PCPID Meeting: February 15-16, 2007

Minutes

Thursday, February 15, 2007

Sally Atwater, Executive Director, President’s Committee for People with Intellectual Disabilities (PCPID), convened the quarterly meeting of PCPID at 9:00 AM on Thursday, February 15, 2007. She welcomed all members, staff and guests. Thereafter, she turned the meeting over toChairman Rob Sweezy.

Chairman Sweezy welcomed all in attendance. He requested each member, staff and guest to introduce themselves. Following the self-introductions, he provided an overview of the agenda for the two days of the meeting. He emphasized the importance that the full Committee and each of the Subcommittees highlight the theme of “Value” for the Report to the President for 2007.

Chairman Sweezy then turned the meeting over to Harris Hollin, Chair of the Subcommittee on Research Applications, to conduct his Subcommittee’s portion of the agenda.

Mr. Hollin acknowledged the importance of the theme of the inherent value of all individuals with intellectual disabilities in the field of research and its application and provided an overview of activities planned by the Subcommittee concerning presentations and follow-up interactions with members of the full Committee, including comments from guests in attendance. Mr. Hollin indicated that he would then present the subcommittee’s mission statement and their proposed recommendations.

Mr. Hollin then introduced the first speaker of the subcommittee’s panel, Dr. Patricia Morrissey, Commissioner, Administration on Developmental Disabilities. Ms. Morrissey spoke on new information and findings related to the rapidly expanding population of persons with autism spectrum disorders. She noted that public awareness of autism has significantly increased in recent years and has resulted in major increases in funding for research and services. She also noted that while it is not specific to the population addressed by the Committee, she believes it to be a positive development for people with intellectual disabilities because of the residual and cross-disability implications that increased research represents. She then made three recommendations for the Committee’s consideration:

1. Develop a way to categorize the information on intellectual disabilities and then post it to a website that will make finding specific information more accessible.
2. Promote and help develop participatory research that will include people with intellectual disabilities and their families in research design and execution.
3. Develop a newsletter that could serve as a conduit for word-of-mouth strategies and gadgets that have proven effective in improving the lives of people with intellectual disabilities.

Mr. Hollin then introduced Steve Warren, Chair of the Developmental Disabilities Research Centers Association.

Mr. Warren began his comments with the history of the university system and the ways in which research has been changing over the years from a lone wolf mentality to a more collaborative effort. He also discussed the inter-disciplinary ramifications of much of the research being done today. Mr. Warren then cited some specific examples of recent breakthroughs and translational research that are improving the lives of people with intellectual disabilities. Mr. Warren urged the Committee to recommend that all federally funded research be required to include people with intellectual disabilities unless there is no scientific reason to do so. He also recommended that policymakers and practitioners identify the scientific bases of their clinical practices. Mr. Warren concluded with the observation that science is an evolutionary process that is constantly overturning previous notions and accepted truths, which is how we progress.

George Jesien, Executive Director of the Association of University Centers on Disabilitybegan his remarks by illustrating an ideal scenario of translational research reaching the consumer in an ideal way. He then listed the progress needed to make his scenario a reality, including: fully utilizing current infrastructure, increased collaboration in a competitive world, better utilization of information technology to transmit results and ramifications to policymakers, parents and advocacy groups, and a discipline of translators to help bridge the gap between scientists and the consumer. He then discussed the two overarching issues, increasing research costs and enticing young, brilliant minds into the field of intellectual and developmental disabilities research. Mr. Jesien highlighted the work and accomplishments of University Centers of Excellence in Developmental Disabilities (UCEDD), the Leadership Education and Neural Development (LEND) program, and the Developmental Disabilities Research Centers (DDRC) and their role in disseminating best practices and research results. He stressed the need to utilize these existing networks to better facilitate increased research and next generation training. Mr. Jesien concluded by challenging the Committee to encourage consumer participation in new knowledge, and to encourage Congress to fund basic and applied research.

The speakers then answered questions from the Committee and audience.

Following the question and answer period with the Panel, Mr. Hollin presented the mission and recommendations of the Subcommittee on Research Applications. He focused on the inherent value of individuals with intellectual disabilities in relationship to each of the recommendations of the Subcommittee on Research Applications.

