Federal Autism Activities: Funding for Research Has Increased, but Agencies Need to Resolve Surveillance Challenges
Released: 2006-08-04T00:00:00

Letter

Background

Autism is a complex developmental disability that impairs development in social interaction and communication and is often characterized by repetitive behaviors, such as jumping up and down and rocking. In particular, people with autism may be unable to process nonverbal communication, including body language or inflection, causing them to have difficulty understanding differences in tone, such as discerning when someone is joking. People with autism also often have difficulty ascertaining the emotional state of those around them.

What is commonly referred to as autism is, more precisely, a group of disorders known as autism spectrum disorders. Autistic disorder is a more severe form of autism, and Asperger syndrome is a milder form. An individual who has symptoms of either of these disorders but does not meet their specific criteria is diagnosed with pervasive developmental disorder not otherwise specified. Other rare, severe disorders that are included in the group of autism spectrum disorders are Rett syndrome and childhood disintegrative disorder. While autism typically is detected during the first 3 years of life, the symptoms, degree, and manner of manifestation range substantially among those with autism. An individual with autism may have some degree of mental retardation or may have above-average intelligence, an expansive vocabulary, or extraordinary abilities in certain areas, such as mathematics or music.

Symptoms that children with autism may exhibit include lack of meaningful gestures by 12 months of age, lack of speech by 16 months of age, inability to respond to one’s name, a loss of language or other social skills previously gained, poor eye contact, atypical attachment to a particular toy or object, or inability to use toys or objects. Furthermore, children with autism may not respond like other children. For example, they may seem indifferent, seldom seek comfort, and resist or passively accept affection. Because it is common for individuals with autism to have difficulty regulating their emotions, they may behave inappropriately, disruptively, or even aggressively. They may become frustrated when they are placed in a new environment, and when frustrated may pull their hair, bang their heads, or attack others or themselves.

Currently, there is no consensus about the cause of autism. While autism is known to be the result of a neurological disorder that affects the normal functioning of the brain, it is not known precisely what causes the brain disorder or which factors are associated with particular severity levels within the autism spectrum. Theories include genetic components, environmental components, and some combination of genetics and the environment.

Experts generally agree that early detection is the best hope of appropriate treatment and best quality of life in later years for those with autism. Most also agree that people with autism generally respond better to highly structured programs tailored to each individual’s particular developmental deficits. To date, most treatment for children with autism has focused on education interventions, which may include speech and language therapy, occupational therapy, and behavior modification. Under the Individuals with Disabilities Education Act (IDEA), states are required to provide eligible children with needed special education and related services. Some physicians may prescribe medications to treat behavioral problems such as aggression and self-injurious behavior; these medications are generally the same medications used to treat similar symptoms in other disorders.

It is not known how many people in the United States currently have autism. In 1996, CDC began conducting population-based studies to determine the prevalence of and risk factors for autism, and the agency has reported prevalence rates for children in two communities. These rates were 3.4 and 6.7 per 1,000 children and were higher than previously reported prevalence rates. In addition, in May 2006, CDC reported estimated autism prevalence rates for the period of 2003 to 2004 based on two national surveys, one of which indicated a rate of 5.5 per 1,000 children and the other of which indicated a rate of 5.7 per 1,000 children. Some experts have attributed the reported increase in prevalence to changes in diagnostic criteria, and some have contended that it reflects improvements in early detection. The apparent increase in prevalence, coupled with the lack of a known cause or cure, has sparked concern, particularly among families with affected children.

The Children’s Health Act of 2000 required HHS and certain HHS agencies to conduct various activities and programs related to autism. NIH was charged with expanding, intensifying, and coordinating research on autism and awarding grants for autism research centers of excellence. NIH was also directed to establish a program through which tissue samples and genetic materials would be made available for research and to establish a means through which the public could obtain information and provide comments on NIH’s autism-related activities. In addition, the law required CDC to establish an autism and developmental disabilities surveillance program through regional centers of excellence to collect and analyze information and coordinate research related to the epidemiology of autism. The law also required the establishment of an interagency autism coordinating committee to coordinate efforts within HHS. Many of these activities have been funded through lump sum appropriations to NIH and CDC, and the Congress has generally not appropriated funds specifically for autism projects and activities.

NIH and CDC Support an Array of Autism Activities and Report That Their Funding of Autism Activities Has Increased

NIH and CDC support an array of autism activities, and officials from both agencies told us that their funding of autism activities increased from fiscal year 2000 to fiscal year 2005. NIH’s efforts include research on determining the causes of autism, improving the diagnosis and treatment of autism, and improving the delivery of autism-related services. CDC supports surveillance activities, including tracking the characteristics and prevalence of autism. CDC’s surveillance programs have relied on information from multiple sources, including student education records, to obtain a complete and unduplicated count of the number of children with autism. However, CDC officials believe a 2003 change in Education’s interpretation of the federal law governing the privacy of education records has hindered CDC’s ability to continue to use this methodology. HHS and Education were required to submit a report to congressional committees in June 2005 identifying how to overcome the challenges CDC faces in using education records to conduct surveillance; as of June 2006, the agencies had not agreed on options for overcoming these challenges and had not completed the report. NIH’s estimated funding of autism research increased from about $51.5 million in fiscal year 2000 to about $101.6 million in fiscal year 2005. CDC’s total funding of autism activities increased from about $2.1 million to about $16.7 million during the same period.

