News and Knowledge

In December 2016, OAR’s Board of Directors authorized funding for six new applied autism research studies in 2017. These new grants, totaling $178,866, bring OAR’s total research funding to over $3.6 million since 2002. This is the fourth of six previews to be featured in “The OARacle” this year.

Nearly one out of every three working-age Americans with a disability lives in poverty. Like many people with disabilities, adults on the autism spectrum face economic challenges such as low labor market participation, poor wages, and high medical costs. The Supplemental Security Income (SSI) program, a federally administered income maintenance program, provides monthly cash payments to the most financially disadvantaged people with disabilities.

In 2014 alone, 8.3 million people received SSI benefits at an annual cost of $55 billion. Although monthly benefits are modest — averaging about $517 per person — people often rely on this money to pay for necessities like food, shelter, and medications. SSI also often facilitates access to several other benefits including Medicaid, family support, case management, and employment training and supports.

Of the millions of people who received SSI in 2014, roughly 130,000 were adults on the autism spectrum, a 740 percent increase since 2001. Despite its pivotal importance, virtually nothing is known about people with autism who use SSI benefits. Understanding this will help determine which policies, services, and strategies are most effective for this population.

Researcher Kristy Anderson, a research associate at the A.J. Drexel Autism Institute, plans to examine the conditions and characteristics of SSI beneficiaries with autism in her OAR-funded study, “Usage Trends and Characteristics of SSI Beneficiaries on the Autism Spectrum.” This research study will use national Social Security Administration data to assess the prevalence, trends, and composition of SSI beneficiaries with autism. Findings from the study will help to build a foundation of population-level evidence that can inform the development and evaluation of SSI programs and policies. Study findings will also be used to develop a funding proposal to the National Institutes of Health (NIH) that will aim for a more comprehensive and prospective set of research objectives.

The 2013 Interagency Autism Coordinating Committee’s (IACC) Strategic Plan emphasized the need for population-level measures that can “provide a benchmark for the success of different programs at improving the health of the population and to identify models of excellence.” This study will be the first to use population-level measures to examine the conditions and characteristics of SSI beneficiaries with autism.

Study Goals

The goals for the study are to:

• Describe the characteristics of the population of SSI beneficiaries with an autism spectrum disorder (ASD). Are there significant disparities in the size of SSI benefits and/or the use of work incentives across strata of age, gender, family composition, and living arrangement? What are the earned and unearned income sources of adults with autism, and how does their economic well-being compare with that of beneficiaries with intellectual disability?

• Summarize trends in SSI enrollment and annual cash expenditures for adults with autism from 2001 to 2014. How have the numbers, characteristics, earnings, and income of SSI beneficiaries changed? Do program costs vary across states? How do trends compare to those with intellectual disability?

• Characterize the patterns by which adults with autism enter, exit, and re-enter the SSI program. When do adults with autism enter the SSI program? What are the main reasons for adults leaving the SSI program? How often do adults with autism exit and re-renter SSI, and how do these patterns compare to beneficiaries with intellectual disability? Is there an association between participation in work incentive programs and the termination of benefits due to work?

Methodology

Anderson and her study colleagues will use several Social Security Administration administrative data files to complete the study. Social Security maintains detailed information on individuals and their characteristics, such as demographics, employment, earnings, assets, disability diagnosis, geographic location, and other information. She will use:

• The Supplemental Security Record, which contains records for every person who has ever applied for SSI benefits and includes all information required for the initial processing of claims and the ongoing determination of eligibility on a monthly basis.
• The Masters Earning File, which is the Social Security Administration’s primary repository of earnings data for the U.S. population. It includes annual summaries of all FICA earnings received by an individual since 1977.
• The Disability Analysis File, a longitudinal record of beneficiaries who have received any benefits since 1996 and is drawn from several sources of Social Security data. It includes information on beneficiary demographics, SSI programmatic information such as earnings amount and household composition, and information about interaction with state vocational rehabilitation agencies and payment made for those services.

The study sample will include all SSI beneficiaries with a primary or secondary impairment of ASD, ages 18 to 64 years, who received benefits in any month from January 1996 through December 2014, which includes roughly 120,000 individuals. Among them, nearly 35,000 also had intellectual disability as a listed impairment. For some analyses, Anderson will compare beneficiaries with ASD to those with intellectual disability.

In preliminary analyses of SSI beneficiaries with ASD and no intellectual disability in 2014, the researchers found that:

• Roughly 73 percent were between the ages of 18 and 25 years, and 82 percent were male. Around 79 percent were living in their own household and 20 percent lived in someone else’s household receiving support and maintenance.
• Sixteen percent were employed in December 2014 with an average earned income of $55/month.
• Roughly 36 percent received the maximum annual SSI payment amount of $8,652, 39 percent received between $4,326 and $8,651, and 15 percent received less than $4,325.

Outcomes

By establishing national benchmarks of SSI program participation and employment, the study will help to inform quality improvement at the national and state levels. As noted in the 2013 IACC strategic plan, there is little scientific knowledge at the population health level, which is needed to guide policy recommendations. The plan also cites studies about Social Security programs and partnerships as an area of need.

This study will help answer that call by providing baseline estimates of SSI beneficiaries’ enrollment in other social service programs, including vocational rehabilitation, Medicaid, Social Security Disability Insurance, and food stamp programs, providing a more holistic picture of the kinds of service models that impact individuals on the autism spectrum in adulthood. Gaining such an understanding will help to inform future research about establishing effective partnerships among service systems.

The study will also shed light on the employment needs of adults with autism by describing rates of participation in Social Security work-incentive programs. Studying the connection of SSI to employment assistance programs and eventual employment outcomes may help to inform the development of policies and programs that facilitate financial independence.

Ultimately, the goal of the study is to raise awareness of the experiences of people with autism who receive SSI benefits. In turn, advocacy organizations can use this baseline information to educate policymakers about the unmet needs of this population in hopes of leading to program improvements. The findings will also be useful to families trying to understand the ins and outs of SSI and how their individual experience compares to that of other families.