ISSUE REPORT BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES: The Search for Causes and Cures J U LY 2 0 0 5 PREVENTING EPIDEMICS. PROTECTING PEOPLE. REPORT AUTHORS PEER REVIEWERS: TFAH thanks the reviewers for their time, John Meaney, Ph.D. Kim Elliott, MA expertise and insights. Research Associate Professor Deputy Director Department of Pediatrics Trust for America’s Health Janis Biermann University of Arizona College of Laura M. Segal, MA Vice President Medicine Director of Public Affairs Education and Health Promotion NBDPN Past President Trust for America’s Health March of Dimes Robert Meyer, Ph.D. Chrissie Juliano, MPP Mark Canfield, Ph.D. NCBDMP Director Public Affairs Research Associate Director North Carolina Center for Health Trust for America’s Health Texas Birth Defects Monitoring Statistics Division NBDPN Past President Jenny Mandel Consultant NBDPN Past President Lowell E. Sever, Ph.D. Stephen B. Corbin, DDS, MPH Professor of Epidemiology Shelley A. Hearne, DrPH Dean University of Texas School of Public Executive Director Special Olympics University Health Trust for America’s Health Special Olympics, Inc. NBDPN Past President Jane Correia, B.S. Carol Stanton, MBA CONTRIBUTORS Medical Information Manager Environmental Specialist Michael J. Earls Florida Department of Health Colorado Responds to Children with Public Affairs Associate Special Needs: The Birth Defect Trust for America’s Health Mark del Monte, JD Monitoring and Prevention Program Assistant Director Colorado Department of Public Laura Burson Department of Federal Affairs Health and Environment Administrative Assistant American Academy of Pediatrics NBPDN President Elect Trust for America’s Health Marcia Feldkamp, P.A., M.S.P.H. Sue Swenson Matthew Crim Director Assistant Executive Director for Intern Utah Birth Defect Network Membership, Chapter and Program Services Trust for America’s Health NBDPN President The Arc of the US Rose Stein Karen M. Hendricks, JD Kenneth R. Warlick Intern Assistant Director Director Trust for America’s Health Department of Federal Affairs Inclusive Large Scale Standards and American Academy of Pediatrics Assessment Group Sheldon H. Horowitz, Ed.D. University of Kentucky; and Director of Professional Services Secretary National Center for Learning Disabilities Learning Disabilities Association of America Stewart J. Hudson President The opinions expressed in this report do Emily Hall Tremaine Foundation not necessarily represent the views of these Russell S. Kirby, PhD, MS, FACE, individuals or their organizations. Professor Department of Maternal & Child Health School of Public Health University of Alabama at Birmingham NBDPN Past President TRUST FOR AMERICA’S HEALTH IS A NON-PROF- ACKNOWLEDGEMENTS: J U LY 2 0 0 5 IT, NON-PARTISAN ORGANIZATION DEDICATED This report is supported by grants from the TO SAVING LIVES BY PROTECTING THE HEALTH Beldon Fund, The John Merck Family Fund, and March of Dimes. The opinions OF EVERY COMMUNITY AND WORKING TO MAKE expressed in this report are those of the DISEASE PREVENTION A NATIONAL PRIORITY. authors and do not necessarily reflect the views of the foundations. BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES: The Search for Causes and Cures O ver the years, the public health and medical communities have learned a great deal about the birth defects and developmental disabilities that affect hundreds of thousands of children each year.1 Prevention, cures, and treatments have allowed many of those who might have been seriously impaired to live rich, full lives. Continued medical advances and an enhanced understanding of how disorders impact those who live with them have led to significant progress with respect to health, education, social integration, and overall quality of life. This report presents an overview of major policy development, research, public educa- birth defects and developmental disabilities, tion, and medical care, U.S. public health as well as an assessment of some recent public agencies can and should address the serious health successes, and a look at several ongo- public health implications presented by birth ing challenges. By taking the lead on sound defects and developmental disabilities. 3 AN OVERVIEW: Major Birth Defects and Developmental Disabilities Birth Defects Each year, about 120,000 babies -- one in The National Institutes of Health (NIH) 33 -- are born with a major birth defect. conducts basic and clinical research into Birth defects are the leading cause of death causes of and treatments for birth defects in children during the first year of life and through the National Institute of Child vary widely.2 Although the causes of 60 to 70 Health and Human Development (NICHD), percent of birth defects are unknown, genet- with additional research based in the ic and environmental factors are likely to National Institute of Neurological Disorders affect incidence and severity. and Stroke (NINDS). The NIH conducts research on the full range of birth defects. Birth defects encompass a wide range of abnormalities with varying levels of impact In 2001, the Centers for Disease Control and on a child’s future physical and mental Prevention (CDC) established the National health. Some birth defects are extremely Center on Birth Defects and Developmental serious and result in stillbirth or infant Disabilities (NCBDDD). death. Other defects are less severe and The NCBDDD: modern medicine prevents, detects, or treats these before birth or during infancy I Conducts data collection, research, public or childhood. Many birth defects fall some- education, and prevention campaigns for where in the middle, causing a range of dis- various birth defects. abilities, both mental and physical, that can I Runs the Metropolitan Atlanta Congenital affect children and their families for life. Defects Program, a model for state-based Congenital heart defects are the most common birth defects surveillance and a source of structural birth defects. Children with heart data for in-depth epidemiological studies. defects can be severely affected and require com- I Helps coordinate the activities of the National plex surgical and medical treatment. These chil- Birth Defects Prevention Network (NBDPN). dren are at risk of chronic illness and premature death. Children with less severe forms of heart The CDC studies genetic and environmental defects can still be affected in their quality of life. risk factors for major birth defects in the As treatment and support continually improve, National Birth Defects Prevention Study, an increasing numbers of affected individuals live ongoing, population-based study conducted longer and healthier lives. Adolescents and collaboratively with eight U.S. states. CDC adults who have been successfully treated now continues to disseminate award-winning pub- represent a growing group in the population lications and public service announcements and may have specific health care needs. promoting folic acid consumption for the prevention of spina bifida and anencephaly. Although the vast majority of birth defects CDC also is addressing fetal alcohol syndrome involve structural malformations of one or and numerous other birth defects. more organ systems, there are other reasons for childhood disabilities. Less common types The Health Resources and Services of birth defects include functional birth Administration’s (HRSA) Maternal and Child defects, which affect cognition, and metabolic Health Bureau (MCHB) is active in develop- birth defects, such as phenylketonuria (PKU). ing national screening guidelines for new- 5 borns intended to identify treatable metabolic disorders In March 2005, HRSA released a report entitled “Newborn Screening: Toward a Uniform Screening Panel” that recom- not otherwise apparent at mends a specified set of disorders for screening, discusses the birth. These defects can lead benefits of establishing a set of mandatory screenings for new- to developmental disabilities borns, and the potential role for national oversight to guide and death if not detected states and localities in screening guidelines, analyses of rare and treated in the immediate disorders, and immediate follow-up to families of newborns newborn or infant period. with positive screening results. Developmental Disabilities Developmental disabilities are a diverse group developmental disabilities in addition to moni- of chronic functional limitations that are due toring birth defects. This program, in place to mental and/or physical impairments. since 1991, currently monitors five conditions: People with developmental disabilities have mental retardation, cerebral palsy, hearing problems with major life activities such as loss, vision impairment, and autism spectrum communication, mobility, learning, self-help, disorders. In addition, NCBDDD sponsors and independent living. Developmental dis- the Autism and Developmental Disabilities abilities can begin anytime from development Monitoring Network, a group of states that are up to early adulthood and last throughout a developing or improving programs to track the person’s lifetime. An estimated 17 percent of number of children with autism spectrum dis- children have some type of developmental orders and other developmental disabilities. In disability, and two percent of school-aged chil- addition, CDC funds the Centers of Excellence dren have a serious developmental disability. for Autism and Developmental Disabilities Research and Epidemiology, which focus on CDC’s NCBDDD runs the Metropolitan monitoring and epidemiologic research in the Atlanta Developmental Disabilities Surveillance area of autism spectrum disorders and other Program, a model program for monitoring developmental disabilities. THE NATIONAL BIRTH DEFECTS PREVENTION NETWORK: KEEPING TRACK AND RAISING AWARENESS The National Birth Defects Prevention I Facilitate the communication and dissemina- Network (NBDPN) is a network of birth defect tion of information related to birth defects. surveillance systems and individuals working at I Collect, analyze, and disseminate state the local, state, and national level in birth defect and population-based birth defects surveillance, research, and prevention.3 The surveillance data. NBDPN seeks to establish and maintain popu- I Encourage the use of birth defects data for lation-based surveillance systems, assess the decisions regarding health services planning impact of birth defects upon children, families, (secondary disabilities prevention and services). and health care, identify primary prevention strategies, and assist families and their providers The NBDPN raises awareness and works to to prevent secondary disabilities. reduce adverse pregnancy outcomes. It has cre- ated an in-depth guideline for conducting birth The objectives of the NBDPN are to: defects surveillance and established an on-going I Improve the quality of birth defects surveil- system to monitor neural tube defects to assess lance data. the impact of folic acid education and fortifica- I Promote scientific collaboration for the tion. The NBDPN works closely with CDC and prevention of birth defects. NCBDDD, produces an annual report of state I Provide technical assistance for the develop- surveillance data, and develops materials for and ment of uniform methods of data collection. provides information to families. 