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Report to Congress Cover 2009
Report to Congress
on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities
FY 2006 - FY 2009
Required Report Elements

The following chapters of this Report to Congress addresses the 9 required elements outlined in the CAA.  Elements (1) and (2) have been combined into one chapter covering the general progress made and amounts expended during the past 4 years in Federal ASD research efforts by lead agencies and offices within the Department of Health and Human Services (HHS), including:  Centers for Disease Control and Prevention (CDC), Centers for Medicare & Medicaid Services (CMS), Office on Disability (OD), Health Resources and Services Administration (HRSA), the National Institutes of Health (NIH), and the Substance Abuse and Mental Health Services Administration (SAMHSA).  In addition to these lead agencies, a number of other Federal agencies and one department provided supporting information when applicable, including:  Administration for Children and Families (ACF), Agency for Healthcare Research and Quality (AHRQ), and the Department of Education (ED).

ASD Progress and Budget Expenditures: Agency Overviews

This chapter covers subsections (1) and (2) of Section 399DD, which require: (1) "A description of the progress made in implementing the provisions of the Combating Autism Act of 2006," and (2) "A description of the amounts expended on the implementation of the particular provisions of the Combating Autism Act of 2006." Details are provided from the lead HHS agencies and offices for ASD research and services, including Centers for Disease Control and Prevention (CDC), Centers for Medicare & Medicaid Services (CMS), Office on Disability (OD), Health Resources and Services Administration (HRSA), the National Institutes of Health (NIH), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition, information was provided by the Department of Education (ED), which coordinates with HHS on issues related to autism and serves as a member of the IACC.

Centers for Disease Control and Prevention (CDC)

The Centers for Disease Control and Prevention (CDC) brings a unique epidemiologic perspective to the quest to fully understand autism spectrum disorders (ASD). This perspective includes reporting data on the occurrence of ASD, contributing to the understanding of risk and protective factors, and dissemination of information on effective prevention strategies, when available. CDC conducts both intramural and extramural activities and partners with grantees, Federal and State governments, and other stakeholders in these activities. CDC also serves on the IACC and all three of its subcommittees.

Recognizing the importance of CDC's unique public health role, the Children's Health Act of 2000 established a scientific infrastructure at CDC for conducting population-based ASD monitoring and research. The Combating Autism Act of 2006 (CAA) further strengthened and expanded this infrastructure, affording CDC the ability to conduct ongoing monitoring of ASD over time and across multiple geographic regions of the United States.

Since 2006, the Autism and Developmental Disabilities Monitoring (ADDM) Network has published the most comprehensive estimates to date of the prevalence of ASD in multiple areas of the United States. The CAA also supported the implementation of a major, multisite collaborative study conducted by the Centers for Autism Developmental Disabilities Research and Epidemiology (CADDRE), examining what might put children at risk for ASD and other developmental disabilities. The CAA supported expansion of surveillance to include younger children with ASD and has supported ongoing international efforts through collaboration with Denmark to broaden our understanding of ASD. The CAA further strengthened the capacity of CDC's health communication campaign, "Learn the Signs. Act Early." (LTSAE) in educating parents, health care professionals, and early childhood educators about the importance of monitoring a child's developmental milestones, seeking further evaluation when there is a concern, and beginning early intervention services as soon as possible.

In the time since the enactment of the CAA, CDC has built critical infrastructure to further advance our understanding of ASD and has seen these efforts come to fruition. CDC has coordinated the ADDM Network to characterize the prevalence and population characteristics of children with ASD in collaboration with State Health Departments or their representatives. The ADDM Network currently conducts surveillance of ASD and other developmental disabilities in 12 geographic areas of the United States. In 2007, CDC published the first estimate of ASD prevalence across multiple areas of the U.S., establishing the most comprehensive prevalence estimates of the spectrum of autism conditions based on modern criteria. In 2009, CDC followed this publication with a second report of prevalence.

Together these reports have informed the understanding of ASD prevalence and the characteristics of children with ASD. They are routinely used to inform policy, improve service provision, and to conduct further analyses to understand ASD among the population. The ADDM Network has now published two prevalence reports, covering a six year span of time, and include children who were born in the 1990's and forward. A robust dataset now exists which can be used to examine trends in ASD prevalence over time. In addition, these data have been used to better characterize who may be at greater risk for ASD (see Appendix i for a full list of CDC-supported ASD publications).

In addition to ongoing population based monitoring of ASD, the CDC's CADDRE Network has been successful in implementing the Study to Explore Early Development (SEED), the largest collaborative scientific study planned to date of the causes of autism. Starting in 2006 to the present, CADDRE established and implemented this study across six sites in the U.S. SEED seeks to characterize the autism behavioral phenotype and associated developmental, medical, and psychiatric conditions of autism and to understand the genetic and environmental risk factors for autism with a special focus on immunological, hormonal, gastrointestinal, and sociodemographic features. By the end of 2010, SEED will have enrolled more than 2,700 children and their families, and initial findings are due to be released in early 2012. These results hold promise for greatly advancing our understanding of ASD etiologies.

CDC is also involved in awareness activities through the "Learn the Signs. Act Early." health communication campaign. Campaign efforts are helping to change perceptions about the importance of identifying developmental concerns early and give parents and professionals the tools to help. Since the start of the campaign in October 2004, resources provided by "Learn the Signs. Act Early." have been made available to over 11 million health care professionals, parents, partners, campaign champions, and child care providers. The LTSAE, with support from the Health Resources and Services Administration (HRSA), and the Association of University Centers on Disabilities (AUCD), sponsors the Act Early Regional Summits which bring together State-level leaders from advocacy, early intervention, education, medical, and other systems to increase collaboration and coordination among programs and services for children with autism and other developmental disabilities. LTSAE has also funded 10 extramural research projects to learn more about overcoming barriers to action by parents when a delay has been identified, why disparities in identification exist among African-Americans and Hispanics, and how to reduce them, and how to measure screening, referral, and entry into early intervention services.

Finally, CDC, in partnership with the Department of the Army, is testing the theory that certain antibodies in pregnant women and infants may cause alterations in the development of the fetal brain that lead to ASD. The types of antibodies CDC will investigate are those that react both with microbial antigens and with nerve or endocrine tissue antigens. In the Blood Spot Project, CDC will utilize heel stick blood samples that have been archived with consent for use in retrospective research studies. In order to determine whether the developing fetus has been exposed to cross-reactive antibodies, CDC will test archived dried blood spots (DBS) of newborn children who later developed autism and others who developed normally. If the theory is correct, samples from children who develop autism will have higher levels of antibodies that bind strongly to brain tissue antigens, in which case the findings of this study will aid in early diagnosis. This will not only contribute, to a better understanding of autism's cause and significantly impact its research, but allow for the development of a possible treatment or prevention of this often devastating brain disorder.

Table 1. CDC ASD-related budget expenditures from FY 2006-FY 2009*

CDC Autism Expenditures FY 2006 FY 2007 FY 2008 FY 2009

CDC Autism Expenditures

Autism/Infant Health

FY 2006

$15,333,483

FY 2007

$15,176,472

FY 2008

$16,297,110

FY 2009

$19,864,294

CDC Autism Expenditures

Autism Awareness ("Learn the Signs. Act Early.")

FY 2006

$2,632,099

FY 2007

$2,565,810

FY 2008

$2,565,810

FY 2009

$2,415,359

CDC Autism Expenditures

Blood Spot Project**

FY 2006

n/a

FY 2007

n/a

FY 2008

n/a

FY 2009

$125,000

CDC Autism Expenditures

Total

FY 2006

$17,965,582

FY 2007

$17,742,282

FY 2008

$18,862,920

FY 2009

$22,404,653

* These expenditures include costs associated with both autism and other CDC program dollars in support of the Combating Autism Act of 2006 on autism and other developmental disabilities. CDC has reported spending on programs utilizing only autism program dollars to the Interagency Autism Coordinating Committee in a separate report.
** The autism program dollars do not provide funding for the Blood Spot Project.

Below is a description of specific CDC programs supported by the CAA:

  • Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP): Ongoing and systematic monitoring of prevalence of selected developmental disabilities (intellectual disability, hearing loss, vision impairment, cerebral palsy, and autism spectrum disorders) according to various demographic characteristics of children who reside in metropolitan Atlanta. MADDSP serves as the model for the Autism and Developmental Disabilities Monitoring (ADDM) Network and participates as a site in this collaboration.
  • Autism and Developmental Disabilities Monitoring (ADDM) Network: The ADDM Network is a collaborative project to characterize the population prevalence and characteristics of children with ASD and other developmental disabilities. Cooperative agreements to conduct ADDM Network activities have been awarded to State Health Departments or their representatives to develop and improve programs that track the number of children with ASD in their States. The ADDM Network currently conducts surveillance of ASD and other developmental disabilities in 12 geographic areas of the United States. The ASD surveillance methodology for the ADDM Network focuses on lifetime prevalence of children who are eight years old in a given surveillance year.
  • Autism Spectrum Disorder Surveillance of Younger Children (Pilot Alternative Surveillance): In fiscal year 2006, CDC established a pilot project to investigate the feasibility of combining developmental screening and monitoring prevalence of ASD for children under the age of 4 years. Two sites (Florida and California) were funded to assess the feasibility of monitoring early signs of ASD. While these projects utilized direct screening versus the record review methodology utilized by the ADDM Network, it has been successful in showing that early ASD surveillance is feasible in helping us better understand the early identification of children with ASD. FY 2010 is the final year for these pilot projects, but they have provided the support to add a new component to the ADDM Network monitoring ASD prevalence and characteristics among children who are 4 years of age (see Early ADDM below).
  • Early ADDM Network: In fiscal year 2010, CDC provided supplemental funding to six ADDM sites to track the prevalence of ASD among younger children (4-year-olds) using ADDM methods. These efforts have expanded surveillance focusing on younger cohorts to better understand the population characteristics of young children affected by ASD and to increase awareness of ASD in young children, leading to improvements in early identification efforts. The Early ADDM Network will also allow for follow-up of the same cohorts of children when they are 8 years of age in the ongoing ADDM Network surveillance activities.
  • Study to Explore Early Development (SEED): This is a 5-year, multisite collaborative study, conducted by the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE), examining what might put children at risk for ASD and other developmental disabilities. SEED will be the largest collaborative scientific study to date of the causes of autism. It will include about 2,700 children, 2 through 5 years of age, as well as their parents and includes diverse groups from six areas across the county.
  • Denmark Collaboration (PDF – 75 KB): The CDC-Denmark Program was established to examine a variety of public health issues, including ASD and other developmental disabilities – drawing on the unique research resources in Denmark. Denmark has a combination of national public health data systems currently in place that are not found elsewhere in the U.S. or abroad. This unique combination includes more than 200 long established national disease and administrative registries and a complete bio-bank of archived newborn blood samples of all children born in Denmark from 1982 and onwards. This collaboration has been fruitful and has added greatly to our understanding of ASD.
  • "Learn the Signs. Act Early.": This health communication campaign aims to improve early identification of children with autism and other developmental disabilities so they can get the services they need. Many children with a developmental disability are not identified until after entering school; however, early intervention can have a significant impact on a child's ability to learn new skills. CDC's program promotes awareness of healthy developmental milestones in early childhood, promotes early identification of signs of delay, and works with State and national partners to enhance coordination of efforts at the State level to improve screening and referral to early intervention services.
Centers for Medicare & Medicaid Services (CMS)

The Centers for Medicare & Medicaid Services' (CMS) involvement in implementing the CAA in FYs 2006-2010 is focused on Sections 399BB and 399CC, "Autism Education, Early Detection, and Intervention" and "Interagency Autism Coordinating Committee." A CMS official is appointed to the IACC, is a member of the Subcommittee for Planning the Annual Strategic Plan Updating Process, and co-chairs the Services Subcommittee.

Regarding Section 399BB, CMS has supported items (a)(1) and (6) and also item (c)(v). The former discusses awareness of ASD and evidence-based interventions for people with ASD or other developmental disabilities while the latter specifically references "programs under title XIX of the Social Security Act, particularly the Medicaid Early and Periodic Screening, Diagnosis and Treatment Program (EPSDT)."

In 2007, CMS issued three "Promising Practices in Home and Community-Based Services" papers on ASD: California - Single Process for Early Diagnosis and Service Delivery (PDF – 54 KB), Connecticut - Pilot Program for Non-Medicaid Eligible Young Adults with Autism Spectrum Disorders (PDF – 52 KB) and Delaware - Supported Employment Program for Adults with Autism Spectrum Disorders (PDF – 143 KB).

In 2010, CMS issued a report entitled Autism Spectrum Disorders (ASD) Services Final Report on Environmental Scan, 16 (PDF – 2 MB) the result of a comprehensive review of scientific evidence regarding the efficacy, effectiveness, safety, and availability of ASD-related psychosocial services and supports for children, transitioning youth, and adults with ASD, including data on the evidence based interventions for people with ASD across the lifespan and data on the costs associated with providing services to people with ASD.

