The Medical Home: Impact on Children with Autism Spectrum Disorders and Their Families

Background:   Parents of children with autism spectrum disorders (ASD) describe numerous problems accessing specialized services and family supports compared to other children with special health care needs (CSHCN) (Kogan et al., 2008; Krauss, Gulley, Sciegaj & Wells, 2003). These challenges often result in family strain due to high out-of-pocket costs for unfunded services, demands on parental time to seek and coordinate services, and the need to reduce work hours or stop working because of the child’s condition.

Objectives:   This study’s purpose was to examine the relationship between having a primary care medical home and two potential family stressors: (1) unmet child needs for specialized care, and (2) family strain associated with time spent coordinating care, reduced hours of employment, and financial concerns. The study hypothesis was that having a fully functional medical home as described by the Child and Adolescent Health Measurement Initiative (CAHMI, 2009) would reduce both of these stressors. Possible moderating factors such as child age, diagnostic category, physical health status and functional level were also examined.

Methods:   A 73-item Access to Care Questionnaire was designed for this study, with most questions taken from the 2005/06 National Survey of Children with Special Health Care Needs. The sample was drawn from families who were enrolled in the Interactive Autism Network (IAN), a national online autism registry. A link to the questionnaire was emailed to 2,422 enrolled families, and the survey remained available for parents to complete for a 5 month period. There were 376 respondents in total (16% response rate). Mean child age was 9.7 years (SD = 3.9); 82% were male; 19.5% of children in the sample had a fully functional medical home. Two hierarchical regression analyses were conducted to examine predictors of unmet child needs and family strain (n = 308), using a prediction model that included demographics, child characteristics, family characteristics and the five key components of the medical home.

Results:   Overall regression models were significant for unmet child needs (R² = .42, p = .000) and family strain (R² = .39, p = .000). Predictors of unmet child needs included child characteristics (worse physical health, total number of needs) and family characteristics (total number of unmet family support needs). After controlling for demographic, child, and family characteristics, the five medical home components predicted unmet child needs; significant components were having a usual source of care and family-centered care.

In the second regression, two child factors predicted higher family strain: lower functional level and worse physical health. After controlling for demographic, child, and family characteristics, the medical home components also predicted family strain. Specifically, family-centered care was associated with lower family strain.

Conclusions: Family-centered care provided through the primary care medical home may increase access to specialized care for children with ASD and reduce the impact of the condition on the family. More research is needed to determine whether quality improvements in primary care service delivery will enhance child and family outcomes.