6 MARCH OF DIMES: COMMITTED TO PREVENTING BIRTH DEFECTS AND INFANT MORTALITY The March of Dimes was founded in 1938 to According to the March of Dimes, of those combat polio and has since been a national babies born with birth defects: leader in research and treatment of birth I Three to four out of every 1,000 newborns defects of all kinds. In January 2003, the in the U.S. will experience hearing loss; organization launched a multi-year nationwide I Two to six out of every 1,000 U.S. children premature birth campaign which has direct have an autism spectrum disorder; implications for the many forms of birth I Two to three out of every 1,000 U.S. defects arising from incompletely developed children over age 3 have cerebral palsy organs, as well as for cerebral palsy, intellectu- (about 500,000 nationwide); al disabilities and mental retardation, learning and behavioral disorders, and hearing and I One in 800 to 1,000 U.S. babies born will vision impairments. The campaign aims to have Down syndrome; raise awareness of prematurity and to signifi- I One in 4,000 U.S. males and one in 8,000 cantly reduce the effects of preterm birth U.S. females will be born with Fragile X through research funding, education, advocacy syndrome. for health care access, and support to families with premature babies. VISUAL IMPAIRMENT AND HEARING LOSS Visual impairment exists when a person’s Hearing loss refers to the inability to hear eyesight cannot be corrected to a “normal” certain types of sounds or an inability to hear level. While the impairment can be the sounds below a certain volume in one or result of any number of conditions, chil- both ears. Hearing loss may be due to a dren’s vision problems are most often relat- structural birth defect in the inner or outer ed to structural birth defects (e.g., congeni- ear, auditory nerve, or in the brain. Hearing tal cataracts and congenital glaucoma), pre- loss also may be caused by prematurity, maturity, albinism, prenatal viral infection, infection, injury, certain drugs, and exposures lack of oxygen during birth, or excess fluid to loud noises. Ranging from mild to pro- on the brain. Visual impairment encompass- found and in one or both ears, hearing loss es loss of acuity, loss of visual field (in which can seriously impair a child’s verbal abilities, vision is limited without moving the eyes or particularly if it occurs before two years of turning the head), and complete loss of age when the abilities to speak and under- vision. In an intensive CDC study of five stand language are in critical stages of devel- counties in metropolitan Atlanta, Georgia, opment. In the same Atlanta study, the CDC researchers found that about nine children in found that about nine children in 10,000 had 10,000 between the ages of three and 10 experienced moderate to profound hearing experienced vision loss. In nearly two-thirds loss in both ears. In 30 percent of cases, of cases, children with visual impairment also children with hearing loss also had another have another developmental disability. The disability. Newborn screening for hearing average lifetime cost associated with visual loss is recommended by the CDC and is impairment for one person is $566,000.4 being widely performed in all states. The average lifetime cost associated with hearing loss for one person is $417,000.5 7 Autism Spectrum Disorders Autism spectrum disorders (ASD), also symptoms such as anxiety, depression, and known as pervasive developmental disorders, seizures. Special programs for pre-school and are a family of developmental disorders most school-aged children with ASDs are highly commonly associated with autism. These dis- resource intensive, presenting challenges for orders were first identified in the 1940s, but parents as well as for school systems facing diagnoses for ASDs have ballooned since the expanding caseloads. The provision of a free, early 1990s when a change in diagnostic cri- appropriate public education to school chil- teria took place. Experts disagree whether dren with an ASD, as mandated by the feder- the recent boom in ASD cases results from al Individuals with Disabilities Education Act the changing definitions or higher incidence of 1997 (IDEA) and amended in 2004, is a or greater awareness or a combination of fac- challenge for many school systems. tors, but some doctors and scientists believe With rates of ASD diagnosis increasing, and that cases are still underreported. The CDC patients, parents, and the medical communi- estimates the number of children affected by ty frustrated by a lack of understanding of an ASD to be somewhere between two and how and why ASDs occur, a great deal of pub- six in 1,000. Therefore, as many as 1.77 mil- lic and private attention has been focused on lion Americans may have an ASD.6 research into the disorders. In 1997, NIH There is no single test for ASDs. The disor- formed an Autism Coordinating Committee ders share a group of symptoms including (NIH/ACC) to enhance the quality, pace, difficulty with verbal communication, unre- and coordination of efforts at NIH to find a sponsiveness to social cues such as eye con- cure for autism. Headed by the National tact and body language, and a tendency Institute of Mental Health, the committee toward unusual and repetitive behaviors. also includes NICHD, the National Institute People with an ASD generally exhibit some on Deafness and Communication Disorders combination of these symptoms, but a lack (NIDCD), NINDS, and the National Institute of definitive biological markers for these dis- of Environmental Health Sciences (NIEHS). orders contributes to challenges in catego- The NIH/ACC sponsors national and inter- rizing and diagnosing ASDs. Other medical national centers of excellence for autism problems often accompany ASDs; one in research and funded research grants totaling four children with an ASD develops seizures, nearly $74 million in 2002. Advocates are call- and other associated problems include men- ing on Congress to authorize $176 million tal retardation, and/or sensory disorders, a annually over the next five years to combat lack of response to pain stimulus, hypersen- autism through research, screening, inter- sitivity, or both. Many children with an ASD vention, and education. have gastrointestinal problems as well.7 In addition to the NIH/ACC, the federal gov- The most common forms of ASD are autism, ernment in 2001 established the Interagency Asperger’s syndrome, and Pervasive Develop- Autism Coordinating Committee (IACC) to ment Disorder -- Not Otherwise Specified coordinate efforts across federal agencies. (PDD-NOS). These disorders normally Participants include NIH, the Food and Drug appear during the toddler years, but before a Administration, the Administration on child reaches school age. No cure for any Children and Families, the Agency for ASD currently exists, despite increasing Healthcare Research and Quality, the research. The most effective treatment cur- Centers for Medicare and Medicaid Services, rently available is intensive early intervention, the CDC, the Department of Education, and ideally beginning at age two or three, focus- HRSA. The IACC includes representation ing on communication and behavioral issues. from some major advocacy groups as well as Medications also may be used to address public members. 8 Numerous non-profit organizations also ASDs, the need for intensive intervention address the needs of people with autism and services and inadequate resources, CDC has other ASDs. Some focus on research, while emphasized that ASDs are conditions that others focus on services for patients and represent an urgent public health concern. families. Given the increased diagnoses of CHILDHOOD VACCINES Patients, parents, doctors, and scientists in the latest research and developmentson pos- the ASD community have been frustrated by sible causes of autism. According to the the lack of understanding of how and why CDC, “The weight of currently available sci- these disorders develop. Many have sought entific evidence does not support the hypoth- clues in environmental factors, and extensive esis that vaccines cause autism. We recognize discussion and research have taken place there is considerable public interest in this regarding a possible link between ASDs and issue, and therefore support additional childhood vaccinations. A number of major research regarding this hypothesis. CDC is research studies conducted in the U.S. and committed to maintaining the safest, most abroad have found no proof of an association effective vaccine supply in history.”8 between ASDs and vaccines. However, In May 2004, a committee from the Institutes because of the timing of childhood immuniza- of Medicine found no “causal relationship” tions and the development of signs of ASDs, between thimerosal-containing vaccines, or some parents believe there is a link. This, in the Measles, Mumps, and Rubella (MMR) vac- turn, has discouraged some parents from fol- cine, and autism.9 However, parents, some lowing recommended vaccination regimens scientists and advocacy organizations disagree for their children. Unfortunately, these con- and believe more research is needed. They cerns have contributed to outbreaks of vac- urge ongoing public sector and private cine-preventable infectious diseases, such as research into the possible causes of autism, measles and pertussis among children. including viral infections, metabolic imbal- The CDC maintains a Web site to inform the ances, exposures to heavy metals (e.g., mer- public health community and the public about cury and lead), pesticides, and genetic factors. 