PCPID Quarterly Meeting: April 24–25, 2008
President’s Committee for People with Intellectual Disabilities
- The President’s Committee for People with Intellectual Disabilities (PCPID)
- Announcements, Meeting Announcements, Publication (Documents and Resources), Meeting Minutes
- Meeting Minutes, Meeting Announcement
|Ex officio Representatives|
Christopher Button and Sue Picerno Representing the Honorable Elaine L. Chao, Secretary, U.S. Department of Labor
Stephen B. Hollingshead
Mary Kay Mauren
Sharman Word Dennis
Carmela Vargas Gonzales
Casey Patrick O’Halloran
Stephanie Preshong Brown
Thomas J. Reilly
Linda Hampton Starnes
Stephen H. Suroviec
Dallas (Rob) Sweezy
William (Will) Tienken
Sally Anderson, Ph.D.
Ahmed Calvo, M.D., M.P.H.
Grace Chang, M.D., M.P.H.
Claire Coles, Ph.D.
Sarah R. Linde-Feucht, M.D.
Nicole Tartaglia, M.D.
Kenneth Warren, Ph.D., Chair
|Staff||Constituency Group Representatives and Other Guests|
Sally Atwater, Executive Director
Laverdia T. Roach
Christina Chelsley, HRC
Charla Hodges, NHMA
Judy O’Halloran (Mother of PCPID member,
Casey Patrick O’Halloran)
Proceedings of April 24, 2008
The April 24–25, 2008 meeting of the President’s Committee for People with Intellectual Disabilities (PCPID) was called to order by Designated Federal Official Representative and PCPID Executive Director, Sally Atwater, who welcomed meeting participants and asked Committee members and guests to identify themselves. Ms. Atwater stated that she would turn the agenda over to PCPID Chairman, Dallas (Rob) Sweezy, who would provide an update regarding activities since the last quarterly Committee meeting (February 15, 2008); and that the film, Life in the Shadows,would be viewed following Mr. Sweezy’s brief update.
Mr. Sweezy reviewed the evolution of plans for preparing the 2008 PCPID Report to the President, starting with the original plan to organize into three work groups, each tasked to address one of three topics (Investing in People, Removing Barriers to Employment, and Promoting Employment of People with Intellectual Disabilities). He noted his receipt of information from two group leaders that there would not be enough time to do justice to the issues by the May 11th, 2008 deadline and the Committee’s decision to move forward with the single issue of research as it relates to the topic, “Investing in People” with intellectual disabilities.
The Chair noted that a series of work group meetings had been convened, via conference call, since the last Committee meeting, and restated his commitment to group leaders that the Committee would continue to move on any work that had been done on the other two issues (removing barriers to employment and promoting employment) and that they would be a foundation for the 2009 Report. He expressed desire to have language toward the end of the 2008 Report that points to the 2009 Report, stressing that these issues have been identified by the current Committee as important, and expressing hope that the next Committee will continue work on these issues. He also speculated that although there will be some new members, the preponderance of the Committee will be the same, and that the employment issues being addressed by current groups are significant, and “a good road bed to set” for the 2009 Report to the President.
Mr. Sweezy presented a brief overview of the Committee’s charge for the two day meeting, noting a couple of minor rearrangements of agenda items. He asked if there were questions. Hearing none, he invited staff to proceed with showing Life in the Shadows, a film that documents the history of the establishment and evolution of the National Institute of Child Health and Human Development (NICHD). Sally Atwater informed members that the film was shown at the ceremony renaming the NICHD, the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
Immediately following the film viewing, Stephen Hollingshead introduced panelists for the Panel Discussion on Research Translation Through the Continuum Model: Nicole Tartaglia, M.D., Assistant Professor of Pediatrics, Children’s Hospital—Denver, Fragile X Treatment and Research Center, University of Colorado and Ahmed Calvo, M.D., M.P.H., Acting Deputy Director, U.S. Department of Health and Human Services, Health Resources and Services Administration, Center for Quality, Office of the Administrator.