CMS administers the Medicaid program, Title XIX of the Act, which includes Early and Periodic, Screening, Diagnostic and Treatment (EPSDT). The EPSDT benefit entitles children enrolled in Medicaid under age 21 to a comprehensive package of preventive health care and medically-necessary services. EPSDT includes screening, vision, dental, and hearing services as well as "[s]uch other necessary health care, to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the [Medicaid] State plan." The EPSDT benefit includes all mandatory and optional services in Section 1905(a) of the Act such as physical therapy, occupational therapy, speech therapy, and rehabilitative services. CMS is in the process of establishing a workgroup for stakeholders to provide input on the EPSDT program and data reporting, and has increased training for its EPSDT regional coordinators and other staff to ensure State compliance with the full array of services required for children served under EPSDT.

CMS expended approximately $10,000 on the three Promising Practices papers issued in 2007. CMS expended approximately $206,000 in 2009 and $179,000 in 2010 related to activities for the Environmental Scan and other general ASD project preparation activities completed in 2010. Approximately $75,000 has been expended in 2010 on activities related to the nine-State study, Report on State Services to Individuals with Autism Spectrum Disorders (ASD), which aims to assess the implementation of evidence-based/promising practices through the lens of state experience, summarizing the current state of ASD-related services in Arizona, California, Connecticut, Indiana, Maine, Missouri, New Mexico, Pennsylvania, and Wisconsin. The report, released in April 2011, describes the types of services and supports provided by state and local governments; the sources of funding for programs; and the policy, staffing and implementation issues to be addressed to effectively serve people with ASD.17, 18 CMS has also spent approximately $175,000 in 2010 related to activities surrounding a future report, the State of the States on ASD, scheduled for completion in 2011. This report will assess existing State programs and supports for families living with ASD in 50 States and the District of Columbia, providing a comprehensive view of services available through State program across the country. This project is included as an objective in Chapter 7 of the 2011 IACC Strategic Plan.

Office on Disability (OD)

Under the Combating Autism Act (CAA), the Office on Disability, under the Office of the Secretary of Health and Human Services, does not receive any appropriations, and therefore has no direct program or research responsibilities funded by CAA. However, the Office on Disability indirectly serves and supports people with autism in several ways through coordination of efforts and resources across the U.S. Department of Health and Human Services. The Office on Disability is primarily a policy office and its initiatives are organized around the following three themes: a) Improve Access to Community Living Services and Supports; b) Integrate Health Services and Social Supports; and c) Provide Strategic Support on Disability Matters. Under these themes, the office works across Federal agencies to streamline and coordinate programs that improve the lives of people with disabilities -- including expanding access to home and community-based services and support -- endorsing the efforts and initiatives reported by HHS agencies.

The Office on Disability is leading a new initiative on Comparative Effectiveness Research. The 2-year contract mechanism was awarded to Mathematica Policy Research Inc. on May 5, 2010, funded for approximately $7 million under the American Recovery and Reinvestment Act of 2009 (P.L. 111-5). A Center of Excellence for Research on Disability Services, Care Coordination, and Integration has been established to create data infrastructure to support and conduct comparative effectiveness research on health services and supports for people with disabilities. This initiative directly links to health reform provisions related to improving health care quality programs through the development of a national strategy for quality improvement in health care and the expansion of health care delivery system research including person centered outcomes research. In aaddition this initiative may also provide relevant information that can be used to improve community living for people with disabilities. To date the following has been accomplished: a data-user agreement has been signed with CMS to allow the center to use the CMS Chronic Conditions Data Warehouse; a systematic review of the literature on home and community-based services, care coordination, and integration is ongoing; and the Center of Excellence for Disability Research website has been launched. Building data infrastructure will allow for future development of a health services research agenda around access and quality of services and supports provided to people with autism. To date, tasks and deliverables under the initiative are on time.

Health Resources and Services Administration (HRSA)

Under the Combating Autism Act of 2006 (CAA), the Health Resources and Services Administration (HRSA)'s Maternal and Child Health Bureau (MCHB) received funding to address five CAA objectives to: 1) increase awareness of autism spectrum disorder (ASD) and other developmental disabilities (DD); 2) reduce barriers to screening and diagnosis; 3) support research on evidence-based interventions; 4) promote the development of guidelines for evidence-based practices; and 5) train health care professionals to use valid, reliable screening tools, to confirm or rule out an ASD diagnosis and, if diagnosis is confirmed, to provide evidence-based, early intervention. HRSA's MCHB was awarded approximately $37 million in FY 2008 and approximately $42 million in FY 2009 to implement the CAA. However, this included a transfer of approximately $20 million of Special Projects of Regional and National Significance (SPRANS) funds to the Autism and Other Developmental Disorders program. To meet these objectives, MCHB developed and implemented the Combating Autism Act Initiative (CAAI). This initiative is designed to combat ASD and other DD through research, training, and the development of State-level infrastructures that improve access to health care services for children with ASD and other DD. CAAI funding was provided to four separate but interrelated program areas: 1) Leadership Education in Neurodevelopmental Disabilities (LEND) training programs, 2) Developmental Behavioral Pediatric (DBP) training programs, 3) State Implementation Programs, and the 4) Research Programs. Table 2 includes a brief description of these four grant programs with amounts expended in FY 2008 and 2009.

Table 2.  HRSA/MCHB activities and amounts expended under the CAAI.

Training Programs

Training Programs

Leadership Education in Neurodevelopmental Disabilities (LEND) training programs

FY 2008: 18 existing grantees received additional funding of approximately $200,000 each per year for 3 years to focus on ASD and other DD and 4 new LEND programs were funded at approximately $550,000 per year for 3 years.

FY 2009: 16 existing LEND grantees received additional funding of approximately $100,000 per year for 2 years and 1 new LEND was funded at $450,000 per year for 2 years.

Training Programs

Developmental Behavioral Pediatrics (DBP) training programs

FY 2008: 6 existing DBP grantees received additional funding of approximately $50,000 per year for 3 years to focus on ASD and other DD.

In addition to these grants, HRSA/MCHB awarded approximately $500,000 FY 2008 and $550,000 in FY 2009 to establish a National Combating Autism Interdisciplinary Training Resource Center to coordinate the training program grantees, provide technical assistance to the training programs, and to ensure coordination between CAAI projects.

Research Programs

Research Programs

MCH Autism Intervention Research Network on Physical Health (AIR-P)

FY 2008: The General Hospital Corporation of Boston received $4 million per year for 3 years to conduct research on interventions to improve the physical health and well-being of children and adolescents with ASD and other DD.

Research Programs

MCH Autism Intervention Research Network on Behavioral Health (AIR-B)

FY 2008: The Regents of the University of California at Los Angeles received $2 million per year for 3 years to conduct research on the behavioral, mental, social, and/or cognitive health and well-being of children and adolescents with ASD and other DD.

Research Programs

MCH Autism Intervention Research Program

FY 2009: 5 grantees received funds of approximately $400,000 per year for 2 years to conduct research leading to improvements in interventions that address the health and well-being of children and adolescents with ASD and other DD.

Research Programs

MCH Autism Intervention Secondary Data Analysis Studies Program (SDAS)

FY 2009: 2 grantees received funds of approximately $100,000 to conduct research leading to improvements in interventions that address the health and well-being of children and adolescents with ASD and other DD utilizing existing secondary data.

State Implementation Program

State Implementation Program

State Implementation Grantees

FY 2008: 6 States received funds of approximately $300,000 per year for 3 years to implement State autism plans and develop models for systems of services for children with ASD and other DD.

FY 2009: 3 States received funds of approximately $300,000 per year for 2 years to implement State autism plans and develop models for systems of services for children with ASD and other DD.

In addition to these grants, HRSA/MCHB awarded $250,000 per year to establish a State Public Health Coordinating Center to coordinate with the State Implementation grantees to develop and implement a strategy for defining, supporting, and monitoring the role of State public health agencies in assuring that children and youth with ASD and other DD receive early and appropriate identification, diagnosis, and intervention.

MCHB has made significant progress toward meeting the five objectives of the CAAI. However, the majority of the grant programs are still in the second year of funding because some CAAI grantees began work in 2009, while others began work in 2010. As such, the full impact of their activities will not be seen until later in the grant period. The data in this progress report provides a preliminary snapshot of the grantees' accomplishments to date. More detailed results will be forthcoming in MCHB's future Report to Congress.

Training Programs

The 39 LEND and 6 DBP training programs that received CAAI grant funding cover 32 States and the District of Columbia, and their reach extends beyond those States, because of partnerships formed and services provided across State lines. To date, their efforts have focused on 1) training health professionals in the use of valid, reliable screening and diagnostic tools and in the provision of evidence-based interventions for children with ASD or other DD and 2) providing continuing education to practicing health care providers and technical assistance to agencies, community based organizations, and other entities that serve women, children, and their families. These training efforts are effectively reducing barriers to screening and diagnosis by increasing professional capacity and increasing awareness about ASD among providers in the community. With the CAAI funding, the training programs have significantly expanded their didactic, clinical, and community-based training activities. In addition, they have increased their recruitment and support of trainees who will obtain instruction and practical experience in screening, diagnostic evaluation, and evidence-based intervention services for children with ASD and other DD. Table 3 shows the increase in the number of trainees enrolled in each program from FY 2009 to FY 2010 when 17 additional LENDs received CAAI funding, as well as the increase in the number of individuals who received didactic or clinical training in the areas of screening, diagnosis, and evidence-based interventions for ASD and other DD. Table 4 shows the number of training events hosted by each program, by fiscal year, and the number of participants at each event.

Table 3. HRSA-supported Trainees by Grant Program in FY 2009 and FY 2010

Number of Trainees by Grant Program 2009 2009 2009 2010 2010 2010

Number of Trainees by Grant Program

Total Trainees

2009

LEND

2009

DBP

2009

Total

2010

LEND

2010

DPB

2010

Total

Total Trainees

Short term

2009 - LEND

*

2009 - DBP

1,137

2009 - Total

1,137

2010 - LEND

5,826

2010 - DBP

2,611

2010 - Total

8,437

Total Trainees

Medium term

2009 - LEND

1,148

2009 - DBP

229

2009 - Total

1,377

2009 - LEND

2,249

2009 - DBP

247

2010 - Total

2,496

Total Trainees

Long term

2009 - LEND

486

2009 - DBP

24

2009 - Total

510

2010 - LEND

1,367

2010 - DBP

24

2010 - Total

1,391

Didactic Training

Didactic Trainees

Medium term

2009 - LEND

916

2009 - DBP

124

2009 - Total

1,040

2010 - LEND

1,529

2010 - DBP

231

2010 - Total

1,760

Didactic Trainees

Long term

2009 - LEND

391

2009 - DBP

24

2009 - Total

415

2010 - LEND

1,019

2010 - DBP

24

2010 - Total

1,043

Practica/Fieldwork**

Practica/Fieldwork**

Medium term

2009 - LEND

317

2009 - DBP

100

2009 - Total

417

2010 - LEND

1,353

2010 - DBP

107

2010 - Total

1,460

Practica/Fieldwork**

Long term

2009 - LEND

219

2009 - DBP

24

2009 - Total

243

2010 - LEND

989

2010 - DBP

24

2010 - Total

1,013

*Data not available
** Trainees who participated in practice/fieldwork that addressed early signs of ASD/DD, screening, diagnosis, and/or evidence-based interventions for ASD/DD.

Table 4. HRSA-supported Training Events and Participants in FY 2009 and FY 2010

Number of Training Events/Participants 2009 2009 2009 2010 2010 2010

Number of Training Events/Participants

University Courses

2009 - LEND

LEND

2009 - DBP

DBP

2009 - Total

Total

2010 - LEND

LEND

2010 - DBP

DPB

2010 - Total

Total

University Courses

Addressing screening tools, diagnostic tools, and/or evidence-based interventions

2009 - LEND

139

2009 - DBP

*

2009 - Total

139

2010 - LEND

369

2010 - DBP

10

2010 - Total

379

University Courses

  Participants reached

2009 - LEND

2,987

2009 - DBP

*

2009 - Total

2,987

2010 - LEND

8,415

2010 - DBP

582

2010 - Total

8,997

University Courses

Addressing advocacy, counseling, and coordination of care

2009 - LEND

*

2009 - DBP

*

2009 - Total

*

2010 - LEND

250

2010 - DBP

6

2010 - Total

256

University Courses

  Participants reached

2009 - LEND

*

2009 - DBP

*

2009 - Total

*

2010 - LEND

4,757

2010 - DBP

137

2010 - Total

4,894

Continuing Education Events

Continuing Education Events

Addressing screening tools, diagnostic tools, and/or evidence-based interventions

2009 - LEND

324

2009 - DBP

*

2009 - Total

324

2010 - LEND

721

2010 - DBP

60

2010 - Total

781

Continuing Education Events

  Participants reached

2009 - LEND

26,478

2009 - DBP

*

2009 - Total

26,478

2010 - LEND

89,092

2010 - DBP

3,160

2009 - Total

92,252

Other Training Events**

Other Training Events**

Addressing screening tools, diagnostic tools, and/or evidence-based interventions

2009 - LEND

1,201

2009 - DBP

*

2009 - Total

1,201

2010 - LEND

1,665

2010 - DBP

82

2010 - Total

1,747

Other Training Events**

  Participants reached

2009 - LEND

62,658

2009 - DBP

*

2009 - Total

62,658

2010 - LEND

51,443

2010 - DBP

2,398

2010 - Total

53,841

*Data not available
** Includes brown bag luncheons, grand rounds, workshops, seminars, or presentations. Does not include Continuing Education events.

