Health Resources and Services Administration Autism Spectrum Disorder Activities

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1 Health Resources and Services Administration Autism Spectrum Disorder Activities Through the Combating Autism Act, HRSA s Maternal and Child Health Bureau (MCHB) funded coordinated investments to enable infants, children and adolescents who have, or are at risk for developing, ASDs and other developmental disabilities to reach their full potential by: Developing a system of services that includes screening children early for possible ASD and other developmental disorders; Conducting early, interdisciplinary, evaluations to confirm or rule out ASD and other developmental disorders; and Providing evidence-based, early interventions when a diagnosis is confirmed. MCHB funds three program areas in interdisciplinary training, autism intervention research, and state implementation grants, as well as a national evaluation examining the impact of all program areas. Interdisciplinary Training Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) To address the shortage of health care professionals who are qualified to provide screening and diagnostic evaluation for ASD and other DD, 43 LEND programs in 37 states support long-term, graduate level interdisciplinary training as well as interdisciplinary services and care. LEND faculty and trainees represent a wide variety of disciplines, including pediatrics, family practice, nursing, public health, social work, nutrition, speech-language pathology, audiology, pediatric dentistry, psychology, occupational therapy, physical therapy, health administration, special education, genetics, and parents of children with neurodevelopmental disabilities and individuals with special. With Combating Autism Act funding, LEND programs expanded the number of professionals in the pipeline who are qualified to provide screening and diagnostic evaluation for ASD by increasing the number of trainees enrolled in their programs, increasing the number of trainees that received ASD-focused didactic training, providing more clinical training opportunities focused on ASD screening and diagnosis, and providing continuing education to practicing pediatricians and other professionals who had limited experience identifying ASD in children. Developmental-Behavioral Pediatrics (DBP) Training Program DBP is a subspecialty of pediatrics that focuses on developmental and behavioral issues in children, and these pediatricians provide diagnosis and treatment for a wide range of developmental and/or behavioral disorders, including autism. Through the 10 supported DBP

2 training programs, DBP fellows receive specialized training over the course of a three-year fellowship to become developmental-behavioral pediatricians. National Interdisciplinary Training Resource Center MCHB funds a cooperative agreement with the Association of University Centers on Disability (AUCD) to operate a National Interdisciplinary Training Resource Center that provides technical assistance and coordination to the interdisciplinary training programs. Through resource development, information dissemination, partnership development and data analysis, the Center enhances training grantees capacity to utilize valid and reliable screening tools and provide evidence-based interventions for children with ASD and other developmental disabilities. Autism Intervention Research Maternal and Child Health HRSA s Maternal and Child Health (MCH) research investments in ASD include critical efforts that address the health care needs and improve services that result in improved health and wellbeing of children and adolescents with ASD and other developmental disabilities and their families. Consistent with HRSA s mission as the access agency to provide services to underserved populations, these autism intervention research programs have a critical role in addressing the needs of underserved populations and barriers to receipt of evidence-based interventions. Autism Intervention Research Networks on Behavioral Health and Physical Health The Autism Intervention Research Networks on Behavioral Health (AIR-B) and Physical Health (AIR-P) conduct research on evidence-based practices, develop and update guidelines, validate tools for interventions, disseminate critical information, develop and mentor new investigators in the field of ASD and other developmental disabilities, and foster the transfer of network findings to promote the implementation of evidence-based practices. The AIR-P Network has built a strong collaborative network of researchers and clinicians across 14 sites in the U.S. and Canada. Key activities of the network are also conducted through collaboration with families, national organizations, and other HRSA-supported autism programs. The AIR-P Network has implemented 11 multi-site research studies addressing the most pressing symptoms associated with underlying medical conditions including sleep problems, gastrointestinal disorders, nutritional deficiencies and metabolic conditions. The AIR-P Network has developed guidelines addressing insomnia and constipation in children with ASD and is actively engaged in developing additional guidelines and toolkits for practitioners and families. The AIR-B Network has built a strong collaborative network of researchers across seven sites within the U.S. In addition to the development of treatment guidelines for social, adaptive, and communication issues associated with ASD, the AIR-B Network has also developed tools for use in assessing children s social engagement and communication skills. They have also implemented four multisite research studies designed to improve children s joint attention and engagement across everyday activities, as well as their social skills with peers.