Distinguishing between the topics that would be discussed by the speakers, Mr. Hollingshead pointed out that there are two kinds of translational research: T1 and T2. T1, Dr. Tartaglia’s topic, is essentially from the research bench to the bedside. T2, Dr. Calvo’s topic, is related to the dissemination of research.
Dr. Tartaglia stated that she was invited to the meeting by Harris Hollin to speak as a representative of the Fragile X Clinic and Research Consortium to talk about the consortium and how it is a model for clinical care and translational research for individuals with intellectual disabilities. She started with a slide presentation showing pictures of children and families served by the consortium in terms of doing translational research and treatments for individuals with Fragile X. Regarding Fragile X, Dr. Tartaglia presented much data including, but not limited to, the following:
- Fragile X Syndrome is the most common genetic disorder that is known to be associated with autism; 30 percent of individuals who have Fragile X syndrome have autism, and up to 60 percent actually can fall on the autism spectrum. Three to six percent of all individuals with autism have Fragile X syndrome.
- Fragile X is caused by a mutation on the X chromosome in the FMR1 gene responsible for producing a protein that’s important in neurodevelopment and in synaptic formation and connection. So in Fragile X that gene is turned off, that protein is not there, neurodevelopment occurs in an incorrect way, and synaptic development does not occur properly. When that gene expands, when you observe it under a microscope, the end of the chromosome actually breaks off, and that’s how it was named Fragile X syndrome. This leads to intellectual disability of varying degrees in almost 100 percent of patients. The average age of diagnosis of Fragile X is two and a half to three years old. Interventions are usually begun at that time. Physical features include a long face, prominent ears, and some cupping of the ears. You also see hyper-extensibility of the joints and behavioral features that may include many autistic behaviors such as hand flapping, eye avoidance and social anxiety. Seizures are experienced by about 25 percent of the population.
- Mild Fragile X can be learning disabilities. Cognitive scores that are not in the intellectual disabilities range, but more in the borderline range, are affected with neurodevelopmental disorders like attention deficit hyperactivity disorder (ADHD) or social anxiety types of problems.
- The Fragile X gene is something that impacts generations of a single family (a son or daughter, one of the parents and one of the grandparents, evidenced by: learning disabilities, speech delays, motor delays, premature ovarian failure, neuropathy and muscle pain, tremor of the hands, and/or Fragile X Tremor Ataxia Syndrome (FXTAS).
- One in 129 females and one in 800 males in the general population is a carrier of the Fragile X gene or has the permutation. Of the one in 800 about 30 to 60 percent go on to develop FXTAS. Current research is basically on those people who are carriers; what predicts whether they’re going to develop FXTAS.
The “model” described by Dr. Tartaglia is for the Fragile X Treatment and Research Center at the University of Colorado and the other 18 clinics that are part of the consortium, although they’re all a bit different. Regarding the Fragile X Clinic and Research Consortium as a model for advancing translational research to the benefit of people with intellectual disabilities, Dr. Tartaglia noted the following:
- In a Fragile X clinic, there is the Director (usually a physician, but may be a developmental pediatrician, child neurologist, geneticist, or child psychiatrist) and a multidisciplinary team of individuals (psychologist, speech and occupational therapist, genetic counselor, neurologist) trained and experienced in assessing, evaluating, and treating individuals with Fragile X syndrome. In most clinics, a big part of the clinic activity is research in terms of clinical trials of treatments and basic research, collecting blood samples and conducting basic science research.
- The clinic provides: treatment recommendations (including psychopharmacological treatments in terms of treating a lot of anxiety or mood instability); behavioral strategies; intervention therapy; speech, occupational, and physical therapy; psychological treatments; medical evaluations for seizures, sleep disorders, or other problems that are associated; medical treatment and referrals for the permutation associated conditions; follow-up for some medications; teaching and coordinating care with primary care providers. Clinic representatives also participate in IP meetings, go to staffings, and help facilitate problem solving behaviors in the schools.
