skip to content

Monday, March 19, 2018

Heller Faculty Notes

Changing policies to meet the needs of individuals with disabilities and their caregivers

Susan Parish hopes her research will make it easier for families to care for and support their loved ones

Susan Parish, Ph.D., M.S.W., arrived at the Heller School for Social Policy and Management in 2010 to assume the Nancy Lurie Marks Chair in Disability Policy, as well as to be the inaugural director of the Lurie Institute for Disability Policy. Parish has worked with disability policy at many different levels. Beginning with her time as Director of Residential Services at two different branches of Arc from 1988 to 1995, her passion for improving the lives of disabled individuals and their families led her to dedicate her career to advocating justice in disability policy. Whether serving as an expert witness in federal class-action lawsuits or equipping the next generation of advocates with a necessary education in research and disability policy, Parish has always kept the struggles of the families for whom she seeks justice close to her heart. Since her arrival at the Heller School, Parish has studied a range of topics including health care access for racial and ethnic minority children with autism, reproductive health care access of women with intellectual disabilities and how impoverished families of children with disabilities stay afloat.

Parish’s passion for changing policies to best meet the needs of individuals with disabilities and their caregiving parents is evident as she explains her career trajectory, hopes for the future, and why American disability policy has such a long way to go.

Q: How did you first become interested in disability policy?

A: When I was working in [Arc] group homes in New York and New Jersey, I was disturbed by the fact that families with similar needs received very different services. The services they received depended more on whether the parents had the time and resources to be good advocates than on the needs of the person with disabilities. It was profoundly unfair how services were allocated. I was interested in learning how to do a better job securing services for the families that I worked with. In order to be fair, policies need to be based on good evidence about what families need and what the supports should look like. My hope is that the research we do at Heller will be used by policymakers to make it easier for families to care for and support their loved one with disabilities.

Q: What do you think has been the most important disability legislation in the recent past?

A: The Americans with Disabilities Act (ADA) is the watershed disability civil rights legislation in the United States. While there were a number of important laws that preceded it, it absolutely stands apart in scope and magnitude and must be viewed as a critical turning point in disability policy in the United States. The recent amendments to restore the ADA’s protections, which were eroded by a series of Supreme Court rulings, are also tremendously important. I don’t think we fully realize just how important they’re going to be, since they are recent and haven’t been studied in depth yet. In the international arena, the UN Convention on the Rights of Persons with Disabilities is having an effect nationally both in developed and developing countries.

Q: What has been your greatest success throughout your career?

A: Some of the work I have done with my research team has been used in advocacy efforts. Our research was mentioned by a governor in a speech that she gave, and I think that our work shapes some of the policy that came out of it. I’m proud of the work I’ve done with states around their developmental disability service systems. But I think most researchers would say that policymakers don’t use good research as much as they should.

Q: What’s next for you and your research?

A: There are four streams of research that my team is going to pursue. The first is ongoing work to promote reproductive health care for women with intellectual disabilities. The second issue that I’m really interested in is the health care system for African American and Latino children with disabilities. We are consistently finding that the quality of care is really inferior for these kids. A third issue that we’re going to continue to examine is the issue of state policy and why it’s so much better to live in some states than others. This line of work is important because we want to understand how we can help states construct policies that adequately support people with disabilities and their families. And our fourth research line now is related to sexual assault of women with intellectual disabilities. We’ve developed an innovative intervention against sexual assault. We’re interesting in obtaining funding to test the intervention, and we hope we will be able to create new evidence about how to reduce this horrible crime for these exceptionally vulnerable women.

Q: What issues should the American public be concerned about?

A: Right now the biggest challenge is that drastic cuts have been proposed to Medicaid. Medicaid is an exceptionally important public policy in the United States because it provides health care and access to a range of services to people with disabilities. Any cuts to Medicaid will be devastating to people with disabilities and to their caregiving families. States have been cutting their Medicaid programs because of the ongoing financial crisis, and federal Medicaid cuts are currently being debated.

I believe that devastating is an accurate way to characterize the threats to Medicaid. This isn’t hyperbole; this is the clear finding of an overwhelming body of research, including mine. This is a frightening time. So many families are able to work and to try to maintain some semblance of a family life because of services that Medicaid provides. If we take those away, I don’t know what those families are going do. These are very dangerous times for people with disabilities.

Q: What do you hope to see happen with disability policy in the next ten years?

A: There is a bill pending in congress called the SSI Savers Act. It would let folks who receive SSI (Supplemental Security Income) accrue savings, which they are currently prohibited by law from doing. I’d like to see that passed. I’d also like to see the Class Act (part of the President’s recent health care reform) implemented. I’d like to see the rest of the President’s health care reforms enacted as well.

What the country needs is a revolution in how we structure disability policy, but that’s not going to happen so I’m giving you the pragmatist’s answer. Certainly I’d like to see an alternative form of family support that recognizes the massive costs that are incurred by families who care for people with disabilities across the lifespan.

Q: Is there anything else you would like to say?

A: If ever there was a time when legislators needed to hear from their constituents that people with disabilities and their families matter, and deserve support to have any meaningful quality of life, this is that time.

Knowledge Advancing Social Justice