The CAAI funding also contributed to a considerable rise in the number of infants and children who were screened or evaluated in grantee-affiliated clinics between FY 2009 and FY 2010. The LEND training program has dramatically improved health professionals' ability to conduct screenings and assessments, and LEND funding has enhanced the capability of the workforce to screen and treat those with ASD. In 2009, the 22 LEND programs that received CAAI funding collectively screened 12,751 infants or children and provided diagnostic evaluation services to 12,390. In FY 2010, the 39 LENDs collectively screened more than 46,000 infants and children and provided diagnostic evaluation services for more than 35,000 infants and children.

Research Programs

MCHB's Autism Intervention Research Programs (AIR) have focused their efforts on supporting research on interventions to improve the health and well-being of children and adolescents with ASD and other DD, developing evidence-based guidelines, and validating tools for interventions. The 11 research studies that are currently in progress are addressing key issues such as diet and nutrition, sleep behaviors, social skills, communication and speech deficits, family well-being, and transitioning to adult life. Six of these studies also address issues specific to underserved populations. The Research Networks are also testing and validating tools that could be used to improve outcome measures of treatment studies in autism, and developing evidence-based guidelines for clinicians in the areas of sleep, gastrointestinal conditions and neurology, and genetic and metabolic screenings. Refer to Table 7 in the Effectiveness and Outcomes of Interventions chapter for a complete list of the research projects currently in progress.

State Implementation Grants

Nine States were awarded implementation grants (Alaska, Illinois, Missouri, New Mexico, New York, Rhode Island, Utah, Washington, and Wisconsin). The State grantees are using their grant funds to implement State autism plans and develop models for systems of services for children with ASD and other DD. State activities have focused on building infrastructure, reducing barriers to care, raising awareness, and enhancing the training available for families of children with ASD and other DD and the professionals who serve them. Although the diversity of grant activities is considerable across the nine States, all have focused on improving access to screening and diagnostic services by building the capacity of the primary care service system and early childhood service providers (such as early intervention and childcare providers) to recognize the signs of ASD and other DD and conduct initial screening and diagnosis. All grantees have active awareness building campaigns, particularly during National Autism Awareness Month (April).

Some State grantees are working to enhance frontline services through either the direct development of medical homes for children with ASD and other DD, enhancing existing medical homes, or helping communities build their local referral systems. Other grantees are focused on developing State or regional infrastructure. Activities at these wider levels include developing online trainings for families and providers that can be accessed at any time, the development of regional referral systems, and working on private insurance and Medicaid policy changes that would make ASD services more accessible. All grantees are either the organizing entity or active participant of a statewide autism taskforce, council, or commission and meet frequently with a core group of partners to achieve project goals.

National Institutes of Health (NIH)

Over the past four years, NIH has undertaken a number of activities to advance research on autism spectrum disorder (ASD) and other related developmental disabilities, as stipulated by the Combating Autism Act (CAA) of 2006, P.L. 109-416. The NIH has also been an active participant in interagency efforts, being represented on the Interagency Autism Coordinating Committee by the NIH Director and the directors of five NIH Institutes and Centers: The Eunice Kennedy Shriver National Institute on Child Health and Human Development (NICHD), National Institute on Deafness and Other Communication Disorders (NIDCD), National Institute of Environmental Health Sciences (NIEHS), National Institute of Mental Health (NIMH), and the National Institute of Neurological Disorders and Stroke (NINDS). This chapter provides details on the coordination and consolidation of the NIH's ASD research efforts under the authority of the CAA, as well as progress and expenditures made by the many NIH Institutes and Centers that contribute to ASD research.

Intra-Agency Coordination

In 1997, at the request of Congress, the NIH formed an Autism Coordinating Committee (ACC) to enhance the quality, pace, and coordination of efforts at the NIH to find a cure for autism. Since then, the NIH ACC has been instrumental in planning trans-NIH research initiatives to advance the understanding of autism. Currently, staff from seven NIH Institutes and Centers (ICs) serve on the committee.19 The NIH ICs represented include the National Center for Complementary and Alternative Medicine (NCCAM), Eunice Kennedy Shriver National Institute on Child Health and Human Development (NICHD), National Institute on Deafness and Other Communication Disorders (NIDCD), National Institute of Environmental Health Sciences (NIEHS), National Institute of Mental Health (NIMH) and National Institute of Neurological Disorders and Stroke (NINDS). The National Institute of Allergy and Infectious Diseases (NIAID) participates but is not a member of the committee. In addition to program staff from each of these ICs, the NIMH Office of Autism Research Coordination (OARC) and the NIMH National Database for Autism Research (NDAR) Office, participate in NIH ACC meetings, keeping NIH program offices abreast of their activities and coordinating on projects of mutual interest. The NIH ACC continually monitors the NIH autism research portfolio and the agency's progress toward meeting the goals of the Interagency Autism Coordinating Committee (IACC) Strategic Plan for ASD Research. The NIH ACC will plan initiatives for FY 2012 and beyond to address gap areas the IACC identifies as it prepares the annual revision to its Strategic Plan.

As part of its mission to advance ASD research, the NIH ACC also coordinates the Autism Centers of Excellence (ACE) program, which focuses on identifying the causes of ASD and developing new and improved treatments. Among its provisions, the CAA emphasized the need for expanding research and improving coordination among NIH centers of excellence focused on ASD. The ACE program comprises 11 research centers and networks at major research institutions and universities across the country. Currently, five NIH Institutes provide funding for ACE centers: NIMH, NICHD, NIDCD, NINDS, and NIEHS. These centers were initially funded in FY 2007 and FY 2008 and will be supported through FY 2013. ACE centers support research on biomarkers, genetic susceptibility, pharmacotherapy, language development, early intervention, and risk and protective factors, while maximizing coordination and cohesion of NIH-sponsored ASD research efforts. A feasibility study for evaluating the centers is near completion.

Table 5. NIH Autism Centers of Excellence Program Funding (Dollars in Thousands)

Institute FY 2007 Actual FY 2008 Actual FY 2009 Actual

Institute

NIMH

FY 2007 Actual

5,240

FY 2008 Actual

8,303

FY 2009 Actual

8,926

Institute

NINDS

FY 2007 Actual

300

FY 2008 Actual

2,192

FY 2009 Actual

1,092

Institute

NIDCD

FY 2007 Actual

1,560

FY 2008 Actual

1,930

FY 2009 Actual

1,930

Institute

NICHD

FY 2007 Actual

8,990

FY 2008 Actual

11,743

FY 2009 Actual

12,491

Institute

NIEHS

FY 2007 Actual

300

FY 2008 Actual

1,044

FY 2009 Actual

2,042

Institute

Total NIH

FY 2007 Actual

16,390

FY 2008 Actual

25,212

FY 2009 Actual

26,481

Table 5 presents NIH expenditures on the Autism Centers of Excellence (ACE) program, which includes centers (P50s), a cooperative agreement (U01), and networks (R01s). Funding totaled $16.4M in FY 2007, $25.2M in FY 2008, and $26.5M in FY 2009, including $1.89 million from FY 2009 ARRA funds.

NIH-wide Research Programs

NIH has initiated activities focused on identifying environmental and genetic risk factors for ASD, as recommended in objectives of the IACC Strategic Plan. For example, the Early Autism Risk Longitudinal Investigation (EARLI) study will explore the impacts and interplay of environmental factors and genetic predisposition in the cause of ASD. About 1,200 mothers of children with ASD will be followed during a new pregnancy and throughout the early life of the new baby. The study holds great promise for advancing understanding of the causes and progression of ASD through extensive data collection on a number of possible ASD environmental risk factors and biomarkers.

NIH has also sponsored several important scientific workshops within the past year on topics of significant interest in the ASD field. In April 2010, NIDCD, NIMH, and NICHD convened a workshop to discuss the state of the empirical knowledge about, and research opportunities regarding the substantial subgroup of children with ASD who have not developed functional verbal language by five years of age. A funding opportunity announcement based on some of the recommendations of the workshop is planned. In August 2010, NICHD and members of the NIH Autism Coordinating Committee convened a symposium to discuss assessment with particular emphasis on children of diverse backgrounds. Finally, in September 2010, NIEHS and Autism Speaks convened a workshop to identify innovative approaches to accelerate research on environmental factors and ASD.

NIH is also contributing to efforts to build a robust ASD research infrastructure. For example, one objective of the IACC Strategic Plan involves donation of brain and tissue samples to biobanks and subsequent access to and use of these biospecimens by ASD researchers. Therefore, NIH is supporting the Eunice Kennedy Shriver NICHD Brain and Tissue Bank for Developmental Disorders program that was expanded in 2009 and funded through FY 2014.

The IACC Strategic Plan also highlights the importance of data sharing and the significant role played by the NIH National Database for Autism Research (NDAR). This database is standardizing data formats across the field and has federated with a number of external database programs, now housing data on thousands of human subjects participating in ASD research projects. NDAR has undertaken numerous activities to meet the objective in Chapter 7 of the IACC Strategic Plan that aims to make 90 percent of human ASD research data available in or through NDAR to autism researchers around the world by FY 2012.

On the NIH campus itself, Federal scientists in several laboratories of the intramural research program are running seven clinical studies on ASD, as well as a screening protocol to provide careful diagnostic evaluations for use in more specific studies, and to evaluate the presence of ASD symptoms in people with known genetic disorders.

In addition to domestic projects, NIH is seeking knowledge related to research on autism spectrum disorders internationally. Through the Fogarty International Center (FIC) trans-NIH research program, 'Brain Disorders in the Developing World,' a collaboration has developed between U.S. scientists and colleagues in India on the etiology and epidemiology of autism through the International Clinical Epidemiology Network (INCLEN).

NIH Funding for ASD Research

NIH funding of ASD research has increased substantially since the passage of the Combating Autism Act in 2006. Starting at $108 million in FY 2006, total ASD funding rose to $196 million in FY 2009 with contributions from the American Recovery and Reinvestment Act (ARRA) passed in February 2009, and then to $218 million in FY 2010 with aadditionalARRA contributions. NIH actively encourages research on ASD through funding opportunity announcements (FOAs), which include investigator-initiated research and targeted research. A number of FOAs have been released to solicit research that will implement the IACC Strategic Plan. Finally, the three standing FOAs that broadly solicit ASD research (PA-10-158, PA-10-159, and PA-10-160) were revised in 2010 to encourage studies that specifically address IACC Strategic Plan objectives.

The arrival of ARRA funds in 2009 provided NIH with a unique opportunity to jumpstart many of the short term objectives in the IACC Strategic Plan. In spring 2009, NIH issued a Request for Applications (RFA), "Research to Address the Heterogeneity of Autism Spectrum Disorders" (RFA-MH-09-170, RFA-MH-09-171, RFA-MH-09-172 and RFA-MH-09-173), a theme taken from the IACC Strategic Plan, to solicit research proposals for potential funding under ARRA. NIH is also supporting ASD research with ARRA funding through the Challenge Grants in Health and Science Research (RFA-OD-09-003) and the Grand Opportunities grants (RFA-OD-09-004). In September 2009, NIH awarded more than 50 autism research grants totaling more than $64 million, in addition to the $132 million awarded to autism researchers through NIH's regular base funding. In FY 2010, NIH committed an additional 58 million to support new autism research, with the ARRA total for both fiscal years amounting to $122 million.20 More information on ARRA is available on the HHS and NIH ARRA websites.