- The consortium was established in 2006 by the National Fragile X Foundation in response to parents expressing need for clinical services. The Foundation raises the money to fund the clinics. The consortium became a forum for professional collaborations and research collaborations, as well. In 2008, the Foundation developed the Clinics and Research Consortium. All of the clinics are tied to big university medical centers and hospitals. Dr. Tartaglia will provide a list of the centers.
- There are similar consortium models in terms of autism, but there are no similar models that are driven by the national foundations and are true collaborative efforts of all the clinics. There are Down syndrome clinics almost in every state, but it’s questionable whether there is that consortium that is actually pulling all the clinics together to use it as a centralized database as extensively as it can be. The same is true for fetal alcohol syndrome. There are scattered clinics and research centers that collaborate, but it’s not as strong and comprehensive as the Fragile X model.
- Goals of the consortium are to: improve clinical care for Fragile X patients and families by specialized evaluations and treatments using experienced providers who are able to help families; expand the knowledge base for effective interventions; use consortium collaborations to increase and improve interventions for Fragile X families; improve care for difficult cases; and use clinics in specific geographical areas to provide outreach and education so that schools and other providers and community agencies in each state have access to exchange of information with the clinics.
- There’s a lot of new basic science research occurring where there are new pharmaceutical agents that actually interfere in that pathway where the Fragile X protein works. The consortium can help boost the action of the Fragile X protein that is there and help with neurodevelopment. Consortium members want the consortium to be big so that when new agents and medications come out, there will be many different sites studying the medications and helping to use them to cure Fragile X, which is the goal of the consortium. The goal to cure Fragile X is to be able to work on replacing that protein or stimulating that same pathway and the places where that protein works in neurodevelopment.
- The consortium is working on developing standards of comprehensive service to be provided by all the clinic members.
- Some of the challenges to the clinic are: some of the staff positions and services (such as assessment and treatment for intellectual disabilities) that “really tie the clinic together” are not billable to insurance, and must be funded by the institution or funded by research grants or other types of grants to sustain the clinic
Mr. Hollingshead thanked Dr. Tartaglia for an interesting presentation and introduced Dr. Ahmed Calvo, who used a PowerPoint presentation that is available upon request.
Dr. Calvo started by talking about the dissemination of science (T2). He clarified that translational science in the sense of taking the bench to bedside is similar to the notion of coming up with a new medication, doing a good clinical trial, and going from animal models to testing in humans; you still have to figure out how to get it out to the rest of the population. There’s a 15 to 17 year lag between when something is known at the National Institutes of Health (NIH) before it’s used in the rest of the country. Although the NIH is doing tremendous work in the T1 research, less than one percent of the total budget is being used for dissemination.
Dr. Calvo announced that he would be describing how the U.S. Department of Health and Human Services Health Resources Services Administration (HRSA) health disparities collaboratives came to be and worked, noting that collaborative is basically an evidence-based approach that addresses health outcomes using a set of activities known as the expanded or chronic care model focused on using a systems approach and strategic partnerships. HRSA is a sister agency match in terms of reporting structure to the NIH, or CDC, or Agency for Healthcare Research and Quality (AHRQ) reporting directly to the Secretary. HRSA is known as the access agency dealing with underserved communities and safety nets, whether disproportionate share hospitals (DSH), community health centers, or related things like the HIV/AIDS Bureau that funds AIDS care. Dr. Calvo asked Committee members to focus on how the following seven goals fit together in the collaborative process:
- Public Health and Healthcare Systems
- Public Health Emergencies
- Excellence in Management.
Dr. Calvo emphasized that there are several types of collaboratives: disease or chronic disease collaboratives using the chronic care model; collaboratives in diabetes, cardiovascular, depression, asthma, oral health and AIDS; business, case redesign, patient flow collaboratives; and prevention collaboratives in cancer screening, diabetes prevention and general prevention collaboratives. There is also a new patient safety and clinical pharmacy collaborative that will be launched soon. This will involve all kinds of safety and it will be the largest collaborative ever in the nation.
