Ameliorating Family Impacts Among Children with ASD: The Role of Health Care Quality

Background:  Children with Autism Spectrum Disorder (ASD) have complex health and social needs, and as a result, families of children with ASD experience deleterious employment and financial impacts.  Quality health care, minimally including adequate health insurance coverage and receipt of medical home care, may mitigate employment and financial impacts on families.

Objectives:  To examine family employment and financial impacts experienced among children with special health care needs with ASD (CSHCN+ASD) compared to CSHCN without ASD (CSHCN-ASD), in addition to the potentially mediating influence of quality health care on family impacts among CSHCN+ASD.

Methods:  Nationally representative data weighted to represent the non-institutionalized population of U.S. CSHCN age 3 to 17 years were gathered from the 2009/10 National Survey of Children with Special Health Care Needs.  Weighted logistic regression, controlling for socio-demographic differences, was used to examine financial and employment problems in 3025 CSHCN+ASD compared to 33 948 CSHCN-ASD. Employment and financial impacts were defined, respectively, as: CSHCN whose health conditions caused family members to cut back or stop working and CSHCN whose health conditions caused the family financial problems. Quality health care, conservatively defined as the receipt of care within a medical home and health insurance adequacy, was entered into the regression model as an independent variable to observe its effects on family financial and employment outcomes among CSHCN+ASD.

Results:  Compared to CSHCN-ASD, CSHCN+ASD had higher adjusted odds of having a family member who cut back or stopped working due to their child’s condition(s) (20.6% versus 57.1%; AOR: 5.32, 95% CI: 4.61-6.13) and having a family that experienced financial problems due to their child’s health care needs (19.3% versus 43.2%; AOR: 3.36: 95% CI: 2.90-3.89). When CSHCN+ASD had quality health care, employment and financial impacts were lessened:  Compared to CSHCN+ASD with inadequate health insurance, CSHCN+ASD with adequate health insurance had lower adjusted odds of having a family member who cut back or stopped working due to the child’s condition (64.0% versus 50.6%, AOR: 0.60, 95% CI: 0.45-0.80) or who experienced financial problems (58.5% versus 29.2%, AOR: 0.31, 95% CI: 0.23-0.42). Similarly, relative to CSHCN+ASD who did not receive medical home care, CSHCN+ASD who received comprehensive, coordinated care within a medical home were less likely to experience family employment impacts due to their child’s condition (60.1% versus 45.4%, AOR: 0.64, 95% CI: 0.48-0.86) and financial problems (48.1% versus 26.0%, AOR: 0.47, 95% CI: 0.33-0.66).

Conclusions:  Families of CSHCN+ASD experience higher rates of adverse financial and employment impacts than families of other CSHCN; however, receipt of quality health care may lessen these impacts. Systemic mechanisms promoting access to adequate health insurance and medical home care among CSHCN+ASD will be imperative to improving the family environments that shape the trajectories of this vulnerable population.