Evaluation of a Community-Based Autism Clinic
Community-based autism clinics that serve primarily low-income, minority, and underserved populations are limited in the U.S. despite evident disparities to diagnosis and services based on race, ethnicity, and social class. To address the needs of underserved children with autism and their families in Atlanta, Georgia, the Autism Clinic at Hughes Spalding Children’s Hospital, an affiliate of Children’s Healthcare of Atlanta (CHOA), was established in 2002. The Autism Clinic provides a comprehensive continuum of autism services by offering one full day of multi-disciplinary services and a half-day of limited services per week from a range of professionals, including a developmental pediatrician, nurse practitioner, and a speech and occupational therapist. When needed, the clinic utilizes a CHOA language interpreter, social worker, nutritionist, nurse navigator, and/or special education specialist.
The purpose of this study is to evaluate the quality of care provided by the Autism Clinic at Hughes Spalding Children’s Hospital in Atlanta to identify strengths of this model of care and areas for improvement.
We conducted a Quality of Care Survey (53 item questionnaire plus demographics) with caregivers who utilize services at the Autism Clinic to evaluate three levels of care: Access to Care; Family Centered Care; and Care Coordination, as well as overall level of satisfaction with the range of services received at the clinic. See Table 1 for caregiver demographics.
Caregivers were most satisfied with various components of Family Centered Care, including providers spending enough time, listening carefully, encouraging questions, and offering specific information needed (91%, 99%, 96%, 96%, respectively). Caregivers where less satisfied with the time to first appointment (Average = 127 days) and access to services outside the clinic (78% of participants were usually, always or sometimes frustrated with accessing autism services). Overall, caregivers were satisfied with the diagnosis process, how the diagnosis was communicated, referrals provided, follow-up services, and range of services offered at the clinic (See Figure 1).
We identified strengths in the quality of care offered by the Autism Clinic at Hughes Spalding Children’s Hospital, including various components of family centered care and the overall experience of the diagnosis process. These strengths support the multi-disciplinary model provided by the Autism Clinic; a model of care particularly effective for underserved families because they are able to see four or more different providers in one visit. However, there are needed areas of improvement since 43% of families did not feel prepared for the first visit. We recommend the development of a bilingual information sheet about the types of providers and services offered at the clinic and what to expect during the initial visit. Parents also indicated that they did most of the care coordination for their child (71%). To help navigate the coordination between various autism providers, we recommend a designated autism clinic care coordinator, a specialist that works with Medicaid systems of care, and a parent advocate who can help meet the diverse needs of underserved families.