PCPID Quarterly Meeting: April 24–25, 2008

Proceedings of April 25​, 2008

Chairman Sweezy began the April 25, 2008 session of the PCPID quarterly meeting with an announcement that he had changed the agenda to:

1. allow the Committee to rewrite the section of the draft 2008 Report to the President that focuses on fetal alcohol syndrome, and discuss some recommendations around research;
2. receive ex officio updates, “as needed,” only if agencies had new initiatives about which Committee members have not already been informed; and
3. finish the day with in group sessions to work on the 2009 Report to the President. Steve Suroviec suggested that, in the future, rather than taking time during the meeting to verbalize updates, ex officio representatives prepare a brief written update and submit it in advance for inclusion in members’ resource packets so the information may be reviewed and members have an opportunity to ask questions.

Stephen Hollingshead moderated the discussion of comments and suggested edits to the 2008 Report by first asking members to flip the two sections of the report (as suggested by RoseAnn Ashby and others the previous day), put pages 8 through 12 on top, and then suggest edits to the document page by page. He noted that additional footnotes and references were needed which would be included later by staff. A very lengthy discussion period ensued during which Committee members share individual review comments including, but not necessarily limited to the following:

• Highlight, as central, the point (shared by MaryMargaret Sharp-Pucci) that although significant progress has been made with the accelerated rate of translational research, not only in America, but throughout the world, the Institute on Medicine describes a lag that is unnecessarily long, between 15 and 20 years, between scientific discovery and integration into practices. [Hollingshead and Sweezy]
• Provide an example to illustrate the point and problem. [Balkus]
• Add a qualifier to let the reader understand it better even in the age of internet, because of the possible assumption that this is pre-internet and not still going on. [Tienken]
• Use lay language to introduce translational research. [Sweezy]
• When the term “mental retardation” is not part of a quotation, do a search-and-replace of the term with “intellectual disabilities.” [Sweezy]
• State the recommendations up front and follow with details related to the recommendations. [Sweezy]
• The executive summary should be one page, with the recommendation almost in the title if possible. [Hollingshead]
• Include, in the executive summary, an explanation of the Committee’s motivation for focusing on FAS (because it is 100 percent preventable). [Dennis]
• Provide less detailed information when citing examples of research consortium models. [Sweezy]
• Regarding the order in which information about the research consortium models are presented, statements regarding “Benefits,” on page 12, should come after information at the top of page 11. After the discussion of consortiums, include the benefits of consortiums, and then state the recommendations. [Gross]
• Regarding the recommendation to establish and expand research consortiums, when considering the issue-specific or the discipline- specific, note that there’s a difference between saying that they work effectively versus that’s the only way to do it. For purposes of FAS or Fragile X, emphasize that if it makes sense to do a discipline-specific or issue-specific consortium, then that’s what the Committee is recommending. [Suroviec]
• In the FAS section, one of the recommendations could be to create a consortium of FAS facilities. [Ashby]
• Delete all paragraphs that do not deal with intellectual disabilities. [Sweezy and Hollingshead]
• Change the title to “Defeating the Single Most Preventable Cause of Intellectual Disabilities in the United States: Fetal Alcohol Syndrome.”
• Recommendations regarding research consortiums should specify identifying and recruiting clinics into a consortium. [Hollingshead]
• Regarding recommendations related to FAS, delete specific references to targeted populations. [Sweezy and Hollingshead]
• Take out all references to FASD except the first one, which explains the difference between FASD and FAS; but include that within FAS, about half the folks have intellectual disabilities. [Hollingshead]
• The report should include a recommendation that FAS be targeted as public health issue. [Dennis]
• If the report includes a recommendation aimed at children with FAS, it should have more information describing and supporting that recommendation than the draft report now carries. [Balkus]
• The report should address something that the Committee has not talked much about; that is, how we can access and use research that might help children with FAS function better. [Ashby]
• The report should include that the doctors (Warren, Chang, Coles, Anderson, and Linde-Feucht) invited to discuss prevention of FAS had consensus that FAS is under-reported, and that “these kids aren’t even counted,” because this bolsters the Committee’s argument for better and more data. [Carroll]
• Instead of erasing all reference to FASD from the report, acknowledge the Committee’s awareness that FASD is the most current accepted term in the field, and that FAS is recognized as an FASD. [Tartaglia]
• Discuss primary disabilities and problems in individuals who have FAS. [Tartaglia]
• Briefly describe the controversy related to diagnosis and reporting, and why there is such a range of the statistics; because that’s really an area of needed research. [Targaglia]
• Include a discussion of primary disabilities and problems in individuals who have FAS. [Tartaglia]
• Define what the Committee wants in the area of outreach for educational purposes, to include the need for early education regarding the causes and effects of FAS. If we’re going to have a recommendation that’s aimed at children with FAS, there should be more information in the report that describes and supports that recommendation. [Balkus]
• Information on incidence and prevalence of FAS should be included in the report as a research need, on the first page. [Balkus]
• Include a recommendation that more information about FAS is collected at earlier levels, and strengthen the argument for better and more data by including that the doctors reporting before the Committee agree that, although the stats related to incidence and prevalence are all over the place, FAS is under reported. [Sweezy and Carroll]
• Include a recommendation that the Federal Government (the Department of Justice) conduct an analysis of the prison system to determine the prevalence of adults with FAS. [Sweezy]
• Include pictures of individuals and families affected by FAS. [Hollingshead]
• Include that FAS be targeted as a public health issue; and include a section on brief interventions in the bibliography. [Dennis]
• Begin primary prevention efforts early, possibly as early as middle school, and define what we want as far as outreach for educational purposes are concerned. [Roach, Tienken, Hollingshead, Reilly, and Balkus]
• Include a statement recognizing the contributions of people who have come before us, like Eunice Kennedy Shriver, worked on behalf of people with intellectual disabilities, and laid a lot of groundwork to provide the gains that people with intellectual disabilities now enjoy.
• Include a statement in the introduction or executive summary noting that this Committee has begun work on barriers to employment, focusing primarily on education and best practices; and that the current Committee encourages the next Committee to continue work in this area.

