After spending the better part of two years assessing the effect of autism spectrum disorder statewide, the University of Delaware Center for Disabilities Studies recently released a plan to synchronize support for autism patients and improve services.
"The objective of the project was really to identify the service needs and gaps," said University of Delaware Program Coordinator Annalisa Ekbladh. "We wanted to bring together stakeholders from across the state and from all agencies to develop a strategic plan that would address the increased needs for the future."
Autism spectrum disorder has been classified as an urgent public health concern by the Centers for Disease Control, and as a result, the University of Delaware received a grant from the federal Health Resources and Services Administration to develop a comprehensive community assessment known as the Blueprint for Collective Action based on its research.
To develop data in order to plan services to accommodate individuals and families affected by autism, the university worked closely with focus groups in each county, sent out surveys and hosted a summit of stakeholders as well as informal meetings.
The blueprint documents a wide range of stakeholders, including adult self-advocates, children and families, caretakers and members of the medical, primary, secondary and higher education communities, all of whom were called upon for continued participation to identify needs and services in need of improvement.
As the number of autism patients has grown – nearly tripling in special education programs over the last eight years according to the blueprint – services and supports have been scattered across many agencies, with little cross-communication or coordination among them.
The study found Sussex County has the largest rate of students diagnosed with autism relative to the population of special education in public schools. Statewide, 6.9 percent, or 1,208 students enrolled in special education programs were diagnosed with autism spectrum disorder.
Teresa Avery, executive director of Autism Delaware, said the blueprint has already had value in quantifying the need for services.
What's really special about this project, Avery said, is the cooperation between agencies, which will be a factor to ensure this public health issue will be addressed in a cohesive manner.
"The most important part is the breadth of the collaboration," she said. "I think its unique, and it makes the blueprint uniquely strong in that more voices are part of the conversation."
For more information about autism spectrum disorder, go to www.autismdelaware.org or call the Milton office of Autism Delaware at 302-644-3410.
Blueprint identifies needs
These are five areas identified by the Blueprint for Collective Action as being in need of improvement with the following proposed outcomes.
• Identification, diagnosis and evaluation: Calling for a document, table or flow chart and consensus between the medical and education communities as well as more standardized protocols and skill development to make appropriate referrals.
• Training and technical assistance: Include availability of the same evidence-based practices, regardless of a student's placement. Similar, high-quality training for adult-based services with a call for ongoing professional development of teachers, para-educators and administrators.
• Pre-professional training: This should reflect advanced preparation and certification for teachers. Medical residency and allied health service training programs with initiatives for identification, treatments and service delivery to patients with ASD are also included in this category.
• Increased self-determination, self-advocacy and social network development: Promote access to resources for individuals and their families in order to make informed choices. Students and others without disabilities would also be educated in avenues to support relationship development with peers who have ASD.
• Increased support for a successful transition into adult life: Should include appropriate outcome-oriented planning for individuals in addition to more post-secondary and college programs for youth with ASD.