Advocating for those who are often left on the sidelines

By Bill Ibelle

Dean Susan L. Parish - Bouvé College of Health Sciences

Dean Susan L. Parish – Bouvé College of Health Sciences – Photo credit to Adam Glanzman

Too often they are the forgotten population—which is why Bouvé Dean Susan Parish has dedicated her career to improving the lives of women and children with intellectual and developmental disabilities.

In recognition of her decades of scholarly work, Parish was awarded the 2019 research award from the American Association on Intellectual and Developmental Disabilities. The award recognizes her decades-long commitment—one that has resulted in book chapters, policy briefs, monographs, and more than 100 scholarly articles in peer-reviewed journals.

In addition to a lifelong focus on the impact of policy on healthcare disparities, Parish has also investigated the economic implications for families raising children with disabilities.

Parish’s commitment to the field extends far beyond her research, according to Monika Mitre, director of the Lurie Institute for Disability Policy at Brandeis University.

“What sets Dr. Parish apart from other researchers is her profound commitment to mentoring junior researchers and students interested in disability research and policy,” she said.

We recently talked with Dean Parish about her work.

Your extensive research shows a longstanding commitment to healthcare equity. Can you explain the origin of this passion?

“I started working in the field of intellectual disabilities when I was in college. I mainly worked in residential settings, and I was appalled by the poor quality of health care these folks received. When I went back to school for my PhD, I studied health policy and health care access and quality.”

Much of your work focuses specifically on raising children with disabilities and health access for adult women with intellectual disabilities. How did you decide to focus on these particular areas?

“Women with disabilities have always been highly stigmatized in the United States. During the eugenics era in the early part of the 20th century, women with disabilities were sterilized in many states to prevent them from having children. I have personally worked with many women with disabilities whose health care services were of very poor quality, or whose health careproviders ignored their wishes. I have been passionate about social justice for women with disabilities for as long as I can remember.

While working in health services in New Jersey and New York, I became very interested in how policies in different states can have such disparate impacts on families. As a policy researcher, I am always interested in how government can be most efficient and most effective in supporting the needs of highly vulnerable individuals, like children with disabilities and their caregiving families.”

As a thought leader in these fields, can you describe the current environment, the most pressing challenges, and your forecast for progress or lack thereof for the next 5-10 years?

“In the current environment, the most important recent development was the implementation of the Affordable Care Act championed by President Obama. This legislation expanded insurance coverage to adults with disabilities and included numerous provisions related to both quality of care and research.

How this law will be affected by the current administration and Congress is still an open question. Repealing it would have extremely negative consequences for adults with disabilities. Health care needs are often expensive and, as a result, insurers don’t want to cover them, and some employers are reluctant to hire them.”

How does your research influence your plans and priorities as Dean of the Bouvé College of Health Sciences?

“I have been very lucky to continue my program of research as dean. I am a co-principal investigator on an RO1 grant to improve pregnancy outcomes for mothers who have intellectual disabilities. I’m also the principal investigator on a small USDA-funded study of food insecurity and children with disabilities. In other work, I co-direct a center housed at Brandeis University that focuses on families headed by parents with disabilities.

The college’s research priorities are set by the entire faculty, not just me. I do believe, however, that being an active researcher helps me to understand—from the trenches—what faculty have to do today to maintain funding for their research. Associate Dean Gene Tunik has led our efforts to ensure that Bouvé provides as much support as possible to faculty researchers. I want our faculty researchers to spend as much time on their work as they can, and as little time on bureaucracy and federal regulations as possible. The Celtics want Jayson Tatum on the court, handling the ball. I want our researchers to do the same!”

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