Determining The Lifetime Cost Of Caring For Autism Patients
June 10, 2014

Determining The Lifetime Cost Of Caring For Autism Patients

Brett Smith for - Your Universe Online

Individuals with autism need special care throughout their lives and unfortunately, that care comes at a cost. According to a new study in JAMA Pediatrics, the costs for supporting individuals with autism spectrum disorders (ASDs) ranges from $1.4 million to $2.4 million in the United States and the United Kingdom.

The study team said their analysis included more than just the direct costs associated with the condition.

"We sought to look at the overall economic affect [sic] of ASDs, not just the cost of caring for this population, but also the costs of individual and parental productivity loss across both the U.S. and the U.K.," said study author David Mandell, an associate professor of psychiatry and pediatrics at the University of Pennsylvania. "We also separated out those with intellectual disabilities (ID), as the presence of ID may significantly influence costs."

In the analysis, the researchers examined current literature in both countries, bringing information up-to-date and adding to data as needed to approximate the cost of housing, medical and non-medical services, special education, employment assistance and productivity loss. Contrasts in how education, medical care and other systems are structured and funded between the two countries made the analysis even more complex, the study team said.

Next, the researchers considered the additional costs of those with ID. With 40 percent of those with ASD also having an ID, the researchers said, combined national cost of helping children with ASD was approximated at $61 billion each year in the US, and $4.5 billion annually in the UK. When the number of patients with ID was approximated to be 60 percent, expenditures rose to $66 billion each year in the US and $5 billion each year in the UK.

At a 40 percent prevalence of ID, the total costs for adults was $175 billion annually in the US and $43 billion in the UK. These figures grew to nearly $200 billion and $46 billion, respectively, when the ratio of adults with ID was bumped up to 60 percent.

For ASD individuals without ID, the total cost for lifetime care was determined to be $1.43 million in the US and $1.36 million in the UK.

The scientists discovered that the largest reason for overall costs in both countries were direct nonmedical costs, including special education when individuals were young and indirect costs, such as productivity losses in both individuals with ASD and their parents.

"These numbers provide important information that can help policy makers and advocacy organizations make decisions about how to allocate resources to best serve this population," Mandell said. "Of particular importance is that one of the largest costs was parents' lost wages. This finding makes it imperative that we examine how high-quality intervention can reduce burden on families, allowing them to stay in the work force. It also suggests the need for policies that make the work place more friendly to families of children with disabilities."

In a related editorial, Paul T. Shattuck and Anne M. Roux, of Drexel University praised the study and called for more extensive long-term research.

"Improving our understanding of how life unfolds will require a serious commitment to longitudinal, population-based data collection,” they wrote. “For nearly seven decades, evidence from the Framingham Heart Study and other longitudinal studies has laid the foundation for our contemporary understanding of the epidemiology and treatment of cardiovascular disease. We need a Framingham Study for autism spectrum disorders, especially to track risks and outcomes into middle and later adulthood.”

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