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Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 - FY 2012)

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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 AHRQ, CMS, ED, DoD, HRSA, NIH, and SAMHSA.

Agency for Healthcare Research and Quality (AHRQ)

  • AHRQ's Health Care Innovations Exchange notes 11 examples of "Innovations in autism management and QualityTools." For instance, the Exchange provides as an example of how a nonprofit organization enhances access to medical and dental care for both adults and children with disabilities by helping them to overcome their fears. A snapshot of how this program was used with a 48-year-old man with autism is provided on the program website.
  • In 2012, AHRQ released a set of guidelines for recognition, referral, diagnosis and management of adults on the autism spectrum. The guidelines provide advice to practitioners and professional teams who may be working with adults on the spectrum and to family partners and carers about how to potentially identify ASD in adults, how to identify the correct interventions and monitor their use, and how to organize and deliver care for an adult.

Centers for Medicare & Medicaid Services (CMS)

In 2010, CMS issued a report entitled Autism Spectrum Disorders (ASD) Services Final Report on Environmental Scan This link exits the Interagency Autism Coordinating Committee Web site (PDF - 2 MB) , which describes the results of an extensive literature review conducted of the scientific evidence regarding the efficacy, effectiveness, safety, and availability of ASD-related Medicaid-funded services and supports that support daily living for people of all ages with ASD.62 The report includes service categories and descriptions, evidence-based services 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. The scan highlighted the lack of research into effective services for adults, and interventions that can be implemented successfully in the community. CMS expended approximately $191,000 related to activities to complete the Environmental Scan.

In 2011, CMS issued a report on a nine-state study entitled, Report on State Services to Individuals with Autism Spectrum Disorders (ASD) (PDF - 884 KB), which assessed 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 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 that states and localities encounter in the administration of programs that serve people with ASD. Approximately $198,000 was expended on activities related to the Nine-State study.

Department of Defense (DoD)

To improve the lives of adults currently living with ASD, the Autism Research Program (ARP) has invested in research by Drs. Daniel Cox and Ronald Reeve from the University of Virginia to enhance driving skills of individuals with ASD. This research orients around the use of a virtual reality training device that was developed in a previous ARP-funded study by Dr. Cox. The current study looks to train, evaluate, and enhance driving skills of high functioning autistic individuals to promote independence and higher quality of life.63

Department of Education (ED)

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 U.S. Department of Education. 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. Once determined eligible for vocational rehabilitation, an individual with ASD could access any of the services listed under section 103(a) of the Rehabilitation Act of 1973, as amended, if such services were determined necessary to help such an individual achieve the employment goal specified in the individualized plan for employment.

RSA's major Title I formula grant program authorized by the Rehabilitation Act of 1973, 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.

The National Institute on Disability and Rehabilitation Research (NIDRR)

The Department of Education's 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 also funds research projects that specifically focus on ASD and the transition to adult life. The Westbrook group at Southwest Educational Development Laboratory (SEDL) is collaborating with the Center for Autism and Related Disabilities at the University of Central Florida (UCF CARD) to study which vocational rehabilitation services are effective in increasing employment success for people with ASD. The Wehman group at Virginia Commonwealth University is testing whether specific vocational rehabilitation services are beneficial in improving employment and post-secondary education of those with ASDs. They are examining intensive, community-based work experience, impact of personal digital assistants, and their longitudinal effects on employment outcomes. The Wehman group is also testing the efficacy of a 9-month internship in improving employment outcomes for individuals with ASD. Lastly, the Dague group at the University of New Hampshire is developing a process to implement Family-Centered Transition Planning to improve persons with ASD participation in postsecondary education, employment, and long-term planning. The following section describes each of the NIDRR-funded adult services studies organized by year.

Department of Education NIDRR Adult Services Studies

2008

SEDL's Vocational Rehabilitation Service Models for Individuals with Autism Spectrum Disorders: This link exits the Interagency Autism Coordinating Committee Web site For this project, SEDL partners with the Center for Autism and Related Disabilities at the University of Central Florida (UCF CARD) to create a knowledge translation initiative to address the growing need for improvement in vocational rehabilitation (VR) and transition services for persons with ASD. SEDL and UCF CARD conduct a multifaceted set of research activities to identify and document VR and transitional behavior management practices that are linked to employment successes for people with ASD, to identify factors that are strongly predictive of such success, to study the activities and impact of a statewide VR service provider network, and to document examples of success among individuals with ASD in long-term employment placements.

