WVU Center for Excellence in Disabilities receives funding for family health information center

Friday, May 11, 2018

The WVU Center for Excellence in Disabilities (CED) has been funded to serve as West Virginia’s Family to Family Health Information Center (F2FHIC). F2F HICs are family-staffed organizations that assist families of children and youth with special health care needs (CYSHCN) and the professionals who serve them.

The West Virginia F2FHIC will expand an existing strong network of family consultants to provide a tailored intensity level, tiered approach that networks select youth and their families to available systems of providers and resources within West Virginia. Many youth receive services within the Children with Special Health Care Needs program of WV Department of Health and Human Resources, but pockets of children, primarily those diagnosed with Autism Spectrum Disorder (ASD), Attention Deficit/ Hyperactivity Disorders (ADD/ADHD), and Intellectual Disabilities (ID) are limited in the level of services they are eligible to receive. Children with these diagnoses frequently have stressful and conflicting interactions with family, teachers, and peers which negatively impact their parents’ ability to support their educational and medical needs.

“Our staff includes parents of children with special needs and therefore are uniquely skilled to help families because they have navigated these systems themselves. They have learned the ins and outs of the complicated processes of finding support and services,” said Lori Heginbotham, the grant’s principal investigator and manager of the CED’s Paths for Parents program.

The family-staffed center will provide access to information and resources through a statewide Disability Resource Library. Staff will also hold regional parent support groups and provide trainings on advocacy, managing challenging behaviors with positive parenting practices and coaching in other needed areas. The funding also provides resources to develop simulation-training experiences for medical graduate students that review daily needs and challenges that families of CYSHCN face.

The WVUCED received $387,000 to implement these services within a four year period. This funding is provided by the U.S. Department of Health and Human Services, Maternal and Child Health Bureau.