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MINUTESPresident’s Committee
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ATTENDEES AT THE QUARTERLY MEETING OF THE PRESIDENT’S COMMITTEE FOR PEOPLE WITH INTELLECTUAL DISABILITIES (PCPID) PCPID Civilian Members: Madeleine C. Will, Chair PCPID Ex Officio Members: Margaret Giannini, M.D., F.A.A.P. PCPID Federal Staff: Sally Atwater, Executive Director PCPID Invited Speakers: Robert Fletcher, D.S.W. Robert E. Robertson Steven James Tingus, M.S., C.Phil. Edward J. Kame’enui, Ph.D. James T. Brett Sanford Fenton, D.D.S. A. Conan C. Davis, D.M.P., M.P.H. Raymond Lala, D.D.S. Matthew Holder, M.D., M.B.A. Richard Fox Anita S. Everett, M.D., D.F.A.P.A. David Chatel John P. Benison Margaret J. Giannini, M.D., F.A.A.P. Josephine B. Robinson Kathy Hargett Karen Staley PCPID Guests: Julie Allen,ADA
Minutes President’s Committee for People with Intellectual Disabilities 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. Each was 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 presentation addressed the definition 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 assortment of 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 differences between 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 what it 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 did in 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 medicine and 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. 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. 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, National Center 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 NCSER is one of four centers in the Institute of Education Sciences. It was established by Congress on December 4, 2004 and is characterized as the research and statistical arm for the Department of Education. The Center will 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 million dollars 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. Some Committee members expressed concern that disabled children would be labeled for the research; that too much emphasis is being placed on scientifically based studies; and specially designed instruction doesn’t always work. Chairperson Will noted that one of the recommendations in the PCPID 2004 Report to the President was a needed focus on universal design and adapted curriculum for persons with intellectual disabilities. Dr. Dame’enui said that he will try to guide the Department of Education to look at the architecture of information systems, symbolic systems and physical systems to understand what can be universal for all kids and what can be special for some kids. In closing, Dr. Dame’enui announced that on October 14th, the Center is launching an event that will be announced to the public. His hope is that this event will start a process by which the public will provide input on various issues regarding education for people with disabilities. Dr. Roy Grizzard discussed the Interagency Coordinating Council’s (ICC) report to the President on strategies for preparation for emergencies for people with disabilities. The ICC has developed a template for preparing the workplace for emergencies. The template is accessible on the DOL.gov/ODEP website. James Brett, Committee Member, moderated the Panel Discussion on Dental Care for People with Intellectual Disabilities. Mr. Brett introduced panelists Dr. Matthew Holder, Executive Director of the American Academy of Developmental Medicine and Dentistry, Dr. A. Conan Davis, Chief Dental Officer, CMS, Dr. Sanford Fenton, Professor, University of Tennessee College of Dentistry, and Dr. Raymond Lala, Central Officer, Division of Medicine and Dentistry, Bureau of Health Professions, Health Resources and Services Administration. Mr. Brett also provided statistics regarding dental care for people with intellectual disabilities: A Special Olympics study shows that 27 percent of the population believes that people with intellectual disabilities receive better care than the general population. Thirty-nine percent believes that they receive the same care as the general population. Mr. Brett also discussed the three major categories of the barriers that people with intellectual disabilities are faced with: insurance and financial challenges; patient access; and lack of specialized training and support of dental professionals. Panelist Matt Holder explained some of the issues on which the PCPID Dental Care Focus Group has been working. (1) Access (transportation) Dr. Holder described the effects of lack of good oral care and noted that periodontal disease, a chronic infection, is rampant in the disabled population. Periodontal disease increases the risk of heart attack, stroke, diabetes, obesity and malnutrition, pneumonia, oral cancer, stomach ulcers, premature death, and pre-term low birth weight babies. Poor oral health also causes behavior problems and often patients are referred to psychiatrists. Rather than look for the medical or dental problem, psychiatrists medicate patients with antipsychotic drugs to control their behavior. According to a recent survey, 25 percent of people with intellectual disabilities are referred to general anesthesia for dental services. General anesthesia not only places a person at risk but, it is very expensive. In 55 five percent of the cases, IV sedation is used which is also very expensive. Dr. Holder ended his presentation with statistics showing that good oral health care for people with intellectual disabilities would save from $300 to $500 per patient per year. Panelist Dr. Sanford Fenton briefed the Committee about his program for providing oral care to individuals with intellectual disabilities. He has six clinical sites and two outpatient clinics, one in Arkansas and one in Memphis, Tennessee. The largest percentage of dental disease is in the inner cities and rural counties with