Lurie Institute conducts research on disability policy

April 13, 2018

The Lurie Institute for Disability Policy is a research center on campus dedicated to research that improves the lives of people with disabilities. Located within the Heller School for Social Policy and Management, The Lurie Institute conducts research on policies concerning physical, developmental and intellectual disabilities.

The Lurie Institute was founded in 2007 with a donation from the Nancy Lurie Marx Family Foundation, a private foundation which conducts research on autism. According to its website, the institute focuses its research on disability policy in the United States with an emphasis on autism, analyzing policy options for achieving the broadest integration of persons with disabilities into the mainstream of U.S. society. The institute also strives to include the voices of those with disabilities in their work.

“We disseminate information about the research that we do, we develop training programs, and we also do webinars, all with the overall goals of improving the lives of people with disabilities,”
said Monika Mitra, the Interim Director of The Lurie Institute.

The institute conducts research with principal investigators (PI’s) at universities—including Northeastern University, University of Minnesota and University of Michigan—who have specializations in a variety of disabilities. When the Principal Investigators at Lurie become interested in a specific project, they gather a team of professionals across the country to apply for the grant and follow the project.

“It’s like staging a play, in a way,” Mitra said. “You want to have the right people represent the right characters. We want to make sure the right people are doing the research.”

The institute’s research specialization is cross-disability, meaning that they study people with autism, people with intellectual disabilities, developmental, physical and sensory disabilities. It employs 12 full-time positions and eight part-time positions, including research fellows, visiting scholars, postdoctoral and graduate and undergraduate students.

Since October, the National Research Center for Parents with Disabilities, a center within The Lurie Institute, has been conducting a research study with the purpose of understanding pregnancy outcomes, experiences and barriers to care for women who are deaf and hard of hearing. The project is studying all stages of pregnancy, including before, during, childbirth and postpartum. The institute is researching the project in conjunction with Dr. Michael M. McKee, a health researcher at University of Michigan Medical School who has also experienced hearing loss.

“We looked at the literature and found that there was very little to nonexistent research on really knowing what are the disparities and what are the experiences of women who are pregnant and deaf. Do they face communication barriers? Are their differences in their pregnancy outcomes? We found that even globally, the research is almost nonexistent,” Mitra said.

Through collecting data, the project has found that parents with disabilities are more likely to have their children removed by the child welfare system and have their parental rights terminated. As the project proceeds, McKee is working to interview deaf and hard-of-hearing women in four locations across the country, hoping to understand the experience of women in different stages of pregnancy or potential parenting.

“Throughout the institute’s interviews with disabled women, they found that the women felt more pressure to be a better parent than others because they feel constantly judged,” Mitra said.

The institution also has looked at state legislation to support parents with disabilities and often presents their research to policy makers. On their website, a color coded map shows which states are passing and pending legislation.

“What we’re trying to do through this is train stakeholders through all of the states to train child welfare professionals and social workers, so they can be aware of their rights and responsibilities in protecting the rights of parents with disabilities,” Mitra said.

Lurie also conducts Health Needs Assessments that work to understand the needs of people of color with disabilities in select states. Using community forums, key informant interviews, analysis of existing survey data and community surveys, the project conducted the assessments of ethnic, racial and linguistic minority communities. After conducting the assessments in Massachusetts, the Office of Minority Health, an organization of the Food and Drug Administration, gave a grant to the institute in September to conduct Health Needs Assessments in Connecticut and Rhode Island as well, which are currently underway.

“The healthcare system is inaccessible in every possible way, and disability is not seen as an issue of diversity. Slowly it is becoming more of an issue, but there is a marginalization of disability, even in the most progressive spaces. We need to realize it is an issue of diversity. It needs to be integrated, it needs to be included, it needs to be recognized,” Mitra said.

While working the Department of Public Health, Mitra became passionate and deeply involved in disability research.

“I looked at the disparities between people with disabilities and people without disabilities, and I realized that it’s not something that’s discussed. It’s not in the papers and it’s not in conversations. The disparities are so significant and so great and are in any and every facet.”

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