ASD projects funded in FY 2009 and 2010 under ARRA include research on rapid screening instruments, identifying at-risk children, identifying biomarkers for early diagnosis, studying epigenomics to understand how environmental risk factors may interact with the genome to cause ASD, researching services for individuals in urban areas, and understanding autism in the second half of life. Additionally, awards are supporting several innovative genomics studies of ASD, utilizing data from thousands of samples from the NIMH Center for Collaborative Genetic Studies of Mental Disorders and the privately-funded Simons Simplex Collection. These projects represent some of the most ambitious studies to date to identify ASD candidate genes and one of the first attempts to find a diagnostic biomarker. In FY 2010, NIH committed an additional $58 million in ARRA funds and $160 million of base funding, totaling $218 million in autism funding.20

Table 6. National Institutes of Health: Autism Funding FY 2006-2009 (Dollars in Thousands)

Participating Institutes/ Centers FY 2006 Actual FY 2007 Actual FY 2008 Actual FY 2009 Actual Base FY 2009 Actual ARRA FY 2009 Actual Total

Participating Institutes/ Centers

NINDS

FY 2006 Actual

13,524

FY 2007 Actual

10,553

FY 2008 Actual

9,244

FY 2009 Actual Base

9,618

FY 2009 Actual ARRA

4,227

FY 2009 Actual Total

13,845

Participating Institutes/ Centers

NCI

FY 2006 Actual

0

FY 2007 Actual

0

FY 2008 Actual

0

FY 2009 Actual Base

22

FY 2009 Actual ARRA

0

FY 2009 Actual Total

22

Participating Institutes/ Centers

NEI

FY 2006 ActualD

0

FY 2007 Actual

0

FY 2008 Actual

0

FY 2009 Actual Base

0

FY 2009 Actual ARRA

68

FY 2009 Actual Total

68

Participating Institutes/ Centers

NICHD

FY 2006 ActualDD

20,974

FY 2007 Actual

22,353

FY 2008 Actual

26,323

FY 2009 Actual Base

28,001

FY 2009 Actual ARRA

13,809

FY 2009 Actual Total

41,810

Participating Institutes/ Centers

NIEHS

FY 2006 Actual

1,808

FY 2007 Actual

3,679

FY 2008 Actual

3,764

FY 2009 Actual Base

4,369

FY 2009 Actual ARRA

4,931

FY 2009 Actual Total

9,300

Participating Institutes/ Centers

NIA

FY 2006 Actual

328

FY 2007 Actual

887

FY 2008 Actual

666

FY 2009 Actual Base

500

FY 2009 Actual ARRA

0

FY 2009 Actual Total

500

Participating Institutes/ Centers

NIDCD

FY 2006 Actual

5,108

FY 2007 Actual

5,406

FY 2008 Actual

6,269

FY 2009 Actual Base

9,067

FY 2009 Actual ARRA

2,161

FY 2009 Actual Total

11,228

Participating Institutes/ Centers

NIMH

FY 2006 Actual

61,557

FY 2007 Actual

76,658

FY 2008 Actual

55,136

FY 2009 Actual Base

72,386

FY 2009 Actual ARRA

33,477

FY 2009 Actual Total

105,863

Participating Institutes/ Centers

NIAAA

FY 2006 Actual

0

FY 2007 Actual

0

FY 2008 Actual

5

FY 2009 Actual Base

124

FY 2009 Actual ARRA

0

FY 2009 Actual Total

124

Participating Institutes/ Centers

NINR

FY 2006 Actual

249

FY 2007 Actual

241

FY 2008 Actual

237

FY 2009 Actual Base

0

FY 2009 Actual ARRA

0

FY 2009 Actual Total

0

Participating Institutes/ Centers

NHGRI

FY 2006 Actual

818

FY 2007 Actual

821

FY 2008 Actual

0

FY 2009 Actual Base

104

FY 2009 Actual ARRA

0

FY 2009 Actual Total

104

Participating Institutes/ Centers

NCRR

FY 2006 Actual

1,709

FY 2007 Actual

1,209

FY 2008 Actual

811

FY 2009 Actual Base

3,737

FY 2009 Actual ARRA

420

FY 2009 Actual Total

4,157

Participating Institutes/ Centers

NCCAM

FY 2006 Actual

194

FY 2007 Actual

189

FY 2008 Actual

222

FY 2009 Actual Base

0

FY 2009 Actual ARRA

0

FY 2009 Actual Total

0

Participating Institutes/ Centers

FIC

FY 2006 Actual

n/a

FY 2007 Actual

n/a

FY 2008 Actual

188

FY 2009 Actual Base

193

FY 2009 Actual ARRA

0

FY 2009 Actual Total

193

Participating Institutes/ Centers

NHLBI

FY 2006 Actual

n/a

FY 2007 Actual

n/a

FY 2008 Actual

403

FY 2009 Actual Base

403

FY 2009 Actual ARRA

0

FY 2009 Actual Total

403

Participating Institutes/ Centers

NIDDK

FY 2006 Actual

n/a

FY 2007 Actual

n/a

FY 2008 Actual

321

FY 2009 Actual Base

313

FY 2009 Actual ARRA

0

FY 2009 Actual Total

313

Participating Institutes/ Centers

NIGMS

FY 2006 Actual

n/a

FY 2007 Actual

n/a

FY 2008 Actual

341

FY 2009 Actual Base

486

FY 2009 Actual ARRA

426

FY 2009 Actual Total

912

Participating Institutes/ Centers

NLM

FY 2006 Actual

0

FY 2007 Actual

0

FY 2008 Actual

0

FY 2009 Actual Base

0

FY 2009 Actual ARRA

603

FY 2009 Actual Total

603

Participating Institutes/ Centers

OD

FY 2006 Actual

n/a

FY 2007 Actual

n/a

FY 2008 Actual

11,385

FY 2009 Actual Base

5

FY 2009 Actual ARRA

3,847

FY 2009 Actual Total

3,852

Participating Institutes/ Centers

NIBIB

FY 2006 Actual

n/a

FY 2007 Actual

n/a

FY 2008 Actual

404

FY 2009 Actual Base

0

FY 2009 Actual ARRA

0

FY 2009 Actual Total

0

Participating Institutes/ Centers

Roadmap

FY 2006 Actual

2,051

FY 2007 Actual

4,847

FY 2008 Actual

2,358

FY 2009 Actual Base

3,074

FY 2009 Actual ARRA

0

FY 2009 Actual Total

3,074

Participating Institutes/ Centers

Total NIH*

FY 2006 Actual

108,320

FY 2007 Actual

126,843

FY 2008 Actual

118,077

FY 2009 Actual Base

132,402

FY 2009 Actual ARRA

63,969

FY 2009 Actual Total

196,371

* This table presents all NIH expenditures on autism spectrum disorder (ASD), as reported through the NIH Research Portfolio Online Reporting Tool (RePORT). Please note that funding levels prior to 2008 were calculated using the former NIH coding system. The change from the old NIH coding system to the new Research Condition and Disease Categorization (RCDC) system results in what appears to be a decrease in funding in 2008 from 2007, but this only reflects a change in accounting methodology and not an actual decrease in funding. Prior to FY 2008, official data were manually collected and categorized by the NIH Institutes and Centers, compiled by NIH Office of the Director and released to the public. In 2008, the NIH switched to the new RCDC automated system in order to determine in a standardized and consistent way which NIH-funded projects should be categorized into each research category, eliminating the wide variability across the Institutes and Centers in defining the research categories reported.

Substance Abuse and Mental Health Services Administration (SAMHSA)

The Substance Abuse and Mental Health Services Administration (SAMHSA) does not have any programs or funding specifically focused on provisions of the CAA or for individuals on the autism spectrum. SAMHSA did not receive any ARRA funds and so did not implement ARRA-specific programs in 2009 or 2010. The only SAMHSA program that involves individuals with autism spectrum disorders (ASD) is the Comprehensive Community Mental Health Services for Children and Their Families Program (the short title for this program is Child Mental Health Initiative (CMHI)) which is mandated by Congressional legislation to serve children and youth with serious emotional disorders. The service population of this program includes children with autism spectrum disorders.

The CMHI grant program provides funding to develop the infrastructure for a coordinated system of services and supports and to provide services to an eligible population. Children and their families served in this program are provided a full system of family-driven services and supports, delivered in home and community-based settings or in the least restrictive environment. Services are individualized, strengths-based and culturally competent. The system of care includes formal treatments and services and natural and community supports that are wrapped around the child and family to promote full functioning in the community. Services are coordinated by a Child and Family Team that individualizes services to the specific needs of the child.

Children with ASD, compared to children with other diagnoses, were most often referred to CMHI program services because of disruptive behaviors, social interaction difficulties and unusual behavior and less likely referred for drug use, truancy or running away. Some of the children with ASD had family histories of mental illness, substance abuse and domestic violence. In the CMHI treatment population, caregivers reported that over 18 percent of children with ASD had been physically abused and over 16 percent had been sexually abused.

From 2002-2008, 77 CMHI grantees were funded; the breakdown per year is provided below. Each grantee is funded for six years at approximately $9 million dollars in total. There is an ascending match requirement for each grant.
2002 (n=18 communities)
2003 (n= 7 communities)
2004 (n= 4 communities)
2005 (n=25 communities)
2006 (n=5 communities)
2008 (n=18 communities)
TOTAL N=77 grantee communities

Out of 21,967 cases with a diagnosis from these 77 CMHI-funded communities, there were 730 total cases on the autistic spectrum (equivalent to 3.3 percent of all children/youth with a diagnosis served in CMHI).

Department of Education (ED)

The Department of Education (ED) supports programs to develop and implement evidence-based practices for educating children with autism. ED does not receive appropriations under the CAA but does provide services to individuals with ASD under the Individuals with Disabilities Education Act (IDEA). IDEA Part B and Part C authorize formula-based grants to States to improve results for infants, toddlers, children, and youth with disabilities, from birth through age 21. Under IDEA Part C, States must make available appropriate early intervention services to infants and toddlers with disabilities from birth through age 2. Under IDEA Part B, States must make available a free, appropriate, public education to eligible children with disabilities, including children with autism, from ages 3 through 21. In 2008, 292,818 individuals, ages 6-21, received services under the category of Autism.

In 2010, through the Office of Special Education Programs (OSEP), ED funded over 40 ASD-related projects through various programs under Part D of the Individuals with Disabilities Education Act (IDEA). The projects currently under way include grants to institutions of higher education that train professionals at the doctoral and master's levels to increase the supply of highly qualified personnel to work with children ASD.

OSEP also supports the National Professional Development Center on Autism Spectrum Disorders, a multi-university center to promote the use of evidence-based practice for children and adolescents with autism spectrum disorders. The Center operates through three sites that include the Frank Porter Graham Child Development Institute at the University of North Carolina at Chapel Hill, the M.I.N.D. Institute at University of California at Davis Medical School, and the Waisman Center at the University of Wisconsin at Madison. The Center works in coordination with each State's Department of Education, Part C agency, and University Center for Excellence in Developmental Disabilities (UCEDD) to provide professional development to teachers and practitioners who serve individuals from birth through 22 years with autism spectrum disorders.

Through 106 Parent Training and Information Centers across the nation, ED provides training for parents of children with ASD. OSEP also funds technology/media grant projects designed to improve educational and transitional services for children with ASD while in school and as they transition to adulthood.

ED's Institute of Education Sciences (IES) houses the National Center for Special Education Research (NCSER), which supports research designed to improve educational and developmental outcomes for children with disabilities or those at risk for disabilities. NCSER's Autism Spectrum Disorders program funds projects that develop or test the effectiveness of comprehensive preschool and school-based interventions that improve the developmental, cognitive, communicative, academic, social, behavioral, and functional outcomes of children with ASD. Additional grant programs within NCSER support research targeted toward a single outcome of children with ASD (e.g., language or social skills).

Prevalence of Autism Spectrum Disorders

This section addresses Subsection (3) of 399DD: "Information on the incidence of autism spectrum disorder (ASD) and trend data on such incidence since the date of enactment of the CAA of 2006." The CDC surveillance efforts reported in this chapter provide current ASD prevalence information rather than incidence. Incidence measures are typically more limited and indicate the number of newly diagnosed people with a disorder during a specific time period. In comparison, prevalence data indicate the total number of people affected at any given time in the population studied. Given the variability in the age of diagnosis of ASD and that not all children identified by the CDC surveillance efforts have a documented diagnosis, capturing prevalence, rather than incidence, is a more complete method for estimating the impact of ASD in the population. CDC has been tracking the prevalence of developmental disabilities since the early 1980s and of ASD since 1996. To maintain the ability to track trends over time and to ensure the most complete count of the disorder among the population, CDC continues to report prevalence rather than incidence of the condition.

Centers for Disease Control and Prevention (CDC)

CDC's autism surveillance provides important information on the numbers of children affected with ASD and helps describe the characteristics of the population. Surveillance tracks trends over time, and is an essential building block for population-based research—providing clues about potential risk factors that warrant further study. Surveillance also provides critically important data for communities to use when planning for services. Ultimately, surveillance helps evaluate the progress of prevention and intervention programs.

