Article archive / February 2017
Originally published: . Volume 8, No. 2. Source pages: 9.
Dr. Lisa Settles and her team at the Tulane Center for Autism and Related Disorders (TCARD), Tulane University School of Medicine, has just passed the mid-point of her Tier I project to understand how to engage clients and community to help youngsters with autism. Dr. Settles is a clinical psychologist, Assistant Professor and clinical director and founder of TCARD.
The project is Autism FORCE–– Families, Organizations, Resources Completely Engaged––for Achieving Positive Patient Outcomes.
The team will work with families and stakeholders of children with autism spectrum disorder with the goal to improve identification of children who struggle with the condition and also to engage with providers.
Settles was awarded the prestigious Tier I Pipeline to Proposal Award from the Patient-Centered Outcomes Research Institute or PCORI.
“The goal of this tier is to develop a partnership with patients/parents and community stakeholders around healthcare issues,” Dr. Settles explained. “Our specific healthcare issue is Autism, as you could probably tell by the name. The deliverables for this tier include a written governance document and recruitment plan.”
According to the project plan, conservative estimates of Autism Spectrum Disorder and related disorders have a prevalence of 1 in 68. This number is based on CDC data. This equates to over 16,000 individuals in the Greater New Orleans area that should meet criteria.
“Despite this large number, there has been no communitywide effort to coordinate and integrate resources for individuals with ASD,” wrote authors in the project summary. “Families often complain that finding resources that meet their needs are either nonexistent or difficult to access. The stress and economic toll on families managing ASD is overwhelming at times because of the scarcity of services, the effort required to locate and coordinate services, and the time away from work for transportation to services and subsequent loss of income.”
While research on the value of evidence-based interventions is becoming stronger, research on symptom management and improved quality of life is “lagging behind expectations,” said project authors.
Part of the reason for this may be how the community and resources are engaged. “In order to compare the effectiveness of methods for improving quality of life, we must understand patterns of service utilization in the community.”
With an estimated 16,000 youngsters in need of services in the New Orleans area it is important to understood ways to coordinate care and link valuable resources with the youngsters who need them. Settles and her team are investigating how these connections work and where improvements may be needed, so that families have fewer barriers to the services needed.
“We have developed an executive council that will consist of nine members,” including three parents, three researchers and three community partners. “There will be other groups of stakeholders/parents who are focused on specific age ranges …” The team is still recruiting partners in this phase of the study.
According to the project summary, the goals of this Tier I project include forming relationships, communication strategies, and methods for gathering families, self-advocates, professionals and organizations, researchers, and members/leaders of the community together for improved access.
Dr. Lisa Settles
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