The recommendations included four leading priorities and four major goals, plus an additional section aimed at considering the role of the private sector and its contributions to research and its applications. The four priority recommendations included:

1. To foster continued intense efforts to improve and streamline the translation of basic neuroscience findings into clinical applications for treatment and amelioration of intellectual disabilities, including the use of educational approaches for earliest prevention and detection of intellectual disabilities for the benefit of people with intellectual disabilities, e.g., role of genetics, effects of alcohol, lead, infections, trauma, inadequate nutrition, poisons and other environmental toxic factors affecting the nervous system.
2. To encourage the vigorous pursuit and development of new technology and approaches for early screening, detection, diagnosis, amelioration and treatment of people with intellectual disabilities, particularly as applicable to improvements in drug development and psychopharmacological approaches for the benefit of people with intellectual disabilities.
3. To promote equitable access to services through:
   
   1. The improvement of diagnostic categories and culturally competent assessment instruments for the benefit of people with intellectual disabilities;
   2. The standardization of eligibility criteria across program and funding streams for the benefit of people with intellectual disabilities.
4. To expedite mental health research translation to promote and foster consistency in appropriateness, effectiveness and efficiency in delivery of mental health services for the benefit of people with intellectual disabilities.

After presentation of the priorities, Mr. Hollin presented the next four recommendations that the Subcommittee referred to as goals:

1. To urge all Federal research agencies supporting biomedical and behavioral science research to coordinate and expedite translation of research findings to appropriate service and education oriented government agencies for the benefit of people with intellectual disabilities. The inherent value of each individual with intellectual disabilities is to be taken into full consideration.
2. To urge all Federal service and education oriented government agencies and Federal clearinghouses to receive and review research findings and to expedite and translate research findings into readily utilizable health, educational and other related applications for the benefit of people with intellectual disabilities. The inherent value of each individual with intellectual disabilities is to be taken into full consideration.
3. To urge the establishment and support of a Federal Interagency Committee on Research Translation for the Benefit of People with Intellectual Disabilities, with membership from appropriate Federal research, service and education agencies and other pertinent government agencies and clearinghouses as may be determined. Invitation and inclusion of officials and representatives from appropriate private sector research, service and education entities may be given consideration. The recognition of the inherent value of each individual with intellectual disabilities must be taken into full consideration by all members of the proposed Federal Interagency Committee on Research Translation for the Benefit of People with Intellectual Disabilities.
4. To urge Federal mental health research, service and education agencies to readily translate and accept research applications toward early prevention, early detection, diagnosis, amelioration and treatment of behavioral, emotional, and social disorders usually associated with citizens with intellectual disabilities, e.g., fetal alcohol spectrum disorders, fragile x syndrome, autism spectrum disorders functioning at a level equivalent to intellectual disabilities. The inherent value of each individual with intellectual disabilities is to be taken into full consideration.
5. To identify, influence and access contributions from non-government resources for achieving the Mission of the Subcommittee on Research Applications, including private sector research enterprises, private voluntary organizations, private foundations and quasi government agencies that benefit people with intellectual disabilities.

Thereafter, Mr. Hollin answered questions pertaining to the priorities and goals included in the recommendations.

It was suggested that the term “technology” be incorporated into priority item number two. The suggestion was accepted and the change made.

The Committee then recessed for a 10 minute break.

Mr. Romano resumed the meeting by noting that the goal of the Subcommittee on Public Awareness is to find a way to move the public agenda in a positive direction for people with intellectual disabilities. He also noted that the subcommittee had focused on four priority areas and that they would begin with criminal justice. He then introduced the first speaker on the criminal justice panel, Olegario Cantos VII, Esq., Associate Director of Domestic Policy at the White House.

Mr. Cantos noted that he had alerted the White House of the Committee’s attention to this important topic. Mr. Cantos stressed the importance of equal access to the criminal justice system for people with intellectual disabilities, both for victims and perpetrators. In particular, he addressed the need to protect victims with intellectual disabilities through better reporting of abuse and better training for first responders, prosecutors and judges. He also stressed the need for victim-witness, and crime prevention programs for people with intellectual disabilities. Mr. Cantos concluded by urging the Committee to use their voice as a Presidential Advisory Committee to talk about people with intellectual disabilities and the criminal justice system in order to affect change throughout the government.

