Federal Autism Activities
Funding for Research Has Increased, but Agencies Need to Resolve Surveillance Challenges Gao ID: GAO-06-700 July 19, 2006Autism 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.
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.
RecommendationsOur recommendations from this work are listed below with a Contact for more information. Status will change from "In process" to "Open," "Closed - implemented," or "Closed - not implemented" based on our follow up work.
Director: Team: Phone:GAO-06-700, Federal Autism Activities: Funding for Research Has Increased, but Agencies Need to Resolve Surveillance Challenges
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Report to the Majority Leader, U.S. Senate:
United States Government Accountability Office:
GAO:
July 2006:
Federal Autism Activities:
Funding for Research Has Increased, but Agencies Need to Resolve
Surveillance Challenges:
Federal Autism Activities:
GAO-06-700:
GAO Highlights:
Highlights of GAO-06-700, a report to the Majority Leader, U.S. Senate
Why GAO Did This Study:
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.
What GAO Found:
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.
What GAO Recommends:
GAO recommends that the Secretaries of HHS and Education work together
to promptly identify options for overcoming challenges to CDC‘s ability
to use education records for autism surveillance. In commenting on a
draft of this report, HHS and Education did not agree with the
recommendation. HHS said the recommendation implied that the
departments have not worked together to identify options. Education
expressed concern that the recommendation did not reflect federal
privacy protections. GAO revised the report to reflect these concerns
but continues to believe the recommendation is warranted.
[Hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-06-700].
To view the full product, including the scope and methodology, click on
the link above. For more information, contact Cynthia A. Bascetta at
(202) 512-7101 or bascettac@gao.gov.
[End of Section]
Contents:
Letter:
Results in Brief:
Background:
NIH and CDC Support an Array of Autism Activities and Report That Their
Funding of Autism Activities Has Increased:
Federal Agencies Support Services for People with Autism Primarily
Through Broader Disability Programs, and Some Services May Not Always
Be Available:
Interagency Autism Coordinating Committee Enhances Communication among
Federal Agencies, but Coordination Is Limited:
Conclusions:
Recommendation for Executive Action:
Agency Comments and Our Evaluation:
Appendix I: Scope and Methodology:
Appendix II: Selected NIH Autism-Related Activities:
Appendix III: Interagency Autism Coordinating Committee Research Goals:
Appendix IV; Interagency Autism Coordinating Committee Services Roadmap
Goals and Recommendations:
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:
Tables:
Table 1: NIH's Estimated Funding of Autism Activities, by Institute/
Center, Fiscal Years 2000-2005:
Table 2: CDC's Funding of Autism Activities, Fiscal Years 2000-2005:
Table 3: ACF Programs That Support Services for People with Autism and
Other Disabilities:
Abbreviations:
ACF: Administration for Children and Families:
CDC: Centers for Disease Control and Prevention:
CMS: Centers for Medicare & Medicaid Services:
CPEA: Collaborative Programs of Excellence in Autism:
FERPA: Family Educational Rights and Privacy Act of 1974:
HHS: Department of Health and Human Services:
HRSA: Health Resources and Services Administration:
IACC: Interagency Autism Coordinating Committee:
IDEA: Individuals with Disabilities Education Act:
IEP: individualized education program:
NIH: National Institutes of Health:
NIMH: National Institute of Mental Health:
SAMHSA: Substance Abuse and Mental Health Services Administration:
STAART: Studies to Advance Autism Research and Treatment:
United States Government Accountability Office:
Washington, DC 20548:
July 19, 2006:
The Honorable William H. Frist, M.D.
Majority Leader:
United States Senate:
Dear Senator Frist:
Autism, a complex and pervasive developmental disorder, is
characterized by impairment in communication and social interaction and
by repetitive behavioral patterns.[Footnote 1] 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.[Footnote 2]
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[Footnote 3] and the coordination of HHS's autism
activities.[Footnote 4] 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.)
Results in Brief:
NIH and CDC have undertaken an array of autism research and
surveillance activities, and the agencies reported that their funding
of autism activities increased since passage of the Children's Health
Act. 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 activities related to autism research. For example,
NIH developed a network of research centers to conduct research on the
causes, diagnosis, early detection, and treatment of autism. According
to estimates from NIH officials, the agency increased funding of autism
activities from about $51.5 million in fiscal year 2000 to about $101.6
million in fiscal year 2005. CDC supports surveillance programs that
track the characteristics and prevalence of autism. CDC's total funding
of autism activities increased from about $2.1 million in fiscal year
2000 to about $16.7 million in fiscal year 2005, according to CDC. Most
of CDC's surveillance programs have relied, in part, on collecting
information from student education records to obtain a complete and
unduplicated count of the number of children with autism. However, CDC
officials believe that a 2003 change in Education's interpretation of
the federal law governing the privacy of education records--the Family
Educational Rights and Privacy Act of 1974 (FERPA)--has hindered CDC's
ability to continue using this methodology. Education officials have
stated that FERPA requires CDC to obtain written parental consent to
gain access to personally identifiable education records, and CDC does
not believe this is an optimal research method because it is likely to
result in incomplete data. A 2003 law required HHS and Education to
submit a report to the Congress by June 2005 concerning CDC's autism
and developmental disabilities surveillance activities, including
descriptions of the challenges CDC faces in obtaining education records
and options for overcoming these challenges. As of June 2006, CDC and
Education officials had not agreed on options for overcoming the
challenges CDC faces in using education records, and they could not
estimate when the report would be ready to submit.
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 services for children with autism through
education programs for children with disabilities. However, 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. CMS and HRSA also 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, CMS supports community-based services to
meet the needs of people with autism through Medicaid programs targeted
to people with developmental disabilities. However, many people with
autism may be unable to obtain services through these Medicaid programs
because they do not meet the programs' 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 federal
agencies, coordination remains limited. Federal officials from member
agencies told us that the IACC improved communication and planning,
identified ways to improve research and services, and helped agencies
to avoid duplicative research efforts. For example, the IACC produced a
research matrix that identifies goals for autism research and an action
plan that describes challenges to serving people with autism and
presents options for improving care. However, the IACC services action
plan lacks the specificity that would help a state or federal agency to
easily implement its recommendations. For example, the plan indicates
there is a lack of adequately trained autism providers, but does not
specify which types of providers are needed. In addition, 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. Furthermore, agency
officials told us that federal coordination is hindered because no
federal agency perceives itself as having lead responsibility for
addressing the service needs of adults with autism or services for
children beyond education.