Additionally, Linda Starnes expressed concern regarding limited funding to support PCPID meetings, and stated that there needs to be a recommendation that the President work with Congress to create a line item budget for the Committee. Sally Atwater stated concurrence with Mrs. Starnes’ suggestion, noting that staff hoped to have a line item included in the 2010 budget, but learned that the Administration has decided against submitting a budget to Congress. She added that there is a precedent for the prospective line item. The President’s Council for Physical Fitness and Sports already has a line item in the budget. Dr. Hollingshead expressed belief that including this budgetary information in the report might make it harder to get the report published, and suggested a letter to the President instead. Chairman Sweezy agreed with Dr. Hollingshead, and stated that he would rather address the letter to the Secretary of Health and Human Services. Dr. Hollingshead suggested that staff schedule a telephone conference to discuss this concern. Mrs. Starnes also asked that she and other PCPID alumni be kept abreast of the Committees activities, initiatives and special events. Ms. Roach informed Committee members of a group known as Friends of PCMR, established by former Executive Director, Fred Krause, to support the Committee and disseminate information about its activities.

After receiving suggested edits, Kodie Ruzicka noted that information included in the draft report came from either NIH (in general), NIAAA, SAMHSA, CDC and Dr. Streissguth.

Jewel Bazilio-Bellegarde announced that the Corporation for National and Community Services will sponsor a National Conference on Volunteering and Service June 1–3, 2008 in Atlanta, Georgia.

Chairman Sweezy informed members that two Committee members and staff accompanied former PCPID Chair, Madeleine Will, on a site visit to the College of New Jersey and Mercer College, in New Jersey; both of which provide people with intellectual disabilities an opportunity to participate in post-secondary education. Linda Starnes described the programs, noting that they are tuition-based. Jewel Bazilio-Bellgarde reminded the Committee that one of the ways that students may pay for this type of educational opportunity is by completing a year of national service to earn an “education award” (approximately $4,700.00) that goes directly to any Title IV institution of higher learning. She noted that the Corporation has higher education programs and offers grants to create a service program. Casey O’Halloran informed the Committee that he attended Edison Community College in Fort Myers, Florida, and enjoyed it!