NIH Supports a Wide Array of Research Related to Autism

NIH has undertaken research activities that focus on determining the causes of autism, improving the diagnosis and treatment of autism, and improving the provision of services related to autism. (See app. II for information on selected NIH autism activities.) Many of these activities were developed to respond to the Children’s Health Act’s general requirement that NIH expand, intensify, and coordinate its autism research activities and to the act’s specific requirements, such as that NIH establish centers for conducting research on autism and establish a program through which tissue samples and genetic materials would be available for research.

NIH research that focuses on determining the causes of autism includes efforts to identify genes that increase susceptibility to the disorder and efforts to ascertain the role of environmental exposures. For example, NIH’s National Institute of Environmental Health Sciences, in partnership with the Environmental Protection Agency, supports a national network of centers to examine the effect of environmental exposures on children’s health. Of the 11 centers this program supports, 2 centers conduct research on environmental causes of autism and perform clinical evaluations of children with autism.

NIH also conducts research evaluating specific treatments for the symptoms associated with autism. Several federal officials and advocacy association representatives told us that there are not enough evidence- based treatments for people with autism, and NIH has several activities to help develop such treatments. For example, in response to the increasing use of medications to treat symptoms of autism, the National Institute of Mental Health (NIMH) in 1997 established a network of research sites to study the use of psychotropic drugs in the treatment of autism. In 2002, the network was renewed and expanded to include psychosocial and behavioral interventions. Support for the research is designated specifically for evaluating treatments for autism, and the networks are intended to be a national resource that will expedite clinical trials in children. For example, one study found that methylphenidate—a treatment for attention deficit/hyperactivity disorder—was often effective for improving inattention, hyperactivity, impulsivity, and distractibility in children with autism who participated in the study.

NIH’s largest investment in autism research is through its support of networks of research centers, such as the Collaborative Programs of Excellence in Autism (CPEA), consisting of nine centers, and the Studies to Advance Autism Research and Treatment (STAART), consisting of eight centers and a data coordination center. NIH’s National Institute of Child Health and Human Development and National Institute on Deafness and Other Communication Disorders established the CPEA network in 1997; in 2002, they renewed the network for an additional 5 years and in 2003 expanded it to include a data coordinating center. NIH began the STAART program in 2001 in response to the Children’s Health Act. Some centers participate in both networks, which have similar purposes in conducting research on the causes, diagnosis, early detection, and treatment of autism. Unlike the CPEA network, the STAART network requires that each center have at least one treatment project. NIH officials told us the institutes are planning to unify the STAART centers and CPEAs into a new network—Autism Centers of Excellence—in an effort to improve coordination of NIH-sponsored efforts, avoid duplication, and maximize the efficient use of resources.

NIH also supports programs that provide research resources, such as genetic materials and tissue samples, to scientists working on autism. For example, NIH’s National Institute of Neurological Disorders and Stroke and NIMH are providing support to the Harvard Brain Tissue Resource Center to increase the collection of brains from individuals diagnosed with autism, which is expected to facilitate neurobiological research on autism. In addition, several NIH institutes and centers support the collection, sharing, and distribution of genetic and tissue materials across the scientific community through NIMH’s Autism Genetics Initiative.

NIH officials told us that through the agency’s internal Autism Coordinating Committee, five NIH institutes collaborate closely on their autism activities, such as managing grant programs, developing research program announcements, and responding to inquiries from researchers. For example, to encourage investigator-initiated studies, the five institutes jointly sponsor a broadly based program announcement that solicits research proposals designed to elucidate various issues related to autism, including causes and the optimal way of delivering services. NIH officials told us that there is usually no obvious scientific demarcation for which institute is the best fit for a grant application, so the committee generally determines the distribution of grants according to available resources. The committee is also working with the NIH Center for Information Technology to create and implement a National Database for Autism Research. NIH officials expect the database to allow researchers to share data; make disparate databases available through a single source; and coordinate data with other federal databases, such as NIMH’s Autism Genetics Repository. NIH officials also told us that the committee drafted the request for applications for the new Autism Centers of Excellence program.

CDC Supports Autism Surveillance, but Faces Challenges in Its Ability to Report Accurate Prevalence Data

CDC supports surveillance activities in certain locations that track the prevalence of autism and other developmental disabilities in children. In 1996, CDC began collecting information on the prevalence of autism as a part of its Metropolitan Atlanta Developmental Disabilities Surveillance Program, and in 1999, CDC began supporting autism surveillance in West Virginia. CDC expanded its surveillance activities in fiscal year 2000 to form the Autism and Developmental Disabilities Monitoring Network, which initially consisted of 5 project sites established to conduct surveillance in 6 states. Subsequent expansions of the network in fiscal years 2002 and 2003 added additional project sites and states, and as of February 2006, the network consisted of 10 project sites established to conduct surveillance in 11 states. CDC also supports surveillance at 6 additional sites through its Centers of Excellence for Autism and Developmental Disabilities Research and Epidemiology, established in 2001 in response to the Children’s Health Act. In addition to engaging in surveillance, these sites conduct research to determine the causes of and risk factors for autism. CDC, through its autism surveillance activities, also collects information on the characteristics of autism, including the severity of symptoms and the presence of co-occurring disorders.