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,
we are recommending that 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
autism surveillance.
In commenting on a draft of this report, HHS and Education did not
agree with the report's recommendation. 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; we added information to our
final report to indicate that they have had discussions about this
issue. Education expressed concern that the recommendation did not take
into account FERPA's privacy protections. Although the draft report
described the privacy rights afforded 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 to work together to
promptly identify options for overcoming the challenges CDC faces in
using education records to conduct surveillance.
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.[Footnote
5] 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[Footnote 6] and childhood disintegrative disorder.[Footnote 7]
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),[Footnote 8] 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,[Footnote 9]
and the agency has reported prevalence rates for children in two
communities.[Footnote 10] These rates were 3.4 and 6.7 per 1,000
children and were higher than previously reported prevalence
rates.[Footnote 11] 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.[Footnote 12] 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.[Footnote 13]
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.[Footnote 14]
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,[Footnote 15]
and the Studies to Advance Autism Research and Treatment (STAART),
consisting of eight centers[Footnote 16] 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.[Footnote 17] 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.[Footnote 18] 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.[Footnote 19] 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.[Footnote 20] In addition
to engaging in surveillance, these sites conduct research to determine
the causes of and risk factors for autism.[Footnote 21] 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.[Footnote 22] 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.[Footnote 23] 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.[Footnote 24] 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.[Footnote 25] 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[Footnote 26] 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;[Footnote 27] 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[Footnote 28] by June 2005
concerning CDC's autism and developmental disabilities surveillance
activities, including a description of challenges to CDC's obtaining
education records.[Footnote 29] 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.
Table 1: NIH's Estimated Funding of Autism Activities, by Institute/
Center, Fiscal Years 2000-2005:
Dollars in thousands.
National Institute of Mental Health;
Fiscal year: 2000: $22,629;
Fiscal year: 2001: $24,816;
Fiscal year: 2002: $36,279;
Fiscal year: 2003: $51,096;
Fiscal year: 2004: $54,102[A];
Fiscal year: 2005: $58,406.
National Institute of Child Health and Human Development;
Fiscal year: 2000: 15,409;
Fiscal year: 2001: 15,803;
Fiscal year: 2002: 19,889;
Fiscal year: 2003: 21,852;
Fiscal year: 2004: 21,530;
Fiscal year: 2005: 19,461.
National Institute of Neurological Disorders and Stroke;
Fiscal year: 2000: 5,321;
Fiscal year: 2001: 6,625;
Fiscal year: 2002: 8,451;
Fiscal year: 2003: 12,888;
Fiscal year: 2004: 12,242;
Fiscal year: 2005: 13,826.
National Institute on Deafness and Other Communication Disorders;
Fiscal year: 2000: 1,782;
Fiscal year: 2001: 1,857;
Fiscal year: 2002: 2,470;
Fiscal year: 2003: 2,923;
Fiscal year: 2004: 2,751;
Fiscal year: 2005: 4,129.
National Institute of Environmental Health Sciences;
Fiscal year: 2000: [B];
Fiscal year: 2001: 972;
Fiscal year: 2002: 1,025;
Fiscal year: 2003: 1,333;
Fiscal year: 2004: 1,480;
Fiscal year: 2005: 1,424.
National Center for Research Resources;
Fiscal year: 2000: 1,338;
Fiscal year: 2001: 1,924;
Fiscal year: 2002: 1,499;
Fiscal year: 2003: 1,014;
Fiscal year: 2004: 1,049;
Fiscal year: 2005: 920.
National Human Genome Research Institute;
Fiscal year: 2000: 4,505;
Fiscal year: 2001: 2,857;
Fiscal year: 2002: 3,458;
Fiscal year: 2003: 1,831;
Fiscal year: 2004: 440;
Fiscal year: 2005: 554.
National Institute on Aging;
Fiscal year: 2000: 380;
Fiscal year: 2001: 311;
Fiscal year: 2002: 400;
Fiscal year: 2003: 389;
Fiscal year: 2004: 332;
Fiscal year: 2005: 341.
National Institute of Nursing Research;
Fiscal year: 2000: 110;
Fiscal year: 2001: 320;
Fiscal year: 2002: 327;
Fiscal year: 2003: [B];
Fiscal year: 2004: [B];
Fiscal year: 2005: 288.
Roadmap for Medical Research[C];
Fiscal year: 2000: [B];
Fiscal year: 2001: [B];
Fiscal year: 2002: [B];
Fiscal year: 2003: [B];
Fiscal year: 2004: 296;
Fiscal year: 2005: 2,283.
Total;
Fiscal year: 2000: $51,474;
Fiscal year: 2001: $55,485;
Fiscal year: 2002: $73,798;
Fiscal year: 2003: $93,326;
Fiscal year: 2004: $94,222;
Fiscal year: 2005: $101,632.
Source: GAO analysis of NIH data.
Notes: The funding data in this table represent obligated funds--funds
NIH had legally committed to spend but might not yet have expended--and
represent NIH's estimated funding of autism research. 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
NIH, the other institutes prorate the research dollars, estimating a
percentage of the project that focuses on autism. The table includes
the NIH institutes and centers that NIH reported to us as funding
autism research in fiscal year 2005. According to NIH, the National
Center for Complementary and Alternative Medicine funded a relatively
small amount of autism research in fiscal years 2000 and 2001 and the
National Institute on Alcohol Abuse and Alcoholism similarly funded a
relatively small amount of autism research in fiscal years 2001 through
2003; neither funded autism research in fiscal year 2005.
[A] This amount differs from the amount NIH has used when publicly
reporting its total funding of autism activities. It has used the
amount $59,708,000 for NIMH's funding of autism for fiscal year 2004.