In 2007, CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network published its first report of ASD prevalence. In this study, six ADDM sites (Arizona, Georgia, Maryland, New Jersey, South Carolina and West Virginia) reported the prevalence for children who were eight years old in 2000 (born in 1992).21 An additional eight sites (Alabama, Arkansas, Colorado, Missouri, North Carolina, Pennsylvania, Utah, and Wisconsin) participated in the second study year—determining the prevalence for children who were eight years old in 2002 (born in 1994). The reported prevalence estimates ranged from 1 in 300 to 1 in 100, with an average ASD prevalence of 1 in 150 children.22 In December 2009, CDC and the ADDM Network published an updated report of ASD prevalence estimates. ASD prevalence in 2006 was approximately 1 in 110 8-year-old children living in the 11 communities participating in the 2006 surveillance year. This report also indicated that there were 4.5 times as many boys with ASD than girls. Among children aged 8 years, ASD prevalence was 14.5 per 1,000 males compared with 3.2 per 1,000 females. ADDM also reported that about 40 percent of the children with ASD also had an intellectual disability.1

The prevalence of autism over time (2002-2006 study years)

Data from the 10 ADDM sites with results from multiple surveillance years indicate a significant average increase (57 percent) in identified ASD prevalence in 2006 compared with 2002. The only site not showing a statistically significant increase was Colorado; this was probably attributable to the relatively small population of children aged 8 years in the surveillance area and the slightly lower magnitude of change, limiting the power to detect change compared with other sites. On average, ASD prevalence increased across all sex, racial/ethnic, and cognitive functioning subgroups. For all sites, the most consistent pattern was the increase in identified ASD prevalence for males, with some sites showing better identification among some groups of children, such as those without intellectual disability or children of Hispanic ethnicity. No single factor explains the changes identified in ASD prevalence over time and much needs to be done to understand the relative contribution of the multiple factors involved, although some of these increases can be accounted for by improved identification and awareness. Understanding the relative contribution of multiple factors is important and efforts to further understand these contributions are underway. Whether identified ASD prevalence estimates will plateau, decrease, or continue to increase is unknown and continued examination of ASD prevalence changes is important.

Looking towards the future

CDC has been working to develop methods to track the population characteristics of ASD in younger children. In 2010, CDC funded six sites to expand ADDM methodology to younger cohorts. Through Early ADDM surveillance of ASD among 4-year-old children, CDC can better understand the population characteristics of young children affected by ASD and better inform early identification efforts. To understand ASD prevalence, it is important to identify children who have the diagnosis and children who have the symptoms (but do not have a diagnosis). The ADDM Network uses a retrospective record review methodology and casts a wide net to ensure the most accurate estimate of prevalence. Expanded surveillance of 4-year-olds can provide a more complete picture of the impact of ASD; however, it is particularly important to note that because methods are dependent on record review, prevalence estimates are impacted by the age at which children receive services. Continued monitoring of ASD among 8-year-olds, which we know is "peak prevalence," or the age at which most children have been identified, is essential to understanding the complex changes occurring in ASD over time.

Average Age of Diagnosis

This section addresses Subsection (4) of 399DD: "Information on the average age of diagnosis for children with ASD and other developmental disabilities, including how that age may have changed over the 4-year period beginning on the date of enactment for this Act." Average age of diagnosis information and data are provided by the CDC.

Centers for Disease Control and Prevention (CDC)

Before a child can be diagnosed with ASD, someone needs to be concerned about their development. The Autism and Developmental Disabilities Monitoring (ADDM) Network has found that there are often significant concerns early in life about the child's development, but that there is a lag in actual diagnosis of ASD by community professionals. In the 2002 ADDM surveillance year, more than half (range: 51.0 percent to 91.4 percent) of children meeting surveillance criteria for ASD by age 8 years had documentation of concerns about the child's development before the age of 3 years.22 The most commonly documented early developmental concern was for language skills, followed by social concerns. By the surveillance year 2006, there were still concerns documented about the vast majority of children with ASD in all sites (range: 70 percent [Maryland] to 95 percent [Alabama]); however, the age of this concern went down to 2 years of age or earlier, on average. The most commonly documented early developmental concern was still language delay.1 Despite these early concerns before the age of 2 and 3 years, the median age of earliest ASD diagnosis was 4 years, 11 months in 2002 and 4 years, 6 months in 2006.

From 2002-2006, the median age of earliest documented ASD diagnosis decreased in all sites ranging from a decrease of 1 month in Wisconsin to 15 months in Alabama with an overall trend across all sites of a reduction of approximately 5 months. However, these data indicate a greater than two year gap from developmental concern to diagnosis, indicating a dire need for improved access to early evaluation and diagnostic services.

Disparities in identification

Access to appropriate educational and health services improves a child's chance of being identified by the ADDM Network surveillance system, and disparities may be reflected in the observed prevalence among some groups. In all four ADDM Network surveillance years to date (2000, 2002, 2004, 2006), some but not all, sites have reported significant disparities in the identified prevalence of ASD among Black children as compared to White children. Since 2002, some but not all sites have identified significantly higher prevalence in White children compared to Hispanic children as well, although in 2006 one site observed a higher prevalence in Hispanic children as compared to either white or black children. One report on ADDM data published in 2010 suggests that these disparities in identified prevalence may be associated with socioeconomic status.23 Differences in heritable factors as well as exposure to various risk and protective factors may also influence differences in identified prevalence among certain groups, so ongoing monitoring is needed to better understand these factors. CDC supports the Healthy People 2020 objective of increasing the proportion of children who are screened for autism and other developmental delays at 18 and 24 months of age and have a first evaluation by 36 months of age. For those with ASD, CDC supports increasing the proportion of children that are enrolled in special services by 48 months of age.

Average Age for Intervention

This section addresses subsection (5) of 399DD: "Information on the average age for intervention for individuals diagnosed with ASD and other developmental disabilities, including how that age may have changed over the 4-year period beginning on the date of enactment of this Act." Information and data on the average age for intervention in ASD cases is provided by the CDC.

Centers for Disease Control and Prevention (CDC)

The ADDM Network reports the average age of diagnosis, which may be used as a rough proxy for initial intervention (see above). As noted, there has been some reduction in the age of ASD diagnosis, but significant delays still exist. Although an ASD diagnosis is not required to begin intervention, knowing that a child's developmental disability is consistent with ASD may inform the appropriateness and type of intervention applied. In 2006,1 the ADDM Network reported that children identified with ASD were slightly more likely to be classified with ASD by community professionals (physicians, psychologists, special education teams, etc.) as compared with 2002 findings22 (72 percent in 2002 to 77 percent in 2006). This may indicate that more children are able to receive ASD-specific intervention, including children eligible for special education services under IDEA Part B. For the 2006 surveillance year, 76 percent to 96 percent of children were receiving special education support from the public schools, with 34 percent to 76 percent receiving these services under a classification of "autism." Other common special education eligibilities included "specific learning disabilities," "speech and language impairments," "other health impairments," and "intellectual disabilities," with these proportions also varying by site. Many children who did not have an ASD diagnosis recorded in their record as of 2006 were receiving special education and related services in the pubic schools under IDEA Part B through an autism eligibility. In addition to community professionals providing diagnosis, public schools are playing a crucial role in evaluating, identifying, and serving children with ASD.

Average Time Between Screening, Diagnosis, and Intervention

This section addresses section (6) of 399DD: "Information on the average time between initial screening and then diagnosis or rule out for individuals with ASD or other developmental disabilities, as well as information on the average time between diagnosis and evidence-based intervention for individuals with ASD or other developmental disabilities." Information and data on the average time between ASD screening and diagnosis or rule out is provided by the CDC.

Centers for Disease Control and Prevention (CDC)

As noted above, someone must be concerned about a child's development before an ASD evaluation can be conducted. In the latest ADDM Network report, there was documentation of concerns about development for 70-95 percent of the children identified with ASD; however, the median age of ASD diagnosis was 4 years, 6 months of age, indicating a significant delay between evidence of concerns and diagnosis.1 Although the ADDM Network does not currently collect data on developmental screening, the establishment of the Early ADDM Network in 2010 will further enhance our understanding of the early developmental concerns and a child's path to diagnosis. In an effort to address delay in diagnosis of ASD and other developmental disabilities and to promote early intervention, CDC's "Learn the Signs. Act Early." program continues to work to improve early identification of ASD and other developmental disabilities, and to enhance communication and coordination among State and local systems providing services to children with developmental delays.


Effectiveness and Outcomes of Interventions

This section addresses subsection (7) of 399DD:  Information on the effectiveness and outcomes of interventions for individuals diagnosed with autism spectrum disorder, including by various subtypes, and other developmental disabilities and how the age of the child may affect such effectiveness.  Information on the effectiveness of outcomes and interventions is provided by AHRQ, CMS, HRSA, NIH, and ED.

Agency for Healthcare Research and Quality (AHRQ)

Under the Combating Autism Act, the Agency for Healthcare Research and Quality (AHRQ) does not receive any appropriations, and therefore has no direct program or research responsibilities funded by CAA.  However, AHRQ programs have contributed substantially to research on the effectiveness of intervention strategies in ASD, including:

Completed Projects:

  1. In 2007, AHRQ published a systematic review of research studies on atypical antipsychotics and found that the most common off-label uses of the drugs were for treatment of autism among other personality and behavioral disorders.24  It concluded that, with few exceptions, there was insufficient high-quality evidence overall to reach conclusions about the efficacy of any off-label indications for these medications.  It also found strong evidence that atypical antipsychotics can increase chances of adverse events. In 2007 a clinician guide was published. The report is now in the process of being updated.

  2. An AHRQ supported study (Grant HS 16097) characterized national trends and patterns using 10 years of data in the outpatient pharmacological management of children and adolescents with autism spectrum disorder (ASD).25

  3. In response to requirements of the Deficit Reduction Act of 2005 (P.L. 109-171), in 2007 AHRQ published the Environmental Scan of Measures for Medicaid Title XIX Home and Community-Based Service Final Report, which identified existing and home and community-based services (HCBS) quality measures in the domains of client functioning, client satisfaction, and program performance that could potentially be used to assess the quality of Medicaid HCBS programs nationwide. The report identified Standards for the Development of Lifelong Supports and Community Resources for Persons with Autism Spectrum Disorder and their Families, as one existing set of HCBS quality measure that can be used to assess services for people with autism and their families, and this document can be obtained from the Commission on Accreditation of Rehabilitation Facilities (CARF), an independent, nonprofit accreditor of health and human services.26

  4. In 2009, AHRQ created a report describing a practical approach to creating a school-based all-hazards emergency response plan from the national literature in combination with "lessons learned" in the field.27 This publication addresses the needs of children with ASD and their families.

Ongoing Activities:

  1. AHRQ is systematically reviewing the global English literature since 1980 on therapies for children (2-12 years) with ASD and those under 2 years of age and at risk of developing ASD.  The review will be looking for short term and long term outcomes of the interventions in social interactions, language and communications, adaptive and academic skills development, etc.  The review was begun in 2009 and will be completed in 2011.  Information about the study design and methodology are available in the research protocol.

  2. AHRQ is also currently supporting a systematic review of the comparative effectiveness of first and second generation antipsychotics in the pediatric and young adult population.  The objective of this Comparative Effectiveness Review (CER) is to provide a comprehensive synthesis of the evidence examining the benefits and harms associated with first and second generation antipsychotics while treating disorders/illness including ASD among children, youth, and young adults.  The review will conclude in 2011.

  3. An update to AHRQ's earlier review24 of comparative effectiveness of off-label use of antipsychotics will be carried out according to a protocol released by AHRQ in 2010.  An update of the original report is necessary (see above).  Further, the review will address two key questions that remained unclear due to insufficient information in the previous study:  the subpopulation (i.e., race/ethnicity, gender) that would benefit most from atypical antipsychotics, and appropriate dose and time limit.
Centers for Medicare & Medicaid Services (CMS)

The Centers for Medicare & Medicaid Services' (CMS) Autism Spectrum Disorders (ASD) Services Final Report on Environmental Scan (PDF – 2 MB) includes intervention categories and descriptions, evidence-based interventions for children, emerging interventions, unestablished interventions, and the same categories for transitioning youth and adults.  It also includes an intervention-specific analysis and addresses the economic impact of ASD.16

Office on Disability (OD)

The Office on Disability has been actively involved with the work of the IACC Services Subcommittee.  The office provided extensive input to enrich the 2010 IACC Strategic Plan to focus on issues related to access to and quality of health services and supports provided to people with autism, with particular attention to adults with autism.  The office also recommended the identification of what interventions work best, what are the gaps in access and provision of quality health services and supports, and the development of quality improvement interventions that focus on the functional limitations experienced by those with autism.  The Office on Disability also emphasized the need to bring additional expertise to the committee membership to include health services researchers.