Regarding the current delivery of care situation, Dr. Calvo noted the following:
- There’s 20 percent compliance with guidelines in terms of any clinical decision going on in the nation.
- There’s about a 3:1 staffing ratio, with unacceptable delays and waits.
- 45 percent of the internet traffic is patients or families seeking self-management information.
Dr. Calvo’s bottom line is that a wider self-management public health service and the concept of a prepared, proactive community through community-oriented primary care is needed. A national learning community has been developed, a population health management with multiple registries and reporting processes and some national policy implications in public and private partnerships. The mechanics of this is supported by a whole set of activities. Dr. Calvo referred audience participants to healthdisparities.net for additional information. He manages this website that is getting 10 times the volume of the rest of HRSA combined.
Significant benefits of the collaboratives are: 1) the existence of a network of subject matter experts throughout the nation who are knowledgeable about one particular issue or another, and committed to sharing with each other; and 2) a dissemination infrastructure with websites. The government owns the websites that have the ability to coordinate the mechanics, so it’s on the public domain in terms of research available to other parts of the government. Public Health Departments are starting collaboratives for which HRSA collaboratives provide the mechanics of the actual technology; so it’s costing them zero dollars at each of the state health departments and each of the different local communities.
PCPID citizen member, Steve Suroviec, asked if HRSA has considered getting into the area of collaboratives relative to population-based issues. For example, people with intellectual disabilities that are in a community, may be getting waiver services, and looking at their health situation (whether they get proper nutrition and proper dental care, or whether they are isolated and experiencing depression or alcoholism, etc.). Dr. Calvo said the short answer is yes. PCPID ex officio representative from the US Department of Health and Human Services, Margaret Giannini, M.D., amended Dr. Calvo’s answer to note that, there is a program in the Bureau of Maternal and Child Health, for children with special needs, which is a collaborative program with the American Academy of Pediatrics and a constituent parent organization called “Family Voices.” She said the collaborative is working very well, but more are needed.
In response to several Committee members’ queries related to cost-effectiveness, Dr. Calvo shared that of the total NIH research dollars on basic T1 research, one percent is the T2 activity, including AHRQ funding. If we compare the T1 and T2, it’s about one percent of T2 dollars. Dr. Calvo said it might be in the public’s best interest to make sure that the investment in the T1 is, in fact, leveraged and actually used; adding that with a relatively much smaller percentage change, that could be achieved in many cases. Regarding cost-effectiveness comparisons, he stated, you have to have a basis for comparing across different types of interventions. That’s what the dollars per quality kind of concept is about. It can range widely from a few thousand dollars to millions of dollars per quality, meaning for per quality adjusted life year that is improved upon, or the life extension of the individual receiving the intervention. This intervention by outside investigators is very cost-effective relative to any measure that is used. Replying to the question related to the cost to run a new collaborative, Dr. Calvo commented that if an organization is already running conferences on a particular subject or convening and collaborating with people, then it should be fairly budget-neutral to whatever else you might do.
Dr. Calvo said the “take home message” is that the medical home within the health disparity collaborative is a seamless, responsive coordination of care within the community, within the healthcare organization and within the internal and external systems that relates them based on the care models and evidenced-based handoffs.
Mr. Hollingshead thanked Dr. Calvo for a fascinating PowerPoint presentation (available to Committee members, upon request).
Following lunch, Mr. Hollingshead presented the Panel on Prevention and Fetal Alcohol Syndrome (FAS) moderator: Kenneth Warren, Ph.D. and Chairperson, Interagency Coordinating Committee on Fetal Alcohol Syndrome. After introducing himself, Dr. Warren asked for self-introductions from the panelists: Grace Chang, M.D., M.P.H., Claire Coles, Ph.D., Sally Anderson, Ph.D., and Sarah R. Linde-Feucht, M.D.
