disability does not cause maladaptive behavior. According to the American Association on Mental Retardation, two percent of the U.S. population has mental retardation. The NADD estimates that 33 percent of people with an intellectual disability also have psychopathology, which means that approximately two million in the U.S. have a dual diagnosis.
The differencesbetween an intellectual disability and a psychiatric disorder are: intellectual disability is a sub-average intelligence; mental illness has no bearing on intelligence. According to the DSM-IV, the incidence of a psychiatric disorder is from 16 to 20 percent and intellectual disability is between one and two percent. Intellectual disability may occur before birth, at birth, immediately after birth or before the age of 18 and is considered to be permanent. Adjustment is secondary to the intellectual disability. Mental illness usually occurs in late adolescence and is episodic, sometimes reversible and often cyclical. A person with mental illness often exhibits behaviors that are irrational and sometimes psychotic. Adjustment disorders are secondary to the existence of a psychiatric disorder.
Dr. Fletcher discussed the psychiatric model which looks at the possibility of a coexistent psychiatric disorder and the behavioral model which looks at maladaptive behaviors that are learned. People who have psychiatric disorders and intellectual disabilities rarely manifest only symptoms and signs of a specific psychiatric disorder; they also display an array of other behaviors that may be learned behaviors or a function of communicative intent.
Comprehensive assessment is the key to diagnosis and treatment. An individual problem may have a psychiatric root which needs to be looked at very carefully with an effort to tease out whatit is coming from what, what causes what, what’s the underlying, very difficult and, in many cases, impossible to determine.The idea that people with ID are mentally ill is a myth. Individuals with ID cannot have a verifiable mental illness. Assessments should be comprehensive and include a persons’ biology, medical conditions, medications, family, environment, school, home, recreation, and all variables and psyche on how the person feels and thinks. Another myth is that persons with ID are not responsive to psychotherapy. There is increasing acceptance of the use of various types of psychotherapy for persons with ID. The idea that medication treatment is used to control maladaptive behaviors is another myth. Appropriate targets for medication treatment are changes in the neurophysiological function associated with the underlying psychiatric disorder, not the symptoms of self-injurious behavior.
Dr. Fletcher discussed social policy issues that are associated with dual diagnosis. He asked the Committee to consider a set of guiding principles in policy that he had developed: (1) Services should be determined on the basis of a comprehensive assessment of both mental health issues (including developmental issues) as well as other needs such as medical; (2) Services should be based on individual needs, not solely on diagnosis; (3) services need to be provided in a collaborative fashion, between the mental health and development disability system.
In closing, Dr. Fletcher mentioned that the NADD, in association with the American Psychiatric Association, is developing a companion to the DSM-IV that will facilitate a more accurate psychiatric diagnosis in persons with ID. The DSM-ID will come out in 2010 and the DSM-IV is expected to be released in about one year.
The Chair proposed that Dr. Appareddy chair a subcommittee that would work with Dr. Fletcher and others to come up with a set of recommendations that the PCPID might have. She also recommended to members that if they had additional questions they should submit them in writing via email to Dr. Fletcher. Dr. Fletcher agreed to respond to all questions related to his presentation.
The Chair called upon the second guest speaker, Robert E. Robertson, Director, Educational and Workforce Income Security, General Accounting Office. Mr. Robertson spoke about the General Accounting Office Report to the Congressional Committee on Federal Disability Assistance. The GAO is the investigative arm of the Congress. The mission of the GAO is to ensure that government operations are strengthened and accountability to the public is improved. Its goals are implemented by providing a variety of nonpartisan, objective analyses of functions, programs and anything else that has to do with the federal government. While the GAO is a relatively small group, it makes a significant impact. In 2004, over $44 billion was saved in connection with the work that GAO didin over 1000 non-financial accomplishments associated with their work. Mr. Robertson noted that the federal investment in disability programs is significant. Just two examples are the Social Security Administration (SSA) which spent $91 billion for ten million people with disabilities in 2003 and the Veterans Administration which spent $23 billion for 2.8 million veterans. The SSA has predicted a 30 percent increase in the number of people with disabilities in their program between 2002 and 2010. All federal disability programs are vulnerable to fraud, waste, abuse and mismanagement. Many do not reflect advances in medicineand assistive technology, or address changes in the economy. Other focus areas are the amount of time it takes to process claims and incorporate people with disabilities into the workforce.