9 Cerebral Palsy seizures. Cerebral palsy is not currently cur- able; however, combinations of drug treat- ments, surgeries, medical assistance devices like specialized braces, and physical and occupational therapies can improve the qual- ity of life for many people with this disorder. Research has identified ways to prevent some causes of cerebral palsy, such as jaun- dice, Rh disease, and rubella. Infants born preterm are up to 30 times more likely to develop cerebral palsy. Research continues into ways to prevent preterm birth and other triggers for cerebral palsy. The origin of many cases remains unknown. The American College of Obstetricians and Gynecologists (ACOG) published an expert task force report in 2002, “Neonatal Encephalopathy and Subsequent Cerebral Palsy: Defining the pathogenesis and patho- physiology,” emphasizing the importance of potential preventable prenatal factors such as maternal infection and thyroid disorder.10 The federal government conducts research into cerebral palsy causes and cures through various channels. At NIH, NINDS is the pri- Cerebral palsy is an umbrella term for a mary research organization dealing with the series of chronic disorders in which motor disorders. NINDS conducts research in areas control is impaired by damage to certain including pre-natal cell development, neona- parts of the brain. This brain damage can tal stroke, and low birth-weight. The CDC be caused by abnormal growth, birth trau- tracks rates of cerebral palsy through the ma, or head injuries, and can occur before Metropolitan Atlanta Developmental or after birth. In the most common forms Disabilities Surveillance Program, funds of cerebral palsy the body’s muscle tone is research through the North Atlantic Neuro- either too tight or too loose; a less common Epidemiology Alliance and has intensively variant impairs balance and coordination. studied the development of cerebral palsy dur- Usually appearing by age two or three, cere- ing childhood. CDC also is working to under- bral palsy does not progress over time. stand the impact of untreated jaundice, lead- Symptoms vary by patient and can include an ing to a severe disability known as kernicterus, inability to maintain posture or walk, invol- which is associated with severe cerebral palsy. untary muscle movements, balance prob- The March of Dimes funds research on pre- lems, and impairments in the fine motor con- natal brain development with implications for trol required for tasks like writing. Some cerebral palsy and has launched a major edu- people with cerebral palsy also have other dis- cation and research campaign on prematurity. orders including mental retardation and 10 Intellectual Disabilities Intellectual disabilities, often referred to as effective in preventing intellectual disability mental retardation, are characterized by sig- from known causes such as phenylketonuria nificantly below-average intellectual func- (PKU), a condition in which the body can- tioning (generally regarded as an IQ below not process a protein found in many foods, 70), combined with impairment in carrying and that can be treated through specialized out functions of daily life such as caring for diets. Some intellectual disabilities can be oneself, communicating, and interacting prevented. Preventive actions include: socially. Appearing at any time before birth I Iodization of salt to prevent iodine-defi- or during childhood (up to 18 years of age), ciency hypothyroidism, which can result intellectual disabilities can be caused by sin- in intellectual disability; gle causes or combinations of genetics, abnormal brain development, injury, infec- I Abstinence from alcohol by women of child- tion or disease. They are the most common bearing age to avoid fetal alcohol syndrome; developmental disorder, affecting roughly I Dietary control to prevent intellectual dis- three in 100 people. Intellectual disabilities abilities in people with phenylketonuria; can range from mild to profound, and mild- and moderately-impaired people can often I Environmental control to prevent intel- learn to live independently. When other lectual disabilities due to poisoning from disorders co-occur with intellectual disabili- heavy metals such as lead; ties, individuals are likely to experience I Prevention of Kernicterus, a kind of brain more profound degrees of disability.11 damage that happens when a newborn has The cause of most intellectual disability is too much jaundice, by using special lights unknown. Some common cases are linked (phototherapy) or other therapies; and13 to genetics such as Down syndrome (the sin- I Consistent use of infant and child safety gle most common chromosomal-related precautions at home and restraints in birth defect, in which a person has a partial automobiles. or complete extra copy of chromosome 21) and Fragile X syndrome (an inherited con- A great deal of research on birth defects, dition impacting the X chromosome and genetic diseases, and other medical disor- hence, more commonly affecting males). ders has implications for preventing intel- Other less common causes include genetic lectual disabilities, but much more research conditions (such as cri-du-chat syndrome or targeted specifically to early recognition and Prader-Willi syndrome), infections (such as treatment of intellectual abilities is needed. congenital cytomegalovirus), or birth The majority of federal programs and non- defects that affect the brain (such as hydro- profit organizations that address intellectual cephalus or cortical atrophy). Other causes disabilities do so from a treatment perspec- of intellectual disabilities (such as asphyxia) tive, and information and debate about spe- happen before, during, or soon after a baby cialized care, educational strategies, health is born. Still other causes may not happen care and financing, and assistance for affect- until a child is older. These may include ed adults abound. serious head injury, stroke, or certain infec- Depending on the severity of the intellectual tions such as meningitis.12 Environmental disability, medical interventions and/or “sup- factors like prenatal alcohol exposure ports” are provided to the individual. The (resulting in fetal alcohol syndrome, the American Association on Mental Retardation most common preventable birth defect), defines “supports” as the resources and indi- malnutrition, or exposure to toxins such as vidual strategies necessary to promote the lead or mercury can also cause intellectual development, education, interests, and per- disabilities. Newborn screening can be sonal well-being of a person with mental 11 retardation. Supports can be provided by a with the support of family members or others. parent, friend, teacher, psychologist, doctor, This option can allow for a more fulfilling life or by any appropriate person or agency.14 than many other disabilities permit, but also Providing individualized supports can makes tracking systems that contribute to pre- improve personal functioning, promote self- vention research harder to implement. Some determination and societal inclusion, and community groups also report difficulty in improve the well-being of a person with intel- accessing high-quality, continuous health care, lectual disabilities. Focusing on supports is a in part because intellectual disabilities have a way to improve education, employment, lower urgency than other disabilities with recreation, and overall living environments.15 which it might share support services. Additionally, pursuant to federal law, Additionally, people with intellectual disabili- American children with intellectual disabili- ties are often dependent on sub-market pay- ties are entitled to a free and appropriate ment rates like Medicaid. Further, few clini- education, including physical education, cians feel competent in their treatment of which may include special services. intellectually disabled patients, leading many to decide against serving that population. Many individuals with intellectual disabilities live independently or semi-independently WHY TERMINOLOGY MATTERS In response to perceived negative stereo- policy, including death penalty prosecutions types, the term mental retardation is often and Social Security administrative processes. replaced today with the term intellectual Self-advocates and those advocating on behalf disabilities. In some cases the word “men- of individuals with disabilities also provide tal” was confused with the term “mental ill- these additional language guidelines: ness” and the word “retardation” is often associated with offensive terms such as L Use “people-first language.” Refer to “retard” or “retarded.”16 For example, the individuals, persons or people with intel- Arc of the United States describes its work lectual or developmental disabilities, as providing services for “children and adults rather than “intellectually disabled peo- with cognitive, intellectual and developmen- ple” or “the developmentally disabled.” tal disabilities in every community.”17 In L People have intellectual or developmen- other parts of the world the terminology tal disabilities, rather than are “suffering used may be intellectual disability, learning from,” “afflicted with,” or “a victim of” difficulty, or mental handicap. intellectual disabilities. Yet, notwithstanding the negative connota- L A person “uses” a wheelchair, rather than is tion associated with the term “mental retar- “confined” or “restricted to” a wheelchair. dation,” it does have certain legal and med- L “Down syndrome” has replaced ical meanings, especially in the U.S. For “Down’s Syndrome” and “mongoloid.” example, within the purview of the law, the L A person is physically challenged or term “mental retardation” offers special pro- disabled rather than crippled. tections in key areas of federal and state 12 SPECIAL OLYMPICS HEALTHY ATHLETES: A NEW MODEL FOR THE DELIVERY OF HEALTH AND WELLNESS SERVICES FOR PEOPLE WITH INTELLECTUAL DISABILITIES People with intellectual and variety of health screenings developmental disabilities and services, including have a markedly higher risk vision, dental, hearing, podi- than the general public of atric, and bone density preventable secondary screenings, surveys of exer- health conditions. These cise habits and aerobic fit- include obesity, nutritional ness, and dissemination of deficits, poor fitness, and information about health untreated or poorly treated promotion and disease pre- vision, dental, hearing or vention. Additionally, podiatric problems. For Healthy Athletes has trained example, hearing loss is tens-of-thousands of health several hundred percent care professionals and stu- higher for people with dents worldwide in an Photos courtesy of Special Olympics intellectual disabilities when effort to educate them compared to other people about the health needs and their age. abilities of people with intel- lectual and developmental These disparities in care disabilities. Data obtained result from lack of access during Healthy Athletes and ability to pay for servic- screening events have es, practitioners who are informed a wide variety of not adequately trained to health science and policy care for this population, and publications, scientific con- poorly developed and sup- ferences and government ported behaviors to pro- advisory and legislative mote health. committees (www.spe- Special Olympics is a world- cialolympics.org). wide leader in the field of With the support of the athletics for people with CDC, the Special Olympics Healthy Athletes intellectual disabilities, providing high quality program conducted more than 425 screening sports training and competition opportunities, events in 2004 in all U.S. states and another offering more than 1.7 million athletes from 54 nations around the world. 