Health Resources and Services Administration (HRSA)

HRSA's Maternal and Child Health Bureau (MCHB) used a variety of funding mechanisms to provide training grantees, State agencies, and the public with information on the effectiveness of interventions for individuals with ASD and other developmental disabilities (DD).  The MCHB Autism Intervention Research Network program, initially funded in September 2008, includes support for two networks, one focusing on physical/medical health interventions ( the MCHB Autism Intervention Research Network on Physical Health (AIR-P) ) and another focusing on behavioral, mental, social, and/or cognitive health interventions ( the MCHB Autism Intervention Research Network on Behavioral Health (AIR-B) ).  These networks were designed with a goal of developing two self-sustaining multi-site research networks to advance the scientific knowledge base on interventions and guidelines that will be disseminated broadly to the public, including clinicians, researchers and families, and result in improved health and well-being of children and adolescents impacted by ASD and other DD.  The R40 grant programs, which include the Autism Intervention Secondary Data Analysis Studies (SDAS) Program and the MCHB Autism Intervention Research Program, were established 1 year later to support research on evidence-based practices for ASD interventions.   The R40 Grant program has provided support for two 1-year grants and five 2-year grants.  At present, the research studies being conducted by the Research Networks and the R40 grantees are still in progress; as such, further detail on the study findings will be provided in MCHB's forthcoming Report to Congress.

In the first 2 years of the grant, the research programs have implemented a total of 11 studies on interventions for children with ASD in the following topic areas:  diet and nutrition, sleep behaviors, social skills, communication and speech deficits, family well-being, transitioning to adult life, and underserved populations.  A summary of these studies is provided in Table 7.  The research studies being conducted range from randomized controlled designs, considered the gold standard in research, to studies using secondary data analysis methods.  These studies also focus on various age groups, including pre-school-aged children (2-5 years of age), school-aged children (5-7 years of age), and individuals transitioning to adulthood.  Most of the studies are targeting children from underserved populations, which is particularly important because, up to now, little evidence has been gathered on the effectiveness of interventions for underserved children with ASD.

Table 7. HRSA Research Studies on Interventions for Children with ASD

Research Program Study Title Purpose Anticipated Final Products

Research Program

AIR-P

Study Title

Diet and Nutrition in Children with Autism Spectrum Disorders: An Autism Treatment Network Collaborative Study

Purpose

Gastrointestinal complaints, feeding difficulties, restricted food interests, and food allergies are widely reported among children and adolescents on the autism spectrum. These issues are thought to be linked to problem behaviors and sleep disturbances. This study is investigating the food and supplement intake of children and adolescents with ASD. Researchers plan to examine the correlation between nutritional status and medical and behavioral symptoms, with the goal of developing a nutritional screening tool and educational materials for nutritional counseling in primary care settings.

Anticipated Final Products

Tool for nutritional screening of children with ASD in primary care settings

Educational materials for nutritional counseling in primary care settings

Peer-reviewed publications

Research Program

AIR-P

Study Title

Development of a Parent-Based Sleep Education Program for Children With Autism Spect rum Disorder

Purpose

Sleep disturbances are among the most common medical conditions reported by parents with children on the autism spectrum. Children with ASD are known to suffer from a number of sleep problems including delayed sleep onset, night waking, early awakening, obstructive sleep apnea, sleep epilepsy and reduced need for sleep. The study compares two nurse-led parent education interventions to potentially impact the sleep and night-time behaviors of children with ASD.

Anticipated Final Products

Screening tool

Detailed implementation manual for preferred intervention

Peer-reviewed publications

Research Program

AIR-B

Study Title

Parent-Mediated Joint Engagement Intervention

Purpose

A significant number of children with autism continue to make very slow progress in spoken communication. This study examines an intervention for underserved children with autism. This study is using a randomized controlled multi-site design to examine the effectiveness of a parent training model of joint attention/joint engagement in building social communication skills in toddlers with ASD.

Anticipated Final Products

Treatment manuals from study

Reports on outcome findings from study

Peer-reviewed publications

Research Program

AIR-B

Study Title

Peer Social Skills/ Relationship Intervention at School

Purpose

The outcome of the study will determine if working through parents is effective enough to change school peer interactions and friendships or if direct peer-mediated instruction at school is necessary. This study examines an intervention for underserved children with autism. The purpose is to assess a social skills intervention among 150 high functioning ASD elementary school children who are in general education and who do not often receive school based services.

Anticipated Final Products

Treatment manuals from study

Reports on outcome findings from study

Peer-reviewed publications

Research Program

AIR-B

Study Title

Web-Based Social Skills Intervention

Purpose

The study was developed to reach underserved children with ASD who live in rural and underserved areas. The project developed a web-based delivery of social skills instruction. The target population is 3rd-to 5th-grade students.

Anticipated Final Products

Treatment manuals from study

Reports on outcome findings from study

Research Program

AIR-B

Study Title

Teen-Based Social Skills Intervention in Schools

Purpose

This study involves an upward extension of the Peer Social Skills/ Relationship Intervention at School study (#4 above) to underserved middle school and high school students with ASD.

Anticipated Final Products

Treatment manuals from study

Reports on outcome findings from study

Peer-reviewed publications

Research Program

MCH Autism Intervention Research Program

Study Title

Supporting the Well-being of Families of Young Children With Autism Spectrum Disorders

Purpose

This study determines whether an evidence-based empowerment strategy targeted to mothers of young children with ASD promotes family well-being by decreasing the burden of maternal depressive symptoms and parenting stress and improving maternal social functioning.

Anticipated Final Products

Academic study

Peer- reviewed publications

Research Program

MCH Autism Intervention Research Program

Study Title

Parent-Mediated vs. Center-Based Intervention for Toddlers With ASD: A Randomized Control Trial

Purpose

This study evaluates whether a parent-mediated intervention and center-based intervention provided by a clinician yield comparable outcomes for minority and underserved toddlers with ASD.

Anticipated Final Products

Academic study

Peer- reviewed publications

Research Program

MCH Autism Intervention Research Program

Study Title

Family-Centered Transition Planning for Students With Autism Spectrum Disorders

Purpose

This study demonstrates a Family-Centered Transition Planning model designed to empower families and high school students with autism spectrum disorders transitioning to adult life.

Anticipated Final Products

Academic study

Peer- reviewed publications

Research Program

MCH Autism Intervention Research Program

Study Title

Telehealth Delivery of a Family-Focused Intervention to Reduce Anxiety in Youth With Autism Spectrum Disorders in Rural Colorado

Purpose

This study develops and evaluates the use of interactive televideo technology to deliver a promising mental health intervention to families of children with ASD who are geographically removed from specialty medical centers.

Anticipated Final Products

Academic study

Peer- reviewed publications

Research Program

SDAS

Study Title

The Effectiveness of Special Education Services for Children With Autism: A National Longitudinal Study

Purpose

This study assesses the effectiveness of special education services for children with ASD by measuring the effect of high quality treatment on outcomes.

Anticipated Final Products

Academic study

Peer- reviewed publications

The Research Networks are also actively developing evidence-based clinical practice guidelines to support clinicians in decision-making, diagnosis, management, and treatment of children with ASD.  Although these guidelines are not, in themselves, interventions, they are critical for accurate identification and treatment of physical and behavioral conditions in children with ASD, which is a necessary prerequisite for effective intervention.  The Networks are also working on developing tools designed to assist physicians and families in managing the care of children with ASD.  These tools may, for example, help physicians to quickly assess a child's engagement level on the playground, or help parents manage their child's sleep behavior.  These guidelines and tools are summarized below in Table 8.

Table 8. HRSA Development of Clinical Guidelines and Tools

Research Program Topic Area Overview Anticipated Final Products

Research Program

AIR-P

Topic Area

Gastrointestinal Conditions: Constipation, Chronic Diarrhea, Food Allergies

Overview

Gastrointestinal (GI), or stomach and digestive problems, are a major concern for many families of children affected by autism. To increase the ability of pediatricians and other doctors to treat the GI conditions that often trouble children with autism, the Autism Treatment Network's (ATN) GI committee has been drafting algorithms for Constipation, Chronic Diarrhea and Food Allergies. Because constipation seems to be a common issue for children with ASD, the committee has made a priority of finalizing and testing the constipation algorithm.

The constipation algorithm guides pediatricians in diagnosing and treating the condition and helps them determine when it is appropriate to refer on to a GI specialist. It also helps GI specialists choose the right treatment approaches. This flow diagram has been adapted from the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) guideline (Constipation Guideline Committee, 2006) which was developed for typically developing children with constipation. Supporting text and tools will be tailored to inform pediatricians on how to address these issues in children with ASD. The chronic diarrhea algorithm assists pediatricians in diagnosing, treating, and deciding whether to refer a child to a GI specialist, and it assists the GI specialist in the accurate diagnosis and categorization of specific conditions and the treatment and intervention options to consider. The food allergies algorithm helps pediatricians recognize GI symptoms commonly associated with food allergy and to distinguish between food allergies and symptoms of other GI conditions. A tool is also being developed that will help physicians answer parents' questions.

Anticipated Final Products

Algorithm for diagnosing and treating constipation, chronic diarrhea, and food allergies in children with ASD

Tool for answering parents' questions about food allergies

Research Program

AIR-P

Topic Area

Managing Sleep Behavior

Overview

Children with ASD are known to suffer from a variety of sleep problems including delayed sleep onset, night waking, early awakening, obstructive sleep apnea, sleep epilepsy, and reduced need for sleep. The ATN Sleep Committee has produced a draft algorithm for physicians and a Draft Guideline for Evaluation of Sleep Problems in Children with Autism Spectrum Disorders. The algorithm is focused mainly on managing insomnia and is intended to guide general pediatricians in carrying out the initial diagnostic and treatment steps and help them determine when to refer the family to a sleep specialist.

To accompany the algorithm the ATN Sleep Committee is developing a sleep hygiene toolkit, which will assist physicians in screening sleep disorders and parents in managing their child's sleep behavior. This toolkit will include an ATN Sleep Strategies guide, which addresses sleep behavior in children under the age of 12, and a Sleep Log. A sleep strategies guide for adolescents with ASD is currently in the early testing stages as well.

Anticipated Final Products

Guideline for evaluation of sleep problems in children with autism spectrum disorders

Sleep hygiene toolkit

Research Program

AIR-P

Topic Area

Neurological, Genetic and Metabolic Screenings

Overview

ASD are neurologically based and many children with ASD have neurological abnormalities. About 30 percent of children with ASD suffer from seizure disorders such as epilepsy. In addition, metabolic abnormalities are sometimes identified in children with ASD. The ATN's Neurology-Genetics-Metabolics Committee has been focused on compiling guidelines to inform pediatricians about when certain diagnostic tests are necessary. The committee has drafted flow diagrams indicating red flags for the use of the electroencephalogram (EEG) to measure the brain's electrical activity, and magnetic resonance imaging (MRI) to look at the brain itself.

Anticipated Final Products

Guidelines for diagnostic testing

Research Program

AIR-B

Topic Area

Playground Engagement Tool

Overview

The AIR-B is developing a set of observational measures that can be used on a school playground to assess and measure whether a child with ASD is engaged or not. The tool is supported by Web-based manuals and a video. One tool, called playground observation peer engagement (POPE), is a fairly elaborate tool to assess playground engagement; the AIR-B is trying to simplify it so that it can be used more quickly and easily.

Anticipated Final Products

Tool for quickly assessing playground engagement with peers

Research Program

AIR-P

Topic Area

Behavioral Treatments Toolkit

Overview

The AIR-P also has under development a behavioral treatments toolkit that focuses on toileting, ABA (Applied Behavioral Analysis) basics for parents, behavior management basics, and feeding and diet.

Anticipated Final Products

Behavioral treatments toolkit

Research Program

AIR-B

Topic Area

Psychological and Related Interventions for Children with Autism

Overview

The AIR-B has conducted a systematic, extensive review of the evidence around the impacts of various interventions on identified core deficits in autism. Further, the effectiveness of these interventions in children and adolescents has been documented in the Evidence Report.

Anticipated Final Products

Evidence report

Guidelines on evidence-based practices

Finally, MCHB funded a variety of studies that help to identify factors involved in a successful intervention.  These studies are investigating issues related to identification and treatment of physical and behavioral problems common in children with ASD, as well as services for children and youths with ASD who are transitioning to adulthood.  The studies are listed below in Table 9.

Table 9. HRSA Research to Identify Successful Intervention Factors

Research Program Topic Area Overview Anticipated Final Products

Research Program

AIR-P

Topic Area

Bone Mineral Density in Children with Autism Spectrum Disorders

Overview

This study investigates the degree to which bone mineral density is impaired in children with autism and to explore specific additional risk factors.

Anticipated Final Products

Practice guidelines/toolkits

Peer-reviewed publications

Research Program

AIR-P

Topic Area

Prevalence of Creatine Deficiency Syndromes and Genetic Variability in Creatine Metabolism in Children with ASD: A Pilot Study

Overview

This study is the first comprehensive population?based study looking at the prevalence of Creatine Deficiency Syndromes in autism in a diverse ethnic group.

