Families Affected By Autism Face Substantial Economic Hardships
Families who have children with disabilities can be overwhelmed both emotionally and financially. Even the most stable of families can face financial hardships due to the extra needs. A new study notes that families that have children with autism spectrum disorders earn an average of 28% less than those that have children with no health limitations.
Zuleyha Cidav PhD and colleagues at the University of Pennsylvania in Philadelphia examined data from the Medical Expenditure Panel Survey which included 261 children with an ASD, 2,921 children with another health condition, and 64,349 children with no health limitations. Overall, families of children with autism earned an average of $17,763 less than those families unaffected by a disability.
For the most part, this was due to one parent – most often the mother – who did not work in order to care for the children. Mothers of children with ASD were 6% less likely to work, worked 7 fewer hours and earned 56% less than mothers of healthy, normally developing children. Overall, children with autism were 9% less likely to have both parents working compared to children with no health limitations.
"This is not surprising," write the authors. "The mother is generally the primary caregiver and decision-maker as to where and when healthcare services will be obtained and usually also accompanies the child to care."
What is surprising is that families with autistic children earned less than families of children with other disabilities. This could be due to fewer insurance benefits offered for therapies for children with autism as compared to children with other disabilities.
Historically, Applied Behavior Analysis (ABA), for example, has not been covered by most insurance plans. But as time has proven the therapy to be one of the most effective treatments an ASD, and experts such as the US Surgeon General and the American Academy of Pediatrics endorse the therapy, an increasing number of companies are adding the benefit.
Several states have passed autism insurance reform laws, but there are still states that lag behind in approving such bills. A recent Charlotte Observer article notes that North Carolina is one of these states even though the autism rate is above the national rate – 1 in 97 versus 1 in 110.
"It is time for the North Carolina legislature to follow the lead of neighboring states like South Carolina and Virginia, and pass the autism insurance reform bills which are languishing in committees (House Bill 826 and Senate Bill 115),” write Bridget Mora, Chapter Board Member of the Autism Society of North Carolina and Robert Weiner, former chief of staff of the US House Health Subcommittee and House Aging Committee.
"An estimated 1.5 million Americans have an autism spectrum disorder … a lifelong developmental disability that affects brain function, emotional development, and social interaction. It affects every facet of daily living, including the ability to communicate, succeed in school, hold a job, maintain friendships, and live independently. "While autism is not curable, it is treatable, especially with early diagnosis and treatment.”
"Given the substantial healthcare expenses associated with ASD (as much as $3.2 million over a lifetime”, concludes Dr. Cidav, “the economic impact of having lower income in addition to these expenses is substantial. It is essential to design universal healthcare and workplace policies that recognize the full impact of autism."
The Pacer Center (Parent Advocacy Coalition for Educational Rights) was created by parents of children and youth with disabilities to help other families facing similar situations. The organizations offers “Possibilities”, a financial resource for parents of children with disabilities that can help obtain appropriate services and improve outcomes.
Cidav Z, et al "Implications of childhood autism for parental employment and earnings" Pediatrics 2012; 129: 617-623; DOI: 10.1542/peds.2011-2700.
Charlotte Observer, “NC lagging on insurance for autism”, posted March 28, 2012.