150 nations the opportunity to participate in 26 Olympic-type summer and winter sports. Special Olympics programs also promote social competence and self-esteem, accept- ance, and improved health outcomes. Recently, Special Olympics has been develop- ing its Healthy Athletes program to address health disparities of its athletes. Through Healthy Athletes, Special Olympics athletes with intellectual disabilities receive a 13 Birth Defects Surveillance Data from Selected States 1997-2001* Total Total Percent of Live Birth Live Births Resulting Defects Births in a Birth Defect Alabama 983 42,267 2.33% Alaska 2,745 49,835 5.51% Arizona 1,753 75,563 2.32% Arkansas 5,843 184,731 3.16% California 3,491 283,066 1.23% Colorado 12,215 310,632 3.93% Delaware 1,554 42,533 3.65% Florida 31,224 787,769 3.96% Georgia 7,055 235,616 2.99% Hawaii 2,936 86,743 3.38% Illinois 15,336 914,204 1.68% Iowa 6,820 187,312 3.64% Kentucky 8,716 220,151 3.96% Maryland 2,412 339,205 0.71% Massachusetts 3,448 243,462 1.42% Michigan 19,925 670,459 2.97% Mississippi 1,753 86,352 2.03% Missouri 12,516 300,876 4.16% Montana 403 21,893 1.84% New Jersey 21,508 571,846 3.76% New Mexico 2,348 108,476 2.16% New York 31,505 1,281,686 2.46% North Carolina 16,642 452,582 3.68% North Dakota 916 39,263 2.33% Oklahoma 7,570 246,168 3.08% Puerto Rico 521 299,859 0.17% Rhode Island 1,835 59,422 3.09% South Carolina 261 272,592 0.10% Tennessee 4,915 157,857 3.11% Texas 50,292 1,556,101 3.23% Utah 4,002 229,626 1.74% Virginia 7,991 375,277 2.13% West Virginia 2,281 103,485 2.20% Wisconsin 6,626 340,351 1.95% SOURCE: Birth Defects Surveillance Data from Selected States, 1997-2001. Birth Defects Research (Part A) 70:677-771 (2004)18 *States were requested to report data from January 1, 1997 to December 31, 2001. However, time frames for reported data do vary. In most cases data refer to a full year, or some combination of years in the desig- nated time period. Accordingly, some states may have under-reported the numbers of birth defects due to shortened reporting time periods. For any given year, a child may be counted twice, or more, depending on the number of birth defects. These numbers, therefore, are not absolute totals for the four year time period or absolute comparisons between the states. They should be used contextually and as an estimate of how prevalent birth defects are in the United States overall. 14 Learning Disabilities A learning disability (LD) is distinct from an discipline problems during a student’s aca- intellectual disability in that an individual demic or vocational career. with learning disabilities has normal or above- Early intervention is crucial to effectively man- average intelligence, but has unexpected dif- aging a learning disability, but identification ficulty acquiring and mastering new skills or and classification are often not carried out in information in particular areas. Presumed to a timely way. Moreover, learning disabilities be neurobiological in nature, and therefore might not become evident until a child is in lifelong, learning disabilities include difficul- school, delaying opportunities for early inter- ties with reading, writing, listening, speaking, vention. A learning disability label can stigma- reasoning, and/or doing math. Dyslexia (a tize students among their peers and lead to language-based disorder that affects reading) tracking within the school system, so teachers is the best understood of the specific learning sometimes hesitate to label a student if the disabilities. Physical impairments such as problem is not severe. Wide disparities in who problems with vision and hearing may pres- is tested and how they are tested can lead to ent challenges to learning, but are not con- differing outcomes and access to services. sidered learning disabilities. Learning dis- abilities are often inherited, though little is Research into learning disabilities falls into known about their direct causes. As many as two major categories: (1) studies of prevalence one in seven people is thought to be affected and disease burden, including how and why by some form of learning disability.19 learning disabilities occur, and (2) studies that focus on effective means of teaching or inter- Since learning disabilities impair a child’s vening with children and adults who have ability to acquire new skills, they are often learning disabilities. Prevalence and risk fac- first detected at the onset of formal educa- tor studies are conducted by the CDC through tion. Special assistance can help a child to the National Center on Birth Defects and cope with or overcome the limitations and Developmental Disabilities. Studies about challenges posed by a disability, while failure how and why learning disabilities occur are to address the condition can lead a child to primarily undertaken by the NIH through fall behind a grade level. Additionally, unad- NICHD, the National Institute of Deafness dressed learning disabilities sometimes can and Other Communication Disorders, and result in social/emotional and behavioral NIMH, while studies that focus on effective problems, such as low motivation, learned means of teaching or intervening with chil- helplessness, diminished self-esteem, or dis- dren and adults are conducted through the ruptive behavior both at home and at school. U.S. Department of Education Office of Failure to properly recognize and treat learn- Special Education Programs, and most recent- ing disabilities can contribute to chronic ly, the Institute for Education Sciences (IES). underachievement as well as behavior and 15 ATTENTION DEFICIT-HYPERACTIVITY DISORDER (ADHD): MORE QUESTIONS THAN ANSWERS Attention Deficit-Hyperactivity Disorder environmental factors, such as lead and mer- (ADHD) is a neurobehavioral disorder esti- cury exposures, have been implicated. mated to affect between three and five per- High prevalence rates and the lack of knowl- cent of all children.20 A lifelong condition, its edge surrounding ADHD argue for high pri- characteristics can include difficulty staying ority public and private research into the dis- on task, following instructions, and paying order. Improved data collection also is attention to detail. ADHD can be disruptive required, as is analysis of systemic implemen- in multiple settings in a person’s life. Among tation of research-based and promising prac- children, ADHD can cause serious social tices to capture the full range of genetic, envi- consequences such as school failure, delin- ronmental, behavioral, and lifestyle factors to quency, increased risk for injury, and poor improve outcomes for these individuals. peer relations. Among adults, ADHD is less well-understood but has been related to fre- Learning disabilities and ADHD may co- quent job loss/changes and difficulty in family occur and are often confused as they share functioning. There are three subtypes of many of the same manifestation and behav- ADHD, characterized by inattentiveness or ioral characteristics, such as inattentiveness, hyperactivity and impulsiveness, and some poor task vigilance, and underachievement. people display elements of each. In fact, based on major surveys, CDC esti- mates that nearly half of those with ADHD The most common treatments for ADHD in also have a learning disability.21 children are psychostimulant medications that increase attention and decrease hyperactivity, CDC/NCBDDD sponsors the National structured classroom management, as well as Resource Center on ADHD to provide educational and behavioral therapies at home accurate and valid information to the public, and at school. Some people learn to manage parents, affected adults, educators and the condition effectively and thereby mini- health care providers. The center operates a mize the challenges posed by their disability toll-free hotline, a comprehensive Web site, as adults. It is not known what causes and physical and virtual library holdings on ADHD. However, it is highly heritable and ADHD diagnosis and treatment. 16 Number and Percentage of Children Ages 3 to 21 Served Under IDEA by State and Service Category As of 12/31/03 Hearing Mental Specific Learning Visual Autism Impairments Retardation Disabilities Impairments All Disabilities Percent Percent Percent Percent Percent Percent Ages of State Ages of State Ages of State Ages of State Ages of State Ages of State 3-21 3-21 pop 3-21 3-21 pop 3-21 3-21 pop 3-21 3-21 pop 3-21 3-21 pop 3-21 3-21 pop Alabama 1,479 0.12% 1,037 0.09% 12,652 1.05% 40,581 3.36% 476 0.04% 93,056 7.70% Alaska 311 0.16% 158 0.08% 781 0.40% 8,368 4.27% 44 0.02% 17,959 9.16% Arizona 2,288 0.16% 1,783 0.12% 8,383 0.58% 56,473 3.93% 635 0.04% 112,125 7.81% Arkansas 1,114 0.15% 656 0.09% 11,641 1.60% 22,565 3.10% 243 0.03% 66,793 9.17% California 24,863 0.26% 10,959 0.11% 42,991 0.44% 337,800 3.47% 4,261 0.04% 675,763 6.94% Colorado 978 0.08% 1,442 0.12% 3,588 0.31% 32,232 2.76% 348 0.03% 82,447 7.06% Connecticut 2,357 0.27% 864 0.10% 3,391 0.39% 27,035 3.09% 339 0.04% 73,952 8.46% Delaware 475 0.23% 291 0.14% 2,363 1.13% 9,592 4.57% 52 0.02% 18,417 8.77% D.C. 215 0.16% 124 0.09% 1,575 1.14% 6,253 4.54% 31 0.02% 13,242 9.60% Florida 7,151 0.18% 3,881 0.10% 40,278 1.04% 180,278 4.66% 1,309 0.03% 397,758 10.28% Georgia 4,383 0.19% 1,754 0.08% 29,003 1.26% 52,374 2.28% 628 0.03% 190,948 8.30% Hawaii 770 0.24% 437 0.14% 2,004 0.64% 10,158 3.23% 72 0.02% 23,266 7.39% Idaho 635 0.16% 303 0.08% 1,760 0.45% 12,849 3.26% 110 0.03% 29,092 7.37% Illinois 6,961 0.20% 3,943 0.11% 28,292 0.82% 142,164 4.14% 1,166 0.03% 318,111 9.27% Indiana 5,434 0.32% 2,143 0.13% 23,069 1.36% 63,314 3.74% 909 0.05% 171,896 10.14% Iowa 1,331 0.17% 904 0.11% 12,632 1.57% 40,192 4.99% 182 0.02% 73,717 9.15% Kansas 1,130 0.15% 615 0.08% 5,005 0.65% 24,172 3.15% 216 0.03% 65,139 8.50% Kentucky 1,586 0.15% 687 0.06% 17,882 1.67% 17,957 1.67% 463 0.04% 103,783 9.68% Louisiana 1,924 0.15% 1,403 0.11% 11,306 0.86% 35,190 2.67% 467 0.04% 101,933 7.75% Maine 1,018 0.31% 286 0.09% 949 0.29% 12,688 3.91% 92 0.03% 37,784 11.66% Maryland 4,084 0.29% 1,383 0.10% 6,822 0.48% 40,684 2.88% 574 0.04% 113,865 8.06% Massachusetts 5,087 0.32% 1,217 0.08% 12,517 0.78% 71,868 4.47% 504 0.03% 159,042 9.90% Michigan 7,259 0.26% 3,289 0.12% 25,938 0.94% 97,468 3.53% 929 0.03% 238,292 8.63% Minnesota 5,838 0.42% 2,171 0.16% 9,718 0.71% 36,858 2.68% 368 0.03% 114,193 8.30% Mississippi 680 0.08% 662 0.08% 4,959 0.59% 30,087 3.57% 300 0.04% 66,848 7.94% Missouri 2,863 0.19% 1,334 0.09% 12,242 