To obtain a complete and unduplicated count of the number of children with autism, most of CDC’s surveillance sites have shared the same method of comparing information from multiple data sources—including student education records, medical records, and vital records. For example, according to CDC officials, information in education records has been used to identify children with autism who were not identifiable from other sources. In addition, a child with autism may be identified in multiple data sources, and comparing these sources helps ensure the child is not counted more than once. CDC officials said that to compare multiple data sources accurately, the surveillance sites must have personally identifiable data, such as the child’s name or Social Security number. To protect the privacy of information in children’s education records, after CDC researchers are sure they have an unduplicated count, all personally identifiable markers in the data sets are replaced with codes that are not linked to personally identifiable data, according to CDC officials.

CDC officials believe the agency’s surveillance programs will not be able to continue using this methodology because of a 2003 change in Education’s interpretation of FERPA. FERPA guarantees parents access to their child’s education records and protects the privacy of these records by prohibiting their disclosure without parents’ prior written consent, except in limited circumstances. In December 2000, CDC entered into a memorandum of agreement with Education that designated CDC an authorized representative of Education, which allowed CDC access to data in personally identifiable education records for its surveillance program in Atlanta. Several other sites in the monitoring network entered into similar agreements with their respective state education agencies to gain access to this type of data. However, in 2003, Education determined that this sharing of information was not consistent with FERPA, stating that only employees, contractors, and others under the direct control of a state education agency can be designated as its authorized representative. In response to subsequent inquiries, Education sent letters to two states’ education agencies informing them of this reinterpretation of FERPA. It posted these letters on the Education Web site. The agreement between Education and CDC that governed the surveillance program in Atlanta expired in December 2005, and based on its 2003 interpretation of the statute, Education did not renew it. According to CDC, as of May 2006, 9 of its 16 autism surveillance sites were operating under state-level memorandums of agreement to access education records, while the Atlanta site had stopped collecting data and the other sites were using other methodologies, such as collecting data only from medical sources.

CDC and Education officials have discussed issues related to CDC’s use of education records for autism surveillance. Education officials have stated that FERPA requires CDC to obtain written parental consent to gain access to personally identifiable education records and that as an alternative, CDC could choose to conduct its surveillance activities using aggregated data. CDC officials said that obtaining parental consent is not an optimal research method because, in general, low proportions of parents of school-aged children respond to such requests, resulting in incomplete data. They also said that personally identifiable data are needed during the initial stage of surveillance to ensure an unduplicated count of individuals with autism. CDC officials discussed with us approaches that they believe would allow CDC to continue surveillance using personally identifiable education records. The options CDC identified would require either legislative or administrative action, including amending FERPA, the Children’s Health Act, or the Public Health Service Act to permit autism surveillance activities without parental consent or to provide for a passive consent system for parents; or allowing staff from education agencies to oversee or participate in data collection.

The Birth Defects and Developmental Disabilities Prevention Act of 2003 required the Secretary of HHS and the Secretary of Education to submit a report to congressional committees by June 2005 concerning CDC’s autism and developmental disabilities surveillance activities, including a description of challenges to CDC’s obtaining education records. The report is also to describe methods for overcoming these challenges, such as efforts to increase parental consent, and to describe the justifications for any recommendations for legislative changes, including changes to FERPA. As of June 2006, CDC and Education had not agreed on options for overcoming the challenges CDC faces in using education records, and CDC and Education officials told us they could not estimate when the report would be ready for submission. CDC officials told us that the agency was developing a draft of the report, which Education would then need to review.

NIH and CDC Reported That Their Funding of Activities Related to Autism Increased from Fiscal Year 2000 to Fiscal Year 2005

NIH’s funding of autism research increased from about $51.5 million in fiscal year 2000 to about $101.6 million in fiscal year 2005, based on estimated funding data provided by NIH. (See table 1.) NIH data show that NIMH has provided the greatest amount of support for autism research among NIH’s institutes, and its estimated funding for autism research increased from about $22.6 million in fiscal year 2000 to about $58.4 million in fiscal year 2005. NIMH considers the total amount awarded for each project as autism funding, even when autism is only one of several disabilities being studied. According to NIMH, many of the institute’s grants target a broad question related to neurodevelopment that has implications for autism and many other developmental disabilities. Because the research has the potential to produce important information about autism, however, NIMH believes that 100 percent of the grant amount should be considered autism funding even though the grant also covers other disabilities.

Estimated combined funding for autism research at other NIH institutes increased from about $28.9 million in fiscal year 2000 to about $43.2 million in fiscal year 2005. Unlike NIMH, these institutes prorate the research dollars, estimating a percentage of the project that focuses on autism, but NIH officials told us that there is variability in how these institutes estimate the prorated amounts. NIH officials told us that the agency is developing a single system for disease coding across all NIH institutes; the agency anticipates implementing this system in October 2007.

CDC’s funding of autism activities increased from about $2.1 million in fiscal year 2000 to about $16.7 million in fiscal year 2005. The National Center on Birth Defects and Developmental Disabilities has provided the most support for CDC’s autism activities, and agency officials told us that the center’s funding of these activities increased from about $1.1 million to about $14.9 million during this period. CDC’s funding amounts include the agency’s funding of autism and developmental disabilities surveillance activities and of research to determine the causes and characteristics of autism. CDC officials told us that CDC counts the total amount of its funding of the surveillance activities as autism funding because researchers need to collect information on other developmental disabilities to identify autism cases. (See table 2 for CDC’s funding of autism activities for fiscal years 2000 through 2005.)