NIMH officials told us that this figure was incorrect because of a
clerical error.
[B] NIH did not report autism funding for the institute in this year.
[C] In addition to funding research for autism through institutes and
centers, NIH funded research for autism through its Roadmap for Medical
Research. The goal of the roadmap is to identify research opportunities
and gaps in biomedical research that no single institute at NIH can
undertake alone and that NIH officials believe the agency as a whole
must address.
[End of table]
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.[Footnote 30] 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.)
Table 2: CDC's Funding of Autism Activities, Fiscal Years 2000-2005:
Dollars in thousands.
Center/office: National Center on Birth Defects and Developmental
Disabilities[A];
Fiscal year: 2000: $1,140;
Fiscal year: 2001: $5,500;
Fiscal year: 2002: $8,443;
Fiscal year: 2003: $10,811;
Fiscal year: 2004: $13,242;
Fiscal year: 2005: $14,873.
Center/office: National Immunization Program;
Fiscal year: 2000: 1,000;
Fiscal year: 2001: 1,000;
Fiscal year: 2002: 2,749;
Fiscal year: 2003: 3,298;
Fiscal year: 2004: 3,592;
Fiscal year: 2005: 370.
Center/office: National Center for Infectious Diseases;
Fiscal year: 2000: 0;
Fiscal year: 2001: 0;
Fiscal year: 2002: 0;
Fiscal year: 2003: 0;
Fiscal year: 2004: 15;
Fiscal year: 2005: 15.
Center/office: National Center for Environmental Health/Agency for
Toxic Substances and Disease Registry;
Fiscal year: 2000: 0;
Fiscal year: 2001: 20;
Fiscal year: 2002: 25;
Fiscal year: 2003: 30;
Fiscal year: 2004: 5;
Fiscal year: 2005: 113.
Center/office: Office of Public Health Research;
Fiscal year: 2000: 0;
Fiscal year: 2001: 0;
Fiscal year: 2002: 0;
Fiscal year: 2003: 0;
Fiscal year: 2004: 600;
Fiscal year: 2005: 600.
Center/office: Other[B];
Fiscal year: 2000: 0;
Fiscal year: 2001: 1,234;
Fiscal year: 2002: 0;
Fiscal year: 2003: 248;
Fiscal year: 2004: 695;
Fiscal year: 2005: 744.
Center/office: Total;
Fiscal year: 2000: $2,140;
Fiscal year: 2001: $7,754;
Fiscal year: 2002: $11,217;
Fiscal year: 2003: $14,387;
Fiscal year: 2004: $18,149;
Fiscal year: 2005: $16,715.
Source: GAO analysis of CDC data.
Notes: These funding amounts include CDC's funding of autism and
developmental disabilities surveillance activities and of research to
determine the causes and characteristics of autism. 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. The funding data
in this table generally represent obligated funds--funds CDC had
legally committed to spend but might not yet have expended. Dollars are
rounded to the nearest thousand.
[A] The funding for this center represents appropriated amounts that
CDC allocated to autism activities.
[B] According to CDC officials, these funds were awarded as grants to
organizations listed in conference reports accompanying appropriations
legislation, and the grants were awarded under the authority of the
Public Health Service Act.
[End of table]
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,[Footnote 31] 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.[Footnote 32] 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,[Footnote 33] 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.[Footnote 34] Beginning at age 3 and generally through age
21,[Footnote 35] 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.[Footnote 36] 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.[Footnote 37] 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.[Footnote 38] 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.[Footnote 39]
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.[Footnote 40] State vocational rehabilitation
programs must develop individualized plans for employment for students
eligible for vocational rehabilitation services before they leave
school.[Footnote 41] 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.[Footnote 42] 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.[Footnote 43] 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.)
Table 3: ACF Programs That Support Services for People with Autism and
Other Disabilities:
Program: State Councils on Developmental Disabilities;
Purpose: To increase the independence, productivity, inclusion, and
integration of people with developmental disabilities in their
community;
Services/ activities: Supports training and education of local service
providers and policymakers on the needs of individuals with
developmental disabilities.
Program: Projects of National Significance;
Purpose: To promote independence, productivity, inclusion, and
community integration for people with developmental disabilities;
Services/activities: Supports projects that seek to improve quality of
life in the community for people with disabilities, such as projects
that provide career development programs for people with developmental
disabilities.
Program: State Protection and Advocacy Agencies;
Purpose: To protect the legal and human rights of people with
developmental disabilities;
Services/activities: Supports services that provide legal help for
people with developmental disabilities and their families.
Source: GAO analysis of ACF documents.
[End of table]
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.[Footnote 44] 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.[Footnote 45]
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[Footnote 46]--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.[Footnote 47] 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.[Footnote 48] 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,[Footnote 49] 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[Footnote 50]--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.[Footnote 51] 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[Footnote 52] 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.
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 [Hyperlink,
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.
Sincerely yours,
Signed by:
Cynthia A. Bascetta:
Director, Health Care:
[End of section]
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.
[End of section]
Appendix II: Selected NIH Autism-Related Activities:
Activity: Autism Genetics Exchange;
Description: Part of the National Institute of Mental Health's Human
Genetics Initiative that makes genetic resources and biomaterials
available to autism researchers.
Activity: Brain and Tissue Bank for Developmental Disorders;
Description: Repositories at the University of Maryland at Baltimore
and the University of Miami School of Medicine that collect, store, and
distribute brains and other tissues for research dedicated to improving
the knowledge, care, and treatment of people with developmental
disorders, including autism.
Activity: Centers for Children's Environmental Health and Disease
Prevention Research;
Description: A collaboration with the Environmental Protection Agency
to examine the effect of environmental exposures on children's health
through a multidisciplinary research approach that includes basic,
applied, and community-based research;
2 of the program's 11 centers focus wholly or partly on environmental
causes of autism.
Activity: Collaborative Programs of Excellence in Autism;
Description: Network of nine programs in which investigators conduct
basic and clinical research on the possible genetic, immunological,
neurobiological, and environmental causes of autism and investigate the
development of brain structures and their functions as they relate to
autism.