0.80% 59,848 3.91% 514 0.03% 143,593 9.38% Montana 270 0.11% 198 0.08% 1,135 0.45% 9,409 3.76% 72 0.03% 19,435 7.78% Nebraska 649 0.13% 674 0.14% 5,566 1.15% 15,363 3.17% 231 0.05% 44,561 9.19% Nevada 1,164 0.22% 539 0.10% 2,031 0.39% 24,704 4.70% 175 0.03% 45,201 8.61% New Hampshire 667 0.20% 291 0.09% 982 0.30% 13,391 4.04% 143 0.04% 31,311 9.45% New Jersey 5,503 0.26% 1,703 0.08% 6,451 0.30% 108,997 5.09% 406 0.02% 241,272 11.26% New Mexico 413 0.08% 553 0.10% 1,734 0.32% 25,726 4.78% 196 0.04% 51,814 9.63% New York 9,486 0.19% 5,275 0.11% 14,721 0.30% 182,995 3.67% 1,792 0.04% 442,665 8.87% North Carolina 4,687 0.22% 2,277 0.11% 27,781 1.32% 69,660 3.31% 701 0.03% 193,956 9.20% North Dakota 240 0.13% 147 0.08% 1,142 0.63% 5,043 2.76% 56 0.03% 14,044 7.69% Ohio 5,490 0.18% 2,867 0.09% 55,818 1.81% 94,309 3.06% 1,184 0.04% 253,878 8.25% Oklahoma 991 0.10% 868 0.09% 7,233 0.75% 46,669 4.84% 407 0.04% 93,045 9.65% Oregon 4,389 0.49% 914 0.10% 4,412 0.49% 31,711 3.50% 344 0.04% 76,083 8.41% Pennsylvania 7,178 0.23% 3,002 0.09% 27,173 0.86% 139,083 4.39% 1,311 0.04% 273,259 8.62% Rhode Island 655 0.24% 233 0.08% 1,264 0.45% 14,293 5.14% 76 0.03% 32,223 11.58% South Carolina 1,523 0.14% 1,240 0.11% 14,913 1.36% 47,151 4.30% 418 0.04% 111,077 10.13% South Dakota 391 0.18% 163 0.07% 1,299 0.59% 7,284 3.31% 39 0.02% 17,760 8.06% Tennessee 1,958 0.13% 1,449 0.10% 13,623 0.91% 49,907 3.33% 756 0.05% 122,627 8.19% Texas 11,940 0.19% 6,407 0.10% 27,544 0.44% 252,265 4.07% 2,980 0.05% 506,771 8.18% Utah 1,179 0.15% 652 0.08% 3,155 0.41% 28,531 3.70% 310 0.04% 57,745 7.49% Vermont 315 0.19% 130 0.08% 1,237 0.75% 4,353 2.65% 33 0.02% 13,670 8.34% Virginia 3,951 0.21% 1,532 0.08% 14,084 0.76% 70,181 3.77% 506 0.03% 172,788 9.29% Washington 3,112 0.19% 1,390 0.09% 5,743 0.36% 49,272 3.06% 315 0.02% 123,673 7.69% West Virginia 534 0.12% 468 0.10% 9,131 2.05% 17,911 4.01% 276 0.06% 50,772 11.38% Wisconsin 3,669 0.25% 1,649 0.11% 12,336 0.83% 48,843 3.29% 459 0.03% 127,828 8.61% Wyoming 182 0.13% 166 0.12% 615 0.43% 5,118 3.62% 63 0.04% 13,430 9.50% 50 States & D.C. 162,750 0.21% 78,513 0.10% 592,864 0.77% 2,831,217 3.68% 28,481 0.04% 6,633,902 8.62% SOURCE: Source: U.S. Department of Education, Office of Special Education Programs, Data Analysis System Percentages calculated based on 2000 Census State Population Data. 17 Number and Percentage of Infants and Toddlers (Under Age 3) Receiving Early Intervention Services Under IDEA As of 12/1/03 0 to <12 12 to <24 24 to <36 Total % of Population Months Months Months 0 to <36 Receiving Months Services Alabama 216 730 1,207 2,153 1.20 Alaska 90 219 332 641 2.17 Arizona 491 1,266 1,968 3,725 1.39 Arkansas 260 846 1,666 2,772 2.46 California 5,562 9,275 12,659 27,496 1.76 Colorado 444 1,034 1,670 3,148 1.56 Connecticut 419 1,088 2,194 3,701 2.96 Delaware 192 315 448 955 2.90 D.C. 24 75 152 251 1.13 Florida 2,219 4,525 7,975 14,719 2.28 Georgia 690 1,571 2,579 4,840 1.19 Hawaii 1,386 1,395 1,397 4,178 7.70 Idaho 272 457 761 1,490 2.44 Illinois 1,675 4,055 7,410 13,140 2.42 Indiana 1,585 3,002 4,683 9,270 3.62 Iowa 323 684 1,129 2,136 1.95 Kansas 413 805 1,531 2,749 2.40 Kentucky 320 1,214 2,352 3,886 2.37 Louisiana 460 1,088 1,950 3,498 1.75 Maine 98 304 703 1,105 2.77 Maryland 763 1,851 3,160 5,774 2.60 Massachusetts 2,391 4,569 7,447 14,407 5.92 Michigan 1,320 2,631 4,259 8,210 2.13 Minnesota 472 1,027 2,003 3,502 1.78 Mississippi 1,062 631 282 1,975 1.53 Missouri 465 1,067 1,891 3,423 1.51 Montana 131 219 278 628 1.95 Nebraska 176 374 710 1,260 1.70 Nevada 113 346 471 930 0.94 New Hampshire 155 329 662 1,146 2.61 New Jersey 688 2,382 5,021 8,091 2.36 New Mexico 455 804 1,068 2,327 2.89 New York 2,640 9,500 20,886 33,026 4.42 North Carolina 735 1,938 3,284 5,957 1.66 North Dakota 86 166 224 476 2.13 Ohio 1,233 2,641 4,230 8,104 1.81 Oklahoma 652 1,222 1,474 3,348 2.24 Oregon 184 591 1,063 1,838 1.38 Pennsylvania 2,009 4,000 6,420 12,429 2.94 Rhode Island 227 372 683 1,282 3.48 South Carolina 284 570 885 1,739 1.04 South Dakota 70 270 490 830 2.66 Tennessee 552 1,386 2,277 4,215 1.81 Texas 2,654 6,436 11,145 20,235 1.81 Utah 341 734 1,307 2,382 1.69 Vermont 64 171 387 622 3.42 Virginia 579 1,561 2,064 4,204 1.40 Washington 349 1,133 2,145 3,627 1.56 West Virginia 325 581 761 1,667 2.73 Wisconsin 607 1,554 3,256 5,417 2.66 Wyoming 100 214 358 672 3.57 50 States and D.C. 39,021 85,218 145,357 269,596 2.24 SOURCE: U.S. Department of Education, Office of Special Education Programs, Data Analysis System Population Estimates from U.S. Census Bureau 18 Successes and Challenges Coordinated Campaigns: A Model for Prevention In 1992, the Department of Health and lance systems, prevention programs, and Human Services, through the U.S. Public epidemiological investigations. Health Service, issued a recommendation Such coordinated campaigns are working. that all women of child-bearing age consume According to a 2004 Gallup Survey conducted at least 400 micrograms of folic acid daily. for the March of Dimes, 24 percent of women This recommendation was based on research of childbearing age knew that folic acid pre- showing that adequate consumption of folic vents birth defects, up from four percent in acid before and during the first several weeks 1995.24 Awareness of how and when to con- of pregnancy had the potential to reduce the sume folic acid is increasing too, although a incidence of spina bifida and anencephaly — greater level of folic acid consumption will be birth defects in which the brain and spinal required to realize the vitamin’s full preven- column are improperly formed, resulting in tion potential. Initial data has allowed part- serious impairment or death — by as much ners to fine-tune strategies for reaching high- as 70 percent. At that time, neural tube risk populations, and new alliances are being defects were estimated to affect an estimated formed based on feedback to date. One 4,000 pregnancies annually, with annual emerging challenge is the need to address dis- medical costs associated with spina bifida parities, such as higher rates of spina bifida alone exceeding $200 million.22 and other neural tube defects among babies In 1998, the National Council on Folic Acid born to Hispanic women. In addition, there was formed as a partnership of more than is a need to advance the understanding of 80 national organizations, federal agencies, how to promote the health and well-being of and state councils. In 1996, the FDA issued children and adults living with spina bifida a requirement that all foods containing neural tube conditions. enriched flour be fortified with folic acid by This campaign demonstrates that diverse January 1998. This public health interven- groups -- national organizations, disease-spe- tion was an important step to increase folic cific associations, federal agencies, medical acid intake among women of childbearing associations, local governments, state coun- age. The success of this effort has been doc- cils, and even unexpected partners like umented by the 31 percent decline in spina minority sorority councils -- can work bifida and 16 percent decline in anen- together effectively when marshaled around cephaly in the U.S. following folic acid forti- a clear, specific health message. This suc- fication.23 In 1999, the National Folic Acid cess calls for coordinated, collaborative Campaign was launched by CDC, the March action by the public health and medical of Dimes, and the National Council on Folic communities on other issues where concert- Acid. Today, CDC supports states and locali- ed action can yield positive results. ties in developing and managing surveil- 19 Newborn Screening: Facilitating Early Detection and Treatment For 40 years, state-based screening of newborn In March, 2005, HRSA released a report by babies has been carried out to identify serious the American College of Medical Genetics disorders that may not otherwise be detected entitled Newborn Screening: Toward a Uniform before disability or death occurred. Newborn Screening Panel and System.26 The report estab- screening is typically carried out by taking a lishes criteria to evaluate conditions for sample of blood from a newborn within 48 potential inclusion in a national screening hours of birth, before the mother leaves the panel, and recommends screening for 29 hospital, and analyzing it for as many as 44 dif- core conditions for which effective tests and ferent disorders. Every year some four million treatment regimens exist, as well as 25 sec- babies, virtually all of the nation’s newborns, ondary conditions that can be identified in are tested through such state-based programs; the course of testing for the core group. The about 3,000 are diagnosed with a severe disor- report also addresses guidelines for national der.25 These screening programs have histori- oversight of such screening and highlights cally been highly effective in identifying med- additional benefits that could occur by pro- ical problems and facilitating immediate, viding guidance to states following positive appropriate treatment, allowing many of these test results, particularly for rare conditions children to develop normally or with minimal with which states may have limited experi- health problems. Newborn screening is ence. Both the March of Dimes and the important because it leads to the detection of American Academy of Pediatrics have for- conditions, which in turn is critical to improv- mally endorsed this report. ing the outcomes of affected children, espe- The HRSA report was not issued in a vacuum; cially in preventing intellectual disabilities and many agencies and organizations support the death. development of national newborn screening In 1999, the American Academy of Pediatrics standards, and the existing screening pro- (AAP) recommended that the federal gov- grams in every state attest to the public and ernment conduct a multi-stakeholder process individual health benefits ascribed to such to develop nationally recognized newborn programs. Furthermore, the information screening standards and policies. While and cost benefits of centralizing the process responsibility for screening rests with the indi- will allow individual states to significantly vidual states, a set of national standards could enhance the quality of screening provided to provide recommended minimum guidelines newborns while minimizing the cost entailed. on how and what to test for, as well as assist in To the extent that screening data can be col- standardizing reporting procedures to enable lectively analyzed, researchers may also bene- nationwide data comparisons. Based on the fit from this initiative with more accurate, uni- importance of newborn screening for infant form, and extensive data sets on which to health, in 2000, the March of Dimes issued a draw. Extended national screening thus con- set of nine core disorders for which every stitutes a winning proposition for all. newborn should be screened. 