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
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.