Stephanie Preshong Brown provided a brief PowerPoint presentation. Sally Atwater informed the Committee of a notice in the Federal Register April 24, 2008 announcing a priority to provide $500,000 for funding of a center to conduct research, over a three year period, on the kinds of post-secondary programs that are open to student with intellectual disabilities. Ms. Atwater and Mrs. Starnes also mentioned a five-year long-range plan (2010–2014) being developed by the National Institute on Disability and Rehabilitation Research (NIDRR), and encouraged PCPID members to submit comments (up to 2 pages) to the Institute.

Chairman Sweezy thanked Linda Starnes and Stephanie Preshong Brown for the briefing on the site visit to the post-secondary education programs. He also thanked citizen and ex officio members of the Committee and staff who worked on the 2007 Report to the President, and the draft 2008 report. Mr. Sweezy also suggested that the 2008 report should include a statement recognizing the contributions of people who have helped lay the groundwork that has resulted in privileges that people with intellectual disabilities currently enjoy. Mr. Tienken noted that the statement should be specific and include the people who testified before Congress, as well as every day people.

Several ex officio members shared updates regarding their agency’s initiatives that affect the quality of life for people with intellectual disabilities and their families.

Richard Balkus directed Committee members’ attention to the last entry in his handout, noting that it is the Social Security Administration’s current effort to do something with it’s working set of policies, and that the Commissioner is very interested in improving these policies…simplifying them. The Administration is trying to craft legislation that can work its way within the agency. Jewel Bazilio-Bellgarde recognized that SSA is working to change the legislation that allows a person with a disability who receives SSI or SSDI to not have their Americorps stipend count as a wage. It didn’t make it through the legislative process this year, but the Corporation for National and Community Services is hoping that it will next year because it can be a barrier. One of the benefits of engaging in national service is a stipend that, in a certain part of the Corporation’s program, is counted as income. It can impact any Social Security benefits that an individual receives.

Julie Carol stated that the National Council on Disability just published a report, Keeping Track, calling for better statistics on indicators of quality of life for people with disabilities. She believes the report may be useful for documenting some of the information in the PCPID 2008 report. Ms. Carol stated that the Council will be conducting a study on the Developmental Disabilities Bill of Rights Act, and how it is administered. She noted that it will be an evaluation project, and asked Committee members who know people in the field who might be interested, to direct them to the NCD.

Stephen Hollingshead mentioned that the President made a goal of eradicating elevated lead blood levels, one of the environmental causes of intellectual disabilities in children, by 2010. This is among the environmental causes of intellectual disabilities. The last year that the CDC published numbers is 2002 when the number had been reduced from about 900,000 in the early 1990’s to 310,000 by 2002. Currently, there are 230,000. Dr. Hollingshead also mentioned that the U.S. Department of Housing and Urban Development has worked to get Congress to give joint authority to the Environmental Protection Agency and to HUD to enforce the lead disclosure rule about what is in these properties, and make sure that tenants know the danger that may be there for their children.

Following the ex officio updates, Steve Suroviec asked staff (Laverdia Roach) if the Committee has had the opportunity to make recommendations to the President with regard to things going on in other countries, and if the current Committee will ever report in that regard. Ms. Roach apprised members of past activities in international initiatives in the field, noting the work of the former PCPID Subcommittee on International Affairs that focused primarily on deinstitutionalization strategies. Mr. Suroviec shared “a parting comment for future committees” that things going on in other countries are looked at by PCPID. He mentioned his hope that the Committee think about using the President’s office, as Head of State, to do more to encourage other countries to progress at least to where the United States is.

Mr. Tienken asked the Chair if it is “almost a suffix of the 2008 report that we put in potential things for the next Committee to look at.” Mr. Sweezy replied, “Yes.” He noted the areas of education, barriers to employment, and best practices; and stated that this information be included in the executive summary or introduction.

Chairman Sweezy reiterated appreciation to the Executive Director and staff, and then entertained a motion to close. Tom Reilly interjected, before the motion, that the Committee should send an e-mail to Harris Hollin, stating that members missed him and hope he’s feeling better. Dr. Hollingshead replied that he had already started the message on his Blackberry.

Chairman Sweezy adjourned the Quarterly Meeting at 1:00 p.m.