Activity: High Risk/Baby Sibling Autism Research Project;
Description: A multisite consortium designed to enhance research with
populations of young children at high risk for autism, particularly the
siblings of children with autism, with the goal of identifying
behavioral and biological markers for autism;
this consortium is a public-private collaboration between the National
Institute of Child Health and Human Development and the National
Alliance for Autism Research.
Activity: Identifying Autism Susceptibility Genes;
Description: A request for applications that encouraged research to
identify specific genes that relate to susceptibility to autism.
Activity: Intramural Program on Autism Research;
Description: A program of clinical research on autism that will offer a
multidisciplinary approach to the evaluation and treatment of children,
adolescents, and adults with autism;
the program was launched in the summer of 2005.
Activity: MRI Study of Normal Brain Development;
Description: A longitudinal study to map the structural development of
the brain by age and sex.
Activity: National Autism Brain Bank at Harvard;
Description: A resource center that collects, stores, and disseminates
postmortem human brain specimens for the study of autism.
Activity: National Database for Autism Research;
Description: A collection of information systems supporting autism
research activities that includes laboratory, clinical, and behavioral
data.
Activity: Research on Autism and Autism Spectrum Disorders;
Description: A program announcement that solicits research on various
topics related to autism: diagnosis, epidemiology, etiology, genetics,
treatment, and service delivery;
high priority areas include clinical and applied research that may lead
to the development of diagnostic research instruments, treatments, and
intervention strategies.
Activity: Research Units on Pediatric Psychopharmacology and
Psychosocial Interventions Network;
Description: Five groups of investigators that are specifically funded
to evaluate treatments for autism;
several studies are examining various aspects of medication, including
dose ranges, regimens, safety, and effect on cognition, behavior, and
development.
Activity: Studies to Advance Autism Research and Treatment;
Description: Eight centers of excellence designed to unite expertise,
infrastructure, and resources for conducting research on causes,
diagnosis, early detection, prevention, and treatment of autism.
Source: GAO analysis of NIH documents.
[End of table]
[End of section]
Appendix III: Interagency Autism Coordinating Committee Research Goals:
Area of research: Characteristics of autism;
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.
Area of research: School-and community-based interventions;
Goals: 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.
Area of research: Epidemiological studies;
Goals: 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.
Area of research: Early intervention;
Goals: 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);
Develop intervention methods for infants and toddlers to lower the age
for which there are effective interventions;
Implement longitudinal follow-up of early intervention randomized
clinical trial;
Provide evidence that the symptoms associated with 25 percent of cases
of autism can be secondarily prevented through early identification and
early treatment;
Develop methods that allow 90 percent of people with autism to develop
speech.
Area of research: Specific treatments;
Goals: Improve outcome measures to enhance effectiveness in evaluating
treatment studies;
Determine effectiveness of pharmacological, behavioral, and other
treatments that target symptoms associated with autism;
Identify individual characteristics that predict response to
behavioral, pharmacological, and other treatments;
Develop treatment algorithm for autism to provide guidance for
practitioners and educators;
Develop effective drug treatments that target core symptoms of autism.
Area of research: Neuroscience;
Goals: Establish infrastructure (e.g., enhanced brain acquisition) for
neuropathological investigations to characterize morphological aspects
of the pathophysiology of autism;
Develop technology and infrastructure for multisite imaging studies to
identify the neuropathology of autism;
Characterize the neuropathology of autism to identify brain structures
and functions associated with autism;
Characterize the developmental timeline for alterations in brain
structures and connections in autism;
Define neural circuitry and neurochemistry for several functions
impaired in autism;
Define basic, common neuropathological and neurochemical features of
autism.
Area of research: Screening;
Goals: Evaluate sensitivity and specificity of existing screening tools
and continue developing effective screening measures;
Develop research on implementing strategies for early identification of
children with autism in community settings, using a population-based
longitudinal cohort;
Identify biological markers, behavioral markers, or both to develop
indices of risk for the development of autism in infants;
Develop feasible, sensitive autism screening method for young infants.
Area of research: Other;
Goals: Develop local and national Research Communication Network to
disseminate findings among researchers and the public to increase
ongoing communication;
Develop twin resource to study heritability and environmental factors
influencing autism;
Identify environmental factors (e.g., viruses, medications) that
contribute to the development of autism and their associated
developmental windows;
Identify genetic and nongenetic causes of autism and their
interactions.
Source: GAO analysis of Interagency Autism Coordinating Committee
Research Matrix, 2003.
[End of table]
[End of section]
Appendix IV: Interagency Autism Coordinating Committee Services Roadmap
Goals and Recommendations:
Table 6: :
Goals: 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;
Recommendations: Provide ongoing training and technical assistance for
professionals and families to engage as full partners;
Increase autism information and education resource capacity at national
and local levels;
Integrate autism into existing initiatives to strengthen family support
and involvement and to establish integrated systems of care.
Goals: There will be universal early identification of signs of autism,
followed by appropriate referral to a coordinated and comprehensive
service system;
Recommendations: Support IACC Screening Subcommittee efforts to
increase public awareness and incorporate autism into routine
screening;
Develop guidelines for autism screening, diagnoses, and referral for
follow-up;
Improve and standardize developmental and autism screening
methodologies;
Incorporate autism guidelines into curriculum for residency,
professional certification, and other training programs;
Promote linkages between medical homes and existing resource networks
for developmental, educational, rehabilitative, social, and specialty
services for autism;
Provide technical assistance and disseminate educational materials,
checklists, and implementation tools for autism screening to families
and professionals.
Goals: 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;
Recommendations: Promote use of autism practice guidelines to define
standards of care in health, mental health, social services, and
education;
Incorporate autism service guidelines into curriculum for residency,
professional certification, and other training;
Provide incentives to ensure greater availability of well trained
providers and a more equitable distribution of services across
geographical areas;
Develop an action plan for collaboration at all levels to identify
services and meet the service needs of persons with autism within the
broader initiatives to develop community-based systems of services for
all persons with disabilities.