disadvantaged individuals. Unfortunately, once the residents have completed their training, they set up shop in the suburbs, instead of where the disease is. Dr. Fenton discussed the vast difference in Medicaid reimbursement for dental care in Tennessee and Arkansas. In Tennessee the rate is 75 to 80 percent of the usual and customary fee. In Arkansas, it is 15 to 20 percent of usual and customary. The next panelist was Dr. Raymond Lala who provided a Power Point presentation on training programs for dentists offered by the Division of Medicine and Dentistry in the Bureau of Health Professions at HRSA. HRSA provides pediatric dentistry grants from $250,000 to $300,000 annually for three years. General dentistry residency grants provide around $200,000 for three years. The grants are given to educational institutions and teaching hospitals to train dentists, either pediatric or general dentistry. The general dentistry grants have generally been geriatric programs and the pediatric grants. A unique opportunity is that it is bundled under the Primary Care Medical Education. Money for the program is a problem and the grants are no longer available for three years. However, applicants can reapply under a different set of objectives. The Chair asked if there would be a medically underserved population designation and, if so, how long it would take to put out the RFP. Dr. Lala’s response was “yes,” and the designation would be under the special consideration program. The RFP should be out in October, 2005. Kathy Hargett expressed concern regarding accountability by medical professionals in group homes. Dr. Lala referred to a program that was implemented in South Carolina when he was the State Dental Director. In response to an RFP from a private foundation, he put together an educational and service delivery dental program for special needs individuals. They also did an educational program for families and staff at nursing homes. Accountability is the responsibility of the family as well as medical professionals and knowledge of the entire system must be improved. Dr. Lala noted that health care services, including dental care, have been taken on primarily by pediatric dentistry and pediatric medical doctors and they are transitioning out of the practice; currently there are only 4400. They can’t make a dent in providing services for the one million intellectually disabled individuals. The final panelist, Dr. A. Conan Davis, made a presentation on Medicaid reimbursement rates. He explained how the partnership between the federal government and the states works. The states enter into a contract with the federal government to provide reimbursements which are matched by the federal government. However, the states set eligibility criteria and scope of services that they will cover for the patients they serve, as well as the fee service. Dr. Davis discussed the difference between mandatory service and optional service categories. Mandatory service categories under Medicaid are inpatient and outpatient hospital services, family planning services, rural health clinic and federally qualified health clinic services, EPSDT (family planning, nursing facility services, nurse practitioner services, nurse midwife services, home health services for people entitled to nursing facility care, laboratory and ex-ray services), and early periodic screening, diagnostic and treatment services for children. Optional service categories are services for non-physician licensed practitioners, including podiatrists, optometrists, chiropractors, psychologists, social workers, private duty nurses, clinic services, dental services, physical therapy and some dental services. Also included are occupational therapy, speech, hearing, language therapy, prescribed drugs, prosthetic devices, eyeglasses, diagnostic services, screening services, preventive services, rehabilitative services and many, many more. These services are covered in most states under the EPSDT program. Dental care is mandatory for children up to age 21 for those who are eligible. The program is optional for persons over the age of 21. Only seven states currently have a comprehensive dental program for those over age 21. When the program was initiated in 1965, four million people were enrolled. The cost was $198 per person, per year at a total cost of $800 million. Currently, four million people are enrolled at a cost of $6,369 per person for a total of $254 billion. Only a small portion of that goes into the dental program. Dr. Davis addressed the issue of shortfalls in state budgets, rising Medicaid costs and the proposed $10 billion Medicaid cuts which will have a tremendous impact on people with disabilities. However, a few mechanisms for increased reimbursement have been identified for dentists who have special training and a home and community based waiver. But, the state has to develop a plan amendment and apply to the federal government for approval. Dr. Holder discussed how the term “medically underserved population” came about and explained the formula that is used for determining who is medically underserved. The formula is based on four factors: (1) Infant mortality rate; (2) Poverty rate; Percentage of population over the age of 65 and (4) Ratio of primary care providers to the population served. These factors are scored from low to high. Under this formula, people with intellectual disabilities have qualified as a medically underserved population since 1979. Dr. Fenton explained that the Commission on Dental Accreditation sets the standard for accreditation of all dental programs in the United States but the standard is written in such a way that it is up for interpretation. The Chair asked Committee members to review the proposed letter of recommendations to the President, and to provide comments. Members exchanged ideas on changes to the recommendations and approved the following.