Anticipated Final Products

Practice guidelines/toolkits

Peer-reviewed publications

Research Program

AIR-P

Topic Area

Markers of Iron Status and Metabolism in Children with ASD

Overview

This study evaluates iron intake, iron status and associated sleep disorders in a large, well characterized sample of children with ASD.

Anticipated Final Products

Practice guidelines/toolkits

Peer-reviewed publications

Research Program

AIR-P

Topic Area

Defining the Relation of Sleep Disturbance in Autism Spectrum Disorder to Psychiatric and Behavioral Co?morbidities

Overview

This study defines the psychiatric and behavioral comorbidities associated with disordered sleep in children with ASD.

Anticipated Final Products

Practice guidelines/toolkits

Peer-reviewed publications

Research Program

MCH Autism Intervention Research Program

Topic Area

Assessing a Participant
Directed Service System for Low Income Children with Autism

Overview

This study evaluates a Medicaid supportive services waiver program in Massachusetts that uses a participant direction model to choose and manage services for young children with ASD and their families.

Anticipated Final Products

Academic study

Peer-reviewed publications

Research Program

SDAS

Topic Area

Services and Outcomes for Transition Age Young Adults with Autism Spectrum Disorders: Secondary Analysis of the NLTS2 and RSA 911

Overview

This study identifies factors associated with and influencing a successful transition into adulthood for young adults with ASD.

Anticipated Final Products

Academic study

Peer-reviewed publications

National Institutes of Health (NIH)

The National Institutes of Health (NIH) has undertaken a number of activities to address the effectiveness and outcomes of interventions for individuals diagnosed with ASD, including randomized, controlled studies of behavioral and medical treatments.  While behavioral interventions have been previously shown to be effective, research since 2006 has demonstrated the impact of implementing behavioral interventions for children before age 3.  A randomized comparison of a modification of Applied Behavioral Analysis (ABA) versus typical community-based treatment for children as young as 18 months resulted in significantly greater improvement over two years.  In this NIH-supported study, the group receiving the modified early intervention showed more than double the increase in IQ (average increase of 17.6 points) and greater gains in adaptive behavior relative to usual care.  These results support the importance of intervening early and demonstrate that aggressive behavioral treatment can be an effective treatment for many children with ASD, conferring improvements in social behavior.28

Regarding medical treatments for ASD, research since 2006 has mostly focused on symptoms of irritability and repetitive behaviors. In a 2005 study of the NIH-supported Research Units on Pediatric Psychopharmacology Autism Network, researchers performed an 8-week, multisite, double-blind, randomized trial of risperidone in 101 children with ASD.  The researchers reported that a relatively low dose of risperidone improved irritability, hyperactivity, and stereotyped behavior. Treatment effects were maintained over 16 weeks of treatment, and discontinuation of the medication resulted in return of behavioral symptoms. Side effects included weight gain and mild to moderate fatigue in about half of the children.29 Several studies have since been conducted, including a follow-up study of 38 of those children who were receiving either risperidone or a placebo, which showed that risperidone does not negatively affect cognitive skills of children with autism and may lead to improvements. Authors recommended prescribing with caution, however, due to potential metabolic side effects of the medication.30, 31  Importantly, a separate NIH-funded study demonstrated that adding a parent training program to the use of risperidone for severe behavior disturbances in ASD was more beneficial than medication intervention alone and allowed for maintenance on a lower dose of the medication.32

The Research Units on Pediatric Psychopharmacology Autism Network also conducted a randomized, double-blind, placebo-controlled trial of methylphenidate in children with ASD and high levels of hyperactivity and/or impulsiveness (ages 5 to 14 years), published in 2005.  Doses at the 0.25 and 0.5 mg/kg level were effective in reducing hyperactivity and impulsivity, but less effective in reducing inattention, at 4 weeks and after 8 weeks continuation.  The response rate was about 35 percent compared to typical response rates of around 70 percent in children with attention deficit hyperactivity disorder, but no pervasive developmental disorders.  About 18 percent of subjects withdrew due to side effects, primarily irritability.  The authors noted that some children responded best to lower doses of methylphenidate.33  In 2007, a secondary study of methylphenidate in children with ASD showed significant improvements in hyperactivity and impulsivity, with lesser effects on inattention.34, 35  In another NIH-supported study, a multisite investigation with 149 children with ASD and high levels of repetitive behavior (ages 5 to 17 years) evaluated the efficacy of citalopram in reducing those behaviors.  In 12 weeks of treatment with a flexible dose schedule, citalopram did no better than placebo in the primary outcome measures.  Adverse events were significantly more likely to occur in the citalopram-treated group.36

Regarding dietary interventions for ASD, results of an early NIH-supported study suggest that dairy-free diets and unconventional food preferences could put boys with ASD at higher than normal risk for thinner, less dense bones when compared to a group of boys the same age who do not have ASD.  Risk for poor bone development may be due to lack of exercise, reluctance to eat a varied diet, lack of vitamin D, digestive problems, and diets excluding casein, a milk protein.  It may be beneficial for parents of children with ASD to include a dietitian in their care.37

Department of Education (ED)

The National Center for Special Education Research (NCSER), within the Department of Education's Institute of Education Sciences (IES), supports projects to develop innovative education interventions or improve existing interventions. These projects require an iterative process of designing, testing, revising, and testing to produce a product or system that functions with fidelity and can be implemented in actual education delivery settings (e.g., schools), and must provide a preliminary evaluation of outcomes. For example, one NCSER-funded project is developing a 3D-based virtual learning environment to enhance the social competence of middle school students with ASD.  Another project is developing a school-based summer treatment program to address the cognitive, communicative, social, and behavioral needs of elementary school age students with high-functioning ASD.

Innovative Intervention Strategies

This section addresses subsection (8) of 399DD:  "Information on the effectiveness and outcomes of innovative and newly developed intervention strategies for individuals with autism spectrum disorder or other developmental disabilities."  Information on innovative intervention strategies is provided by AHRQ, CMS, HRSA, and the NIH.

Agency for Healthcare Research and Quality (AHRQ)

In 2009, the Agency for Healthcare Research and Quality (AHRQ) initiated support for research (R01 HS18453-01; PI-Stephen Downs, Indiana University) to demonstrate that a computer decision support program, CHICA (Child Health Improvement through Computer Automation), will provide much needed computer decision support to implement clinical guidelines in pediatric practice.  This study will include a randomized trial in which screening, diagnosis, and management of ASD before and after implementation of the CHICA system in intervention practices will be compared to control practices.  The study will conclude in 2013.

Centers for Medicare & Medicaid Services (CMS)

The Centers for Medicare & Medicaid Services' (CMS) Autism Spectrum Disorders (ASD) Services Final Report on Environmental Scan (PDF – 2 MB) includes intervention categories and descriptions, evidence-based interventions for children, emerging interventions, unestablished interventions, and the same categories for transitioning youth and adults.  It also includes an intervention-specific analysis and addresses the economic impact of ASD. 16

Health Resources and Services Administration (HRSA)

The Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau (MCHB) Autism Intervention Research Networks and R40 Grant Programs were established to conduct and support research on ASD, including physical/medical health interventions as well as behavioral, mental, social, and/or cognitive health interventions.  Many of the studies are investigating the effectiveness of newly developed interventions for children and families affected by ASD and other developmental disabilities.  Because the grantees are either in their first or second year of funding, most of the research studies are still in progress, so outcome data is not yet available.  Detailed and updated findings will be provided in MCHB's forthcoming Report to Congress.  Below, we provide two examples of studies that are currently evaluating the effectiveness of particularly innovative interventions for individuals with ASD.  The first study is testing a new intervention aimed at changing the peer relationships of children with ASD in their natural environments.  The second study described below is investigating the use of telemedicine to deliver an intervention to rural families.  The complete list of interventions being evaluated can be found in Table 7.

Peer Social Skills Interventions for Underserved Children with Autism in Schools

The Autism Intervention Research on Behavioral Health (AIR-B) is conducting a randomized, controlled trial to compare an experimental peer-mediated social skills intervention to a standard practice parent-mediated intervention among 200 high-functioning elementary school children (ages 5-7) with ASD.  The study aims to determine if peer-mediated social skills instruction at school is effective in addition to parent-mediated instruction in increasing peer interactions and friendships.  The experimental intervention is innovative in two primary ways.  First, it aims to change children's peer relationships in their natural environments.  This is an important innovation because generalization of existing lab-based social skills interventions to children's natural environments remains poor.  Second, the intervention is targeted to children with ASD who are typically underserved, including low-income children and children from racial/ethnic minority groups.  This aspect of the study is important because these groups of children have much less access to evidence-based interventions and typically receive parent-based education interventions, hypothesized to be less effective.

Telehealth Delivery of a Family-Focused Intervention to Reduce Anxiety in Youth with Autism Spectrum Disorders in Rural Colorado

This 2-year study is being conducted at the University of Colorado School of Medicine.  The aim of this study is to develop and evaluate an innovative strategy to improve access to a mental health intervention and reduce clinically significant anxiety for families of youth with ASD in rural and underserved areas.  This intervention is innovative in its use of telemedicine to deliver a promising mental health intervention to families of children with ASD who are geographically removed from specialty medical centers.  Through the use of interactive video technology, families can participate from home and therapists can participate from their offices.

National Institutes of Health (NIH)

The National Institutes of Health (NIH) has undertaken a number of activities to address the effectiveness and outcomes of innovative and newly developed intervention strategies for individuals diagnosed with ASD or other developmental disabilities.  NIH established an intramural research program to accelerate development and testing of innovative treatments.  This program has already evaluated over 500 children and tested three novel compounds:  riluzole (a glutamate antagonist approved for amyotrophic lateral sclerosis), minocycline (an antibiotic which is also anti-inflammatory), and donepezil (a cholinergic drug used for Alzheimer's disease).  The program is also studying children from around the nation who have recovered from ASD to detect novel interventions that may be effective in subsets of those with ASD.  More information on these studies is available at: 
http://clinicaltrials.gov/ct2/show/NCT00251303?term=riluzole+and+autism&rank=1
http://clinicaltrials.gov/ct2/show/NCT00409747?term=minocycline+and+autism&rank=1
http://clinicaltrials.gov/ct2/show/NCT01053156?term=minocycline+and+autism&rank=2
http://clinicaltrials.gov/ct2/show/NCT00695136?term=donepezil+and+autism&rank=1
http://clinicaltrials.gov/ct2/show/NCT00047697?term=donepezil+and+autism&rank=2
http://clinicaltrials.gov/ct2/show/NCT01098383?term=donepezil+and+autism&rank=3

NIH also supports an Autism Center of Excellence (ACE) network with a long-term goal of understanding the underlying biology of ASD, which would then be used to develop new and better treatments for ASD.  Brain imaging studies have shown abnormalities in the synthesis of the neurotransmitter serotonin during critical developmental periods in children with ASD, suggesting that normalizing serotonin signaling may alleviate symptoms of the disorder.  Building on this finding and a small pilot trial, the ACE network is conducting a multisite clinical trial to further test the safety and efficacy of buspirone, a drug that stimulates serotonin signaling, as an intervention in children less than 6 years of age with ASD.  Another NIH-supported clinical trial recently suggested the efficacy of divalproex sodium (an FDA-approved drug used to treat epilepsy, bipolar disorder, and migraine) for treating irritability in children and adolescents with ASD.38

Although these findings are promising for young children with ASD, there is limited evidence when considering intervention programs or treatment options for older children, adolescents, and adults with ASD.  To address this challenge, a small NIH-funded, randomized, controlled trial tested the efficacy of the "Program for the Education and Enrichment of Relational Skills" (PEERS) for adolescents with ASD.  This group-based intervention integrates parents into the program to help with generalization of skills into the home and community.  Results of this study demonstrated benefits in social skills and increased frequency of peer socialization.39 To treat anxiety in high-functioning ASD, NIH-funded researchers conducted a randomized, controlled trial of cognitive behavioral therapy (CBT) in 7- to11-year-old children with ASD, demonstrating the benefit of CBT in reducing anxiety symptoms.40

Adult Services and Supports

This section addresses subsection (9) of 399DD: "Information on services and supports provided to individuals with autism spectrum disorder and other developmental disabilities who have reached the age of majority (as defined for purposes of section 615(m) of the Individuals with Disabilities Education Act (20 U.S.C. 1415(m))." Information on ASD adult services and supports is provided by the Administration on Children and Families (ACF), the Centers for Medicare & Medicaid Services (CMS), the Health Resources and Services Administration (HRSA), and the Department of Education (ED).