Goals: Community-based services will be organized so that individuals
with autism and their families can use them easily;
Recommendations: 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);
Ensure that individualized plans of care coordinate a comprehensive
continuum of services across all necessary service sectors and support
people with autism throughout their life span;
Identify and analyze effective models that organize, integrate, and
deliver comprehensive services;
Develop models that allow providers and families to have systematic
access to shared records and examples of exemplary practices.
Goals: 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;
Recommendations: Collect data about the life experiences and needs of
adults with autism;
Start transition planning services early;
Develop and support skill-building opportunities that promote self-
determination in youth with autism;
Provide an array of services and support in the community for
individuals with varying degrees of ability;
Incorporate aging issues-
-such as estate planning and long-term care--into transition planning;
Formalize federal partnerships to ensure collaboration across service
sectors providing transition planning;
Establish an interagency federal task force that identifies the needs
of adults with autism and determines how best to meet them.
Goals: 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;
Recommendations: Demonstrate the cost effectiveness of early
intervention;
Expand health insurance benefits for autism, taking into account the
need for a broad array of services;
Develop model financing, public and private insurance packages, and
Medicaid waiver programs;
Conduct a national study of cost and insurance to determine policies
and practices that affect financing, eligibility, and service delivery;
Develop innovative approaches, such as use of tax-exempt medical
savings accounts and financial planning assistance, that blend funding
from multiple sources to create a coordinated approach to financing
services.
Source: GAO analysis of Autism Spectrum Disorders Roadmap.
Note: The IACC Services Subcommittee presented the roadmap to the full
committee on May 16, 2005.
[End of table]
[End of section]
Appendix V: Comments from the Department of Health and Human Services:
Department Of Health & Human Services:
Office of Inspector Genera:
Washington, D.C. 20201:
Jun 29 2006:
Cynthia A. Bascetta:
Director, Health Care:
U.S. Government Accountability Office:
441 G Street, NW:
Washington, DC 20548:
Dear Ms. Bascetta:
The Department of Health and Human Services (HHS) appreciates the
opportunity to review and comment on the U.S. Government Accountability
Office's (GAO) draft report entitled, " Federal Autism Activities:
Funding for Research Has Increased, but Agencies Need to Resolve
Surveillance Challenges" (GAO-06-700), before its publication.
HHS does not concur with the draft report's recommendation, in that
GAO's draft report and recommendation suggest that the Departments of
HHS and Education have not worked together to identify options to
enable the CDC to continue to obtain and use educational records for
autism surveillance. HHS discussed with the Department of Education the
potential renewal of the Memorandum of Agreement (MOA) between the CDC
and the Department of Education, under which Education was working with
CDC to perform autism surveillance, consistent with the terms of the
MOA; and HHS also discussed with Education potential mechanisms by
which CDC could continue to obtain data for an effective surveillance
program. However, in December of 2005, the Department of Education
advised HHS that it had concluded that it would not renew the MOA.
The Department provided several technical comments directly to your
staff. These comments and the nonconcurrence with the recommendation
represent the tentative position of the Department and are subject to
reevaluation when the final version of the report is received.
Sincerely,
Signed by:
Daniel R. Levinson:
Inspector General:
Enclosure:
The Office of Inspector General (OIG) is transmitting the Department's
response to this draft report in our capacity as the Department's
designated focal point and coordinator for U.S. Government
Accountability Office reports. OIG has not conducted an independent
assessment of these comments and therefore expresses no opinion on
them.
[End of section]
Appendix VI: Comments from the Department of Education:
United States Department Of Education:
Office Of Innovation And Improvement:
Assistant Deputy Secretary:
June 5, 2006:
Ms. Cynthia A. Bascetta:
Director, Health Care:
Government Accountability Office:
Washington, D.C. 20548:
Dear Ms. Bascetta:
Thank you for the opportunity to review and comment on the Government
Accountability Office (GAO) draft report, Federal Autism Activities:
Funding for Research Has Increased, but Agencies Need to Resolve
Surveillance Challenges.
The report recommends that the Secretaries of Health and Human Services
(HHS) and Education (ED or the Department) "work together to promptly
identify options for overcoming challenges to CDC's ability to use
education records for autism surveillance." As explained more fully
below, we do not support this recommendation. We believe that this
recommendation does not accurately reflect the important privacy
protections established by the Family Educational Rights and Privacy
Act (FERPA) nor Congress' concern, as evidenced by recent legislation,
with preserving the rights of parents to be notified of attempts to
obtain access to their children's education records and to consent, or
refuse consent, to disclosure of their children's education records.
The Department and HHS have had a number of meetings and discussions on
this issue, and we have consistently advised HHS that FERPA requires
CDC to obtain written parental consent in order to gain access to
education records. In this regard, the Department has offered to assist
by providing technical assistance to school districts on parental
consent requirements and to help CDC construct an appropriate consent
form.
FERPA applies to an educational agency or institution that receives
funds under any program administered by the Secretary of Education,
which includes virtually all public school districts, as well as most
public and private postsecondary institutions. 34 CFR § 99.1. An
educational agency or institution subject to FERPA may not have a
policy or practice of disclosing education records, or non-directory,
personally identifiable information from education records, without the
prior written consent of the parent or eligible student, except as
provided by law. 20 U.S.C. § 1232g(b). ("Eligible student" means a
student who has reached 18 years of age or is attending a postsecondary
institution at any age. 34 CFR §§ 99.3.) "Education records" are
defined as "those records, files, documents, and other materials
which -
(i) contain information directly related to a student; and:
(ii) are maintained by an educational agency or institution or by a
person acting for such agency or institution."
20 U.S.C. § 1232g(a)(4)(A); 34 CFR § 99.3.
Additionally, States receiving assistance under Part B of the
Individuals with Disabilities Education Act (IDEA) have
responsibilities under that law to protect the confidentiality of
personally identifiable information. The specific IDEA confidentiality
requirements are codified at 34 CFR §§ 300.560 - 300.577. The Part B
confidentiality requirements contain many of the same provisions that
exist in FERPA and apply, along with FERPA, to the education records of
children with disabilities in any State receiving Part B funds. FERPA
and IDEA establish clear and comprehensive requirements for protecting
the privacy rights of students with disabilities in elementary and
secondary schools.
