Recent research has shown that children with autism spectrum disorders (ASD) experience more difficulty accessing quality primary care services through the medical home than children with other chronic health conditions. However, unmet specialty care needs in this group are not well defined. Additional research is needed to identify gaps in care and strategies for improving access at both the state and national levels.
The objective of this project was to conduct a fine-grained study of the unmet health care and family support needs of a US sample of children with ASD using a national autism registry. A secondary objective was to examine unmet needs in a Midwest state in comparison with national trends.
A 73-item Access to Care Questionnaire was designed for this study. Most questions were selected from the 2005/06 National Survey of Children with Special Health Care Needs (with author permission). The sample was drawn from families who were enrolled in the Interactive Autism Registry (IAN), a national, voluntary, online autism registry. A link to the questionnaire was emailed to 2,422 families, and the survey remained available for parents to complete for a 5 month period. There were 376 respondents in total (16% response rate), with 97 of these participants from the targeted Midwest state. Mean child age was 9.7 years (SD=3.9); 82% were male. Other IAN data on characteristics of the respondents were also used in data analyses (e.g., ASD diagnosis, Social Communication Questionnaire [SCQ] total score).
Unmet needs in the Midwest state did not differ from national data, so only national findings are described. On a global access item, approximately one-third of parents (31%) indicated that needed care was delayed or their child went without care in the past 12 months. In response to a list of specialized services, nearly two-thirds of respondents (65%) with a child who needed behavioral therapy were unable to access this service. Other frequently reported unmet child needs were for communication aids/devices (53%), occupational/physical therapy (46%), speech/language therapy (42%), and mental health services (41%). When asked about family support services, parents described unmet needs for respite care (70%), genetic counseling (69%), and family mental health services (63%). The main reasons for access problems were cost and health plan barriers. Factors associated with unmet needs were minority status, lower family income, lower child functional status, poorer physical health, and a greater number of autism symptoms on the SCQ. Unmet needs did not differ by ASD diagnostic category.
This study extends and refines the results of other research on access to care for those with ASD. A large percentage of children and families do not receive needed specialized services. Significant health disparities were noted for children with ASD from minority and low-income groups and for those with more complex and disabling conditions. These findings can be used to shape public policy and service delivery systems at both the state and national levels.
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