Vocational Rehabilitation Service Models for Individuals with Autism Spectrum Disorders (VCU ASC Career Links): This link exits the Interagency Autism Coordinating Committee Web site VCU ASD Career Links conducts evidence-based research on vocational rehabilitation (VR) service models for individuals with ASD. The project is based at Virginia Commonwealth University (VCU) and is a collaborative initiative between VCU and the Virginia Department of Rehabilitative Services (DRS). The scope of research covers four areas: (1) the impact of intensive, community-based work experiences on the employment outcomes of youth with ASD; (2) the postsecondary school participation and ultimate employment of college students with ASD; (3) the impact of personal digital assistants (PDAs) on the employment outcomes of individuals with ASD; and (4) a longitudinal analysis of VR service delivery and employment outcomes among DRS clients with ASD.

2011

Sustainable Implementation of Family-Centered Transition Planning for Young Adults with Autism Spectrum Disorders: This link exits the Interagency Autism Coordinating Committee Web site This project develops a sustainable process for implementing a Family-Centered Transition Planning model for youth and young adults with ASD. Based on research demonstrating the effectiveness of Family-Centered Transition Planning in increasing student and parent expectations for adult life, student career decision-making, and student participation in employment and postsecondary education, this project develops an implementation package to embed this method of independent transition planning into the existing service and funding system on a long-term basis across multiple states.

2012

Facilitating Employment for Youth with Autism: A Replication Study of an Internship Model to Identify Evidence Based Practices: This link exits the Interagency Autism Coordinating Committee Web site This project is designed to determine the efficacy of a 9-month hospital-based internship intervention for transitioning young adults with ASD. This internship program, based on the Project SEARCH model, is currently being tested and evaluated in a randomized clinical trial at two Bon Secours Hospitals in Richmond, Virginia. The intervention consists of two components: (1) 900 hours of onsite training over 9 consecutive months at the host hospital site, and (2) training and support provided by employment specialists with expertise in autism, applied behavior analysis, supported employment, and business networking.

Health Resources and Services Administration (HRSA)

To support youth with ASD in making the transition to adult health care services, employment, and independence, State Implementation Grantees (SIGs) developed electronic information resources (e.g. Web sites, resource guides, and training modules), hosted conferences on transition, and conducted workshops targeting individuals with ASD, their families, educators, and health care providers. The table below highlights several transition-related resources that state grantees developed in partnership with several stakeholders, including other CAA grantees.

The LEND and DBP training programs have addressed the need for transition services and supports for individuals with ASD in several ways. The University of Minnesota LEND has incorporated a seminar focused on transition services into its didactic curriculum. Trainees at the Ohio State University LEND participate in the development of educational and/or health transition plans in coordination with families, educators, and self-advocates.

Some curricular and clinical activities focused on transition have resulted in the development of new materials for families or new clinical policies. The Yale DBP program has focused on transition planning for children with DD in its Guidelines Seminar, where clinic policies are developed, implemented, and evaluated. Through this seminar, the program developed new materials for families and new interventions during its clinic, in conjunction with a social worker and families of children with DD. Trainees at the LEND and DBP program at the Children's Hospital of Philadelphia have developed and implemented community-based projects focused on the transition to adulthood; one trainee is working to expand the program's Transition to Adulthood and Employment services to a community-based provider of employment services for individual disabilities, while another trainee is investigating supports at universities and colleges for children with ASD who want to transition to higher education.

The LEND and DBP training programs are also partnering with other entities to address the need for more services focused on transition to adulthood in the broader community. The University of Pittsburgh LEND, for example, initiated transition-planning services within the community by hosting a conference on transition planning, collaborating around transition with community organizations and state agencies, and offering CMEs in health care transition planning. Trainees from the Dartmouth LEND collaborated with the Center for Medical Home Improvement to support the MCH-funded program "Got Transition?" This link exits the Interagency Autism Coordinating Committee Web site a national health care transition center. Through this collaboration, trainees have developed practice guidelines and readiness materials regarding health care transition. Finally, the Children's Hospital of Boston DBP has leveraged NIH funding to develop a new initiative entitled "Project Opening Doors," This link exits the Interagency Autism Coordinating Committee Web site which is a partnership with 10 multicultural community organizations aimed at improving identification, education, integration, and transition of children and youth with DD.

