Using research to change disability policy
Study finds more pregnancy complications among women with developmental disabilities
Women with intellectual and developmental disabilities are a very marginalized population in the world. Many U.S. states in the early 20th century prohibited women with IDD from marrying and procreating. Although they have had the legal right to reproduce since the 1970’s, there is still very little information known about mothers living with IDD or their children in the United States. This information is from a nationwide study conducted by researchers at Brandeis University and University of Massachusetts Medical School this fall.
The study, “Pregnancy Outcomes Among U.S. Women With Intellectual and Developmental Disabilities,” found that women with developmental and intellectual disabilities have higher rates of pregnancy complications. The study was published in September by the American Journal on Intellectual and Developmental Disabilities and was co-authored by Prof. Susan Parish (Heller) and Monika Mitra, a professor from UMass medical school who will be starting at Brandeis as a faculty member on Dec. 1.
“We got interested in this work because almost nothing is known about pregnancy outcomes for women who have developmental disabilities — intellectual disabilities,” Parish said in an interview with the Justice.
Parish is the Nancy Lurie Marks professor of disability policy, director of the Lurie Institute for Disability Policy and associate dean for research at the Heller School. Her research focuses on promoting the wellbeing of children and adults with disabilities. She began working in the disability field when she was in high school and became interested in disability policy after college. She explained that after college, she worked in both New York and New Jersey, running residential programs for children and adults with developmental disabilities. She was struck by the vast differences in services that were available to families in the two states.
In this study, Parish and Mitra found that there were many more pregnancy complications among women with developmental and intellectual disabilities than women without disabilities. According to Parish, very little is known about these pregnancy outcomes for women living with disabilities.
The study was also conducted by Alex Bonardi, from the Human Services Research Institute (HSRI), and Leah Igdalsky ’14, a research associate from the Lurie Institute and a Brandeis alumni.
“Women with developmental disabilities are one of the most marginalized populations in the world, and we are absolutely dedicated in our passion to make their lives better. And I think this study has a great home at Brandeis; it fits right in,” Parish explained. “We think it’s very important, as these women are living in the community, and they’re having, you know, regular lives, and they are getting married and having partners — we want to understand how they’re doing, and are they having good health care access, do they get the services that they need when they need them?”
In order to complete this study, Parish and her team analyzed hospitalization data for women across the United States, and they learned that women with developmental disabilities tended to have much worse outcomes than women who do not have developmental disabilities. “They were more likely to have severe complications, and the cost of their stays were more expensive, and across the things that we looked at, we found really poor outcomes.”
Parish believes that this problem can be solved through some changes in policy and health care. “What we think is that we need better policies and health care for these women to promote good prenatal care, good pregnancy delivery outcomes for them and their children, and then we also need good postpartum care,” she said.
Parish explained that her interest in this specific study stems from her long-standing interest in reproductive rights and her own personal commitment to social justice. “I view reproductive health care as a fundamental human right, and it is not always available to women with developmental disabilities,” explains Parish.
Parish has also participated in a similar study, a study in which they looked at pregnancy outcomes for women living in Massachusetts.
“We used birth certificate data and hospitalization data, and similarly found really terrible outcomes,” she said. “We also completed a study a couple years ago that looked at screening for cervical cancer and mammography for women with developmental disabilities, which is again related to my interest in reproductive health care and reproductive rights.”
When asked what she thought the next steps for this study were, Parish said that they have secured a New Hampshire grant to better understand the poor outcomes that they are seeing. They began the project in January, and the funding is for a five-year project.
According to Parish, “part of that study involves interviewing women with developmental disabilities and getting their perspective on the health care they receive, [and] part of it involves interviewing obstetricians and gynecologists to find out what they sense are the barriers to high-quality care for these women.” They are also doing some large scale data analysis and their ultimate goal is to develop practice recommendations for the American College of Gynecologists and Obstetricians.
Parish feels that her position at Brandeis has influenced her research, and given her great opportunities to collaborate with many scholars. “I think that the Heller School’s reputation, and Brandeis’s reputation facilitates that kind of work,” she said.
Parish teaches an undergraduate course in the Health: Science, Society, and Policy (HSSP) program, entitled “Disability Policy.”
The course is focused on improving the lives of children and adults with disabilities. It was developed by a grant from the Ruderman Family Foundation, an organization that is committed to the inclusion of people with disabilities.
“The foundation has supported the development and teaching of this course as a way to help build leaders in … the disability world, not just the policy world, and so I’m really excited. I love the class, and I love the students.”
Parish said that she would like her team to develop clinical practice guidelines in order to impact disability policy and the community. She explained that she would love to see their work influence practitioners and clinicians who deliver obstetric care to women with developmental disabilities. She also anticipates that there will be health insurance that could advocate for changes to health insurance systems.
“Most of the women with developmental disabilities who give birth in the United States have public health insurance, meaning Medicare or Medicaid, which is paid for by taxpayers,” Parish explained. “And so, it’s in taxpayers’ best interest to support high-quality healthcare for these women so that we don’t have to pay for terrible health consequences when they don’t receive good quality care.”