The Chair advised Committee members that the suggested additions to the draft report to the President would incorporated into it and a final copy would be provided to them by close of business on September 23, 2005. She asked that they review the draft presented to them during recess and approve or disapproved using the ballots provided to them in their resource packets. The Chair introduced the next presenter, Richard Fox, Personal Security Specialist, Administration for Children and Families, US Department of Health and Human Services. Mr. Fox outlined the various procedures in place at ACF for evacuation of employees and visitors, including disabled individuals, sheltering in place and evacuation of the building:
Sheltering in place at ACF is not designed for a long period of time but an evacuation in a different form would take place. Mr. Fox is in the process of reviewing and updating the evacuation plan for transferring individuals with disabilities. Once the plan is updated, ACF will conduct shelter in place evacuation drills semi-annually. At the suggestion of Kathy Hargett Mr. Fox said that he would look into obtaining emergency evacuation chairs. The next speaker was Dr. Anita S. Everett, Senior Medical Advisor, Substance Abuse & Mental Health Services. Dr. Everett spoke about the Medicare Prescription Drug Coverage and how it relates to people with intellectual disabilities. Medicare was enacted in 1965. It now covers 42 million people at a cost of $325 billion in 2005. Thirty-nine percent of beneficiaries are low income and includes cognitive and mentally impaired individuals. Twenty-seven percent of the entire Medicare population has issues related to cognitive and mental impairment. Approximately 14 percent of the Medicare population are disabled and below age 65. About 85 percent are in the elderly category. About 60 percent of the Medicaid population are poor or near poor individuals. Roughly 20 percent are people with several disabilities. Dr. Everett provided an overview of Medicare, Part D, and how it affects people with disabilities. The Prescription drug plans are divided by regions and by population. She discussed the cross over population of people with intellectual disabilities and mental illness. The rate of mental illness among individuals with mental retardation varies, depending on age, type of mental illness, and research selection factors. The single most common mental health problem, in general, is poor social skills that manifests in a variety of ways. Conduct and behavioral problems occur in about one in five people in the community. Three to 6 percent of the general population of people with mental retardation has mood disorders, depression and bipolar disorders. A mechanism is in place to prevent disparities in the Prescription Drug Program. The program will use a standard formulary for the program. At least two medications are in each category of medications covered. The program pays for brand name as well as generic medications. SAMSHA will have a link on its website to the various resources that are on the CMS website. The site is easy to use by people with mental health issues. SAMHSA is also conducting outreach through the media and its newsletter, SAMSHA News, a state mental health and substance abuse directors’ listserve. Dr. Appareddy asked for clarification about medications covered under Medicare and Medicaid and those covered by the Prescription Drug Program. People who have Medicaid will no long be able to get medicines through the Medicaid program. They can opt to be covered by the Medicare program, if they are already in the Medicare program, but they cannot opt to be covered for prescription drugs by the Medicaid program. After January 1, 2006, Medicaid for prescription drugs will automatically discontinue. The co-pays are based upon financial resources. Coverage for medical services will not change. The Chair introduced the next speaker, David Chatel, Acting Director of Patient Advocacy, Centers for Medicare and Medicaid. Mr. Chatel is responsible for working with national health agencies and other advocacy groups that focus on disability and mental health issues. Mr. Chatel emphasized that the success of the Medicare, Part D, Program depends upon a joint effort of the federal and local government, organizations and people working with people. He shared the CMS’ strategies and materials on Medicare Part D with the Committee and discussed the CMS’ outreach program. He asked the Committee members for ideas on how to reach the community. In addition to coverage of medications, the new prescription drug plan includes preventive benefits such as Medicare physicals; cardiovascular and diabetes screenings; smoking cessation counseling; bone mass measurement screening and other tests related to disease prevention. The CMS has put together a training kit to help people become aware of the preventative services. The program is available regardless of income level or how many prescriptions one takes. For the typical beneficiary, Medicare will cover approximately 50 percent of the average drug care spending which is around $1,100 per year. People with limited income will save even more and, for people who have both Medicare and Medicaid, the prescription drug coverage will cover approximately 95% of their drug costs. There are no co-pays and no deductibles. The enrollment period begins on November 15, 2005 and ends May 15, 2006. Cost of coverage will increase after the May 15, 2006 deadline. Mr. Chatel provided a description of the five different major categories available: Medicare HMO/PPO health plans, employer, union or public sector retirees that already have prescription drug coverage; dual eligible people; people who eligible for extra help and the general population. The Medicare Prescription Drug Plan is voluntary except for those covered by both Medicare and Medicaid. Dual eligible people have choices. People with the lowest incomes will pay no premiums, no deductibles and will have very low or no co-pays. People in nursing homes pay no co-pays. People with slightly higher incomes will pay a reduced deductible and pay a little more out of pocket. To meet eligibility requirements, a person must reside in the U.S. and meet the income and resource requirements. The following individuals automatically qualify for the program:
Income cutoff levels this year are:
The SSA has mailed applications to 19 million people. Materials are available on the SSA websites and at Social Security offices. Because some people may not get information on the program, as of December 31, 2005, these people will be automatically enrolled in a prescription drug plan. If it isn’t the drug plan that they want, they will have the opportunity to change it depending upon the plans offered in their region. The timeline for implementing the plan is:
CMS has a Medicare prescription drug plan finder, a web-based tool that will help people find the plan that is best for them. It also has an 800 number to assist people with selecting a plan: 1-800-Medicare. Training is being provided for the state health insurance assistance programs and the area agencies on aging across the country to walk people through the application process. They are also working with pharmacists and providers and organizations specifically representing people with intellectual disabilities, such as The Arc. The Chair asked Mr. Chatel for his insight on what the Committee could do that would make a difference in the lack of trained mental health practitioners and lack of access by people with intellectual disabilities. Mr. Chatel concurred that the issue is a very big problem and offered to link the Committee with people at SAMSHA to form a subcommittee to work on that issue. After Mr. Chatel’s presentation, the Chair recessed the meeting at 5:30 p.m.
Friday, September 16, 2005 The Chair reconvened the meeting at 8:00 a.m. She introduced John Benison, Senior Policy Analyst, Office of the Secretary, U.S. Department of Transportation, and Ex Officio Representative of the PCPID. Mr. Benison shared with the Committee information on a new DOT website, Emergency Transportation Preparedness for Individuals with Disabilities. DOT launched the site on July 21, 2005 as part of the task undertaken by the Inter-Agency Coordinated Council on Emergency Preparedness and Individuals with Disabilities. The Council is led and managed by the Department of Homeland Security. The site is designed to be a resource on emergency preparedness and transportation for individuals with disabilities and for transportation providers. It provides information on how to get information from the Inter-Agency Coordinating Council and responses on issues affecting people with individuals with disabilities who were affected by Katrina. The site address is www.dot.gov/ost/docr. On the left-hand bar toward the bottom, is the Emergency Preparedness button which will take you to an e-mail address called “Disability.Preparedness@DHS.gov.” Anyone having questions relevant to the recovery response from Hurricane Katrina should send them to that e-mail address. The site provides general information on emergency preparedness, disability and transportation accessibility. Two important pieces of the site are the disability resources section and the transportation provider section, including most state transit systems. Local transit systems are also being added. Under the Emergency Coordinating Council, DOT is planning to develop guidance for transit agencies on accounting for the needs of individuals with disabilities when developing their emergency preparedness plans. Mr. Benison asked Kathy Hargett, and other members that may be interested, to participate in the work group which will consist of members of the disability community, first responders and transit agency representatives. In closing Mr. Benison asked the Committee members to review the site and provide its input on the usefulness of the site and any suggestions for adding more useful information. Mr. Bradigan, a guest, suggested the use of a product that was used in Houston for people with disabilities, called a “passport.” The tool is a simple picot-word type combination that an individual could look and see where he is. The tool is also useful for the driver to determine where the person was trying to go. At the request of the Chair, Mr. Rhatigan offered to provide samples of the product to Sally Atwater and John Benison. During the question and answer period, Committee Members asked that the following recommendations be considered by DOT:
