Identifying Barriers Faced by Parents When Accessing ASD Services: Analyses From the 2009 Pennsylvania Autism Needs Assessment

Background:  

The impact of Autism Spectrum Disorders (ASD) can include the schooling, physical and mental health, and community integration of the child with ASD, and the health and well-being of caretakers and other family members. The many services required to address these needs can, however, be difficult to access. The Pennsylvania Bureau of Autism Services commissioned a survey of individuals and families across the Commonwealth. One goal was to identify barriers to accessing services, to consider when seeking to improve the system of service delivery.  While some of these barriers (e.g., cost, distance, lack of providers) and interactions with factors related to the family’s background have already been explored in other studies, the breadth of the present study will help in advancing our understanding of these important issues.

Objectives:  

1) Describe the most common barriers that individuals and families living with ASD encounter when seeking services; 2) Identify how these barriers vary across individuals of different ages and for families from different backgrounds and regions of the Commonwealth, and; 3) Explore how to communicate these results effectively to key stakeholders.

Methods:  

Five versions of the survey were developed; 4 versions completed by parents and caretakers (of children not yet in elementary school, in elementary school, in middle/high school, or post high school), and one version completed by individuals with ASD responding for themselves. Each version shared a core set of questions, plus age-specific modules. Invitations to complete the survey were mailed to approximately 30,000 individuals or family members of a person with a Medicaid-reimbursed claim associated with an ASD diagnosis in Pennsylvania.  Respondents completed the survey online or called to receive a paper version in English or Spanish. We focus on the responses of caretakers with respect to access to 4 key service categories: primary health care, dental care, specialty health and education services (e.g., Speech/Language Therapy, Occupational Therapy, Social Skills Training, Behavioral Support, Medical Management, etc), and family support services (e.g., Respite/Day/Afterschool care, Family/Sibling Counseling, Family/Sibling Support Groups, etc). Possible barriers assessed included lack of transportation, provider’s refusal to see children with autism, scheduling issues, child’s behavior problems, cost of services or lack of insurance coverage, and lack or shortage of providers.

Results:  

Analyses are still in progress. Over 3500 parents or guardians of children and adults with ASDs responded to the survey. Analyses will consider the frequency of the barriers across the service categories listed above. Interactions between these barriers and a variety of child factors (e.g., age), and family factors (race/ethnicity, urban/rural, education, income, single/dual parent household, etc) will also be also considered. Results will include detailed maps illustrating specific, geographic-based service gaps and to aid in setting state and local priorities. Results will also include sample snapshots conveying the principle findings to parents and policymakers.

Conclusions:  

This study will demonstrate strategies for gathering, analyzing, and presenting  data to identify barriers in accessing services, to help shape efforts by citizens, professionals, and policymakers to develop targeted policies to improve service to individuals and families living with ASD.