A better understanding of the relationship between research and policy

Photo from event with Alacia Stainbrooke, Laurie Fleming, Pablo Juarez, and two others

As UCEDD trainees, we had the exciting opportunity to join policymakers, professionals, advocates, and people with disabilities at the Disability Policy Seminar (DPS) in Washington, D.C. We are both postdoctoral fellows in the Transitions Lab (led by principal investigator Julie Lounds Taylor, Ph.D.) who study the transition to adulthood (CM) and mental health (NL) in autistic youth. We were therefore interested in learning about current policies that pertain to this population. Attending the DPS allowed us to understand key issues affecting the disability community and ways that these issues can be addressed through state and federal policy. The sessions at the conference, which consisted of panels of policy experts and people with disabilities, covered updates on specific policy issues and strategies to increase our advocacy skills.

We found two of the sessions particularly informative, one of which provided information on the Autism Cares Act (ACA). The ACA is the most comprehensive federal law addressing the urgent needs of autistic individuals. The ACA coordinates and provides funding for programs designed to increase research, surveillance, professional training (e.g., LEND and UCEDD programs), and the development of interventions for individuals with neurodevelopmental disabilities. Policymakers are attempting to reauthorize the ACA this year, which would increase capacity for LEND programs and Centers of Excellence among other improvements. Another session that we found particularly eye-opening covered reforms to the Social Security Income (SSI) benefit program. Currently, SSI beneficiaries are not allowed to have more than $2,000 in assets ($3,000 for married couples). Since many disabled employees also rely on SSI for Medicaid, these individuals are often forced to choose between employment and healthcare.

There are several policies that have been introduced to reform this program, such as the SSI Savings Penalty Elimination Act. This SSI reform bill would raise the asset limit for the first time since 1984 to $10,000 for individuals and $20,000 for married couples. Other SSI reform bills propose to end the five-month wait for disability benefits, end work and marriage penalties, and update eligibility requirements. The last day of the DPS consisted of meeting with members of Congress to educate them on the current disability-related policies. Along with other members of the Vanderbilt Kennedy Center (VKC), we met with a staff member in Marsha Blackburn’s office to provide information on the reauthorization of the ACA and discuss the autism-related programs at VKC.

A major takeaway we had from the DPS was recognizing that disability policy is generally a bipartisan issue. Policymakers from both sides of the political aisle attended the conference to advocate for the reauthorization of the ACA and for SSI reform (the bill to reform SSI was introduced by Sherrod Brown [D] and Bill Cassidy [R]). We also learned that to effectively educate state representatives, it is important to ensure that constituents are meeting with them regularly to discuss disability-related policy issues. Additionally, by attending the DPS, we learned that education on disability policy is the first step to effective advocacy, which ultimately improves the lives of people with disabilities.

Finally, the DPS allowed us to further understand the bidirectionality of research and policy. Policies, such as the ACA, are necessary to continue research on autistic populations; similarly, findings from research are necessary to inform policies that will improve the lives of autistic individuals. Overall, we found the Disability Policy Seminar highly impactful and would recommend it to other UCEDD/LEND trainees.

Pictured top of page: Alacia Stainbrook, Laurie Fleming, Carly Moser, Pablo Juárez, and Natalie Libster.

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This is a monthly email of Vanderbilt Kennedy Center Notables published by the Communications staff of the Vanderbilt Kennedy Center. Between issues of Notables, you can stay up to date on the latest Vanderbilt Kennedy Center news, information, and resources via the Vanderbilt Kennedy Center’s Facebook page.