Mr. Romano introduced the final speaker on the criminal justice panel, Committee Member William Edwards, Esq.

Mr. Edwards began by outlining some of the problems that criminal perpetrators face upon entering the criminal justice system, most notably, not being properly diagnosed as having an intellectual disability and noted that eight of his own clients were not diagnosed until they were on death row. He stated that lawyers and judges often confuse intellectual disabilities with mental illness and because of this misconception, appoint experts to testify who are not qualified to do so. He also stressed the potential for abuse while being questioned by the police.

Mr. Edwards stated that in many cases, perpetrators with intellectual disabilities become victims of rape and abuse once inside the criminal justice system and often before they are brought to trial. For those who serve jail time, after their release, there is a lack of services and supports, they have lost their SSI benefit and they often end up on the streets. Mr. Edwards concluded by discussing false confessions from people with intellectual disabilities and cited specific examples.

Mr. Romano then addressed the issue of the value of people with intellectual disabilities and the importance of promoting their competence and value to society. He highlighted the need for more research and better distribution of the research that has already been done.

Mr. Romano then introduced Dr. Gary Siperstein, Professor of Psychology and Human Services at the University of Massachusetts, and Director of the Center for Social Development and Education.

Dr. Siperstein began by presenting statistics to demonstrate that many of the societal attitudes regarding people with intellectual disabilities from the 1950’s were still prevalent today and that both adults and children believe individuals with intellectual disabilities are less capable than they really are. He observed that there is much left to be done to change societal attitudes about the competence of people with intellectual disabilities.

Mr. Siperstein also noted his experience with juries that had false and misleading notions about people with intellectual disabilities. He cited Atkins v. Virginia in which the jury seemed to believe that if a person has knowledge, they can’t have an intellectual disability. He also noted that statistics reveal that the majority of the public believes people with intellectual disabilities can work successfully, but that adults do not believe that students with intellectual disabilities should be in regular schools and classrooms. The youth, however, believe that students with intellectual disabilities should be in their schools, but not necessarily in academic classes. The youth surveyed also don’t see people with intellectual disabilities as potential friends. These attitudes, Dr. Siperstein noted, could be related to fact that less than 25% of people personally know or have worked with a person with intellectual disabilities so there have not been many opportunities for them to witness their competence.

Dr. Siperstein ended by observing that as media exposure, personal exposure and volunteer opportunities with organizations such as Special Olympics increase, so does acceptance, inclusion and perceived competence.

Mr. Romano then opened up the floor for questions of either William Edwards or Dr. Siperstein (Mr. Cantos was obliged to leave immediately following his remarks).

Based on questions, the Committee then discussed with the presenters the need for a clearinghouse of success stories to promote the competency of people with intellectual disabilities. They also discussed the need for additional focus on people with intellectual disabilities as victims and increased training for the police, particularly regarding the differences between mental health issues and intellectual disabilities. It was also suggested that issues facing people with intellectual disabilities be integrated into law school curriculums.

The Committee discussed with Dr. Siperstein the importance of demonstrating not just competence, but an understanding of the varying degrees of competence so that people with intellectual disabilities are not viewed in terms of either competent or not, but rather as individuals with varying degrees of competence. They also discussed the importance of socialization and relationships for children with intellectual disabilities with their non-disabled peers. He noted that while progress is being made, there is a long way to go and it will require a lot of work on the part of teachers and principals to promote positive social relationships. He also commented that while legislation is important, it is not enough to think that it is all that is needed to change the public’s attitudes about people with intellectual disabilities.

The Committee discussed culpability and competency (mens rea) in the criminal justice system and the challenges that are presented when someone with an IQ in the 60-75 range is accused of, or commits a crime. They also discussed community participation and service as a means of demonstrating competency, and the importance of parental involvement in shaping future attitudes about people with intellectual disabilities.

Mr. Romano then concluded the presentation by the Subcommittee on Public Awareness and the Committee recessed for lunch.

After a lunch break the meeting resumed.

Chairman Sweezy introduced Wade F Horn, Assistant Secretary for Children and Families, Department of Health and Human Services.