Federal Agencies Support Services for People with Autism Primarily Through Broader Disability Programs, and Some Services May Not Always Be Available

Federal agencies support services for people with autism primarily through broader programs that focus on disabilities, and some services may not always be available to meet the needs of this population. ACF and Education support education services for children with autism through broader programs for people with disabilities. ACF’s Head Start program provides early childhood education to young children in low-income families and is often the first opportunity to identify a child’s disability. Education supports programs that provide special education services for children and young adults with disabilities, but schools face challenges in providing services. Other federal agencies, including HRSA and CMS, support programs that provide services or enhance the delivery of health care for people with developmental disabilities. For example, CMS supports community-based services to meet the needs of people with autism through Medicaid programs; however, many people with autism may not be able to obtain services through these programs.

Services for Children with Autism Are Delivered Primarily through Education Programs for Children with Disabilities, and Schools Face Challenges in Providing Services

ACF and Education administer programs that identify and educate children with disabilities, including autism. ACF’s Head Start program provides early childhood education and services to children from low- income families, generally from birth to age five, with the goal of increasing school readiness. Head Start policies and procedures must ensure that at least 10 percent of all enrollment opportunities in each state are available to children with disabilities and ensure that services are provided to meet their individual needs. For a child enrolled in Head Start, the program is often the first opportunity to identify a disability affecting the child’s development. According to ACF, in fiscal year 2004, about 55 percent of the children with disabilities enrolled in Head Start had their disabilities identified after becoming enrolled.

Education has responsibility for implementing IDEA, whose purpose is to provide a free and appropriate public education to children with disabilities. Under IDEA, Education supports early intervention services for children under age 3 through the Early Intervention Program for Infants and Toddlers with Disabilities, which provides grants to states to implement programs to reduce the risk that children will have a substantial developmental disability in the future. Beginning at age 3 and generally through age 21, children with disabilities are eligible to receive special education and related services that conform with an individualized education program (IEP). IDEA requires parents, teachers, school personnel, and sometimes the student to work as a team to develop an IEP that includes annual goals that reflect the child’s educational, behavioral, and physical needs and describes the services that the student will receive. Each school is responsible for ensuring that the IEP is carried out as written, notifying parents of the child’s progress, and reevaluating the child at least every 3 years. Under IDEA, parents have several options to advocate and negotiate for what will be included in the IEP. If parents disagree with the education plan determined by the IEP team, they may discuss their concerns with other members of the team; if agreement is not reached, parents may ask for mediation, file a complaint with the state education agency, or request a hearing before the appropriate education agency. Parents who are not satisfied with the outcome of the hearing may file a lawsuit under certain circumstances.

The availability of education services for children with disabilities, including autism, varies across states and school districts, and schools face challenges in providing services for these children. For example, many children with autism have communication problems, but some school districts have encountered difficulties in providing speech and language services because of a shortage of specialists who can provide these services. In addition, some school districts have found it difficult to provide certain recommended interventions for particular children—such as one-to-one instruction—because of their high cost. The National Academies’ National Research Council reported that schools, faced with high costs for some of the recommended treatments for their students with autism, have tried to find a way of providing services they believe are appropriate but that will not overburden their budgets. The National Research Council concluded that school districts need financial help to provide appropriate services for children with autism, and the council recommended that states develop strategies for coordinating state education agencies with other state agencies to fund interventions for children with autism.

Education also supports transition services that are designed to provide skills training, job training, and job placement to young adults with disabilities who are in transition from high school to postsecondary education or employment. When a child receiving special education services under IDEA reaches age 16, the IEP must identify the transition services needed to reach the post-high school goals set in the IEP. Education supports state vocational rehabilitation agencies that can help individuals with disabilities prepare for and engage in gainful employment. State vocational rehabilitation programs must develop individualized plans for employment for students eligible for vocational rehabilitation services before they leave school. Furthermore, for a student with a disability who is receiving special education services, this plan must be coordinated with the goals, objectives, and services in the student’s IEP.

Children with disabilities, including autism, may not always receive the transition services they need. For example, under the vocational rehabilitation program, although all people with physical or mental impairments are potentially eligible for services, we previously reported that states may serve only those with the most significant disabilities in times of funding constraint, and that according to Education officials, a number of states have waiting lists for vocational rehabilitation services. We also reported that many local school systems do not have transition coordinators or work preparation programs to adequately plan for student transitions, and that the task of linking schools with adult service providers falls on special education personnel who may not be trained to address the transition needs of young adults with disabilities. In addition, according to representatives of advocacy associations, special education programs may not sufficiently prepare students for life beyond the classroom. For example, although job skills training in schools may be able to help young adults with autism obtain employment, the young adults may not have developed the social or independent living skills, such as the ability to navigate the public transportation system, necessary to keep their jobs.

Education also supports programs to develop and implement evidence- based practices for educating children with autism. Under IDEA, Education administers a discretionary grant program that in fiscal year 2004 made over 40 awards for projects focused on autism and related developmental disabilities. The grant projects currently under way include research on education-based treatment interventions and training for parents and professionals working with children with autism. Education supports six Professional Development in Autism sites across the nation through which school personnel and families are provided training, support, and information on how to use evidence-based practices for students with autism. In addition, Education’s Institute of Education Sciences reported that it will sponsor a competitive grant research program in fiscal year 2007 to develop or test the effectiveness of comprehensive pre-school and school-based interventions that improve the cognitive, communication, academic, social, and behavioral outcomes of children with autism.

