PCPID Quarterly 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 to Chairman 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 Disability began 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.