The next presenter was Dr. Margaret Giannini, Ex Officio Representative of the PCPID. Dr. Giannini reported on the White House Conference on Aging, Mini-Conference on Disability, the Surgeon General’s Call to Action and Hurricane Katrina. She discussed the various levels of organization Hurricane Katrina assistance from the President on down. The President created a committee consisting of Cabinet Secretaries and Deputy Secretaries in all categories such as housing, transportation, health care, assistive technology, businesses, small and large and economics. Dr. Giannini also relayed the activities of the Inter-Agency Coordinating Council, which became very proactive after the hurricane. They, in conjunction with other agencies, have met with persons that were affected and relocated to other states. One of the biggest problems the agencies are faced with is determining who the people are and where they have been sent. The Protection and Advocacy Organization, funded by HHS, was not allowed access to the sites to help identify the disabled. As a result, they organized a team consisting of representatives of SAMSHA and CMS to conduct an on site investigation in coordination with the Red Cross. The team was led by ADD Commissioner, Pat Morrissey. After going through the bureaucracy, they got into the sites, took it to the state levels, and now have teams of PNA people trying to identify individuals who need help. Temporary housing is an issue for people with disabilities, as the trailers and rentable space are no adapted for persons with disabilities. Dr. Giannini has been working with Mark McClellan to create a waiver to provide monies to make the adaptations. Medicaid was not honored in states to which people had been relocated, because they were not residents of the states. Dr. Giannini was successful in getting a universal waiver for every state to provide medical services; the states will be reimbursed. In addition, medical services were not available to people who had lost everything and found themselves poverty stricken. A system was put in place so that the states would accept these individuals for Medicaid. People with disabilities have special needs which the Red Cross is not educated about and not prepared to provide. Dr. Giannini offered to provide, and the Red Cross has agreed to accept, information on the needs of people with disabilities in an emergency situation, so that they don’t have to start from scratch on how to deal with these issues. Another initiative underway is a partnership with the International Association of Physical Medicine where volunteer teams of constellation experts go where they are needed. Dr. Giannini is also working with the Department of Transportation to arrange for special transportation of people with disabilities in an emergency situation such as Hurricane Katrina. She has also approached the Surgeon General and Homeland Security for assistance in locating people with disabilities. Dr. Giannini addressed the issue of long-range planning and giving people choices on where they want to live, so that they can regain their dignity, independence and self-determination and get employment so they can work on asset ability. She stated that the White House is very sensitive to these needs and is trying hard to resolve the issues. Dr. Giannini next addressed the White House Conference on Aging. When planning for the conference began, it excluded disabilities. She asked the White House to include disabilities since most people over the age of 65 have a disability. That request resulted in the Mini-Conference. The conference focused on social engagement and productivity, healthy long-term living, economic security, planning and choice, technology use and design, and environment and positive messaging. A number of recommendations were made as a result of the mini-conference which will go to delegates who will attend the White House Conference on Aging. Five Hundred delegates from around the country will participate and make recommendations to the President. The Surgeon General’s Call to Action was addressed briefly. The Call to Action raised the consciousness through the country of not only consumers, but health providers, administrators and people that are responsible for health for people with disabilities. Dr. Giannini shared with the Committee that, as a result of a summit that she held last December on women with disabilities, Harvard University had invited her to speak about that issue. It is a very serious problem because women with disabilities are probably the most misdiagnosed, mismanaged and mistreated of all the disabilities, in general. This is the first time and the first university that is going to include a course in their Medical School on women with disabilities. Kathy Hargett was asked to update the Committee on her work on emergency preparedness for people with intellectual disabilities. Mrs. Hargett talked about the eight subcommittees of the Interagency Coordinating Committee (ICC) and highlighted the ones that she has been working on, i.e., the ICC Emergency Preparedness Subcommittee and the Office on Disability Subcommittee on Health. Mrs. Hargett discussed the report of the ICC and felt that it lacked a buddy system in the workplace for people with developmental disabilities. At her urging, it was put into the report. The next topic discussed was the difficulty people have in finding on-line emergency preparedness resources for the disabled population. Very little information exists on the internet, and it is paramount that it be made available for people with disabilities. The use of terminology in referring to people with disabilities is yet another issue. It was agreed by the subcommittees that the term “cognitive disabilities” would provide an umbrella for a lot of people who have something in common. Under that umbrella there are people with developmental disabilities, head injuries, mental illness, dementia and other categories. The common denominator is that these people lack