Other Federal Programs That Support Autism Services Also Generally Have a Broader Disability Focus, and Experts and Officials Report Autism Services Are Limited

Several federal agencies support services for people with autism through programs that provide services or enhance the delivery of care for people with developmental disabilities. Experts and officials from federal agencies told us there are not enough services—including behavioral therapy, speech therapy, occupational therapy, and supported living services—to meet the needs of people with autism. In addition, experts and federal officials have said that the shortage of professionals trained to serve people with autism makes it difficult for people with this disability to obtain the full range of services they need.

Through programs targeted to people with developmental disabilities, ACF supports services for people with autism and training for professionals who work with this population. The agency supports the following grant programs to help meet the needs of individuals with developmental disabilities: the State Councils on Developmental Disabilities, Projects of National Significance, and State Protection and Advocacy Agencies. (See table 3 for a description of these programs.)

In addition, ACF supports the operation and administration of 65 University Centers for Excellence in Developmental Disabilities Education, Research, and Service. The centers, which receive program funding from other sources, conduct research, disseminate information, and provide interdisciplinary training for medical residents, pediatricians, and other health care professionals on treating autism and other developmental disabilities.

HRSA supports two programs to train professionals who work with people with developmental disabilities, including autism. HRSA’s Leadership Education in Neurodevelopmental Disabilities program has 35 centers across the nation that focus on training professionals with a variety of professional backgrounds—such as psychologists, pediatricians, and speech-language pathologists—to improve health care for children with developmental disabilities. HRSA also supports the Developmental- Behavioral Pediatrics Training Program to enhance the behavioral, psychosocial, and developmental aspects of general pediatric care. The program consists of 9 centers located in institutions of higher learning, which support fellows in behavioral pediatrics to help prepare them for leadership roles as teachers, researchers, and clinicians.

CMS supports services to meet the needs of people with autism through Medicaid autism and developmental disability programs. These programs operate under CMS’s home and community-based services waivers that allow individuals who would otherwise need long-term care in nursing homes or other institutional settings to receive coverage for long-term care services in community settings. States determine the types of long-term care services they wish to offer under the waiver. For example, states with autism or developmental disabilities waiver programs may cover the costs for specific disability-related services—such as speech therapy, occupational therapy, and respite care—when those services are not otherwise covered under the state’s Medicaid program. States’ autism waiver programs generally offer the same services as their developmental disability waiver programs; the primary difference is that the autism waiver program may offer early intervention behavioral therapies targeted to young children. According to CMS, as of April 2006, 44 states and the District of Columbia had developmental disability waiver programs, and 3 states had autism waiver programs. In the 2 states operating both waiver programs, a person eligible for the state’s autism waiver program could also be eligible for the state’s developmental disability waiver program. However, in these states, a person can receive services under only one waiver program at a time.

Although Medicaid autism and developmental disability waiver programs support the provision of treatment services for people with autism, many people with autism may be unable to obtain services through these programs because they do not meet the programs’ eligibility rules or because states limit enrollment. To be eligible to receive services under the programs, a person would need long-term care in a nursing home or other institutional setting in the absence of the waiver. As a result, people at the higher functioning end of the autism spectrum, including people with Asperger syndrome, are generally not eligible to receive services under the waiver programs. Furthermore, states are allowed to cap the number of people who can enroll in these programs. In some states, enrollment waiting lists for the waiver programs are several years long. Because some autism interventions have been found to be effective only when applied by a certain early age, children with autism who remain on waiting lists for several years may exceed the eligible age range for the intervention before they can enroll in the waiver program. Officials in one state told us the average length of time a person is on the waiting list for either its autism or developmental disability waiver program exceeds 5 years. This state requires that a specific intensive one-on-one intervention be covered under its autism waiver program; however, state officials told us that in practice no child has ever received the service through the Medicaid waiver program. Because a child must receive the intervention by age six, and children are not usually diagnosed with autism until age three, by the time they come off the waiting list, they are no longer eligible for the intervention.

CMS has another waiver program that can assist people with autism and other disabilities. According to CMS, as of April 2006, 12 states were operating Independence Plus waiver programs. These waiver programs, which allow participant input, support services that teach skills, such as planning, budgeting, and decision making. The Independence Plus waiver programs also support home and community-based services—such as respite care and transportation—for people with disabilities, including developmental disabilities.

Interagency Autism Coordinating Committee Enhances Communication among Federal Agencies, but Coordination Is Limited

The primary vehicle for coordinating federal agencies’ autism activities is the IACC. In accordance with the Children’s Health Act, NIH in 2001 established the IACC to enhance effective collaboration within HHS and among other agencies conducting autism-related activities and to improve constructive dialogue with members of the public and interest groups. NIMH was designated the lead agency for the IACC, which includes representation from other NIH institutes, other HHS agencies, and Education. The IACC meets semiannually and has facilitated the exchange of information on autism activities among member agencies by providing a forum for federal agencies to share information on existing and planned autism-related activities and to obtain comments from participating agencies and the public. For example, CDC officials told us they shared information with the IACC from a series of listening sessions the agency conducted with parents, health care professionals, and others, because the concerns raised at the sessions touched on issues related to research or providing services that were outside of CDC’s purview. Officials from member agencies told us that the interagency committee has increased communication; improved planning; and helped agencies avoid duplicative research, such as on environmental risk factors for autism.