20 THE 29 CONDITIONS RECOMMENDED FOR NEWBORN SCREENING I 3-Methylcrotonyl-CoA carboxylase I Isovaleric academia (IVA) deficiency (3MCC) I Long-chain L-3-OH acyl-CoA dehydroge- I 3-OH 3-CH3 glutaric aciduria (HMG) nase deficiency (LCHAD) I Argininosuccinic acidemia (ASA) I Maple syrup urine disease (MSUD) I Beta-ketothiolase deficiency (BKT) I Medium chain acyl-CoA dehydrogenase I Biotinidase deficiency (BIOT) deficiency (MCAD) I Carnitine uptake defect (CUD) I Methylmalonic acidemia (Cbl A,B) I Citrullinemia (CIT) I Methylmalonic acidemia (mutase deficien- cy) (MUT) I Congenital adrenal hyperplasia (CAH) I Multiple carboxylase deficiency (MCD) I Congenital hypothyroidism (HYPOTH) I Phenylketonuria (PKU) I Cystic fibrosis (CF) I Propionic acidemia (PROP) I Galactosemia (GALT) I Sickle cell anemia (SCA) I Glutaric acidemia type I (GA I) I Trifunctional protein deficiency (TFP) I Hb S/Beta-thalassemia (Hb S/Th) I Tyrosinemia type I (TYR I) I Hb S/C disease (Hb S/C) I Very long-chain acyl-CoA dehydrogenase I Hearing deficiency deficiency (VLCAD) I Homocystinuria (HCY) CHALLENGES AHEAD Early Childhood Developmental Screening: Diagnosis Begins with the Primary Health Care Provider Awareness of conditions that entail develop- dren with developmental delays is impor- mental delays like ASD and intellectual dis- tant in the primary care setting.”28 abilities, as well as the risk for neurobiologi- According to the CDC, “As many as 85 to 90 cal disorders, such as learning disabilities and percent of children identified as having ADHD, has increased in part due to changes autism who participate in systematic inter- in how the health, medical, and educational vention before they are five years of age gain communities address these problems. Most the ability to talk, which helps them reach experts agree that early identification of their full potential.”29 CDC recently devel- developmental disabilities is important to oped a program called “Learn the Signs. Act managing them. Of the 17 percent of chil- Early,” to increase parent and professional dren with a developmental or behavioral dis- recognition of early developmental mile- ability in the U.S., less than 50 percent are stones and warning signs that may signal the recognized as having a problem before start- need for further evaluation and possible ing school. By this time, delays in language early intervention. development have already occurred, and the In 2002, the HRSA Maternal and Child affected children have missed out on poten- Health Bureau teamed up with the AAP and tial early intervention opportunities.27 other private and public entities, including The AAP, in recognition of this problem, HMOs and universities, to administer the has stated that “early identification of chil- Bright Futures initiative. This effort aims to, 21 among other things, promote developmen- around the country. Furthermore, many of tal screening in young children by develop- the underlying causes for developmental ing and disseminating materials, fostering disabilities are unknown, and quality data partnerships, and encouraging family par- on distribution, area of concentration, age ticipation in promoting health. Most of onset, environmental exposures, and experts agree that pediatricians are the pro- behavioral and lifestyle factors, are crucial fessionals best suited to perform this screen- to finding causes and cures for these condi- ing, based on their repeated contact with tions. As learning disabilities, autism, and children below school age at childhood well- other forms of developmental delay ness doctor visits. However, resource limita- demand an increasing share of our health tions may be a potential barrier to develop- and education resources, it will become mental screening for many families. increasingly important to have systems in place that facilitate research and permit Currently, there is no coordinated system to early identification and treatment. In addi- establish the percentage of children who tion, it is important to ensure a coordinated receive the benefits of early childhood service delivery system where families can developmental screening or to ensure that access validated, comprehensive, appropri- these services are universally available, and ate, and easy-to-use intervention services. data do not exist to track screening efforts National Health Tracking Network and Birth Defect Surveillance Systems: More Data are Needed In 2002, the CDC established a National In 2002 and 2003, Trust for America’s Health Environmental Public Health Tracking evaluated birth defect surveillance systems Program to begin work on building a around the country and found that while national public health tracking network. most states were sensitive to the need to Working through pilot projects and newly- enhance birth defect registration and track- established university centers of excellence, ing, the majority of states had unsatisfactory the program promises to significantly programs in place, due in large part to expand national capacity for tracking expo- resource limitations.31 Two thirds of all states sures to environmental hazards and related did not explore possible links between birth human health issues. defects and environmental exposures or between birth defects and other registries Birth defect surveillance and autism registries such as for cancer(s).32 For a fully-functioning are a critical element of a national health national health tracking network to be real- tracking network, allowing states to assess the ized, it is critical that the various components health and medical challenges of their new- of health tracking -- birth defects surveillance born populations, and providing researchers systems, chronic disease registries, environ- with important data. More than 60 percent of mental health hazards, occupational influ- birth defect causes are unknown, and cur- ences, lifestyle, behavioral, and other health- rently, states track birth defects with signifi- related factors -- be systematically integrated cant variation in the standards set and and adequately funded. achieved. In June 2004, the NBDPN pub- lished Guidelines for Conducting Birth Defects Funding for birth defects programs has Surveillance in order to improve the quality been inadequate at the state level for years and usefulness of birth defects data and to and has become increasingly precarious encourage and promote the use of the data in with cuts in CDC’s support to state birth the design and delivery of services, preven- defect surveillance programs. For example, tion, and intervention.30 there has not been sufficient funding to cre- 22 ate a birth defects network similar to that es for the disability. Tracking allows scien- which exists for state-based newborn screen- tists to “detect changes in the prevalence of ing, wherein children are tracked through- [autism], to understand the national impact out the entire process from identification to of autism and related conditions, and to receipt of services. Birth defects prevention determine whether ASDs affect certain peo- advocates and professionals argue that birth ple or geographic areas more than others.”33 defects programs are similar in importance Despite the need for coordinated monitor- to newborn screening because they have the ing systems for ASDs, these are relatively potential to identify an even larger number new endeavors and sites have faced signifi- of children who are in need of health and cant challenges in accessing the informa- support services. tion needed to most completely identify cases in the community. Lack of access to Monitoring programs for autism and relat- information on children’s developmental ed developmental disabilities can also be an issues contained in educational records invaluable tool to give researchers the infor- threatens the ability of these programs to mation they need to identify potential caus- provide accurate, ongoing information. TRACKING BIRTH DEFECTS BIRTH DEFECTS RESEARCHERS USE EPIDEMIOLOGIC METHODS TO TRACK AND “ UNDERSTAND BIRTH DEFECTS AND THEIR CAUSES.... ALTHOUGH BIRTH DEFECTS RESEARCH AND MONITORING HAVE LED TO THE DISCOVERY OF EFFECTIVE PREVENTION METHODS FOR MANY BIRTH DEFECTS, THE CAUSES OF 66 [PERCENT] OF ALL BIRTH DEFECTS REMAINS UNKNOWN.... FOR THESE QUESTIONS TO BE ANSWERED ... THE UNITED STATES MUST DEVELOP AND MAINTAIN STRONG STATE- AND COMMUNITY-BASED MONITORING PROGRAMS. 34 ” — CDC According to the CDC, there are 47 states birth defects about which information is col- and territories operating or actively planning a lected.38 Many states are in the process of surveillance program.35 However, only 15 of planning new or expanding existing monitor- these programs currently receive some finan- ing activities, but these efforts are largely con- cial support from CDC for birth defects sur- tingent on the receipt of additional resources. veillance and prevention, although technical In 2005, CDC also provided funds for eight assistance from CDC is available to all pro- Centers for Birth Defects Research and grams.36 There are four states that do not Prevention (CBDRP)to assist states in their have any form of birth defects monitoring efforts to improve monitoring, conduct local program: Idaho, Oregon, South Dakota, and research, and contribute to collaborative Wyoming.37 Additionally, Kansas has a registry studies using data from the National Birth program that collects statistics, but the infor- Defects Prevention Study (NBDPS).39 These mation is not used as part of a birth defects Centers include: Arkansas, California, Iowa, surveillance system. The monitoring systems Massachusetts, New York, North Carolina, and activities vary by state, including factors Texas, and Utah. CDC coordinates the such as timeliness of data reporting, whether CBDRP and participates in the NBDPS as states study the linkages between the data the ninth study site. and environmental factors, and the range of 23 States and Territories Operating or Actively Planning Birth Defects Surveillance Programs (47 total) (14 states and Puerto Rico receiving CDC funds for birth defects surveillance and prevention are noted in bold) (Seven states in planning phase are noted with a “*”) State Funding Sources Alabama 80% CDC grant; 20% university Alaska No specific funding source at present; currently operating on unexpended funds from 2002-2005 CDC grant Arizona 40% CDC grant; 30% general state funds; 3% maternal and child health funds; 27% genetic screening revenues Arkansas 100% general state funds California 20% CDC grant; 35% general state funds; 20% maternal and child health funds; 15% other federal funds; 10% DHS/UC pass through Colorado 70% CDC grant; 30% general state funds Connecticut 100% maternal and child health funds Delaware (not reported) D.C.