judgment skills that are required for self-planning and self-evacuation. Mrs. Hargett provided a summary of her visit with the Commissioner for the New York City Regional Office for Mental Retardation and Developmental Disabilities to learn how they assisted people with disabilities during the 9/11 tragedy. New York had a plan in place in anticipation of a computer breakdown when the millennium changed. All of their providers and employees were trained on what to do. On 9/11 two to three thousand people with developmental disabilities were safely evacuated and relocated. Relocation areas were prearranged by agreement with hotels, camp sites, gymnasiums, etc. They received a waiver from the State of New York for an extra week of medication. New York State has an individual profile for each person who needs additional medication, with the person’s name, phone number, height, weight, likes, dislikes, needs, what scares them and other useful information. Identifying tags with pertinent information are sewn into clothing. Mrs. Hargett is working with a number of advocacy groups to promote the development of plans for evacuating people with disabilities in an emergency. She referred to Tips for First Responders that was provided to her through Dr. Giannini. She recommended the establishment of a review board to be comprised of a member of the PCPID, a member of the Office on Disability, the Association of Health and Mental Retardation, the Association for Retarded Citizens, the National Organization on Disability, the National Council on Disability, the American Association on Health and Disability and many others that are appropriate, to review plans fro all states and territories, with emphasis on plans that are already in place for disabled people, but especially the developmentally disabled. She also recommended the use of an identifying mechanism, such as a chip under the skins, eye prints, fingerprints or some other device that would assist in locating people. The Chair asked Committee members to vote on whether or not to post the Tips for First Responders on the PCPID website. It was noted that the PCPID does not ordinarily endorse things that are produced in the private sector. However, these tips are important and could possible save lives. Committee members voted to approve posting of the tips. The Chair conveyed to the Committee that a public awareness campaign on emergency preparedness will be one of the PCPID’s recommendations to the President in its next report. The Committee will also invite a representative from the recently formed Medicaid Commission. The Committee needs to convey to the Commission the importance of looking at Medicaid and the population of people with disabilities who are so dependent on it, not just the elderly. Annette Talis raised the issue of the problems encountered with school-based Medicaid and Medicaid for pre-school children. The Chair answered that the problem had existed for at least a decade and that the Committee had looked at it previously. The Committee does not have the ability to require people to solve an issue like that. It can highlight its importance and the consequence for not addressing it, however. Commission Pat Morrissey joined the meeting via telephone conference call and resumed the discussion about identifying and tracking people with disabilities who were affected by the hurricane. She said that the pace for moving people out of shelters is increasing. Another issue is that people who were evacuated didn’t get to take some of their durable medical equipment, such as crutches, wheelchairs, walkers, etc. with them. There is also an issue with medications. For example, in Texas, people who take psychotropic drugs only get a three-day supply, and doctors have a hard time determining prescriptions because the patients don’t remember what they took. Commissioner Morrissey stressed additional challenges to be met for people with disabilities, such as traumatized families, housing, and coordination. She is writing a report on her findings which lays out, not only the problems, but proposed solutions. The Chair introduced the next speaker, Josephine B. Robinson, Director, Office of Community Services, Administration for Children and Families. Mrs. Robinson’s presentation was on the Assets for Independence Demonstration Program. Before beginning her presentation, Mrs. Robinson shared with the Committee members her personal interest in assets for independence, as she has a sister with intellectual disabilities who lives in a group home and who has struggled for many years to develop independence. Mrs. Robinson also has a developmental disability and is a very strong advocate for providing a measure of independence to people with disabilities. She applauded the work of the PCPID. Mrs. Robinson described the work of the Office of Community Services (OCS), which is to support individuals, particularly low-income, to achieve some self-sufficiency and independence, both economically and personally. She explained how the Assets for Independence and Individual Development Accounts Program is structured, how it runs and how it may intersect to enable it to be used for people with intellectual disabilities. There are several other entities that have IDA accounts and she also explained the differences in the various programs. Mr. Robinson cited the book, Assets and the Poor, written by Dr. Michael Sheridan from the Center for Social Development at Washington University, St. Louis, who was instrumental in establishing IDAs