FERPA is intended to protect the privacy interests of parents and
students in education records maintained by educational agencies and
institutions on students. These records contain sensitive personal,
behavioral, financial, medical, and other information. Protecting the
privacy of this information should not be viewed as a barrier or
"challenge" to be overcome or circumvented, but as an important public
safeguard to be protected and strengthened.
GAO's recommendation refers to "challenges to CDC's ability to use
education records for autism surveillance." However, the challenge
Congress has described is not in "using" education records but in
"obtaining" them. The Birth Defects and Developmental Disabilities
Prevention Act of 2003, Pub. L. No. 108-154, 117 Stat. 1933 (December
3, 2003), the legislation requiring HHS and ED to issue a joint report
concerning surveillance activities under section 102 of the Children's
Health Act of 2000, asks for a "description of the challenges provided
to obtaining education records (in the absence of parental or patient
consent) . . ." and "a description of the manner in which such
challenges [to obtaining consent] can be overcome, including efforts to
educate parents . and increase the rate of parental or patient consent.
. . ." Pub. L. No. 108-154, section 4(6)-(7)(emphasis added).
Accordingly, we believe that Congress' primary concern was not to
circumvent the important parental consent requirements in FERPA and
IDEA, but rather that CDC increase parental awareness concerning the
surveillance so that it could more easily secure consent from parents
or try to secure the necessary information from other sources.
This reading of the joint report language in the Birth Defects and
Developmental Disabilities Prevention Act of 2003 is also supported by
the fact that the following year Congress amended the Children's Health
Act to require parental consent for disclosure of education records for
a study. In December 2004, as part of the reauthorization of and
amendments to IDEA, Congress amended § 1004 of the Children's Health
Act of 2000 to require that parents provide consent before information
from students' education records is provided to CDC. Specifically, this
section added ED to the consortium of Federal agencies working on a
national longitudinal study of environmental influences on children's
health and development, including, in part, developmental disorders.
The amendment requiring parental consent specifically states that the
FERPA provision permitting disclosures, without consent, to "authorized
representatives of the Secretary of Education" shall not be applied. In
floor remarks concerning this amendment, which was offered by Senator
Clinton, Senator Gregg stated the following:
This amendment ensures that, should any collection of information from
the study involve student education records, parents must provide prior
consent before the information is released. This ensures compliance
with the Family Educational Rights and Privacy Act of 1974 (20 U.S.C.
1232g) (FERPA) and comports with the federal policy of preserving
parental consent.
Quite simply, information in records maintained by schools about
individual children should not be accessible by the CDC, or Federal
agencies, or their contractors without the knowledge and prior consent
of those children's parents.
150 Congressional Record S 5348 (May 12, 2004). While this specific
amendment appears in another section of the Children's Health Act, we
believe that it indicates legislative intent that parents should
provide consent before their children's schools disclose personally
identifiable information from their education records to the CDC.
By way of additional relevant context, in December 2000, in response to
direction from the previous Administration, the Department entered into
a Memorandum of Agreement (MOA) with CDC to permit school districts in
the Atlanta area to disclose to CDC personally identifiable information
from students' education records, without first obtaining the consent
from parents as generally required by FERPA. Under the MOA, CDC was
designated as an "authorized representative" of the Department of
Education so that Atlanta area schools would be permitted to disclose
education records, without consent, to CDC under a provision in FERPA
that permits schools to disclose education records to the Secretary of
Education for the audit or evaluation of Federal or State supported
education programs. (34 CFR § 99.31(a)(3) and § 99.35.) This agreement,
which applied only to schools in the Atlanta area participating in the
Metropolitan Atlanta Developmental Disabilities Surveillance Program
(MADDSP), expired on December 11, 2005.
Prior to the expiration of the MOA, some Members of Congress raised
concerns about the Department's interpretation of FERPA permitting
individuals outside the control of educational agencies and
institutions to access sensitive student data, including Social
Security numbers. Some Federal and State agencies and other parties had
sought to expand the scope of this FERPA provision by attempting to
obtain designation as an "authorized representative" of Federal and
State education officials so that personally identifiable information
could be disclosed, without consent, for data matching, enrollment
verification, research, and other purposes. As a result, the Department
undertook an extensive legal review of the "authorized representative"
provision and concluded that the expansive interpretation that was used
to support the MOA was not consistent with FERPA's statutory language
and essentially nullified the specific statutory conditions for
disclosure of education records without consent. On January 30, 2003,
with substantial input from Congressional staff, the Department
rescinded previous guidance permitting this practice and explained that
the multiple references to "officials" in the statutory provision
reflect a Congressional concern that "authorized representatives" means
those under the direct control of officials that may receive
information under § 99.31(a)(3), that is, an employee, official, or
contractor of the Secretary of Education or State and local educational
authorities. By letter dated April 18, 2006, we advised Members of
Congress who had inquired about the expired MOA with the CDC that,
while the Department does not question the value or importance of the
work on autism that the CDC conducted through MADDSP and other
surveillance programs, we have concluded that FERPA does not permit us
to renew the agreement with CDC.
The statement in the Report concerning the Department not fully
communicating with State educational agencies regarding the issuance of
the January 30, 2003, memo is inaccurate. The Report states: "In
response to subsequent inquiries, Education sent letters to two states'
education agencies informing them of this reinterpretation of FERPA.
Education has not communicated its position to other states' education
agencies." We posted these letters and the January 30, 2003, memorandum
on the Family Policy Compliance Office's well-visited website. We also
carry out extensive training on FERPA for school officials nationwide,
as well as providing technical assistance in response to requests for
information. Our training and technical assistance includes
clarification of the limitations in FERPA on designating outside
entities as authorized representatives of State educational
authorities.
The Report also states that CDC has identified "a number of measures
that 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; allowing staff from education agencies to oversee or
participate in data collection; or providing for a passive consent
system for parents." While the Department is willing to discuss options
with CDC, it should be noted that FERPA requires that parents provide
written consent before personally identifiable information from their
children's education records is disclosed to outside entities such as
the CDC. The law does not permit schools subject to FERPA to disclose
education records based on a passive consent model.