Administration for Children and Families (ACF)

Under the Combating Autism Act, the Administration for Children and Families (ACF) /Administration on Developmental Disabilities, (ADD)) does not receive any appropriations, and therefore has no direct program or research responsibilities funded by CAA.

However, ADD programs do serve and support people with autism in several ways with resources appropriated under The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (P.L. 106-402), including:

State Councils on Developmental Disabilities (SCDD) (FY 2010 $75M)

Each State has a Developmental Disabilities Council (DDC) supported by ACF's Administration on Developmental Disabilities (ADD) that functions to increase the independence, productivity, inclusion, and community integration of people with developmental disabilities, including individuals with autism. The councils are composed of key stakeholders, including individuals with developmental disabilities, parents and family members, and representatives of state agencies and non-governmental organizations that provide services to people with developmental disabilities. DDC activities demonstrate new ideas for enhancing people's lives through training activities, through community education and support, by making information available to policy-makers, and by working to eliminate barriers to full participation in education, employment, and community living.

Protection and Advocacy Agencies (P&A) (FY 2010 $41M)

Each State has a Protection and Advocacy (P&A) Agency supported through ACF/ADD to empower, protect, and advocate on behalf of persons with developmental disabilities, including individuals with autism. The P&As are independent of service-providing agencies and offer information and referral services for legal, administrative, and other remedies to resolve problems for individuals and groups of clients. P&As enhance the quality of life of people with developmental disabilities by investigating incidents of abuse and neglect and discrimination based on disability. The P&As also provide an annual opportunity for the public to comment on the objectives, priorities, and activities of the system. This gives clients and others in the community an opportunity to voice their concerns and needs to the P&A.

University Centers for Excellence in Developmental Disabilities Education, Research and Services (UCEDD) (FY 2010 $39M)

The University Centers for Excellence in Developmental Disabilities Education, Research and Services (UCEDD) is a grant program of the ACF/ADD that provides support to a national network of University Centers to support interdisciplinary training, exemplary services, technical assistance, and information/dissemination activities. University Centers positively affect the lives of individuals with developmental disabilities, including individuals with autism, and their families by increasing their independence, productivity, and integration into communities. University Centers have four broad tasks: conduct interdisciplinary training, promote community service programs, provide technical assistance at all levels (from local service delivery to community and State governments), and conduct research and dissemination activities.

Projects of National Significance (PNS) (FY10 $14M)

The Projects of National Significance (PNS) program, administered by the ACF/ADD, awards grants and contracts that promote and increase the independence, productivity, inclusion, and integration into the community of persons with developmental disabilities. These projects focus on the most pressing issues for people with developmental disabilities across the country. These projects may involve data collection and analysis, research, technical assistance, projects which improve supportive living and quality of life opportunities, projects to educate policymakers, and efforts to create interagency Federal collaboration.

From the PNS funds, the AutismNOW National Autism Resource and Information Center (FY 2010 $1.88M) will be established in 2011, providing access to high-quality resources and information on community-based services and interventions for people with ASD and their families, through a national dissemination network, regional events, training and technical assistance, and an innovative web presence.

Centers for Medicare & Medicaid Services (CMS)

Three major laws, the Deficit Reduction Act (DRA) of 2005 (P.L. 109-171) (PDF – 43 KB), the Children's Health Insurance Program Reauthorization Act of 2009 (CHIPRA) (P.L. 111-3), and the Affordable Care Act of 2010 (P.L. 111-148) have had or will have an effect on services and supports provided to youth and adults with ASD and other developmental disabilities. The DRA, through the Family Opportunity Act, permitted States to optionally permit parents with specified income who have disabled children and youth to "buy-in" to Medicaid. It also established an opportunity for States to offer home and community-based services (HCBS) to people with disabilities, instead of requiring the traditional Medicaid "waiver." The DRA also established the Money Follows the Person Rebalancing (MFP) and Community-Based Alternatives to Psychiatric Residential Treatment Facilities for Individuals under age 21 (PRTF) Demonstrations, which may impact some people with ASD by expanding their ability to access HCBS.

The CHIPRA reauthorization expanded the program and provided additional funding for States to offer coverage through Medicaid and the Children's Health Insurance Program (CHIP) to low-income children and young adults. CHIPRA also provided outreach grant funding that may impact youth with developmental disabilities and ASD and enhanced funding for interpretation and translation. CHIPRA requires States to include dental services in State CHIP plans (as well as Medicaid), establishes improved quality measures, and increases support for electronic health records.

The Affordable Care Act expanded the parameters of the HCBS State plan option and established the Community Living Assistance Services and Supports (CLASS) Plan and the Community First Choice Option to support community living. The MFP Demonstration was also extended. Several other provisions of the Affordable Care Act will impact people with ASD and developmental disabilities, including improvements in access to health care, greater focus on improved quality and service delivery, "balancing" incentives for States to rely more on HCBS and less on institutional care, and improved quality measures for children, youth, and adults enrolled in Medicaid and CHIP. New delivery models with the potential to improve services include Accountable Care Organizations, an optional health home benefit in Medicaid, medical homes for people with chronic conditions, enhancements to the health/supportive services workforce, and screening and background checks for employees of long-term care facilities.

Of particular note are the changes made to Section 1915(i) of the Medicaid State plan, which include an optional benefit for States to serve people in integrated settings and ‘target' particular populations (e.g., "people with ASD"). Under this option, a State could choose to provide services to people with ASD who do not meet the institutional "level of care" requirements in typical HCBS programs.

CMS has strived to meet its obligation to people with developmental disabilities and ASD in other ways, including spotlighting its efforts to promote State compliance with the Olmstead decision and the Americans with Disabilities Act (ADA) (P.L. 101-336). CMS offers technical assistance to States serving people with disabilities and ASD to improve the design, quality, and operation of programs, with an emphasis on enlarging capacity for full community inclusion. The Medicaid program also offers focused technical assistance for States that want to create or continue programs for people with ASD. CMS has recently highlighted its efforts to provide States with information on the use of managed care delivery systems; established strong partnerships with an array of entities at the Federal, State and local levels to encourage affordable housing; performed outreach to stakeholders to develop guidance on community-based services and waiver streamlining; and encouraged States to utilize Medicaid alternatives that promote self-determination, offer self-direction, and make caregiver and peer supports available. CMS is also in the process of refining its data collection process to include an improved array of data regarding Medicaid beneficiaries, including those with ASD.

Health Resources and Services Administration (HRSA)

Many of the HRSA-supported Leadership Education in Neurodevelopmental Disabilities (LEND) training programs and State Implementation grantees are engaged in efforts to improve support systems for older youths with ASD and other developmental disabilities (DD) in successfully transitioning to adulthood. In FY 2010, 28 of the 39 LENDs were involved in research, technical assistance, training, service delivery, or the development of educational materials pertaining to postsecondary education, employment, independent living, health care, and other issues of consideration for transition-age young adults. These same grantees generated over 70 products, including book chapters, conference presentations, print brochures, DVDs, and websites dedicated to disseminating information about interventions and resources to assist older youths with ASD/DD and their families in transition planning and effectively navigating the steps towards more independent living.

One current LEND project involves the delivery of a social and vocational support group and job training program for young adults between the ages of 18 and 30 with Asperger syndrome and high functioning Autism. The "Aspirations" program is aimed at providing young adults on the autism spectrum with a support network that can help them with their social and emotional adjustment to adult life. In addition to offering the program through the affiliated University Center for Excellence in Developmental Disabilities (UCEDD), one LEND program is working on expanding the program to include an adolescent component. Another LEND program has been involved in the development and dissemination of a widely used curriculum, called "My Future, My Plan: A Transition Planning Resource for Life After High School," to assist students, parents, and professionals in planning for a successful transition to adulthood. The curriculum includes a DVD, a discussion guide for students and families, a student workbook, and a guide for family members and teachers. Another LEND is actively involved in the development of a gender equitable self-directed education to employment model to enable young women with disabilities to direct their own education and transition paths; to gain skills, experience, and support in nontraditional vocational areas; and to achieve competitive employment outcomes in their chosen careers. The curriculum is currently being field-tested in 21 schools. A middle school version focusing on transitioning to high school is also being pilot-tested. Finally, several LEND programs are conducting research studies pertaining to transition issues and services. As an example, one study used data from the National Survey of Children with Special Health Care Needs (NS-CSHCN) to evaluate the role of family-centered care on health related transition counseling for youth with Special Health Care Needs in clinical settings. HRSA supports two research projects addressing the needs of young adults transitioning into adult life. One study demonstrates a family-centered transition planning model, designed to empower families and transitioning students to take a leading role in the process of transition planning. A second study, using secondary data sources, conducts descriptive and predictive analyses of the factors associated with and influencing a successful transition into adulthood for young adults with ASD.

The State Implementation grantees are working towards improving services and supports through system-based changes. Examples of progress to date include: coordination and planning of training summits for State agencies and providers who serve youths with ASD and other developmental disabilities (Alaska); development of a model resource center for adults with ASD and their families and planning for a multistate conference focusing on transition to adulthood (Illinois); development and dissemination of resource guides for families to assist them in arranging a successful transition to adult services (Missouri, Washington); a training module for transitioning-age youths focusing on education, health, and employment (Missouri); development of a portable medical summary of a young adult's pediatric care for the adult health care provider (Rhode Island); expansion of a State Medical Home portal to include information on transition services (Utah); and formation of practice groups to conduct research on how to improve the delivery of care, including how the system can be improved for youth transitioning to adulthood (Washington).

Substance Abuse and Mental Health Services Administration (SAMHSA)

SAMHSA has developed a toolkit to implement the evidence-based program, "Supported Employment," which is a system of services and supports for people with disabilities to enable them to secure and maintain jobs in the community. "Supported Employment" builds on the concept of "jobs first" or "place and train," which is different from traditional vocational rehabilitation and sheltered workshop concepts. This program provides job coaches, development and retention, assistive technology, specialized job training, and individually tailored supervision. It also includes both development of employment opportunities and ongoing support for individuals to sustain employment. "Supported Employment" has made it possible for individuals with moderate to severe levels of disabilities to become active, productive wage-earners in the mainstream workforce.41

Department of Education (ED)

Although the U.S. Department of Education (ED) does not receive appropriations under the Combating Autism Act, ED does contribute significantly to ASD-related services and supports. The Rehabilitation Services Administration (RSA) and the National Institute on Disability and Rehabilitation Research (NIDRR) are located within the Office of Special Education and Rehabilitative Services (OSERS) at the Department of Education.

The Rehabilitation Services Administration (RSA)

The Department of Education's Rehabilitation Services Administration (RSA) oversees grant programs that help individuals with physical or mental disabilities to obtain employment and live more independently through the provision of such supports as counseling, medical and psychological services, job training and other individualized services.

RSA's major Title I formula grant program authorized by the Rehabilitation Act of 1973 (P.L. 93-112), as amended, provides funds to state vocational rehabilitation (VR) agencies to provide employment-related services for individuals with disabilities, giving priority to individuals who are significantly disabled. In 2009, 6,434 individuals with autism were served and the VR program assisted 2,314 individuals with autism to achieve an employment outcome.

RSA's Regional Continuing Education programs and Technical Assistance and Continuing Education programs have developed materials and conducted trainings in recent years to improve preparation of VR counselors who serve individuals with autism. In 2007, the RSA-funded Institute on Rehabilitation Issues published the guide, Rehabilitation of Individuals with Autism Spectrum Disorders(PDF – 1.6 MB) The document identifies issues and conditions for effective transition from school to work, training, or postsecondary education; describes strategies for building effective partnerships between academic, training, health, housing, and other community-based social programs and agencies; improves VR counselors' and employers' knowledge about employment opportunities; and reports evidence-based strategies for effective job development, placement, and retention.

The National Institute on Disability and Rehabilitation Research (NIDRR)

The Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR) provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities. NIDRR's mission is to generate new knowledge and promote its effective use to improve the abilities of people with disabilities to perform activities of their choice in the community and also to expand society's capacity to provide full opportunities and accommodations for its citizens with disabilities. Toward this end, NIDRR conducts comprehensive and coordinated programs of research and related activities to maximize the full inclusion, social integration, employment, and independent living of individuals of all ages with disabilities.

NIDRR funds research projects that specifically focus on autism. Within their field-initiated research program, NIDRR has projects that are investigating how technology can be used to support an individual's access and participation in community settings. For example, one project is examining how families can access effective intervention services for their young children with autism through telemedicine and online training programs while another project is examining the use of video-conferencing for accessing effective intervention practices. NIDRR is also funding model projects that conduct research on vocational rehabilitation service models for individuals with autism. One of the model projects is creating a knowledge translation initiative to address the growing need for improvement in vocational rehabilitation and transition services that link to successful employment outcomes for individuals with autism. Another model project is examining the impact of community-based work experiences on the employment outcomes of youth with autism, as well as postsecondary school participation and ultimate employment of college students with autism.


 
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