* 100% Title V Block Grant Florida 30% CDC grant; 70% general state funds Georgia 60% general state funds; 40% other federal funds Hawaii 73% State special funds; 27% private foundations Illinois 27% CDC grant; 73% general state funds Indiana 3% general state funds; 50% maternal and child health funds; 47% other federal funds Iowa 65% CDC grant; 35% general state funds Kentucky 25% CDC grant; 75% general state funds Louisiana 100% Title V CSHCN funds Maine MCH Title V funds pending additional funding sources Maryland 100% general state funds Massachusetts 90% CDC grant; 10% general state funds Michigan 25% CDC grant; 75% general state funds Minnesota* 90% CDC grant; 5% general state funds; 5% March of Dimes in-kind match to CDC grant Mississippi 5% maternal and child health funds; 95% genetic screening revenues Missouri 37% maternal and child health funds; 54% service fees; 9% private foundation Montana 100% CDC grant Nebraska 100% maternal and child health funds Nevada* 100% service fees New Hampshire* 100% CDC grant New Jersey 10% CDC grant; 85% maternal and child health funds; 5% genetic screening revenues New Mexico 59% CDC grant; 16% general state funds; 25% maternal and child health funds New York 45% CDC grant; 15% general state funds; 24% maternal and child health funds; 16% other federal funds North Carolina 45% CDC grant; 55% general state funds North Dakota State Systems Development Initiative grant Ohio* 100% CDC grant Oklahoma 30% CDC grant; 13% general state funds; 57% maternal and child health funds Pennsylvania* 100% maternal and child health funds Puerto Rico 43% CDC grant; 57% maternal and child funds Rhode Island 70%CDC; 30% maternal and child health funds South Carolina 65% general state funds; 25% institutional funds; 10% March of Dimes Tennessee 100% general state funds Texas 51% general state funds; 33% maternal and child health funds; 16% preventive health block grant; Does not include CDC-supported research center funds Utah 20% CDC grant; 80% maternal and child health funds Vermont* 100% CDC grant Virginia 30% CDC grant; 70% maternal and child health funds Washington 40% general state funds; 60% maternal and child health funds West Virginia Title V and state appropriations Wisconsin 50% CDC grant; 50% general state funds 24 TRACKING AUTISM “ THE CAUSES OF ASDS REMAIN UNKNOWN. BOTH GENETIC AND ENVIRONMENTAL FACTORS MIGHT PLAY A ROLE, THOUGH NO SINGLE GENE OR ENVIRONMENTAL FACTOR IS KNOWN TO CAUSE ASDS. ” 40 – CDC In 2004, only 16 sites in 18 states receive funds from the CDC to support tracking of Autism Spectrum Disorders.41 Most of these programs are relatively new and are at initial stages of development. States with CDC Monitoring and States with CDC Monitoring Research Activities (seven total) Activities (11 total) Centers of Excellence for Autism and Autism and Developmental Developmental Disabilities Research Disabilities Monitoring Network and Epidemiology California Alabama Colorado Arizona Delaware (joint program with Maryland) Arkansas Georgia (CDC’s program) Florida Maryland (joint program with Delaware) Illinois (joint program with Missouri) North Carolina Missouri (joint program with Illinois) Pennsylvania New Jersey South Carolina Utah West Virginia Wisconsin 25 CONCLUSIONS AND RECOMMENDATIONS: Continued Progress Demands Data and Collaboration E normous progress has been made over the last two decades in research of causes and treatments for birth defects and developmen- tal disabilities. Children with conditions that were once fatal are living into adulthood. Others with disabilities that affect academic progress and success are obtaining the assistance they need, thanks to enhanced supports and adaptive strategies. However, these successes illustrate the need ty; information for future research; and for further progress. Knowing that research evaluation of the effectiveness of preven- has radically transformed the prospects for tion programs. At the federal level, at babies born with certain birth defects, the least $20 million should be appropriated health community is compelled to find caus- for the CDC’s state-based birth defects es for the nearly 70 percent of birth defects surveillance activities and the Center for that remain unexplained. Moreover, with Birth Defects Research and Prevention. the number of children now identified as having a developmental disability escalating, 2. With adequate privacy protections in learning about the causes of these disabili- place, ensure that birth defect and ties is essential to public health. developmental disability surveillance sys- tems have access to critical data. To be To ensure that progress towards identifying, effective, these prevention tools depend treating and ultimately, preventing birth on access to multiple sources of data defects and developmental disabilities, where children with these conditions are TFAH recommends the following: identified, including medical and educa- tional settings which can be accomplished 1. Adequately fund birth defects surveil- while maintaining individuals' confiden- lance systems and autism registries at tiality. In particular, developmental dis- the state and federal levels. These tools ability surveillance systems have faced sig- provide the data necessary to perform sev- nificant challenges in accessing educa- eral key public health functions, includ- tional records, notwithstanding the fact ing referral of children to appropriate that access is necessary to monitor local services; evaluation of the impact of birth and national trends and to provide accu- defects and developmental disabilities on rate ongoing information. the medical system and on the communi- 27 3. Integrate key data systems by linking and nutrition over time, a similar existing high-quality data systems (e.g., national repository should be estab- vital records, birth defects surveillance lished for routine blood sampling con- systems, newborn screening programs, ducted during a baby’s birth. The estab- immunization registries, educational lishment of a repository will ensure that data, nationwide health tracking). Such the samples are properly cataloged and integration would allow for additional maintained, which in turn could be public health uses of the information, invaluable to prevention research. such as linking environmental exposure data with developmental outcomes or 5. Realize the full potential of birth examining the long-term health status defects and developmental research of children with birth defects. by continuing to invest in important ongoing studies, including the National 4. Establish a national repository for Birth Defects Prevention Study, the blood samples that can help identify National Children’s Study, and the the causes of birth defects and devel- Centers for Autism and Developmental opmental disabilities that are due to the Disabilities Research and Epidemiology environment (e.g., elevated blood lead case-cohort study. These studies are at levels), infectious disease agents, or critical junctures and failure to fully gene-environment interactions. Just like implement them will not only delay the CDC’s nutritional studies have main- important discoveries, but also result in tained biological samples for decades to loss of previous investments. help track changes in exposure, health 28 APPENDIX: Glossary of Terms and Acronyms AAP: The American Academy of Pediatrics is an CDC: The Centers for Disease Control and “organization of 60,000 pediatricians com- Prevention, a part of HHS, serves as the pri- mitted to the attainment of optimal physi- mary federal agency “for developing and cal, mental, and social health and well-being applying disease prevention and control, for all infants, children, adolescents and environmental health, and health promo- young adults.” http://www.aap.org tion and education activities designed to improve the health of the people of the ACF: The Administration on Children and United States.” http://www.cdc.gov Families, a part of HHS, funds “territory, local, and tribal organizations to provide Cerebral Palsy: Cerebral Palsy is an umbrella family assistance (welfare), child support, term for a series of chronic disorders in child care, Head Start, child welfare, and which motor control is impaired by damage other programs relating to children and to certain parts of the brain. families.” http://www.acf.hhs.gov CMS: The Centers for Medicare and Medicaid AHRQ: The Agency for Healthcare Research Services, a part of HHS, administers and Quality, a part of HHS, translates Medicare, Medicaid, and the State “research findings into better patient care Children’s Health Insurance Program. and provid[es] policymakers and other http://cms.hhs.gov health care leaders with information needed Developmental Disabilities: A cognitive, to make critical health care decisions.” intellectual, or behavioral impairment that http://www.ahrq.gov presents itself during childhood. ASD: Autism spectrum disorders (ASD), also D o w n s y n d rome: Down syndrome, also known as pervasive developmental disor- known as Trisomy 21, and characterized by ders, are a family of developmental disor- an extra chromosome 21, is the most com- ders most commonly associated with autism mon chromosomal birth defect. Asperger’s Syndrome: Asperger’s Syndrome is a Dyslexia: Dyslexia, a learning disability, is from of ASD characterized by normal intel- a language-based disorder that affects ligence and language development, as well reading. as autistic-like behaviors and marked defi- ciencies in social and communication skills. FDA: The Food and Drug Administration, a part of HHS, works to ensure “the public health Attention Deficit Hyperactivity Disorder by assuring the safety, efficacy, and security (ADHD): ADHD is a neurobehavioral disor- of human and veterinary drugs, biological der characterized by difficulties in staying products, medical devices, our nation’s food on task, following instructions, paying atten- supply, cosmetics, and products that emit tion to detail, and sitting still. radiation.” http://www.fda.gov Birth Defect: Also described by the term con- Fragile X syndrome: Fragile X syndrome is genital, a birth defect is a structural, meta- an inherited condition impacting the X bolic or functional abnormality that is pres- chromosome that is a cause of mental ent at birth, detected before birth, during the retardation. infant’s first year of life or even later in life. 29 HMO: A health maintenance organization is a NCBDDD: The National Center on Birth group insurance organization where mem- Defects and Developmental Disabilities, a part of bers are often required to use certain health- the CDC, works to “promote the health of care providers such as