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Regional Breakout- Region 2 & 3
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