about 10 years ago. IDAs are competitive grant programs. They are matched restricted savings accounts held in banks or credit unions. Because they are matched by the federal government, they are managed jointly by an intermediary organization and the saver. The accounts are restricted in that an individual must have an economic goal to achieve before they will have access to draw down the funds. Included with the program is intense financial counseling. The individuals are educated on how to handle money, how to budget, and how to save. The OCS IDA program is a demonstration program with a $25 million annual appropriation from Congress, part of which goes to administrative costs. ACF is required to conduct an annual national evaluation to determine how successful the program has been. The program is in its sixth year. So far over 21,000 people from a diverse ethnic group have had IDAs. Many of the participants are single parents; 80 percent are women. OCS has a broad outreach program. However, because of the restrictions that are within the program, it is not currently set up with the disability community in mind. Legislation for the program states that an IDA can only be used for the purpose of acquiring a first home, accessing higher education or training, or starting or supporting a small business. The money can be transferred only within the household (for example from a parent to a child for college education) with the five year grant program. The restrictions on the programs are very challenging for use by a person with intellectual disabilities if they are not able to achieve one of these purposes. Another restriction is that there must be a non-federal cash match. The grantee organization has to find a community organization or bank that is willing to provide that non-federal match. The organization and partner must come to the table with dollars. It is a match for match program. The federal matching cap is $2000. The grantee can choose to match at a higher rate; the cap for a household is $4,000. A grantee may choose to do a lower cap. A participant must have some sort of earned income. SSI income cannot be counted as part of the amount of money that is used to match since it is already federal money. Nor can money received from the federal government by a group home or other grantee organization. It has to be a separate match. This is one of the roadblocks for use of the plan by individuals with disabilities. The program is a Congressional one and no government agency can change it. Currently, there is only one organization that does outreach toward people with disabilities to get them into the program. OCS is in the process of developing some ideas about how the program can be improved. After their evaluation is complete, they will provide that information to Congress. Mrs. Robinson urged Committee members to work on recommendations in its Report to the President for Congress to broaden the reach of the program to allow people with intellectual disabilities to participate. Mrs. Robinson said that those suggestions and recommendations would be incorporated into the OCS comments to Congress. The program is scheduled for reauthorization in 2007. Jim Brett asked for a breakdown of people applying for either housing or small businesses. Mrs. Robinson said that housing is the more popular. A grantee can offer just one or all three. A housing authority would just do housing. The Chair asked if a statutory change had been considered that would allow a group of parents of children with disabilities to make a match. Mrs. Robinson responded that the group of parents would have to work with a community-based organization. Dr. Giannini commented that there are three different things working for assets for independence that are not related to each other. One is the OCS IDA program, one is the National Cooperative Bank, which the Office on Disabilities partners with, and the other is the IRS. The IRS trains individuals to understand what their tax credits are so that income such as SSI is not counted against them. There are other components that the Office on Disability has worked out with the CMS, Fannie Mae and HUD where people can own a home for as little as $500. She suggested that more coordination among the various agencies would create a smoother program. The next speaker was PCPID member, Karen Staley. Mrs. Staley reported on her work in connection with Direct Support Professionals Challenges. She recently met with Susan Hill of CMS, Dr. Giannini, Steve Tingus at NIDRR, and Jim Downey and other individuals at the Department of Labor. One of the issues she discussed with them was lack of training and the high turnover rate of direct support staff. This has been discussed in PCPID Reports to the President for the last ten years with no results. The turnover rate is extremely high due low pay, no benefits and no chance for career growth. As a result of her discussions, Mrs. Staley found that there is no coordinated effort to address this issue. She has enlisted the assistance of Dr. Giannini to bring it to the forefront of domestic policy. She also suggested that the position itself be elevated to a profession that would be recognized as a profession and a respectable position. Training should be provided so that individuals can get a certificate. The training could be on-line learning. In her meetings with CMS, Mrs. Staley learned that are real choice and change grants available to institutions that will provide training and a higher level of pay for direct