Claire Coles began by stating that she would speak on the individual effects of prenatal exposure to alcohol and some of the community impact of that. She discussed fetal alcohol syndrome (FAS) as a birth defect that causes facial malformations, growth retardation, brain damage and a lifelong intellectual disability. FAS is only the most obvious and most severe outcome of prenatal exposure to alcohol. It is estimated that one per 1,000 people has FAS. That varies depending on the population being observed and the type of ascertainment method that has been done. Partial FAS affects approximately five per 1,000 and it is believed that alcohol-related birth defects may be up to one per 100. Dr. Coles pointed out that getting evidence of exposure is not always easy, particularly if the child is an adolescent. The Institute of Medicine (IOM) criteria does allow clinicians to define or diagnose FAS if the person has the characteristic facial features, evidence of growth retardation, and shows evidence of neurological damage.
Dr. Coles also discussed fetal alcohol spectrum disorders (FASD), as a theoretical spectrum of defects known to be occurring as a result of prenatal alcohol exposure. She noted that FAS and FASD are lifelong disabilities characterized by neurodevelopmental cognitive deficits caused by damage to the central nervous system due to alcohol exposure. Dr. Coles stated that about 50 percent of the people who are diagnosed with FAS have an IQ less than 70, and shared slides showing that children who were alcohol exposed in utero show significant loss of brain volume. She emphasized that her clinic has found that the best kind of medical home for an individual with FAS uses a team of professionals that includes a medical doctor, geneticist, psychologist, physical therapist, occupational therapist, and speech and language therapist.
Sue Picerno, ex officio representative from the Department of Labor, asked if a woman with FAS has a child, and does not drink during her pregnancy, does she pass along any of the medical problems? Dr. Coles cited a study that found a slightly lower birth weight in children of women who had FAS who were not drinking in pregnancy, but they did not have the facial features or the cognitive outcomes. Dr. Warren added that there is evidence where effects were seen that passed for a least three generations.
Mark Gross, ex officio representative from the Department of Justice, asked if treatment for the child diagnosed with FAS or FASD differs from treatment for other types of intellectual disability. Dr. Coles replied that some of the same treatments would be appropriate, but with a slightly different approach because with Down syndrome there is more language disability, whereas with FAS there is less language disability and more nonverbal disability.
Dr. Warren thanked Dr. Coles for her presentation and asked Grace Chang to talk about prevention of fetal alcohol injury by screening and brief intervention with women in a prenatal clinic. Dr. Chang announced that she would address identification and prevention of prenatal alcohol use. She reported that prenatal drinking is a common problem. Six percent of women will drink frequently. The Department of Health and Human Services healthy people goal for 2010 is six percent. Thirteen percent of pregnant women will drink, and about 40,000 babies are born annually with FASD. The lifetime cost of each child is up to $2 million. Asked how much is too much alcohol during pregnancy, Dr. Chang replied that there is no safe limit, and no safe time to drink during pregnancy. Even alcohol exposure in the second and third trimesters can have consequences.
Dr. Chang discussed some of the challenges in identifying prenatal alcohol use, options and instruments for identifying prenatal alcohol use and the pros and cons of the various approaches, outcomes from alcohol exposed pregnancies, randomized studies, and recommendations. She emphasized that screening instruments should have the appropriate balance between sensitivity and specificity in order to reflect accuracy. Women should not be made to feel guilty and, therefore, not give the right answer. A positive screen should be viewed as an opportunity to clarify answers, review history and drinking habits and think about assessment and treatment interventions.
- In response to the Committee’s request for recommendations, Dr. Chang offered the following:
- There should be consistent screening for alcohol use by pregnant women and women considering pregnancy with the appropriate measures.
- Brief interventions for risky drinking before and during pregnancy should be offered consistently.
- There should be a consistent message that there is, in fact, no safe level or time to drink while pregnant.
