New Report Shows Non-Whites Hit Hardest
Sobering new information released from Drexel University highlights the often-distressing fiscal burden a diagnosis of autism spectrum disorder (ASD) can cause. The report, National Autism Indicators Report: Children on the Autism Spectrum and Family Financial Hardship recorded levels of family financial hardship among households of children with autism. Three aspects of family financial hardship were examined: household poverty, medical expenses and material hardship.
For their report, Drexel University used the National Survey of Children’s Health (NSCH) to obtain national and state-level data from reporting years 2016 and 2017. Funded by the Health Resources and Services Administration’s Maternal and Child Health Bureau, NSCH provides information on the health and well-being of American children ages 3 to 17 years. Drexel’s report focused on NSCH data for children whose parents reported having a child with a current diagnosis of autism.
Household Poverty
Sadly, the Drexel report found that over half (56%) of children with ASD live in low-income households. Low income was classified as $48,500 or below annual income for a family of four. Even more shocking, 30% of children with autism live below the federal poverty threshold, classified as $24,250 or below annual income for the same size family. More than two-thirds (86%) of children with autism from low-income households accessed one government aid program such as cash assistance for poor families with children, women infants and children program (WIC), food stamps or supplemental nutrition assistance program benefits (SNAP), and free and/or reduced-price meals in schools. Drexel’s report referred to these relief systems as “safety net” programs. Over half (58%) of low-income households with children with ASD participated in two safety net programs and 28% needed to access three or more.
Medical Expenses
The research team discovered that children with autism experienced worse general health than children with other special health care needs (SHCN). They also found that children with ASD, regardless of household income, needed more services than children with SHCN. Most children with ASD required access to medical, mental health, or educational services, and/or received treatment or counseling for an emotional, behavioral or developmental issue. Statistics in the report showed that children with ASD had an 81% above average need for services, 79% needed treatment for mental health concerns, and 71% needed specialized therapies. Children on the spectrum had higher rates of public health insurance (such as Medicaid) and lower rates of private health insurance compared to children with SHCN and no SHCN.
Out-of-pocket medical costs for these services and interventions were tracked by the authors. The team determined that half of households of children with ASD have out-of-pocket medical expenses. Around 20% of these families spend more than $1,000 a year. The highest out-of-pocket costs were for households with young children (ages 3-5 years), 25% in this cohort spent over $1,000 per year compared to 17% of school-age children (ages 6-11 years) and 21% of youth (ages 12-17 years). Not surprisingly, a larger portion of families from higher-income households (37%) had medical expenses over $1,000 year compared to children from low-income households (6%). The researchers also noted that parents of lower-income households reported their child’s autism to be on the severer side of the spectrum more often than parents from higher-income households.
Material Hardship
The authors used four indicators to determine material hardship: 1) Difficulty paying for basics like food or housing 2) Inability to afford an adequate food supply 3) Difficulty paying for a child’s medical bills, and 4) Reducing work hours to care for their child. Regrettably, parents of children with ASD experienced high rates of material hardship across all four categories. Around 66% of parents reported experiencing at least one type of hardship. Even more concerning, one in five ASD parents from low-income households reported not being able to afford enough food for their family at times. The team also found that children with autism who accessed at least one safety net program experienced more material hardships and had higher out-of-pocket expenditures than children who didn’t need to access a safety net program.
Racial Variability
Throughout this report, one factor was clear. Financial hardships due to autism are experienced more frequently in non-White households. A prominent key finding showed children with ASD from low-income households were more likely to be non-White, tended to live in a household headed by a single mother and to have at least one sibling with a SHCN. As exhibited in the attached table, material hardship was experienced more frequently in Black and Hispanic households. Unlike other demographics, Black parents of children with autism were the least likely to quit work or reduce work hours to care for their child.
The research team concludes their report with recommendations for future research that could alleviate financial strain for families with children with autism. One of the much-needed areas of study includes racial disparity. The authors advise, “Analyze subpopulations of low-income children with ASD by age, race and ethnicity. Our research suggests that young children from minority backgrounds might be particularly vulnerable to the effects of poverty and hardship. Among households of children with ASD, 80% of parents of Black children and 75% of Hispanic children reported at least one hardship, compared with 59% of parents of White children. Households with young children (ages 3-5 years) with ASD had the highest rates of material hardship with 75% of households reporting at least one material hardship. The findings suggest that material hardship is a major problem for households of children with ASD, especially minority children and children ages 3-5 years. If policymakers want to target new resources and programs to subgroups to alleviate hardship, they should look to analysis of subpopulations of low-income children with ASD.”
Reference
Kristy A. Anderson, Jessica E. Rast, Anne M. Roux, Tamara Garfield, Paul Shattuck. National Autism Indicators Report: Children on the Spectrum and Family Financial Hardship. Drexel University’s Life Course Outcomes. May 2020