The IACC has enhanced federal coordination in the development of research priorities and of recommendations for improving service delivery. In 2003, the IACC produced a research matrix (see app. III), which NIH officials view as a comprehensive list of autism research goals. NIH officials told us the agency’s institutes have used the matrix to guide their funding of autism-related activities and programs. For example, NIH has indicated that the focus of its planned Autism Centers of Excellence will relate to the research matrix goals of determining the causes of and best treatments for autism. NIH officials told us that the matrix is not a static document and that it will need to be updated to reflect goals that have been achieved and new priorities. HHS officials told us that a portion of the IACC’s November 2006 meeting will be devoted to updating the matrix’s goals.

In addition to focusing on research, the IACC has also supported efforts related to early identification and screening for autism and to the provision of services for people with autism. The IACC established a screening subcommittee to develop a screening campaign and work on ways to link families to referrals for services. One of the accomplishments of the subcommittee was CDC’s autism awareness campaign: “Learn the Signs. Act Early.” This campaign is aimed at encouraging awareness of early childhood development, including warning signs of autism and other developmental disabilities. Through the campaign, CDC disseminates information, provides educational materials, and supports online resources to inform parents and health care providers of the importance of early screening and intervention for children with autism and other developmental disabilities. In addition, because of its concern that services for people with autism are fragmented, poorly coordinated, and not always available, the IACC established a services subcommittee— currently cochaired by officials from Education and the Autism Society of America—to consider the service needs of people with autism. The services subcommittee defined its mission as identifying the service needs of individuals with autism and their families, describing current federal efforts to meet those needs, identifying challenges to meeting those needs, and making recommendations for action.

In July 2004, the services subcommittee convened a panel of autism experts to develop an action plan for enhancing existing service systems, expanding services for individuals with autism and their families, and coordinating services across systems. This document—the Autism Spectrum Disorders Roadmap—was presented to the IACC in May 2005. The roadmap provided a synthesis of issues and challenges related to serving people with autism and a set of performance measures and recommendations for improving services. A subcommittee member told us that the subcommittee’s vision was that each agency could begin to implement the recommendations without much difficulty. (See app. IV for additional information on the roadmap.)

The services subcommittee also presented a report to the IACC that identified agencies’ existing activities related to the recommendations in the roadmap. The report also identified recommendations that could be implemented in the short term and assigned lead responsibility to specific agencies for implementing them. Some agencies have begun to address the short-term recommendations. For example, in light of the goal of improving access to comprehensive information about autism services, the Agency for Healthcare Research and Quality is planning to develop a single autism Web site to consolidate all government information for parents and service providers. An agency official told us that the agency is exploring the possibility of linking information from Education and other agencies with HHS’s existing autism Web site. In addition, to respond to the recommendation related to identifying Medicaid waiver programs for people with autism, a CMS official told us that the agency is working on a report that will discuss promising practices supported by autism waiver programs in two states and expects to post the report on its promising practices Web site by September 2006.

Although some federal agencies have begun to address some of the roadmap’s recommendations, the document lacks the specificity that would help a state or federal agency easily implement all of its findings. For example, the roadmap indicates there is a lack of adequately trained autism providers, but does not specify which types of providers are needed. The roadmap also indicates there is a lack of understanding and communication regarding autism, but does not specify the type of training and technical assistance professionals and families of people with autism need.

While the IACC has created a forum for sharing information and identifying areas to pursue to improve research and services, officials told us that there is limited coordination of federal agencies’ autism-related activities. For example, although officials from IACC member agencies told us about programs their agencies had under way related to autism, very few of those programs represented coordinated efforts across agencies. Officials from federal agencies and representatives of advocacy associations told us that federal coordination is hindered because no agency on the IACC actively monitors federal agencies’ responses to recommendations to ensure that tasks are completed. In addition, because it is simply a coordinating body, the IACC does not have authority to ensure that agencies follow up on committee or subcommittee recommendations. Moreover, no federal agency perceives itself as having lead responsibility for addressing the service needs of adults with autism or services for children beyond education.

Conclusions

NIH and CDC have increased their funding to support autism activities and have pursued many avenues of research, including those specified in the Children’s Health Act and in the IACC’s research matrix. In addition to developing research goals for its member agencies, the IACC has provided a forum for federal agencies to inform each other and the public about their current autism activities and has recommended approaches for improving services for people with autism. However, coordination among agencies in carrying out their autism activities remains limited. Furthermore, successful implementation of IACC research goals and services recommendations will depend on individual agencies taking the initiative to develop new programs or tailor existing ones and coordinating with other public and private agencies as appropriate. This is especially critical for improving the availability and delivery of services, because although ACF and Education have primary responsibility for federal programs that support education services for children with autism, no single agency has a lead role in supporting the delivery of other types of services for people with autism.