Responding to Committee members’ examples of empirical evidence that family members and friends consumed alcohol during pregnancy without causing a problem (FAS), Dr. Chang pointed out that: 1) the children may, or may not, be perfectly normal; and 2) there’s not a one to one relationship between alcohol exposure and outcome. Different groups of people will be more vulnerable to the negative effects of alcohol exposure than others. It is likely that minority women are going to have more negative effects from alcohol exposure. Dr. Warren amended Dr. Chang’s response by stating, “We start to see statistically significant adverse outcomes in humans with drinking levels of around four drinks per occasion once per week. In the lower doses, we still see effects (repression of fetal breathing, moving, and repression of fetal movements). We know that the alcohol is affecting the central nervous system of the developing fetus at the time that it’s not practicing breathing.” PCPID citizen member, Steve Rhatigan, pointed out that in some states, abstaining from alcohol during pregnancy is the law. Dr. Warren noted that some states (North Dakota and South Carolina) have made consumption of alcohol during pregnancy a legal issue. He noted that the best way to prevent FAS is to treat it in a medical context. If a woman is drinking during pregnancy and she’s afraid to come in to the doctor because she feels that the legal system is going to intervene, she just won’t go in for prenatal care, and that’s even worse.
Dr. Warren presented the next speaker, Dr. Sally Anderson, who addressed the joint effort that has existed by act of Congress in 1996 to establish an Interagency Coordinating Committee on Fetal Alcohol Syndrome (ICCFAS), originally across only the Department of Health and Human Services, but now including the Department of Justice and the Department of Education. Dr. Anderson announced that Dr. Ken Warren chairs the ICCFAS and she is coordinator and executive secretary. She noted that the Director or Chair has always been a senior official at the National Institute on Alcohol Abuse and Alcoholism (NIAAA). Dr. Anderson stated that she would not talk about research so much; but, rather, what different Federal agencies are doing about the problem of fetal alcohol syndrome. NIH agencies, NIAAA and the National Institute on Child Health and Human Development (NICHD), do basic and clinical translational research. The Centers for Disease Control and Prevention (CDC) do public health research and translational research, bringing research to practice. HRSA does translational research and demonstration projects trying to bring the research into practice. ARHQ does evaluation of research and recommends evidence-based practice. The Indian Health Service also does studies on best practices and healthcare delivery. The education system and the Department of Justice do research, demonstration projects, and technical assistance. The themes currently focused on by the ICCFAS are:
- prevention of drinking during pregnancy;
- intervening with children and families that are affected;
- improving methods of diagnosis and case identification;
- increasing research on the etiology and pathogenesis; and
- increasing information dissemination.
Dr. Anderson cited recent data indicating that previous risky drinking is the strongest known predictor of prenatal alcohol use. A major new research agenda item at NIAAA is to look at the mechanisms of behavior change to better understand the mental profile of people that successfully change their drinking behavior (how they decide to change their behavior), so this information may be used as a tool in future initiatives. SAMHSA is providing technical assistance to Native American communities to increase prevention of alcohol and other abuse. CDC has collaborated with the National Organization on Fetal Alcohol Syndrome to develop prevention education curricula at all levels of school. Dr. Anderson noted that there has been a change in the drinking patterns in the United States among all persons, particularly young people, including young, pregnant women. Binge drinking is much more prevalent.
Dr. Warren thanked Dr. Anderson for her enlightening presentation, and introduced the next speaker, Dr. Sarah Linde-Feucht, who discussed the DHHS, Office of Disease Prevention and Health Promotion (ODPHP), Healthy People 2010 Initiative. Dr. Linde-Feucht noted that the ODPHP focuses on healthy choices we have to keep in mind; and that the choices we make not only affect ourselves, but can affect others as well. She stated that Healthy People is a comprehensive set of broadly focused national health objectives…a road map for improving the health of all people in the United States. It can be used by individuals to improve their own health and make healthy choices, by clinicians to help guide advice given to patients and put prevention into practice, by communities and businesses to support health promoting policies, and by scientists to pursue new research. The initiative, grounded in science, focuses on what is known to prevent disease and promote health. It uses determinants of health which are related to individual biology, behavior, community, physical and social environments, and policies; all of which affect healthcare. The goal is to improve health status defined as things like birth rates, death rates, quality of life, use of healthcare services, and access to healthcare.