doctors and hospitals. babies, children, and adults, and enhance the potential for full, productive living.” HRSA: The Health Resources and Services http://www.cdc.gov/ncbddd/ Administration, a part of HHS, “provides national leadership, program resources and NICHD: The National Institute of Child Health services needed to improve access to cultur- and Human Development, a part of the NIH, ally competent, quality health care.” ensures “that every person is born healthy http://www.hrsa.gov/ and wanted, that women suffer no harmful effects from reproductive processes, and that Intellectual Disabilities (IDs): IDs, often all children have the chance to achieve their referred to as mental retardation, are a cog- full potential for healthy and productive lives, nitive disability characterized by significantly free from disease or disability, and to ensure below-average intellectual functioning (gen- the health, productivity, independence, and erally regarded as an IQ below 70), com- well-being of all people through optimal reha- bined with impairment in carrying out func- bilitation.” http://www.nichd.nih.gov tions of daily life such as caring for oneself, communicating, and interacting socially. NIDCD: The National Institute on Deafness and Communication Disorders, a part of the NIH, works IACC: The Interagency Autism Coordinating to improve the lives of those who have commu- Committee coordinates efforts across federal nication disorders. http://www.nidcd.nih.gov/ agencies. Participants include NIH, FDA, ACF, AHRQ, CMS, CDC, HRSA, and the NIEHS: The National Institute of Environmental Department of Education. Health Sciences, a part of the NIH, works to “the http://www.nimh.nih.gov/utismiacc/ burden of human illness and dysfunction index.cfm from environmental causes by understanding each of these elements and how they interre- IES: The Institute for Education Sciences is the late.” http://www.niehs.nih.gov/ research arm of the Department of Education. Its mission is to expand knowl- NIH: The National Institutes of Health, a part edge and provide information on the condi- of HHS, is the “steward of medical and tion of education, practices that improve aca- behavioral research for the Nation.” demic achievement, and the effectiveness of http://www.nih.gov/ federal and other education programs. NIH/ACC: The Autism Coordinating Committee Learning Disability (LD): A learning disabil- was formed by NIH to enhance the quality, ity is distinct from mental retardation in that pace, and coordination of efforts at NIH to find a diagnosed individual may have normal or a cure for autism. http://www.nidcd.nih.gov/ above-average intelligence, but has difficulty NINDS: The National Institute of Neurological acquiring new skills or information Disorders and Stroke, part of the NIH, is “the MCHB: The Maternal and Child Health nation’s leading supporter of biomedical Bureau, a part of HRSA and HHS, is the gov- research on disorders of the brain and nerv- ernment agency charged with “assuring the ous system.”http://www.ninds.nih.gov/ health of American mothers and children.” Phenylketonuria (PKU): PKU is a condition in http://mchb.hrsa.gov/ which the body cannot process a protein NBDPN: The National Birth Defect Prevention found in many foods; it can be treated Network is a group of birth defect surveillance through specialized diets. programs and individuals interested in birth Sensory Disorders: Sensory Disorders, an asso- defect prevention, research and outreach for ciated problem of ASD, are a lack of response families and providers. http://www.nbdpn.org 30 to pain stimulus, hypersensitivity, or both. Endnotes 1 Here, “birth defect” means a structural, metabolic or 23 Laura Williams, et. al., “Prevalence of Spina Bifida and functional abnormality that may be detectable at birth or Anencephaly During the Transition to Mandatory Folic early childhood, and “developmental disability” means a Acid Fortification in the United States, Teratology: cognitive, intellectual or behavioral impairment that pres- 66:33-39 (9 February 2002): 33. ents itself during childhood. 24 “Knowledge and Use of Folic Acid by Women of 2 “Quick Reference and Fact Sheets: Birth Defects,” Childbearing Age — United States, 1995 and 1998,” March of Dimes. <www.marchofdimes.com/profession- Morbidity and Mortality Weekly Report: 48 (Atlanta, GA: als/681_1206.asp.>19 April 2005. Centers for Disease Control and Prevention, 30 April 3 “Who We Are,” National Birth Defects Prevention Network. 1999) RR-16: 325-7. Available at <http://nbdpn.org/aboutus.html.> 19 May 2005. <http://www.cdc.gov/epo/mmwr/preview/mmwrhtml/0 0056982.htm.> 12 April 2005. 4 “Vision Impairment,” National Center of Birth Defects and Developmental Disabilities, Centers for Disease Control and 25 “Newborn Screening: Quality Assurance and Prevention. <http://www.cdc.gov/ncbddd/developmental Proficiency Testing for Newborn Screening,” National disability/ddvi.htm.> 10 April 2005. Center for Environmental Health, Division of Laboratory Sciences, Centers for Disease Control and 5 “Hearing Loss,” National Center of Birth Defects and Prevention. <http://www.cdc.gov/ nceh/dls/new- Developmental Disabilities, Centers for Disease Control and born_screening.htm.> 12 April 2005. Prevention. <http://www.cdc.gov/ncbddd/developmental disability/ddvi.htm.> 10 April 2005. 26 Newborn Screening: Toward a Uniform Screening Panel and System - Draft Report. Health Resources 6 “Facts,” Autism Speaks. <http://www.autismspeaks.org/ and Services Administration. Accessed in the Federal autism/menu/facts.asp.> 6 May 2005. Register: 70:44 (8 March 2005): 25. 7 “What is Autism,” Autism Speaks. <http://www.autisms- 27 “Child Development: Using Developmental Screening to peaks.org/ autism/menu/facts.asp.> 6 May 2005. Improve Children’s Health,” National Center of Birth 8 “Vaccines and Autism Theory,” National Immunization Defects and Developmental Disabilities, Centers for Program, Centers for Disease Control and Prevention. Disease Control and Prevention. <http://www.cdc.gov/ <http://www.cdc.gov/nip/vacsafe/ ncbddd/child/improve.htm.> 12 April 2005. concerns/autism/default.htm.> 10 April 2005. 28 “Developmental Surveillance and Screening of Infants 9 “Immunization Safety Review: Vaccines and Autism,” and Young Children,” Committee on Children and Institute of Medicine of the National Academies. Disabilities, American Academy of Pediatrics. <http://aap- <http://www.iom.edu/report.asp?id= policy.aappublications.org/ cgi/content/full/pediatrics> 20155&AddInterest=1053> 6 May 2005. 14 April 2005. 10 “Neonatal Encephalopathy and Subsequent Cerebral 29 “CDC Programs in Brief: Using Developmental Screening Palsy: Defining the pathogenesis and pathophysiology,” to Improve Children’s Health, U.S. Centers for Disease The American College of Obstetricians and Control and Prevention. <http://www.cdc.gov/pro- Gynecologists. <http://www.acog.org/ navbar/ grams/bd10.htm.> 8 April 2005. current/publications.cfm.> 2 June 2005. 30 Sever, Lowell, E., ed. Guidelines for Conducting Birth 11 “Mental Retardation,” National Dissemination Center for Defect Surveillance (Atlanta, GA: National Birth Defects Children with Disabilities. <http://www.nichcy.org/ Prevention Network, Inc., June, 2004). pubs/factshe/fs8txt.htm.> 25 April 2005. 31 Birth Defects Tracking and Prevention: Too Many 12 “Mental Retardation (part 1),” National Center of Birth States Not Making the Grade (Washington, D.C.: Trust Defects and Developmental Disabilities, Centers for Disease for America’s Health, 2002) and Birth Defects Control and Prevention. <http://www.cdc.gov. Tracking and Prevention One Year Later: One Step ncbddd/dd/ddmr.htm.> 25 April 2005. Forward. Two Steps Back? (Washington, D.C., Trust for America’s Health, 2003). Both available at 13 Ibid. www.healthyamericans.org. 14 “Fact Sheet: Frequently Asked Questions About Mental 32 Ibid. Retardation,” American Association on Mental Retardation. <http://www.aamr.org/Policies/ faq_men- 33 “Autism Spectrum Disorders in the United States, 2004,” tal_retardation.shtml.> 5 May 2005. U.S. Centers for Disease Control and Prevention. (Rev. October 2004) <http://www.cdc.gov/ncbddd/dd/ 15 Ibid. ddautism.htm.> 3 May 2005. 16 “Language Guide,” Special Olympics. 34 Birth Defects Research & Surveillance 2004 (Atlanta, GA: <http://www.specialolympics.com/Special+Olympics+ Centers for Disease Control and Prevention 2004): 2. Public+Website/English/About_Us/Language_Guide/ default.htm.> 5 May 2005. 35 National Center for Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. 17 “Introduction to Mental Retardation,” The ARC. (personal communication on 14 June 2005). <http://www.thearc.org/faqs/mrqa.doc> 5 May 2005. 36 “U.S. Surveillance, “ National Center for Birth Defects and 18 While every effort was made to standardize data and dis- Developmental Disabilities, Centers for Disease Control and ease definitions where possible, differences between Prevention. <http://www.cdc.gov/ncbddd/bd/ state.htm> states do exist. Comparisons, therefore, are for the pur- 14 June 2005. poses of context, and are not “absolute.” 37 Birth Defects Research & Surveillance 2004 (Atlanta, GA: 19 “One in Seven,” Learning Disabilities Association of Centers for Disease Control and Prevention 2004): 2. America. <http://www.ldanatl.org/new_to_ld/ index.asp> 13 June 2005. 38 Birth Defects Tracking and Prevention: Too Many States Not Making the Grade (Washington, D.C.: Trust for America’s 20 “NINDS Attention Deficit-Hyperactivity Disorder Health, 2002). Available at www.healthyamericans.org. Information Page,” National Institute of Neurological Disorders and Stroke, National Institutes of Health. 39 National Center for Birth Defects and Developmental <http://www.ninds.gov/disorders/adhd/adhd.htm.> Disabilities, Centers for Disease Control and Prevention. 12 April 2005. (personal communication on 14 June 2005). 21 “Attention Deficit Disorder and Learning Disability: 40 “Autism Spectrum Disorders in the United States, 2004,” United States, 1997-98,” Vital and Health Statistics: U.S. Centers for Disease Control and Prevention. (Rev. 10:206 (May 2002) National Center for Health Statistics, October 2004) <http://www.cdc.gov/ncbddd/ Centers for Disease Control and Prevention. dd/ddautism.htm.> 3 May 2005. <http://www.cdc.gov/nchs/ 41 Ibid. data/series/sr_10/sr10_206.pdf> 17 May 2005. 42 “NINDS Attention Deficit-Hyperactivity Disorder 22 “Folic Acid Position Statement,” National Healthy Information Page,” National Institute of Neurological Mothers, Healthy Babies Coalition. (June 2001) Disorders and Stroken, National Institutes of Health. <http://www.hmhb.org/ps_folicacid.htm.> 12 April <http://www.ninds.gov/disorders/adhd/adhd.htm.> 9 2005. May 2005. 31 1707 H Street, NW, 7th Floor Washington, DC 20006 (t) 202-223-9870 (f) 202-223-9871