LEND Great Lakes Collaboration Holds Regional Forum on Autism

LEND programs at Indiana University School of Medicine - Indianapolis, University of Illinois - Chicago, University of Minnesota, and University of Wisconsin - Madison

November 19, 2012

Website Link  http://www.aucd.org/template/page.cfm?id=777

Ann Cutler (Illinois), Stephan Viehweg (Indiana), and Anne Harris (Wisconsin) discuss identify emerging themes from the Forum
Ann Cutler (Illinois), Stephan Viehweg (Indiana), and Anne Harris (Wisconsin) discuss identify emerging themes from the Forum

The Riley Child Development Center (Indiana LEND) hosted the 2012 LEND Great Lakes Collaboration annual regional meeting in Indianapolis. The 2012 Forum was follow-up from the 2010 Learn the Signs. Act Early. regional summit also held in Indianapolis. The goal of the 2012 Forum was to bring together trainees, community partners and faculty to share ideas to influence practice, policy, intervention, and advocacy in the area of autism identification, screening/assessment, and intervention/services. In addition to the four Great Lakes LEND programs, representatives from the UCEDD programs at the University of Puerto Rico and Wayne State University participated in the day long forum. These programs are actively preparing to establish LEND training activities in their states.

The Great Lakes Collaboration annually plans an onsite, regional learning opportunity with the goal of bringing faculty and trainees together on a selected topic. These participants have a unique opportunity to share ideas and resources around a particular topic. Trainees report the experience enhances their understanding and appreciation of the AUCD network as well as their knowledge of autism and other developmental disorders. In an effort to expand the regional forum impact, the morning session is broadcast electronically to all participating sites with local facilitators. The afternoon session is designed to build on the issues identified in the morning. Groups at each site take advantage of this time with LEND faculty, trainees and community partners.

For the 2012 Forum, each state partnered with their state autism planning groups to prepare a brief presentation to share about their progress since the 2010 Learn the Signs. Act Early. Summit. Presentations provided highlights of each state's demographics, their state plan for autism, the partners involved in implementation, what has worked (lessons learned) and what challenges remain. Participants were provided a handout with reflective questions to help focus their thinking in preparation for the afternoon breakout sessions to focus on sharing and solving challenges. Reflective questions included:

  • What ideas did you hear that you might further explore in our state?
  • Who else might be invited to the table in our state?
  • What are the gaps or missing pieces in our state plan?
  • What additional outcomes should be added to our plan? Which outcomes should be modified?
  • What are the priorities in our state from each constituent's perspective?
  • How can we measure our success?

Stephan Viehweg of the Indiana LEND opened the 2012 Forum with a review of goals and outcomes from the 2010 Summit held in Indianapolis. Participants were reminded of the materials available from the CDC and updated on new materials and programs. States were recently encouraged to use the self-assessment rubric to review progress of goals and activities at the state level. Viehweg explained the process for sharing states' progress and challenges. Each of the six participating states shared a presentation highlighting their progress. Presentations were made by both faculty and trainees, including Act Early Ambassadors Gail Chodron (Wisconsin) and Nicole Quintero (Illinois). After the state presentations, Scott Badesch from the Autism Society of America addressed the audience, sharing updates and challenges from a national perspective.

Four main themes or topical areas emerged from the presentations as discovered by LEND faculty Amy Hewitt (Minnesota), Ann Cutler (Illinois), and Anne Harris (Wisconsin) who observed the session. The main themes as well as highlights of group discussions recorded by Amy Hewitt included:

  1. Research and Data - Discussion highlights: Data collection must be meaningful and relevant. We must demonstrate how our results can be translated into practice and used by families and the community. Research efforts should focus on outcomes. A unified database (across programs) could be extremely useful. A future goal is to discover possible research activities that collaborate across the programs in the network.
  2. Transition to Adulthood - Discussion highlights: Programs are exploring how to support transition from childhood to adulthood. Some are focusing on partnerships with vocational rehabilitation and employment programs. Some programs are devising specialty clinics to focus on transition. Some wonder if adult self-advocates should be considered as core faculty in LEND programs. Programs noted challenges for people with autism in accessing appropriate supports and evidence based treatment and services. Individuals with dual diagnosis present particular challenges. A goal is to encourage self-advocates to participate in policy and program development. Participants agreed to continue sharing ideas and program developments.
  3. Access to Screening and Diagnostic Services (including pre-service training) - Discussion highlights: All states shared frustration and concerns with challenges to service delivery to access screening, assessment, diagnosis and treatment. This results in waiting lists and frustrated parents. With the increase in prevalence, there is a shortage of personnel to address the increased need. The group discussed striving for a parallel process in training families and providers, improving diagnostic practices and availability, collaborating with insurance providers about supporting evidence based procedures and interventions, and increasing knowledge of providers and community partners about autism and related developmental disorders.
  4. Outreach to Rural and Minority/Underserved Populations - Discussion highlights: Technology advances could enhance service delivery to rural areas however challenges include security and access. Some states are promoting collaborative efforts between programs currently serving rural areas such as Title V clinics, neighborhood and community organizations, as well as exploring innovative interactive information and materials to use with families and their children.

Participants made a commitment to continue sharing ideas and strategies across programs and states. There was a sense of possibility to positively impact screening, diagnosis, and services for individuals with autism and other developmental disorders as a direct result of collaboration across states and programs. From a LEND program perspective, these annual regional meetings that focus on specific topics such as autism have been found to exceed expectations for their outcomes and value.

To review each state's presentation of their current information as well as a summary of this forum, please visit http://www.aucd.org/template/page.cfm?id=777. The Great Lakes Collaboration is already planning for next year's meeting and will build on the successes of the 2012 Forum as we strive to improve our training and service outcomes.