support professionals. There is no data on the direct work force. However, she learned that grants for training are available through several agencies: The National Center on Birth Defects, the Office of Apprenticeship and Training at the Department of Labor. Mrs. Staley suggested a meeting with an inter-agency work group to come up with a common goal or plan to address this issue. Dr. Bouthilet shared that the Department of Labor (DoL) Office on Management and Training has state formula grants for training and enhancing credentials of direct care support people. The DoL has a five-year state plan from each state and how they expend those funds for training purposes. Jim Brett stated that training, pay and benefits are state-by-state issues. A lengthy discussion ensued among Committee members about the practicality of the Committee devoting more time to this issue because of the lack of impact that it can have to promote it. Dr. Bouthilet pointed out that pay and benefits for direct care professionals has been addressed by the Committee in reports to the President since the early 1980s with no results. Members unanimously agreed to make the matter of direct care professionals a high priority issue for full Committee discussion next year. The Chair moved the discussion to medical, physicians and mental health professionals where similar issues lie. She recommended the submission of a letter to the President regarding physicians and mental health issues outlining the problems and making specific recommendations for consideration by the President. She suggested obtaining opinions of experts, on a pro bono basis, who have data on the number of people with intellectual disabilities who are not receiving assistance and who need access to mental health professionals. The letter needs to identify how much training the average physician or mental health professional receives to treat persons with intellectual disabilities. The data must be highly credible published scholarly data. The next item on the agenda was housekeeping. The Chair announced that the Coleman Institute for Cognitive Disabilities will hold its annual conference on October 24 in Boulder, Colorado. Key speakers are Jose Cordero of the CDC, Pat Morrissey from ADD and Tim Shriver, Chairman of the Board of International Special Olympics. Eunice Shriver will be a special guest. Tentative dates for the next PCPID Quarterly Meeting are Monday and Tuesday, December 5 and 6 and Thursday and Friday, December 8 and 9. New members of the PCPID will be sworn in. The Chair asked Committee members to provide suggestions via email on how to orient the new members and bring them up to speed on issue that the PCPID is faced with. The Committee will continue to focus on dental care, as well as emergency preparedness and disability savings accounts. Housing and comprehensive health care focus will be addressed as soon as a member is available to head them up. Karen Staley volunteered to spearhead housing. Mark Gross asked that the Committee reduce the number of speakers and the number of different topic areas at the meetings so that the Committee could focus on one or two different topics which would make it more effective. The Chair made a motion to adjourn. The motion was seconded and the meeting was officially adjourned at 11:45 a.m. PROPOSED ACTION ITEMS FROM THE TRANSCRIPTS 1. Review training programs for transit personnel in communications and emergency preparedness for people with intellectual disabilities. Steve Bradigan, Houston, Texas will provide samples of materials and identifiers that were used in the Houston area for people with disabilities to Sally Atwater, Executive Director, PCPID, and John Benison, Senior Policy Advisor, Office of the Secretary of Transportation. 2. Follow up with John Benison regarding the growing movement across the country in the development of book clubs for people with intellectual disabilities. Provide contact information to John. 3. Review the U.S. Department of Transportation’s internal guidelines on emergency preparedness and individuals with cognitive disabilities; determine whether the information is appropriate and will be appropriate for transit agencies; review links for transportation providers; provide feedback to John Benison. 4. Extend invitations to Medicaid and Homeland Security personnel to speak at one of the PCPID meetings about getting information to the local level on Medicaid and transportation service providers. 5. Invite a representative from the Medicaid Commission to speak at the next PCPID meeting to discuss the recommendations that they made to the President and the importance of looking at Medicaid and the population of people with disabilities who are dependent upon it. 6. Submit comments to Josephine Robinson, Director, Office of Community Service, on how to broaden the outreach program and ease the restrictions placed upon people with intellectual disabilities for participation in the individual assets development program. The recommendations will be incorporated in the OCS Report to Congress. 7. Revisit housing, health and mental health focus areas after new members of PCPID are sworn in and brought up to speed on issues that PCPID is challenged with. 8. Obtain advice and published data from experts in the field on the number of persons with intellectual disabilities who need access to mental health professionals; show lack of training for the average physician or mental health professional on how to treat individuals with intellectual disabilities. |