Finally, we have concerns about statements on pages 20 and 21 of the
draft report that may imply that services for children with
disabilities (including those with autism) under the Individuals with
Disabilities Education Act (IDEA) may be inadequate. IDEA provides a
consistent framework for determining children's needs through the
evaluation process and the appropriate educational and related services
for children with disabilities through the development of
individualized education programs (IEPs). IDEA requires that children
receive the services that have been determined appropriate through that
IEP process, but does not require the provision of all services that
may have been recommended to that process. Unfortunately, though, the
report may be confusing education services that might have been
recommended for children with autism with services that an IEP Team has
determined are appropriate for a particular child, and, in doing so,
seems to imply that the GAO has found evidence of widespread failure to
provide education services to children with autism in violation of the
IDEA. We are not aware of this type of violation, but if GAO has more
specific information on this issue that would show violation, we would
appreciate receiving that information.
Our technical comments on the report are enclosed. We appreciate GAO's
analysis and work.
Sincerely,
Signed by:
Christopher J. Doherty:
Acting Assistant Deputy Secretary:
Enclosure:
[End of section]
Appendix VII: GAO Contact and Staff Acknowledgments:
GAO Contact:
Cynthia A. Bascetta, (202) 512-7101 or bascettac@gao.gov:
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.
FOOTNOTES
[1] In this report, the term autism refers to a spectrum of disorders,
including the following diagnoses: autistic disorder, Asperger
syndrome, and pervasive developmental disorder not otherwise specified.
These disorders are also commonly referred to collectively as autism
spectrum disorders.
[2] Centers for Disease Control and Prevention, Fact Sheet: "MMWR -
Parental Report of Diagnosed Autism in Children Aged 4-17 Years, United
States, 2003-2004" (May 4, 2006).
[3] Surveillance is the ongoing collection, analysis, and reporting of
data on health conditions that can be used to plan, implement, and
evaluate public health actions.
[4] Pub. L. No. 106-310, §§ 101-105, 114 Stat. 1101, 1105-1109(2000).
[5] A developmental disability is a chronic condition caused by mental
impairment, physical impairment, or both that begins any time during
prenatal development up to age 22 and usually persists throughout a
person's life. People with developmental disabilities have problems
with major life activities such as language, mobility, learning, and
independent living. Developmental disabilities include cerebral palsy,
hearing loss, mental retardation, vision impairment, and attention
deficit hyperactivity disorder.
[6] Rett syndrome affects girls almost exclusively;
after a period of normal development, at some point from 6 to 18
months, a child's mental and social development regresses.
[7] In childhood disintegrative disorder, the child has age-appropriate
social and communication skills for a period of time and begins
regressing between ages 3 and 4, on average;
the loss of skills is more dramatic in childhood disintegrative
disorder than in autistic disorder.
[8] 20 U.S.C. § 1400 et seq.
[9] Prevalence refers to the number of cases present during a
particular interval of time.
[10] Centers for Disease Control and Prevention, Prevalence of Autism
in Brick Township, New Jersey, 1998: Community Report (Atlanta, Ga.:
2000), and Yeargin-Allsopp et al., "Prevalence of Autism in a U.S.
Metropolitan Area," Journal of the American Medical Association, vol.
289, no. 1 (2003).
[11] Population-based studies conducted in the 1980s yielded prevalence
rates of .33 and .12 per 1,000 children.
[12] Centers for Disease Control and Prevention, Fact Sheet: "MMWR -
Parental Report of Diagnosed Autism in Children Aged 4-17 Years, United
States, 2003-2004" (May 4, 2006). These rates were calculated using
parent-reported data from two national surveys--the National Health
Interview Survey administered by CDC and the National Survey of
Children's Health sponsored by HRSA and administered by CDC. The
surveys asked parents if they were ever told by a doctor or other
health care provider that their child had autism.
[13] One exception is a supplemental appropriation to HHS for fiscal
year 2003 in which $1 million was made available to the Geisinger
Health System, Harrisburg, Pennsylvania, to establish centers of
excellence for the treatment of autism. Pub. L. No. 108-11, 117 Stat.
559, 595.
[14] Research Units on Pediatric Psychopharmacology Autism Network,
"Randomized, Controlled, Crossover Trial of Methylphenidate in
Pervasive Developmental Disorders With Hyperactivity," Archives of
General Psychiatry, vol. 62 (2005).
[15] The CPEAs are located at Boston University;
University of California, Davis; University of California, Los Angeles;
University of Pittsburgh; University of Rochester Medical Center;
University of Texas Health Science Center at Houston; University of
Utah (Salt Lake City); University of Washington (Seattle); and Yale
University (New Haven, Connecticut). The CPEAs collectively make up the
Network on the Neurobiology and Genetics of Autism.
[16] The STAART centers are located at Boston University; Kennedy
Krieger Institute (Baltimore, Maryland); Mt. Sinai Medical School (New
York, New York); University of California, Los Angeles; University of
North Carolina, Chapel Hill; University of Rochester; University of
Washington (Seattle); and Yale University (New Haven, Connecticut).
[17] The five institutes are the National Institute of Child Health and
Human Development, National Institute on Deafness and Other
Communication Disorders, National Institute of Environmental Health
Sciences, NIMH, and National Institute of Neurological Disorders and
Stroke.
[18] These other developmental disabilities are cerebral palsy, hearing
loss, mental retardation, and vision impairment.
[19] The states are Alabama, Arizona, Arkansas, Florida, Illinois,
Missouri, New Jersey, South Carolina, Utah, West Virginia, and
Wisconsin.
[20] The centers are at the California Department of Health Services,
CDC's National Center on Birth Defects and Developmental Disabilities,
Colorado Department of Public Health and Environment, Johns Hopkins
University, University of North Carolina at Chapel Hill, and University
of Pennsylvania.
