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Study pegs cost of services for autism’s growing adult population

With costs of more than $26,500 per adult annually, California state report delivers wake-up call for public service planning
April 13, 2016

As a growing wave of children with autism reach adulthood, a new study delivers an important snapshot of the costs of services for adults with the disorder. According to the analysis, the California Department of Developmental Services spent, on average, more than $26,500 per adult with autism in the 2012-2013 fiscal year.

Overall, the costs were skewed toward adults whose autism was complicated by intellectual disability, which affects an estimated one third of people on the autism spectrum. In addition, the researchers found stark differences between services provided to different racial groups.

The study, funded by Autism Speaks and the National Institute for Occupational Safety and Health, appears as an open-access report in PLOS-One.

Most expensive services
Across all age groups, the analysis identified the most expensive services provided to many, though certainly not all, adults with autism. These included:

* Community care (live-in) facilities, at an average of $43,867 per person per year.

* Day-care programs, at an average of $11,244 per person per year.

* Out-of-home respite, at $5,268 per person per year

* Employment support, at $4,957 per person per year

* In-home respite, at $3,059 per person per year

In addition, a catch-all category of support services averaged out at $13,517 per person per year. It included 18 categories of spending including crisis intervention, behavior management and home health agency services.

Growing need for public and private funding
“We know that all of society benefits when we provide the supports that enable people with autism to reach their highest potential as valued members of our communities,” says Michael Rosanoff, Autism Speaks director for public health research. “That’s why Autism Speaks continues to fund research that can inform and alert public health agencies, legislators, autism advocates and other community and national leaders to the need for adequate funding for such programs.”

"These findings reinforce the need for public policies that prioritize timely access to supports and services for people with autism,” agrees Lorri Unumb, Autism Speaks’ vice president for state government affairs. "The findings also highlight the need for high-quality interventions in childhood, which can substantially reduce the need for costly services and supports in adulthood,” she adds.

The analysis did not include the cost of educational or medical services. Medical costs are likely to be significantly higher for many people with autism, as the condition is associated with high-rates of many health issues including epilepsy, anxiety disorders, depression and gastrointestinal problems. 

Higher costs with intellectual disability
In a supplementary table, the researchers compare the average costs of services provided for different age groups depending on whether a person’s autism involved intellectual disability. For example, the cost of services for adults ages 25 to 34 was $20,734 on average for those who had autism without intellectual disability. For the same age group, the average spending per person went up to $37,876 for autism with intellectual disability.

Annual costs for children
The researchers also estimated average state disability spending for children with autism at approximately $10,500 per child per year. However this did not include the cost of special-education classes and classroom-support services.

Racial differences in accessing services
The researchers also found racial differences in autism-related state disability spending. These differences were most prominent for adults. Compared to spending on white adults, average per-adult expenditures were nearly $13,000 lower for Hispanics, $8,000 lower for Asians, $6,000 lower for Native Americans and Pacific Islanders, and $4,000 lower for African Americans.

Compared to white children, average per-child spending was close to $2,000 per person lower for African Americans and Hispanics. Differences between whites and other racial groups were small.

“The reasons for these disparities deserve investigation,” says Paul Leigh, the study’s lead author and an economist with the Center for Healthcare Policy and Research at the University of California, Davis. “It could be related to the locations of [California Department of Developmental Services] regional offices around the state and the variable costs and availability of services in those areas. But average per-person spending on autism should not differ this much. There are no distinctions in the services needed by people with autism based on race or ethnicity.”

Rising costs ahead
“The goal of the study was to provide public health agencies and nonprofit groups financial estimates that can guide their plans to meet the increased demand for services in the years ahead,” Dr. Leigh concludes. “Until now there have been very few studies on the costs of autism among adults.” This represented a serious gap in our knowledge, given the unprecedented numbers of children diagnosed with autism, Dr. Leigh adds. “As these children age into adulthood, there will be pressing demands on employment support, housing, transportation and other services traditionally provided by governments and nonprofit organizations.”

To learn more, also see:

Lifetime costs of autism average $1.4 million to $2.4 million

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