An R40 grant, Transition to Adult Services for Youth with Autism Spectrum Disorder, developed a resource on transition for persons with autism, a list of online tools This link exits the Interagency Autism Coordinating Committee Web site (PDF - 212 KB) to help families and youth learn how to make smooth change to adult healthcare. Several other R40 grants focus on the needs of transition age youth; one developed and tested an intervention on family-centered transition planning that demonstrated significant gains in empowering families to taking leadership in the process of transition planning. The findings of these studies will add to the evidence-base on effective services and supports that will benefit the health and well-being of adolescents and young adults transitioning to adulthood.

ASD Resources Developed by HRSA State Implementation Grant (SIG) Grantees

Resource Description
Electronic Resources Missouri's SIG developed a Web site for families and service providers entitled "Roadmap to the Future: Transitioning into Adulthood With ASD." This transition Web site was ranked as one of the 3 best Web sites in the country for youth with ASDs by Autism After 16.
Electronic Resources Vermont's SIG developed the "ASD Transition Guide" Web site. This link exits the Interagency Autism Coordinating Committee Web site The Web site includes sections for young adults, parents, and professionals. The Web site also aims to identify medical homes for young adults transitioning to adult healthcare. Vermont Family Network and the Howard Center have agreed to work collaboratively to continue to expand and maintain the transition guide past the end of the contract.
Electronic Resources Hawaii developed the "Patient-Centered Medical Home Transition Checklist and the ASD PCMH Care Plan – Initial Transition Plan" and the "ASD Transition Checklist." This link exits the Interagency Autism Coordinating Committee Web site
Electronic Resources Rhode Island developed the "RI DOH Pediatric to Adult Healthcare Transition Guidance and Checklist." (PDF - 128 KB)
Training Resources Missouri's SIG developed the "Autism Spectrum Disorders: Transition to Adulthood" training module. This 1-hour training highlights five major areas of transition that need to be addressed for youth as they move toward adulthood. The module was targeted toward families and service providers.
Training Resources Hawaii's SIG‐T provided technical assistance and training to families and professionals (including case managers, special education teachers, children with special health care needs coordinators) on issues surrounding the transition to adulthood.
Training Resources New Jersey's SIG hosted countywide "Transition to Adult Systems of Care" teleconferences. Participants received a "Transition to Adult Life" information packet, a "Transition Resources" CD, a "Transition Resources for Health Practitioners" packet, and "Youth Transition" workbooks.

Table 24. State Implementation Grantees (SIG)-developed electronic and training resources.

National Institutes of Health (NIH)

Research that develops innovative services for people with ASD is essential to improving their quality of life

In the area of ASD services, an American Recovery and Reinvestment Act (ARRA)-funded grant created the JobTIPS This link exits the Interagency Autism Coordinating Committee Web site website to provide young people with ASD and their families with helpful tips and information on developing job skills, such as interviewing, interacting with supervisors and co-workers, and using effective and appropriate ways of communicating at work. The website also offers resources to clinicians and therapists who support people with ASD, as well as parents, educators, and job coaches. JobTIPS is one of the first online employment resources tailored to people with autism that promotes their efforts toward independence and self-determination. To date, JobTIPS is visited by over 30,000 new users each month and at least 25 schools in the nation have implemented the site into a curriculum for high school seniors. In North Carolina, JobTIPS will be implemented in a full curriculum for students with ASD.

Substance Abuse and Mental Health Services Administration (SAMHSA)

SAMHSA developed and continues to offer 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 toolkit promotes the use of 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.

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NIH publication No. 14-8012

Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 – FY 2012). February 2014. Retrieved from the Department of Health and Human Services Interagency Autism Coordinating Committee website at: http://iacc.hhs.gov/reports/reports-to-congress/FY2010-2012/index.shtml

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