[21] In response to a requirement of the Children's Health Act to
establish an information clearinghouse, CDC established a Data
Coordinating Center to collect and store data and to coordinate data
management between the Autism and Developmental Disabilities Monitoring
Network grantees and the Centers of Excellence for Autism and
Developmental Disabilities Research and Epidemiology grantees.
[22] Centers for Disease Control and Prevention, National Center on
Birth Defects and Developmental Disabilities, Developmental
Disabilities Surveillance: Methods and Results from the Metropolitan
Atlanta Developmental Disabilities Surveillance Program (MADDSP)
(Atlanta, Ga., 2004). To identify autism cases, the site applied
diagnostic criteria for autism contained in the Diagnostic and
Statistical Manual of Mental Disorders - Fourth Edition to information
obtained from student education records, which included behavioral
descriptions and information on the child's developmental history.
[23] 20 U.S.C. § 1232g.
[24] FERPA permits disclosure of personally identifiable education
records without the written consent of parents to, for example, an
authorized representative of Education or a state education agency,
provided that the disclosure is in connection with the audit and
evaluation of federally supported education programs or the enforcement
of federal legal requirements that relate to such programs. The records
must also be protected so that personally identifiable information is
not improperly disclosed and the records are destroyed when no longer
needed.
[25] Education told us that it has also provided training to local
school districts, state departments of education, and others on the
requirements of FERPA.
[26] These 16 sites consist of the 10 sites conducting surveillance in
CDC's Autism and Developmental Disability Monitoring Network and the 6
sites conducting surveillance through CDC's Centers of Excellence for
Autism and Developmental Disabilities Research and Epidemiology.
[27] In a passive consent system, access to education records would be
granted automatically unless parents informed the school that they did
not want anyone else to have access. Passive consent systems are not
authorized under FERPA.
[28] The report is to be submitted to the Senate Committee on Health,
Education, Labor, and Pensions and the House Committees on Energy and
Commerce and Education and the Workforce.
[29] 42 U.S.C. § 247b-4b note.
[30] According to NIH, the funding for autism research in fiscal year
2005 includes funding provided through the agency's Roadmap for Medical
Research. The goal of the roadmap is to identify research opportunities
and gaps in biomedical research that no single NIH institute can
undertake alone and that NIH officials believe the agency as a whole
must address to make the greatest impact on the progress of medical
research.
[31] Head Start is authorized to serve children at any age prior to
compulsory school attendance in the state.
[32] 20 U.S.C. § 9835(d).
[33] Autism is one of several disabilities for which children are
eligible to receive special education services under IDEA.
[34] See GAO, Individuals with Disabilities Education Act: Education
Should Provide Additional Guidance to Help States Smoothly Transition
Children to Preschool, GAO-06-26 (Washington, D.C.: Dec. 14, 2005).
[35] 20 U.S.C. § 1401(9), 1412(a)(1)(A). Eligibility terminates when
the child receives a high school diploma or when the child is not
otherwise eligible under state law. 20 U.S.C. § 1414(c)(5)(B)(i).
[36] Parents may also obtain an independent education evaluation of
their child at any time at their own expense.
[37] See GAO, Special Education: Numbers of Formal Disputes Are
Generally Low and States Are Using Mediation and Other Strategies to
Resolve Conflicts, GAO-03-897 (Washington, D.C.: Sept. 9, 2003).
[38] National Research Council, Educating Children with Autism
(Washington, D.C.: 2001).
[39] The council recommends that states develop a state fund for
intensive intervention or consider other sources of funding currently
in place in some states to provide education services to children with
autism.
[40] Children with disabilities, including autism, may also be eligible
for transition services through the Department of Labor's Workforce
Investment Act youth program and the Social Security Administration's
Ticket to Work and Self-Sufficiency program. For additional information
on the transition services provided by these programs, see GAO, Special
Education: Federal Actions Can Assist States in Improving Postsecondary
Outcomes for Youth, GAO-03-773 (Washington, D.C.: July 31, 2003).
[41] A student is eligible for vocational rehabilitation services if
the state vocational rehabilitation agency determines that the student
has a physical or mental disability that constitutes or results in a
substantial impediment to employment.
[42] GAO-03-773.
[43] The sites are located at the University of Washington (Seattle);
University of Colorado at Denver; University of Kansas (Kansas City);
Oakstone Academy (Columbus, Ohio); Maryland Coalition for Inclusive
Education (Hanover); and University of South Florida (Tampa).
[44] HRSA also supported the Quentin N. Burdick Program to address
issues in rural health care. A goal of the Burdick Program was to train
health professionals to deliver medical services to people with
developmental disabilities, including autism. HRSA ended the Burdick
program in December 2005 because of budget constraints.
[45] Medicaid is a federal-state program that finances health care for
certain low-income Americans. The Medicaid autism and developmental
disability programs operate under Section 1915(c) of the Social
Security Act, which authorizes CMS to waive certain Medicaid
requirements, including (1) statewideness, which requires that services
be available throughout the state; (2) comparability, which requires
that all services be available to all eligible individuals; and (3)
income and resource rules, which require states to use a single income
and resource standard when determining eligibility for Medicaid, with
the exception of institutional care. A waiver of the last requirement
allows states to exclude parental income when determining the income
eligibility of children with autism and other developmental
disabilities.
[46] Respite care services are services provided to individuals unable
to care for themselves and are furnished on a short-term basis because
of the absence of or need for relief for those persons normally
providing the care.
[47] The states CMS reported to us as having waiver programs specific
to autism are Indiana, Maine, and Maryland.
[48] States with Independence Plus waiver programs are Alabama,
Connecticut, Delaware, Louisiana, Maryland, Mississippi, Montana, New
Hampshire, North Carolina, North Dakota, Rhode Island, and South
Carolina.
[49] The other HHS agencies participating in the IACC are ACF, Agency
for Healthcare Research and Quality, CDC, CMS, Food and Drug
Administration, HRSA, and SAMHSA.
[50] The services subcommittee was initially cochaired by officials
from HRSA and SAMHSA.
[51] See [Hyperlink http://www.hhs.gov/autism/].
[52] See [hyperlink, http://www.cms.hhs.gov/PromisingPractices/].
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