ITAC, in collaboration with SPHARC and HRSA-MCHB, hosted the Autism CARES (Collaboration, Accountability, Research, Education, and Support) Grantee Virtual Meeting on July 21, 2016. This bi-annual meeting was an opportunity for over 200 MCHB-funded Autism CARES legislation grantees - representing research, training, and state implementation stakeholders - to share information about activities within their respective network, discuss emerging trends, and facilitate meaningful collaboration. This year's theme was "Integrated, Person-Centered Approaches to Transition."
The University of California San Diego/Rady Children's Hospital with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) partnered with Got Transition to develop a new pediatric Maintenance of Certification (MOC) Part 4 Module on transition. The web-based activity - "Transitioning Youth from Pediatric to Adult-Centered Care - will evaluate adequacy of participant documentation of patients' transition from pediatric to adult centered care within the 6 Core Element framework developed by Got Transition: Center for Health Care Transition Improvement.
The Health Care Transitions Research Network (HCT-RN) for Autism Spectrum Disorder (ASD) and Other Developmental Disabilities was funded to support the creation of an interdisciplinary, multicenter research forum for scientific collaboration and infrastructure-building with a focus on research designed to improve health care transitions and promote an optimal transition to adulthood (including physical, psychosocial, educational, and vocational outcomes) among youth and young adults with autism spectrum disorder (ASD). Since April 2016, our network has been actively engaged in the following research and practice improvement efforts related to the transition to adulthood of youth with ASD.
The AIR-B3 network consists of 5 sites--- UCLA, UC Davis, University of Pennsylvania, Drexel University and University of Rochester. We have been actively preparing for the intervention studies we proposed, Mind the Gap and Building Better Bridges. Both of these intervention teams have been collecting pilot data, and refining the interventions which focus on the gap between diagnosis and services for many low-resourced families (Mind the Gap), and in maintaining continuity between major schooling transitions, such as between preschool and Kindergarten, elementary to secondary school (Building Better Bridges).
In May this year, the American College of Physicians (ACP) will be releasing new transition readiness/self-care assessment and medical summary tools modeled after Got Transition's "Six Core Elements of Health Care Transition."
Got Transition has partnered with the Office of Disability Employment (Department of Labor) and the Youth Transitions Collaborative to create a Transition QuickGuide for youth and young adults (ages 12-30), including those with disabilities and chronic health conditions. The QuickGuide includes information and resources about health insurance, self-care management, transition from pediatric to adult health care, decision-making, and career planning to help young people manage their health care needs in order to make their career goals a reality. A related joint letter from ODEP and HRSA�s Maternal and Child Health Bureau emphasizes the importance of expanding access to health care services and work-based experiences for youth with chronic health conditions and disabilities.
A Policy Brief from ASAN
This policy brief addresses the health care needs of autistic youth as they transition to adulthood. The brief, produced by the Autistic Self Advocacy Network (ASAN) and funded by the Special Hope Foundation, provides recommendations to ensure that young adults with Intellectual and Developmental Disabilities (I/DD) receive consistent access to quality health care, as well as support in taking on adult levels of autonomy with respect to their own health care needs. Please direct any inquiries on this resource to Samantha Crane at firstname.lastname@example.org.
Mentoring Youth with Disabilities
The Need for Mentoring Youth with Disabilities:Youth with physical or mental disabilities represent special populations at risk for juvenile delinquency, victimization, educational failure, and poor employment outcomes and often have multiple, overlapping risk factors. Such youth can and do benefit from mentoring relationships.
The Need for Inclusive Mentoring Programs:Youth with disabilities typically to receive mentoring within disability-specific programs rather than in inclusive, community-based programs that have a diversity of resources that promote education, job readiness, development of employment skills, and/or training in and exposure to entrepreneurial activities.
- Youth with disabilities can participate with their typically developing peers in mentoring programs,
- The community capacity to serve people with disabilities would be enhanced with training, technical assistance, and programmatic supports,
- There is a social value to providing inclusive supports and services, and
- Through building the capacity of community-based mentoring programs to serve all youth well-including those with special physical or mental challenges-is more cost-effective than supporting multiple specialty services.
AUCD has developed a factsheet that provides an overview of mentoring youth with disabilities, and gives examples of promising practices from the AUCD network. Click here: factsheet in PDF