Dr. Horn began his remarks by recognizing the importance of people with disabilities to the President, as evidenced by his announcement of the New Freedom Initiative just 12 days after taking office. Now, six years into the administration, Dr. Horn encouraged the members to be bold in their recommendations and work to set the agenda for the next 50 years. He acknowledged the importance of the Committee’s efforts to change the name of the Committee and pointed out the significance of the word “people” in the term “people with intellectual disabilities.” He noted that this word focuses on the person first, not the disability. He also noted the importance of changing from the preposition “on” to the preposition “for.”

Dr. Horn commented on the importance of quickly translating research into a vernacular that the average person can understand. He also noted that Federal government needs direction and recommendations on how to translate research into action steps for the government. He stressed the importance of a multi-level focus of culture, community, family and individuals to empower and integrate people with intellectual disabilities in their communities. Finally, Dr. Horn encouraged the Committee to be bold and think outside of the box. He then invited the Committee to ask questions.

In response to questions, Dr. Horn stressed the need to not be encumbered by questions of budget constraints and timelines, but to be creative and think outside the box. He used as an example the Welfare Reform Act of 1996 and noted that the first response of any program administrator should not be what the person can’t do, but what the person can do to be self sufficient and integrated into the work force.

Dr. Horn also addressed unintended consequences and negative incentives and urged the Committee to consider what recommendations can be made to identify and phase out such bad policies. He encouraged the Committee to consider every avenue for change—legislation, executive order, etc. He then stressed that it is important to make the case to employers that reasonable accommodations are not generally expensive and they are not charity, but are in the best interest of the employer in order to secure reliable, productive employees. Dr. Horn encouraged the Committee to challenge employers, popular culture and society at large to work to integrate people with disabilities into American life—including the workplace.

Mr. Sweezy interjected and encouraged the Committee to consider moving beyond the scope of what the Federal Government can do and make employers, school districts, churches and communities recognize the value of people with intellectual disabilities. He highlighted the problems of simply asking for more Federal money and suggested instead that the Committee reach out to the private sector, to advocacy groups and the public sector to figure out ways to do a better job.

Dr. Horn related his experience with counseling fathers of children with disabilities and providing them with information to help them get involved in the lives of their children with disabilities. He also related that family break-up rates are higher in families that have children with disabilities and that we cannot just resign ourselves to that fact, but must work to do something about it. Dr. Horn concluded his remarks by encouraging the Committee to establish a vision of what the nation would look like 25 years from now if everything they recommended was established and then build a roadmap for how to get there.

The Committee then took a brief recess.

When the Committee reconvened, Chairman Sweezy called on Linda Starnes, Chair of the Subcommittee on People with Intellectual Disabilities and the New Freedom Initiative, to present the speakers and panelists invited to address the subcommittee’s areas of interest and concern. She introduced Dr. Michael Gamel-McCormick, Director of the Center for Disability Studies at the University of Delaware as the first speaker.

Dr. Gamel-McCormick expressed appreciation for the invitation to address the Committee and stated his intention to talk about why EPSDT is important to individuals with intellectual disabilities and their families. He shared examples of three real families enrolled in the early and periodic screening program whose children’s conditions might not have been picked up if they were not looked for during those screenings. Some of their motor and cognitive problems were identified very early resulting in early treatment and better outcomes. They continue receiving supports through the EPSDT program.

Dr. Gamel-McCormick highlighted the history of the EPSDT program and explained it’s purpose to correct or ameliorate defects and mental and physical illness, and conditions discovered by screening services, whether or not services are covered under a Medicaid State Plan. He explained that the program is built on two primary principles, and a third principle that represents a combination of the two:

1. To assure health services are available or accessible to children eligible for Medicaid;
2. To assist eligible children in obtaining needed services and supports; and
3. To mandate that EPSDT programs inform families about the availability of screenings, diagnoses, treatment options, and services.

Dr. Gamel-McCormick expressed that, unfortunately, the EPSDT program is not known by a lot of people, and is therefore not a widely tapped program. He stated that this is particularly true of education.

Dr. Gamel-McCormick then noted these possible recommendations to the President:

1. Requiring the program remain a state component of Medicaid so that every child who is eligible gets the screening process and the treatment process that he or she needs.
2. Retain Medicaid as the payor of first resort; not as the payor of last resort. This helps support those ongoing interventions and treatments that children who have intellectual disabilities need.
3. Retain the tentative limit concept which says that states can put in place a limit on the number of specific services each year, but if a physician or a primary care provider says that the child needs more, that limit can be overruled.

