Federal Autism Activities: Funding for Research Has Increased, but Agencies Need to Resolve Surveillance Challenges
Published: 2006-07-19T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: Autism is a developmental disorder involving communication and social impairment. It has no known cause or cure, and its prevalence is unknown. The Children's Health Act of 2000 required the Department of Health and Human Services (HHS) and HHS agencies to conduct activities related to autism research, surveillance, and coordination. This report provides information on (1) the National Institutes of Health's (NIH) and the Centers for Disease Control and Prevention's (CDC) autism activities and these agencies' funding of autism activities, (2) programs that federal agencies have under way to support services for people with autism and concerns related to providing services, and (3) coordination of federal autism activities.
section_title: What GAO Found
paragraphs: NIH and CDC have undertaken a range of autism activities, and the agencies reported that their funding of autism activities has increased. Many of NIH's activities were developed in response to requirements in the Children's Health Act for NIH to expand, intensify, and coordinate its autism activities. According to estimates from NIH, the agency increased funding for autism from about $51.5 million in fiscal year 2000 to about $101.6 million in fiscal year 2005. CDC supports surveillance activities in certain locations that track the prevalence of autism and other developmental disabilities, and its total funding of autism activities increased from about $2.1 million in fiscal year 2000 to about $16.7 million in fiscal year 2005. CDC's surveillance methodology has relied, in part, on information in student education records, but CDC officials believe that a 2003 change in the Department of Education's (Education) interpretation of relevant federal privacy law has hindered CDC's ability to use this methodology to determine the prevalence of autism. Education stated that the law does not allow CDC to access these records without written parental consent. A 2003 law required HHS and Education to submit a report to the Congress by June 2005 describing ways to overcome the challenges CDC faces in obtaining education records. As of June 2006, CDC and Education had not agreed on options for overcoming these challenges and could not estimate when the report would be completed. Federal agencies support services for people with autism primarily through broader disability programs, and some services may not always be available to meet the needs of this population. Education and HHS's Administration for Children and Families support services for children with autism through education programs for children with disabilities. Other federal agencies support services for people with autism, generally as part of broader programs to provide services or enhance the delivery of health care to people with developmental disabilities. For example, HHS's Centers for Medicare & Medicaid Services supports services to meet the needs of people with autism through Medicaid programs targeted to people with developmental disabilities. However, many people with autism may not be able to obtain services under these Medicaid programs because they do not meet eligibility rules or because states limit enrollment. The primary vehicle for coordinating federal agencies' autism activities is the Interagency Autism Coordinating Committee (IACC), and although it has enhanced communication and coordination among agencies, coordination remains limited. The IACC developed recommendations on how to better serve people with autism and established autism research goals. Agency officials told us that federal coordination is limited, in part because, except for education services, no agency perceives itself as having lead responsibility for supporting services for people with autism.

section_title: Letter
paragraphs: Autism, a complex and pervasive developmental disorder, is characterized  by impairment in communication and social interaction and by repetitive  behavioral patterns. The disorder ranges from a severe form, called  autistic disorder, to a milder form, known as Asperger syndrome. While  the lifelong condition has no known cause or cure, experts generally agree  that early diagnosis and treatment may be the best way to improve  outcomes in later years for people with autism. Because of the complexity  of this disorder, people with autism have diverse needs for an array of  health, mental health, education, and social services. It is not known how  many people in the United States currently have the disorder. However,  the number of children diagnosed with autism has been increasing, and  the Centers for Disease Control and Prevention (CDC) recently reported  that at least 300,000 children had autism in the period of 2003 to 2004.
Several federal agencies are involved in conducting research to identify  the causes and prevalence of autism and effective treatments for the  disorder or in supporting education and other services for people with  autism. The Children’s Health Act of 2000 required the Department of  Health and Human Services (HHS) and agencies within it to conduct  certain activities and programs related to autism research and  surveillance and the coordination of HHS’s autism activities. In  preparation for considering reauthorization of certain provisions of the  Children’s Health Act, and because of the federal role in supporting autism  research, surveillance, and services, you asked us to provide information  on federal activities and programs related to autism. In this report, we  discuss (1) the National Institutes of Health’s (NIH) and CDC’s current  autism research and surveillance activities, including those undertaken in  response to the Children’s Health Act, and these agencies’ funding of  autism activities for fiscal years 2000 through 2005; (2) programs that  federal agencies have under way to support services for people with  autism and concerns related to the provision of services; and   (3) coordination of autism activities and programs among federal  departments and agencies.
