To enhance services for families of children with autism spectrum disorder under the age of three, the Building Bridges project works to: 1) create a more coordinated and supportive system of care for families, 2) improve screening, evaluation, diagnosis and referral practices, and 3) increase families’ knowledge and confidence in navigating the early childhood system. The project is funded by the Health Resource and Service Administration.

Building a more coordinated and supportive system of care for families

Coordinated care

Autism Delaware, a partner with CDS in the Building Bridges project, is piloting a program that seeks to help families coordinate care options for their child and boost communication between systems and providers. The program’s signature care package will offer its users a care plan, access to family resource services through Autism Delaware and Delaware Family Voices, increased staff and family education, and opportunities to increase communication between all of the child’s doctors, therapists and school professionals.

Supportive care

Delaware families will gain access to greater supports once better-trained professionals are able to provide services throughout the state. Planned trainings will include education for pediatric providers on the early signs and symptoms of autism and the use of early intervention services. Providers will also learn evidence-based practices to use with children with autism.

Children and families in the underserved counties of Kent and Sussex counties will gain access to greater supports through the advent of Telehealth. CDS collaborated with Nemours/Alfred I. duPont Hospital for Children on a Telehealth pilot that delivers behavioral interventions for autism through remote video conferencing. Telehealth equipment is housed at clinics and health offices throughout the state that can deliver services to families who face barriers to accessing care. Learn more about Telehealth here.

Building improved screening, evaluation, diagnosis and referral practices

Screening

A pervasive lack of screening for autism in young children impedes timely diagnoses and referrals for service throughout Delaware. Instituting the M-CHAT-R should change that. The Modified Checklist of Autism in Toddlers – Revised (MCHAT-R) is a parent questionnaire that screens for autism. To increase its usage, CDS will conduct trainings, beginning with a six-month pilot among pediatric and family care practices and health centers. It is expected to launch in January 2018, when it will target the underserved region of Sussex County. Parents or caregivers who would like to screen a toddler (16-30 months) in their care can access the M-CHAT-R, free, here.

Further steps

Child Development Watch (CDW) is Delaware’s Part C early intervention program from children birth to age three, yet many families face long waits for services after their child’s evaluation, particularly in Kent and Sussex counties.

Increasing access to resources will be facilitated through CDS’s funding of LEND trainees and post-doctoral fellows from Nemours, who will dedicate time to improving referral processes and increasing behavioral therapies and evaluations. Telehealth practices and the providing of supports in underserved regions will improve access to evaluations. And trainings in the STAT (Screening Tool for Autism in Toddlers & Young Children), a tool that improves triage and evaluation for autism, will educate providers on the early signs and symptoms of ASD. Vanderbilt University, which co-hosted with CDS a STAT training workshop in Delaware, offers in-person and online STAT trainings for a fee.

Building knowledge and confidence among families to navigate the early childhood system

Navigating existing systems of care can be intimidating and overwhelming for families, and impeded by educational, cultural, financial and geographical barriers.

Family navigators, available through the Building Bridges project, are helping. They’re professional staff members who are often a parent or primary caregiver for a child with special health care needs who assist families to bridge gaps between providers and systems. Family navigators provide and facilitate access to family-to-family support, focus on strengths and healthy coping, locate and access community services and supports across multiple systems, and provide guidance for navigating those systems while building family knowledge and advocacy skills. Autism Delaware is introducing a bilingual family navigator to its Sussex County program.

Another resources is Parent to Parent (P2P), a nationwide program that connects a trained volunteer Support Parent with a parent seeking information, resources, guidance, and support.

In the First State, Delaware Family Voices (DEFV) hosts P2P trainings.

For more information on Building Bridges, contact Project Coordinator Brittany Powers at bblument@udel.edu.