Finally, Dr. Gamel-McCormick addressed the concern that when children in the EPSDT program transition from 21 years of age from the school system, and the child pediatric healthcare system and moves into the adult system, he/she will lose virtually all supports. The EPSDT program could expand beyond the 21-year limit to address needs including skilled nursing care, waivers to provide personal care attendants, etc. Medicaid at the adult level doesn’t always cover this in every state.

Dr. Gamel-McCormick then responded to several questions and comments.

Ms. Starnes introduced the three presenters who comprised the Housing Panel: John Garvin, Senior Advisor to The Assistant Secretary for Housing and Federal Housing Commissioner Brian D. Montgomery at the U.S. Department of Housing and Urban Development (HUD); Jay Klein, Director of the Center for Housing and New Community Economics (CHANCE); and Kathleen McGinley, Deputy Executive Director for Public Policy at the National Disability Rights Network (NDRN). She noted that the Panel was invited to heighten the Committee’s understanding of opportunities and challenges in the area of housing for people with intellectual disabilities from a government perspective as well as an advocacy perspective.

Mr. Garvin thanked the Committee for the invitation to present and stated that he enjoyed the work because with good planning, we can go a long way providing accessible, integrated, affordable housing options for people with disabilities. Mr. Garvin emphasized that there is an incredible shortage of affordable housing. He discussed the debate between integrated community-based settings versus the institutional-type group homes. He mentioned, for example, the Section 811 program—HUD’s main production program housing people with disabilities—a forgivable loan/grant to do construction, and rental assistance similar to the Section 8 program. Mr. Garvin spoke of the Tax Credit Program/Tax Credit Qualified Allocation Plan to address serving special-needs populations, and suggested that the Committee might make a recommendation on providing housing options for people with intellectual disabilities. He noted that HUD has been working with CMS on a new initiative to have money follow the person to transition people out of institutional settings into community-based settings. Mr. Garvin informed Committee members that HUD Secretary Jackson released a letter in November, 2006 asking public housing authorities to make it a preference to work with “Money Follows the Person” clients to get them into public housing. CMS provides the service money; but they can’t provide the housing money; so options must be created. Mr. Garvin encouraged members of the Committee to provide input on how they believe HUD could get some housing options to make the program work.

Mr. Garvin expressed belief that services need to be connected to, and available through, the housing market and illustrated the marketability and popularity of simple services such as transportation to doctors, shopping, etc. He informed the Committee that in the President’s ’08 budget a proposed demonstration program for both Section 811, which is the housing for people with disabilities, and Section 202, which is for Senior Housing would provide incentives to build housing for people with disabilities. He noted, however, that while the 202 and 811 programs are HUD’s major producing programs, they are slow in producing and they’re low in the actual development. And, in tax credits, there are no real extensions. HUD started working on this demonstration program, with the intention to leverage tax credits and have the equity in the development to make the 202 and 811 programs better.

Subcommittee Chairperson Linda Starnes thanked Mr. Garvin for his presentation, and invited Kathleen McGinley to speak to Committee members.

Dr. McGinley expressed belief that it is important to make the case for using data as an advocacy tool, because it statistically demonstrates need. She noted that one of the first and largest barriers to people with disabilities living in the community and being able to find decent, safe, affordable, and accessible housing in the community is the fact that they are poor and that trend has gotten worse. The national average income of people receiving SSI was 24.4 percent of the one-person median income; and they have to compete with other disadvantaged populations who are eligible for the same housing. She also noted that the cost of housing has gone up while SSI income has not gone up, and in spite of work incentives, many people do not have jobs. NDRN has been looking at more Section 8 vouchers for people with disabilities and getting them reallocated to housing authorities and to non-profits who could make sure they go to people with disabilities.

Dr. McGinley suggested that by bringing in 811 money to provide a housing subsidy, and using the tax credit provider for development, more affordable housing would be created, and it would be accessible for people with disabilities. She also emphasized the fact that there are still many developers who are building housing that is inaccessible, 20 years since the enactment of the Fair Housing Accessibility Guidelines.

