by Jill Escher
UC Davis recently published a noteworthy study examining one aspect of the financial burden posed by autism spectrum disorders in California. That aspect was average annual expenditures made by the Department of Developmental Services (DDS) on clients with autism, and the researchers examined those by age, gender and ethnicity as well. The study was limited to non-medical costs, including DDS-funded Day Programs, Out-of-Home, Support Services, Miscellaneous Services, Transportation, In-Home Respite, Supported Employment, Health Care, Work Activity Program and Out-of-Home Respite. The study was based on fiscal year 2013 data and more than 42,000 DDS clients with ASD.
The study found, among other things:
- DDS spending on autism cases increases dramatically with age. (No surprise since school districts cover the bulk of costs for those 21 and under).
- People age 18 and over receive approximately two and one-half times more funding as younger people with ASD, with the widest gap between the youngest and oldest age groups. (No surprise since older adults with ASD are unlikely to live with their parents).
- Average spending for each DDS client aged 3 to 6 was about $12,000, while average spending on each adult with ASD aged 65 and over was close to $50,000. (Spending on young children has probably decreased since the date of this data due to shifting of ABA/early intervention costs to insurers.)
- White clients receive more DDS funding than Hispanic, African American, Asian and other clients. Compared to whites over the age of 18, average per-person expenditures were nearly $13,000 lower for Hispanics, $8,000 lower for Asians, $6,000 lower for others, and $4,000 lower for African Americans. (Seems regrettably consistent with some other research findings.)
The study noted that the surging numbers of DDS autism clients meant that expenditures are likely to surge as well, as ever-growing populations age out of the school system and into the DDS adult system. The authors wisely called recognition of this trend an "urgent imperative."
While the study did shine a needed light on some of the economic burden created by ASD, it had one major shortcoming: it grossly undercounted actual out-of-pocket costs for autism, both from the taxpayers and families. The authors did acknowledge this limitation in the study itself, but the public communications about the study seemed to skirt this issue.
In California, DDS is the "payor of last resort" and ASD adults must first exhaust funding from other “generic” sources before tapping into regional center funding. This means the study ignored the vast majority of adult autism-related expenses, including:
- SSI (usually about $12,000 per year)
- In Home Support Services (county funds, about $24,000 per year for those with substantial functional limitations)
- Subsidized rents, in the form of low-income housing vouchers or set-aside low-income units (usually about $24,000 a year in the Bay Area)
- Medi-Cal and other insurance (for items like behavior supports, could be several thousand per year, at least)
- Paratransit and other subsidized and specialized transportation (can easily exceed $10,000 per year for daily transportation to and from programs and activities, very few of the DDS autism clients can drive)
- Private expenditures, such as parents, special needs trusts, and nonprofit fundraising (often in the tens of thousands per year).
Taken together, annual expenses for an an individual with ASD vastly outstrips what the authors characterized in their study. Nevertheless, their work is a very important start to this increasingly urgent public conversation. I now encourage them to undertake a “Phase 2” of this project examining the true scope of adult autism-related costs. As lead author Paul Leigh, PhD, said: "Our findings can help stakeholders, including legislators and health insurance administrators, accurately estimate the costs of autism services and plan their budgets to meet the lifelong need for those services.” Agreed, but now let’s move toward a more realistic picture.
Reference: J. Paul Leigh, Scott D. Grosse, Diana Cassady, Joy Melnikow, Irva Hertz-Picciotto. Spending by California’s Department of Developmental Services for Persons with Autism across Demographic and Expenditure Categories. PLOS ONE, 2016; 11 (3): e0151970 DOI: 10.1371/journal.pone.0151970