Dr. Linde-Feucht emphasized that goals are set for each decade (with midcourse progress reviews), and that an important goals in Healthy People 2000 was reducing health disparities based on different factors like race, ethnicity, socioeconomic status, absence or presence of a disability, geography, or sexual orientation. Health disparities are seen in cases of more FAS deaths of American Indians, Alaskan natives and African Americans. Healthy People 2010 goals include increasing quality and years of healthy life and eliminating, not just reducing, health disparities. The goals must be either measurable (have a nationally validated data source, starting point, baseline or benchmark) or developmental (do not have a starting point, but are expected to have a data source by a future target date that will make the goal measurable). As baselines get adjusted, targets can also get adjusted. Some of the Healthy People 2010 focus areas are related to disease and some are related to determinants. Focus area 16 is maternal, infant and child health. The goal of that focus area is to improve the health and well-being of women, infants, children and families. Objective 16–17 is to increase abstinence from alcohol, cigarettes and illicit drugs among pregnant women.
Dr. Linde-Feucht stated that prevention is also getting on the radar screen of the public health policy folks; adding that focusing on prevention behaviors are a primary determinant. She addressed the common belief that prevention is hard to measure because one can’t measure what doesn’t happen. She noted that improvements in rates of diseases can be measured; and that achieving the Healthy People goals require combined efforts of public and private sector.
Dr. Linde-Feucht informed PCPID members that the process of developing the framework and objectives for Healthy People 2020 is underway. This process requires huge public input. The Healthy People 2020 website contains information about public meetings and opportunities to provide input.
Several Committee members inquired regarding the involvement of men in the FAS research or projects. Responding, Dr. Warren stated that males are not involved in a number of studies because most of the interventions are done in prenatal clinics. In some studies, however, including Dr. Grace Chang’s project, males are involved. Dr. Warren explained that there are three levels of prevention approaches: universal prevention, targeting males and females; selected prevention, focused on high risk populations where women may not be drinking, but are coming from settings where heavy drinking is common; and indicated prevention, for individuals who have an alcohol problem in the FAS world sometimes demonstrated by the fact that they’ve already had a child with FAS. There are activities to include the male partner at all three levels.
Dr. Tartaglia shared that, in her experience in the field, FAS is not the single greatest cause of intellectual disability. She stated that in all intellectual disability, there is a genetic cause in up to 30 percent; and with new technology, it’s up to 40 percent. A lengthy discussion ensued regarding incidence and prevalence rates in FAS. At the request of PCPID citizen member, Linda Starnes, Dr. Claire Coles will share copies of her presentation addressing epidemiological data with Committee members.
Chairman Rob Sweezy stated that Committee members have identified FAS as an issue that they want to take on, and he invited Panel members to share with PCPID suggested recommendations for the Committee’s report to the President.
He added that we want to make “bold” recommendations. Dr. Coles offered two: 1) to help prevent FAS by helping women become abstinent; and 2) identify children diagnosed with FAS in the special education laws so they will start getting services early. Dr. Anderson asked PCPID to suggest that the President support legislation for equality of treatment for mental health and addiction disorders as well as physical medical illnesses; and to encourage universal screening for alcohol use disorders. She added that there are about five large national surveys, all of which show increases in binge drinking and increased prevalence among college educated, predominantly white women, over 30 years of age. Mr. Sweezy noted that the Committee tries to keep its recommendations to actions that the Executive branch of government can address. He expressed belief that, given some of the information shared by panelists, the Committee would have to re-adjust some of the data in the draft Report to the President. Stephen Hollingshead concurred with the Chair’s belief, noting that the two individuals who did the most to push the key aspects (FAS and research) of the draft report were not present at the Quarterly Meeting. RoseAnn Ashby expressed belief that the Committee needs “something to pin the report on. She said it feels disconnected, like the first section on FAS and the second section on research should be flip-flopped. Ms. Ashby suggested that the report start with research and move into FAS. Caffin Gordon concurred with RoseAnn Ashby, stating that the Committee doesn’t seem to have enough data to substantiate where it wants to go with the report. Mr. Hollingshead asked staff to invert the order of the sections of the draft report, and disseminate the revised draft in the next couple of days so Committee members may use track changes and send their suggested edits to staff. His preference, however was that members spend an hour marking up the draft, and leaving a few suggested edits or comments on the report to be left with staff before adjournment of the meeting.