To conduct our work, we obtained information from and interviewed  officials at NIH; CDC; other federal agencies—including HHS’s  Administration for Children and Families (ACF), Centers for Medicare &  Medicaid Services (CMS), Health Resources and Services Administration  (HRSA), and Substance Abuse and Mental Health Services Administration  (SAMHSA); and the Department of Education (Education) regarding their  autism activities and the coordination of autism activities among federal  agencies and departments. We also obtained information from NIH and  CDC officials on their funding of autism activities in fiscal years 2000—one  fiscal year before the passage of the Children’s Health Act—through 2005.  The funding data we obtained generally represent 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 they were sufficiently reliable for the purposes of  this report. It was beyond the scope of our work to identify all programs  that provided services to individuals with autism; we focused on programs  designed to meet the specific needs of people with autism or  developmental disabilities or that have a specific program goal targeted to  this population. It was also beyond our scope to evaluate the quality of the  activities and programs we describe. However, we reviewed the relevant  literature and interviewed experts on autism and representatives of  several professional and advocacy associations to obtain their  perspectives on services for people with autism. We conducted our work  from August 2005 through July 2006 in accordance with generally accepted  government auditing standards. (For additional information on our  methodology, see app. I.)
subsections: section_title: Background
paragraphs: 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.
section_title: NIH and CDC Support an Array of Autism Activities and Report That Their Funding of Autism Activities Has Increased
paragraphs: 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.
subsections: section_title: NIH Supports a Wide Array of Research Related to Autism
paragraphs: 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.
section_title: CDC Supports Autism Surveillance, but Faces Challenges in Its Ability to Report Accurate Prevalence Data
paragraphs: 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.
section_title: NIH and CDC Reported That Their Funding of Activities Related to Autism Increased from Fiscal Year 2000 to Fiscal Year 2005
paragraphs: 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.)
section_title: Federal Agencies Support Services for People with Autism Primarily Through Broader Disability Programs, and Some Services May Not Always Be Available
paragraphs: 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.
subsections: section_title: Services for Children with Autism Are Delivered Primarily through Education Programs for Children with Disabilities, and Schools Face Challenges in Providing Services
paragraphs: 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.
section_title: Other Federal Programs That Support Autism Services Also Generally Have a Broader Disability Focus, and Experts and Officials Report Autism Services Are Limited
paragraphs: 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.
section_title: Interagency Autism Coordinating Committee Enhances Communication among Federal Agencies, but Coordination Is Limited
paragraphs: 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.
section_title: Conclusions
paragraphs: 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.
section_title: Recommendation for Executive Action
paragraphs: 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.
section_title: Agency Comments and Our Evaluation
paragraphs: 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.
As arranged with your office, unless you publicly announce the contents of  this report earlier, we plan no further distribution of it until 30 days after  its issue date. At that time, we will send copies of this report to the  Secretary of Health and Human Services, the Secretary of Education, the  Director of the Centers for Disease Control and Prevention, the Director of  the National Institutes of Health, the Administrator of the Centers for  Medicare & Medicaid Services, the Administrator of the Health Resources  and Services Administration, the Administrator of the Substance Abuse  and Mental Health Services Administration, and other interested parties.  We will also make copies available to others upon request. In addition, the  report will be available at no charge on GAO’s Web site at  http://www.gao.gov.
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.
section_title: Appendix I: Scope and Methodology
paragraphs: 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.
section_title: Appendix II: Selected NIH Autism-Related Activities
section_title: Appendix III: Interagency Autism Coordinating Committee Research Goals
paragraphs: 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)
section_title: Appendix IV: Interagency Autism Coordinating Committee Services Roadmap Goals and Recommendations
subsections: section_title: 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.
paragraphs: 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.
section_title: Appendix V: Comments from the Department of Health and Human Services
section_title: Appendix VI: Comments from the Department of Education
section_title: Appendix VII: GAO Contact and Staff Acknowledgments
subsections: section_title: Acknowledgments
paragraphs: 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.