Lurie Institute for Disability Policy spotlights healthcare inequities for women with intellectual disabilities


Why is it that nearly half of women with intellectual disabilities are not receiving the appropriate medical care they need and deserve to detect cervical cancer?

Scholars at the Lurie Institute for Disability Policy at the Heller School for Social Policy and Management are working to answer that question with their Women Be Healthy initiative.

The research – launched by Susan Parish, Nancy Lurie Marks Professor of Disability Policy and Director of the Lurie Institute for Disability Policy – has yielded a number of troubling findings.

For example, in 2013, Parish found that only 55 percent of women with intellectual disabilities were receiving Pap tests according to clinical guidelines. Meanwhile, 85 percent of women without intellectual disabilities received the same tests.

The results of Parish’s research were echoed by a national study, which found that women with intellectual disabilities were 72 percent less likely than women without intellectual disabilities to get screened for cervical cancer.

As a result of these findings, the Lurie Institute for Disability Policy is taking steps to make a difference.

“If we don’t educate, it will be hard to make a change in screening rates,” said Michelle Techler, Assistant Director of the Lurie Institute for Disability Policy.

The Lurie Institute’s Women Be Healthy initiative recently released several YouTube videos that highlight the importance for all women – including those with intellectual disabilities – to receive mammograms and Pap tests.

These videos also model techniques for family caregivers of women with disabilities to advocate for these procedures with medical professionals and were designed for family caregivers who often help women with intellectual disabilities obtain health care services.

The need for education aimed at caregivers is “something we  know is needed from caregivers and advocates,” said Leah Igdalsky ’14, Lurie Institute Research Associate, who received a $10,000 SPARK grant to fund the video project. “There is a taboo related to sexuality for people with disabilities.”

The videos were the product of more than three years worth of work. Igdalsky, Techler and Parish hired actors and actresses – some of whom have intellectual disabilities – to appear in the films, while the scripts were written in collaboration with Danielle Sackstein’14 and Ruth Zeilicovich’14, the first class of Ruderman Social Justice in Disability Scholars.  

Ruderman Scholars are Brandeis students with a particular interest in the field of disability.

Parish’s research confirms the need for more education for medical care providers and more support for women with intellectual disabilities and their caregivers when it comes to women’s health screenings.

“I think of intervention to improve screening rates in terms of a triangle,” Igdalsky said. “We need to reach women, reach caregivers and then reach medical providers.”

“Doctors need more information. Of course there are excellent doctors who do wonderfully with all of their patients, but we’ve also seen that many get maybe one hour worth of training in medical school about how to treat people with disabilities,” she added.

The research and videos are just the beginning, as the Women Be Healthy team will continue to connect with medical providers, advocates and caregivers. So far, the response has been rewarding.

“One thing that we hear often from people in our focus groups is ‘thank you for paying attention to us, because we don’t feel like anyone else is,’” Techler said.

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