Linda Starnes inquired about the status of Reports for 2005, 2006, and 2007, noting that the last PCPID published document was the 2004 Report to the President, and that producing a report and having it published are two different things. Ms. Starnes expressed concern that the Committee may be seen as not fulfilling its charge to produce an annual report to the President. She asked if there is need to write a letter to the Secretary of DHHS expressing this concern and requesting his advice, so the Committee can figure out what it can do in the time that remains before May 11, 2008 (when tenure for several members will end) that will help get a report that gets beyond HHS and to the White House.
Chairman Sweezy replied that this is a cogent issue. A lengthy discussion ensued regarding whether the charge to the Committee is to have a report published, or simply to submit recommendations to the Secretary and to the President.
Rob Sweezy reminded Committee members of the agreement, made during the pre-quarterly meeting telephone conference, to address two issues in the 2008 Report to the President, and to take up the third issue (barriers to employment and best practices in employment) in the 2009 report. Sally Atwater reminded members that Commissioner Griffin, of the Equal Employment Opportunity Commission, was invited to brief members regarding the Schedule A Hiring Authority, and that she consented to do so via audio conference. Members expressed preference to continue working on the 2008 draft report, and to save Commissioner Griffin’s presentation until a later meeting.
The Thursday, April 24, 2008 session of the PCPID Quarterly Meeting was recessed at 5:42 p.m. to reconvene on Friday, April 25, 2008, at 8:30 a.m.
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:
- 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;
- receive ex officio updates, “as needed,” only if agencies had new initiatives about which Committee members have not already been informed; and
- 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.
- Dr. Tartaglia will provide a list of Fragile X Clinics.
- At the request of panelist, Ahmed Calvo, M.D., staff will e-mail to Committee members the article, The Meaning of Translational Research and Why it Matters, in the January 9, 2008 issue of the Journal of American Medical Association.
- At the request of Linda Starnes, Dr. Claire Coles will share copies of her presentation addressing epidemiological data related to FAS with Committee members.
- PCPID staff will invert the order of the sections of the draft report, and disseminate the revised draft in the next couple of days (by April 30, 2008).
- Staff will check with leaders of groups mentioned in the section of the draft Report that addresses research consortium models, to make sure they are comfortable with the language used to describe their consortium.
- Staff will revise the draft report to reflect Committee members’ suggested edits, and send it again to experts in the field who have met with us.
- Staff will research the budgetary provisions of other advisory committees that are similar to PCPID, draft a short letter expressing concerns related to the PCPID budget, and schedule a telephone conference with the full Committee to discuss the concerns and appropriate strategies to address them. Members will be provided an opportunity to review the letter before signing and sending, separately.
- Chairman Sweezy and Stephen Hollingshead will draft a brief statement, for inclusion in the 2009 PCPID Report to the President, that recognizes the contributions of people who have helped lay the groundwork that has resulted in the privileges that people with intellectual disabilities currently enjoy.
- Jewel Bazilio-Bellgarde will e-mail information on: a) the National Conference on Service and Volunteering, in Atlanta that CSCN is sponsoring with the Points of Light Foundation, a hands-on network; and, b) a conference in October 2008 that is specifically about including people with disabilities in national service.
- The Committee will send an e-mail to Harris Hollin, stating that members missed him and hope he's feeling better.
Note: Stephen Hollingshead started the message on his Blackberry.