The information on the characteristics and prevalence of autism being tracked through CDC’s surveillance activities could also help federal agencies better develop or tailor services for people with autism. However, the current limitation on CDC’s ability to use information in education records has presented challenges to the agency’s ability to report accurate and complete data. Conducting autism surveillance and protecting the privacy of sensitive information in education records are both important goals. The Congress required HHS and Education to jointly develop a report describing the challenges to CDC’s obtaining education records for autism surveillance and identifying options for overcoming them. As of June 2006, HHS and Education had not completed this report, which could help the Congress determine how to accommodate both of these goals. Resolving the challenges facing CDC would facilitate continued progress toward identifying the characteristics and prevalence of autism. These efforts are essential for advancing knowledge about autism diagnosis, treatment, and services, which could help improve the lives of people with autism and their families.

Recommendation for Executive Action

We recommend that to ensure continued progress toward the development of accurate and comparable data on autism characteristics and prevalence and to provide the information the Congress required on CDC’s surveillance activities, the Secretary of Health and Human Services and the Secretary of Education work together to promptly identify options for overcoming challenges to CDC’s ability to use education records for surveillance of autism.

Agency Comments and Our Evaluation

We provided a draft of this report to HHS and Education for comment. (HHS’s and Education’s comments are reprinted in appendixes V and VI, respectively.) In addition to general comments, HHS and Education also provided technical comments, and we revised our report to reflect the comments where appropriate.

HHS and Education did not agree with the report’s recommendation. In its comments, HHS said that the recommendation suggested that HHS and Education had not worked together to identify options that would enable CDC to continue to obtain and use education records for autism surveillance. Although the draft report did not indicate that the departments had not worked together, we added a statement that HHS and Education have had discussions about this issue. However, as of June 2006, HHS and Education had not agreed on options or submitted the report due to the Congress in June 2005 describing these options, as required by the Birth Defects and Developmental Disabilities Prevention Act of 2003. Education expressed concern in its comments that the recommendation did not take into account the privacy protections provided by FERPA. We added language to the final report to acknowledge that autism surveillance and protecting the privacy of information in education records are both important goals. We did not modify our recommendation because we continue to believe it is important for Education and HHS, consistent with the Birth Defects and Developmental Disabilities Prevention Act of 2003, to work together to promptly identify options for overcoming the challenges CDC faces in using education records so that the Congress can make an informed decision on how to accommodate both of these goals.

Education’s comments included several points about the draft report’s treatment of FERPA’s privacy protections. Education said that protecting the privacy of sensitive information in education records should not be viewed as a challenge to overcome, but as an important public safeguard. Our use of the word challenge does not negate the importance of protecting the privacy of education records. We have used this word because the Birth Defects and Developmental Disabilities Prevention Act of 2003 specifically required Education and HHS to describe the challenges to CDC’s obtaining education records and identify methods for overcoming them. In its description of the act’s discussion of methods for overcoming these challenges, Education emphasized the methods related to increasing parental consent and said that this was the Congress’ primary concern. However, the act specifically instructed the departments to provide justifications for any recommendations to change existing statutory authority, including FERPA, indicating that the Congress contemplated possible changes to current privacy protections.

Education stated that it is willing to discuss with CDC options related to CDC’s use of information in education records for autism surveillance. In its response to the draft report’s discussion of CDC’s description of possible approaches that would allow it to continue using personally identifiable education records for surveillance, Education noted that FERPA does not permit schools to use a passive consent model for the disclosure of education records. We revised the report to clarify that passive consent systems are not authorized under FERPA.

The draft report stated that Education sent letters to two states’ education agencies, in response to their inquiries, informing them of Education’s reinterpretation of FERPA, but had not communicated this change to other states’ education agencies. Education commented that this was inaccurate and said that it had posted these letters on its Web site and that it provides training on FERPA to education officials. We revised the report to reflect this information.

Regarding the draft report’s discussion of services for children with autism, Education expressed concern that the draft report implied that there was a widespread problem of schools violating IDEA in their provision of services to children with disabilities, including autism. We did not intend to imply this, and we revised the report to emphasize that schools face challenges in providing such services.

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If you or your staff have any questions about this report, please contact me at (202) 512-7101 or bascettac@gao.gov. Contact points for our Offices of Congressional Relations and Public Affairs may be found on the last page of this report. GAO staff who made major contributions to this report are listed in appendix VII.

Appendix I: Scope and Methodology

To determine the autism-related activities and programs that the Department of Health and Human Services’ (HHS) National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) have under way, we collected documents from and interviewed agency officials about their fiscal year 2005 research and surveillance activities. To help confirm that we had a complete list of agencies’ programs, we compared the information agency officials gave us with programs in the online Catalog of Federal Domestic Assistance and the Computer Retrieval of Information on Scientific Projects. We identified in the Children’s Health Act of 2000 the specific autism-related mandates and authorizations for NIH and CDC and reviewed agency-provided lists of activities and interviewed agency officials to determine which activities the agencies had conducted to respond to the act. We also compared the agencies’ autism- related programs to goals developed by the Interagency Autism Coordinating Committee (IACC). To determine NIH’s and CDC’s funding of activities related to autism, we asked agency officials to provide funding for autism, by institute and center, for fiscal year 2000—one fiscal year before passage of the Children’s Health Act—through fiscal year 2005. The funding data we obtained generally represented obligated funds—funds the agencies had legally committed to spend but might not yet have expended. In addition, NIH’s data represent the agency’s estimated funding of autism research. We did not verify the accuracy of these data; however, we interviewed agency officials knowledgeable about the data, and we determined that the data were sufficiently reliable for the purposes of this report. We relied primarily on agency-reported program descriptions and funding amounts; we did not independently verify the use of grant money by recipients and therefore could not determine any causal link between enactment of the Children’s Health Act and changes in funding for autism-related projects.