The next topic of discussion was the June 2005 report which provides an inventory of all federal disability programs and provides information on the challenges they face. The primary objectives of the report were to get an inventory of all federal programs that provide disability benefits to people with disabilities, describe those programs, identify some of the challenges that the programs faced, and to develop a framework of factors that could be used by policymakers and program administrators. The GAO study found that over 20 federal agencies oversee 200 programs, almost half of which are almost exclusively for people with disabilities. Seven agencies administer 28 programs that provide employment related services to people with disabilities. A wider variety of services are offered, the largest of which are employment-related and medical care assistance. In fiscal year 2003, $120 billion was spent on programs that were devoted exclusively to serving people with disabilities. Some of the problems found by the study were: (1) processing applications; (2) providing timely benefits and services; (3) complex eligibility requirements; (4) planning for growth; (5) communication and coordination among the agencies. The 2004 Report categorizes a number of different factors in three general areas: program design, fiscal implementations, and feasibility.
Both the SSA and the VA have begun efforts to have outside organizations review their eligibility criteria and address the eligibility criteria and management programs. Mr. Robertson emphasized that the GAO does not make policy; it acts in an advisory role and provides information and analysis to Congress.
Following the presentation by Mr. Robertson, the Chair called for a question and answer period to permit members of the Committee to interact with the speaker. She also asked Mr. Robertson for a copy of the list of federal programs serving people with disabilities.
The Chair introduced the next guest speaker, Stephen Tingus, Chief Advisor to the Assistant Secretary for Special Education and Rehabilitative Services, U.S. Department of Education. Mr. Tingus spoke about the National Institute on Disability and Rehabilitation Research’s (NIDRR) Long Range Plan for Disability and Rehabilitation Research released for public comment on July 27, 2005 and NIDRR’s commitment to community inclusion and technology for people with intellectual disabilities. In keeping with the President’s New Freedom Initiative, the plan focuses on three major research domains: (1) employment; (2) how the research domains function, and (3) participation and community living. As part of the long-range plan, NIDRR sees the need to further its mission to improve the generation and promotion of new knowledge and to guide policy to help society develop new supports for people with disabilities. Part of the mission is to further the goals of the Olmstead decision, i.e., community living, access to education, employment, technology, transportation and health care.
NIDRR’s 2005 budget for people with cognitive and intellectual disabilities is $5 million. In 2004, the Institute awarded the first Research and Engineering Center (REC) on cognitive technologies to the Coleman Institute at the University of Colorado. NIDRR will be devoting significant attention to people with intellectual, cognitive and mental health disabilities. In conjunction with SAMSHA, this year, $1.3 million will be awarded for health care for people with psychiatric disabilities.
Mr. Tingus discussed employment related aspects for people with intellectual and cognitive disabilities and the impact of Hurricane Katrina on people with intellection and cognitive disabilities, many of whom have be placed in institutions. He pledged NIDRR’s commitment to promote new policies for people with cognitive disabilities. NIDRR will take the lead in an effort to de-institutionalize people with disabilities. In conjunction with the Department of Labor, NIDRR is in the process of getting approval to provide funding to individuals with disabilities that were affected by the hurricane.
Emergency preparedness has taken a new emphasis and NIDRR wants to work with Committee to develop an aggressive research agenda, combining emergency preparedness and access to direct care services.
Mr. Tingus invited questions from Committee members and guests. Mr. Mambruno inquired about the possibility of a temporarily waiver of laws to better serve disabled victims of hurricane Katrina who have been placed in institutions. Mr. Tingus replied that the only waivers he is aware of are for special education. John Hager, Assistant Secretary for Special Education and Rehabilitative Services, has authorized Mr. Tingus to work with Homeland Security Secretary Chertof to establish the first research subcommittee for emergency preparedness, a very large, long-term commitment.
Mark Gross asked Mr. Tingus if there are any studies that NIDRR plans to fund that will address group housing availability. Mr. Tingus conveyed that NIDRR will possibly look at some best practices of what types of living situations are working and which states are more ahead on that issue. He suggested that NIDRR might develop an RTC (research training center or REC (research and engineering center).
The Chair asked if NIDRR could take the lead in funding a project to identify existing fragmentation across federal programs. Mr. Tingus offered to commission a survey of the federal agencies to see where silos do not exist. NIDRR is developing interagency work with ODEP, HHS, CDC and the FDA with regard to access to medical devices and biologicals for all people with disabilities.
The Chair introduced Dr. Edward J. Dame’enui, Commissioner, NationalCenter for Special Education Research (NCSER). Dr. Dame’enui was invited to speak about the NCSER and how it relates to people with intellectual disabilities. The NCSERis one of four centers in the Institute of Education Sciences. It was established by Congress on December 4, 2004and is characterized as the research and statistical arm for the Department of Education. The Centerwill apply a rigorous, systematic and objective methodology to obtain reliable and valid knowledge to improve the development and education of children with special needs. The long term goal is to encourage science education. Current funding is about $512 million of which $91 million is targeted for assessment statistics, $94 million for NAP, $25 million to establish a statewide longitudinal database to track children’s growth and development. Ten milliondollars will address studies and evaluation, including an evaluation of the impact of IDEA and how it can be improved. $66 million will be for a regional lab.