3 Developmental Behavioral Pediatrics Research Network The Developmental Behavioral Pediatrics Research Network (DBPNet) has established a collaborative multi-center scientific and clinical research network that promotes coordinated research activities and addresses health issues for children with ASD and other developmental disabilities across 12 sites. Furthermore, the DBPNet builds a developmental behavioral pediatric research infrastructure and national research agenda that supports multidisciplinary research, focuses on the translation of research to practice and provides the environment in which to train a new generation of developmental behavioral pediatric researchers. The DBPNet is currently conducting studies on clinical practice variation, research training in DBP fellowship programs, and feasibility of electronic health record data in describing clinical practice. MCH Autism Intervention Research and Secondary Data Analysis Studies Programs TheMCH Autism Intervention Research and Secondary Data Analysis Studies Programs conduct research on evidence-based practices for interventions to improve the health and well-being of children and adolescents with autism spectrum disorders and other developmental disabilities. State Implementation Grants Since 2008, MCHB has awarded 22 grants through the State Implementation Grants. The purpose of this program is to improve access to comprehensive, coordinated health care and related services for children and youth with ASDs and other developmental disabilities. Evaluation Table A Number of new Years States Grantees/States Funded AK, WA, IL,MO, UT, WI NM, NY, RI VT, ME, HI, NJ CO, OH, ND, MS, CT MD, TN, DE, GA (State Planning Grants) Total 22 States MCHB conducted a three year study of its autism focused programs that received Combating Autism Act funding in FY Data used from this study contributed to the HHS Secretary's Report to Congress on progress related to ASDs and other developmental disabilities as required by the Combating Autism Act of Below are highlights of the results and accomplishments. Training Programs (39 LEND and six DBP grantees included in the study) Trained close to 2,500 medium-term and 1,400 long-term trainees ( ). In 2011, the number of medium- and long-term trainees increased by 13% and 22%. Provided close to 92,000 children with interdisciplinary, team-based diagnostic evaluations for ASD. The number of children evaluated increased by 24% between 2009 and 2011.

4 Between and , the number of medium-term trainees enrolled in ASD-focused coursework increased by 8.2% and the number of long-term trainees increased by 13.6%. 1,500 medium-term trainees and more than 1,100 long-term trainees participated in clinical practica covering ASD screening, diagnostic evaluation, and/or intervention. 1,600 continuing education events implemented pertaining to ASD ( ). More than 4,000 outreach trainings ( ) related to valid and reliable screening and diagnostic tools, and/or evidence-based interventions for ASD and other developmental disabilities implemented. Developed and/or disseminated close to 2,000 ASD-related educational products to the public. Offered workshops for parents of children with ASD, and called upon parents to educate trainees about the effects of ASD on the family. Research Program (two research networks, AIR-P and AIR-B and seven R40 grantees included in the study) Developed eight medical guidelines, a comprehensive guideline report, 14 toolkits for providers and parents to use in monitoring and managing ASD symptoms, and seven new behavioral measures for assessing a child s progress over time. 53 manuscripts were prepared and 13 have been published to date. Reached more than 4,000 health professionals through various training events and more than 6,000 individuals through community outreach sessions. Developed 42 autism intervention research proposals and obtained funding for 26 studies. Held monthly events to discuss with parents and practitioners the progress and results from their intervention studies. State Implementation Program (nine state grantees included in the study) Partnered with key state stakeholders to implement and support a shared state plan to improve autism services and served as leaders in building coordinated systems of care for ASD at the state level. Provided training to 194 medical practices, more than 4,000 clinicians, and created inperson and online ASD trainings for families, in addition to training parents to mentor other families, including training on transition services. Recruited and established new medical homes for children with ASD and other developmental disabilities. Disseminated messages about ASD through various media outlets, developed web sites and web portals for online dissemination of ASD materials, developed family-focused materials, and distributed screening kits, autism toolkits, print materials and resources to medical providers. Other Federal Collaborations The interdisciplinary training programs and state demonstration programs work closely with the CDC to implement and evaluate the Learn the Signs. Act Early. public awareness campaign. HRSA Autism Intervention Research projects examine areas of particular interest to families as outlined in the Interagency Autism Coordinating Committee s Strategic Plan for Autism

5 Spectrum Disorder (ASD) Research, January The Developmental Behavioral Pediatrics Grantees (faculty and trainees) also collaborated with the CDC on Autism Case Training: A Developmental-Behavioral Pediatrics Curriculum.

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