To identify the programs federal agencies have under way to support services for people with autism, we interviewed officials from other HHS agencies—the Administration for Children and Families, Agency for Healthcare Research and Quality, Centers for Medicare & Medicaid Services, Food and Drug Administration, Health Resources and Services Administration, Office on Disability, and Substance Abuse and Mental Health Services Administration. We also interviewed officials from the Environmental Protection Agency and the Department of Education’s Family Policy Compliance Office, Institute of Education Sciences, Office of Elementary and Secondary Education, and Office of Special Education and Rehabilitative Services.

To determine how federal departments and agencies coordinate their autism activities and programs, we reviewed minutes and reports of interagency meetings and interviewed federal agency officials. We also attended the November 2005 meeting of the IACC to observe how member agencies shared information and coordinated programs and activities. In addition, we interviewed federal agency officials on the challenges of and potential areas for improvement in federal agencies’ coordination efforts.

It was beyond the scope of this engagement to identify all federal programs that provide services to people with autism and all coordination activities among federal agencies and departments. We focused on programs designed to meet the specific needs of people with autism or developmental disabilities or that have specific program goals targeted to this population. It was also beyond our scope to evaluate the quality of the activities and programs we described. However, we reviewed the relevant literature and interviewed experts in autism and representatives from several professional and advocacy associations to identify concerns about federal agencies’ current activities and coordination efforts and potential areas for improvement. Specifically, we interviewed officials from the American Academy of Pediatrics, American Psychiatric Association, American Speech-Language-Hearing Association, National Association of State Directors of Developmental Disabilities Services, National Association of State Directors of Special Education, and National Association of State Medicaid Directors. We also interviewed representatives from two advocacy associations that focus on autism research and representatives from two advocacy associations with a broad focus on autism research, services, and public awareness. We conducted our work from August 2005 through July 2006 in accordance with generally accepted government auditing standards.

Appendix II: Selected NIH Autism-Related Activities

Appendix III: Interagency Autism Coordinating Committee Research Goals

Appendix III: Interagency Autism Coordinating Committee Research Goals Define and plan Autism Phenome Project and study existing data to begin to characterize the autism phenome Establish resources for genotype and phenotype studies (e.g., genetic repository)

Develop nonbrain biomarkers (e.g., blood levels of specific molecules) to provide the biological characteristics of autism Implement multisite longitudinal study of subsequent pregnancies and infant siblings of children with autism to identify risk factors, broader phenotype, and early characteristics of autism Identify genes that increase susceptibility for autism and animal models of autism for further study of phenotypic characteristics of autism Expand, disseminate, and implement effective interventions, including transition services, to improve outcomes in school and community settings throughout a person with autism’s life span Develop, evaluate, implement, and disseminate innovative intervention strategies, including transition services, to improve outcomes in school and community settings throughout a person with autism’s life span Continue formulating, evaluating, and implementing appropriate and effective intervention strategies incorporating research-based findings to improve outcomes in school and community settings throughout the life span of a person with autism Ensure appropriate and effective interventions are widely recognized and broadly implemented in school and community settings throughout the life span of a person with autism Implement first-generation, intensive community-based prevalence studies with clinical evaluations; the studies will produce initial data for detecting changes in prevalence of autism Plan and implement second-generation intensive community-based prevalence studies with clinical evaluations Develop a randomized clinical trial for evaluating the effectiveness of early behavioral interventions and factors predicting response to interventions Implement a multisite, randomized clinical trial to identify moderators and effective components of early intervention treatments (e.g., dose, intensity, mode of delivery, age of onset)

Appendix IV: Interagency Autism Coordinating Committee Services Roadmap Goals and Recommendations

All people with autism and their families will have a well-established, trusting, and mutually respectful relationship with a health care professional (medical home) who listens and responds to concerns and who acts as an equal partner in providing a clearly defined plan of coordinated services.

There will be universal early identification of signs of autism, followed by appropriate referral to a coordinated and comprehensive service system.

Individuals with autism and their families will have ready access to integrated and coordinated health, mental health, education, and social services provided by well qualified autism providers throughout the life span of individuals with autism.

Community-based services will be organized so that individuals with autism and their families can use them easily.

Support family-driven state and community development initiatives to implement creative and effective practices Provide technical assistance to states and communities to implement effective service delivery models Provide a user-friendly Web-based resource for families and providers that includes information on autism (e.g., successful screening models, autism providers)

All individuals with autism will receive the services necessary to make transitions to all aspects of adult life, including health care, work, and independent living.

Public and private financing of autism- related services will be expanded and standardized so people with autism and their families have access to early and continuous screening; comprehensive diagnosis; and needed health care, mental health, education, and social services.

Appendix V: Comments from the Department of Health and Human Services

Appendix VI: Comments from the Department of Education

Appendix VII: GAO Contact and Staff Acknowledgments

Acknowledgments

In addition to the contact named above, Helene F. Toiv, Assistant Director; Jennie Apter; Janina Austin; Julian Klazkin; Robert Lepore; and KaSandra Rogiérs made key contributions to this report.