Dr. McGinley concluded with the problem of unemployment and noted that states can be urged to take a Medicaid buy-in so people with disabilities who go to work don’t lose their health insurance. She noted the importance of taking a whole person approach.

Linda Starnes thanked Dr. McGinley for the presentation, and proceeded to introduce the next panelist, Jay Klein.

Mr. Klein began by discussing the need to add the word “integrated” to the concept of affordable and accessible housing. He discussed the need for systems and policy change and highlighted the importance of a system that looked at the individual. He noted the importance of putting the control of housing and personal assistance into the hands of the individual and their families. He suggested the possibility of using 811 funds—typically used for segregated or congregate housing – for scattered site housing. Mr. Klein stated that poverty, isolation and control —not disability—are the cause of the challenges faced by people with disabilities in the housing market.

Mr. Klein reported statistics related to housing and noted that as we move away from institutional settings, costs decrease. He noted that affordable and accessible integrated housing comes from a variety of sources and by blending public and private dollars housing can be more affordable. He then stated that there is a unique opportunity to attach more HUD home choice vouchers, and attach it to the rebalancing initiatives to create affordable, accessible, and integrated housing. He also recommended eliminating SSI resource limitations and making sure that previously targeted vouchers are used by the intended recipients. Additionally, he recommended using individual development accounts as mechanism for people with intellectual disabilities to save. He concluded by suggesting that SSI recipients be exempt from the earned incomes, and to exclude private IDAs from the SSI resource tests.

Linda Starnes then opened up to questions and the panel and Committee discussed housing specifically for people with intellectual disabilities, the Money Follows the Person Initiative and the problems with 811’s.

Linda Starnes, thanked the Housing Panel and concluded with the status of members’ efforts to prepare papers in their four priority areas: Education (Least Restrictive Environment), Emerging Technology, Health (Medicaid/EPSDT), and Housing.

Chairman Sweezy then concluded the day with some housekeeping items and recessed until 8:00 AM, Friday, February 16, 2007.

Friday, February 16, 2007

The Friday session was convened by Sally Atwater and turned over Chairman Sweezy who called on Steven C. Rhatigan to make his presentation.

Mr. Rhatigan’s presentation focused on financial services and supports from programs and entitlements for people with intellectual disabilities and their families as offered through Federal and/or State agencies. He discussed Federal and state funding statistics relating to benefits and highlighted the difficulty for families of navigating the labyrinth of regulations and programs. He discussed funding tradeoffs and relative differences in how families seeking benefits are treated while going through the system. He noted the potential impact of rapid and large demographic changes in our aging society on Social Security and Medicaid funding for people with disabilities. He defined and clarified financial planning issues for families and individuals with intellectual disabilities and highlighted the problems and potential for progress through the words of many of the leading advocates in the field. He concluded with a discussion of the potential for problems in a single payer system and then answered questions.

Chairman Sweezy called for brief meetings of the Subcommittees to review, consider and perhaps improve their contributions for the Report to the President.

Following the meetings of the Subcommittees, the Chairs of the Subcommittees gave reports on the activities of their Subcommittees. The reports included proposed changes to their respective sections of the Report to the President and any suggested changes in their proposed recommendations. A discussion was held with members of the full Committee on proposed refinements of their contributions as presented by the Chairs of the Subcommittees.

The Committee also discussed, at length, using the overriding theme of the inherent and economic value of people with intellectual disabilities to tie together the various components of the report. Committee members agreed that the value theme was the preferred way to organize the report. Several suggestions were made in the context of this discussion, including the potential for a White House conference to promote a private enterprise ad campaign that would focus 1% of the participants’ ad budgets on communicating the value of people with intellectual disabilities; urging the President to recognize people with disabilities in his State of the Union Message; and making special education training (in one form or another) mandatory for all teachers.

Sally Atwater reminded the Committee of the time necessary for Departmental clearance of the Report to the President and urged them to take that into consideration when planning their next steps. The Chair reviewed Committee discussion on preparation of the Report and indicated he would like to see a first draft in time for the next quarterly meeting which was proposed for May 2007.

A motion was entertained and seconded for adjournment of the meeting. The Chair announced that the meeting was adjourned, which took place on Friday, February 16, at 12:35 pm.