Regional Breakout- Region 2 & 3
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  • 1. REGIONAL BREAKOUT – REGIONS II AND III Facilitator: Crystal Pariseau 1. Activities Donna from Virginia Commonwealth University • Expanding diagnostic clinics to rural areas Guy from DC LEND • Making connections with local stakeholders and creating a presence in the area Rebecca from Kennedy Krieger Institute • Developing models and measures for early detection of ASD and developing treatment models Peter from University of Pennsylvania • Development of an intensive specialized autism track • Trainees spend time in a clinic for autism diagnosis • Training in early screening and diagnosis Nate from University of Pennsylvania • Development of a transition to adulthood program for individuals with ASD • Working with homeless shelters to conduct screening for autism • Collaboration with other programs to do sexual health training for individuals with autism and other developmental disabilities Bruce from Kennedy Krieger Institute • Training site for extended training • Early intervention program • Evaluation center to teach peds residents • Dissemination of information regarding ASD Patty from Westchester • Expanded curricula for LEND trainees • Postdoc consultation with school on behavior • Collaboration workshops for preschool on identification of early signs of autism • Online modules for training, including training of early identification of autism • Presentation of training program’s work at the state level Ruth from Einstein • To enhance ASD training of trainees • Work to increase residents’ knowledge about autism • Observe ADOS administrations • Inviting families of children with ASD to be “resident trainers” • Spending time in schools for children with ASD and observing ABA and TEACCH programs within schools
  • 2. • Increasing the fellow and resident capacity for assessment Bob from Einstein and the Kennedy UCEDD • On a national level, meeting with legislators to discuss CAAI and reauthorization • At the state level, applied and received grant to sponsor a state-wide meeting for state disability agency • Locally, conducting DBP activities and creating a “super fellow” program to allow a fellow to gain experiences that will help him/her become a director of an autism center • Expand early intervention training to include “Learn the Signs” campaign curriculum • Expanding research focus to collaborate with IDDRC • Working in community to raise awareness • Use of a mini-grant to reach the public through media Donna from the Bureau of Early Intervention in New York • Focus on increasing public awareness • Improving universal screening • Planning to better use technology for screening • Working to improve early intervention services through training • Working with family training and support via online formats • Working with families on transition issues Steve from Rochester LEND • Advanced training in four disciplines • Development of projects through AIR-P collaboration • Expanded resident training • Development of training for school-based/rural education web-based format • Advanced fellows helped advocate for autism bills Susan from West Virginia LEND • “pull together” what is available in area services • Partnered with TEAM Autism • Development of online training in early intervention • Focused on training in underserved areas • Developed a brochure regarding the “Act Early” campaign • Conducted 2 ADOS trainings • Sent residents to visit schools for children with autism • Planning to reach underserved areas • Work on insurance legislation • Received grant to do work on an ABA pilot program 2. Post-Summit Accomplishments NY/NJ • Small subgroup worked on dissemination of materials from the marketing campaign • Three LENDS began working on collaboration between the LENDS and DBP programs
  • 3. • Collaboration with Sarah Laurence College on training in intellectual disabilities (genetic counseling students) using films 3. Collaborative Product or Outcome • Do a north coast conference in Erie, PA • Work collaboratively across regions to discuss insurance legislation • Work on a collaborative autism registry • Work collaboratively to discuss issues related to access and transitioning • Discuss issues related to translational research and the difficulties getting it done • Discussion of the disparities in services • Working collaboratively through conferences and telephone discussions to increase awareness of ASD, the needs, service providers, and evidence-based treatments • Work with like programs to cross geographical boundaries • Develop a summit for face-to-face collaboration • Collaborate to work on the disparities by creating state summits that would link important stakeholders together for collaboration • Hold summits for discussing “access” with focuses on both prediagnostic and postdiagnostic acess o The priorities shift geographically and may be difficult to discuss o Collaboration may not be best now because some areas have not had a summit o We would need to reach out to other territories o Summit could focus on autism insurance legislation o Could develop a toolkit for autism insurance legislation work o Bring together all stakeholders, including legislators via NCSL and DD councils o Focus would be on sharing experiences of autism legislation successes and failures 4. Action Items #1 – Region III will hold a summit where autism legislation, advocacy, and policy change are the focus • This will be done in March • Peter from AUCD with be the point-person #2 – Region II will hold an all-inclusive meeting to develop an agenda for the upcoming year and the focus will be on use of media • The meeting will occur in January • Arnie Biernbaum from AUCD will be the point-person #3 – Regions II and III will collaborate to conduct planning for a large-scale (i.e., East Coast) summit focused on autism legislation and policy change • This will be placed on the agenda for next year’s AUCD meeting • The summit will be in 24 months • Planning will occur by phone and at regional meetings • Health care reform of ’09 and ’10 will affect the planning
  • 4. • No contact person has been identified yet