The Lurie Institute for Disability Policy and its four federally funded centers work on research projects that focus on varied issues affecting people with disabilities. These projects range from research on healthcare outcomes and barriers for people with disabilities to research on parenting and pregnancy among people with disabilities and research on access to viable community living options for disabled individuals.
Our current research initiatives are many, with topics that include a virtual intervention to support adults with intellectual and developmental disabilities and aging family caregivers in planning for the future; development of an online continuing-education program for obstetricians; research on the sexual and reproductive healthcare disparities and barriers among adolescents and young adults with disabilities; research on economic inclusion for Black disabled families; and research on disabled people of color's experience with structural racism/ableism barriers in accessing Medicaid home and community-based services. Explore all of our current projects below.
Current Projects
- Parents Empowering Parents: National Research Center for Parents with Disabilities and Their Families:
The National Research Center for Parents with Disabilities is a multidisciplinary research program intended to address knowledge gaps regarding the experiences, challenges, and needs of parents with disabilities and their families. Research activities include analyses of large-scale national datasets to develop recommendations for policies and programs affecting parents with disabilities; studies of the interactions between child welfare, legislation, and the rights of parents with disabilities to identify barriers and facilitators to changing state and federal laws to protect parents with disabilities; intervention models to support parents with disabilities, including parents with psychiatric disabilities, Deaf and hard-of-hearing parents, and parents with intellectual disabilities; and translations of our research on parents with disabilities into accessible formats for a variety of relevant audiences, including parents and their families, advocates, policymakers, and attorneys. Funded by: National Institute on Disability, Independent Living, and Rehabilitation Research. - National Center for Disability and Pregnancy Research:
The National Center for Disability and Pregnancy Research conducts research about reproduction, pregnancy, and disability. Our research covers reproductive health, sex education, prenatal health, childbirth, interactions with obstetricians, and support networks. NCDPR's three main goals are to fill in gaps in what is known about pregnancy and disability among people with disabilities, particularly disabled people of color, to develop and test interventions and supports that may improve the experience of pregnancy among people with disabilities, and to promote better pregnancy outcomes for all people with disabilities. Funded by: National Institute on Disability, Independent Living, and Rehabilitation Research. - Community Living Policy Center:
The Community Living Policy Center (CLPC) is a cross-disability initiative to research policies and practices that promote community living and participation outcomes for people with disabilities of all ages and to share our findings on community living and participation with the general public. Funded by: National Institute on Disability, Independent Living, and Rehabilitation Research. - Community Living Equity Center:
The Community Living Equity Center (CLEC) examines barriers in access to community living services and support for underserved people with disabilities. Lack of data about these populations hinders the development of effective policies and interventions. By researching and addressing current knowledge gaps, the CLEC will develop new policies and initiatives to enhance access and quality of community living services and supports. Funded by: National Institute on Disability, Independent Living, and Rehabilitation Research. - Enhancing Maternal Care for Women with Intellectual and Developmental Disabilities (IDD): A Toolkit for Doulas and Healthcare Providers:
Informed by a diverse group of stakeholders, including professional doulas, lay-doulas, persons with intellectual and developmental disabilities (IDD) who have experienced pregnancy and childbirth, and other healthcare professionals, this project is developing and will disseminate a comprehensive toolkit to support doulas and healthcare professionals in caring for women through labor and delivery. Lurie researchers are working in collaboration with researchers from Georgetown National Center for Cultural Competence and the University of New Hampshire Institute on Disability on this project, which will enhance the practices of labor and delivery doulas, healthcare professionals, and support persons in addressing the unique needs of pregnant and laboring women with IDD. Funded by: WITH Foundation. - Health and Functioning of People with Disabilities:
This is a postdoctoral fellowship that focuses on racial, ethnic, and disability-based health disparities affecting children and adults with disabilities. Each Postdoctoral Fellow receives training that is uniquely suited to their interests and goals and driven by an Individual Development Plan. Funded by: National Institute on Disability, Independent Living, and Rehabilitation Research. - Disparities in Perinatal Care and Outcomes among Black Women and Latinas with Physical Disabilities:
Women with physical disabilities experience stark differences in pregnancy care, complications, and outcomes than women without disabilities. Black women and Latinas also experience significant differences in perinatal care and outcomes compared to white women. This project builds on preliminary research and investigates the risk of adverse experiences and outcomes in perinatal care among Black women and Latinas who have physical disabilities, which has not previously been studied. Using mixed methods along with an intersectional approach relating to race/ethnicity and disability, this project studies pregnancy experiences, maternal and infant outcomes, related healthcare costs, and unmet perinatal healthcare needs of Black women and Latinas with physical disabilities and their infants. The study will lead to a first-ever systematic understanding of pregnancy and infant health outcomes and pregnancy care costs for Black women and Latinas with physical disabilities, establishing a foundation for development and testing of future interventions to improve outcomes. Funded by: Eunice Kennedy Shriver National Institute Of Child Health & Human Development of the National Institutes of Health. - Examining Disabled People of Color's Experience with Structural Racism/Ableism Barriers in Accessing Medicaid Home & Community-Based Services:
Racial disparities and inequities in the ways communities of color, including disabled people of color, access and experience Medicaid programs came to light during the COVID-19 pandemic. This was particularly true for people with disabilities receiving Medicaid long-term services and supports. This project studies disparities in the experiences of people who access and use Medicaid Home and Community-Based Services (HCBS). Through qualitative interviews with disabled people of color and focus groups with state officials and program staff from Money Follows the Person Programs and quantitative analysis from the 2019 Transformed Medicaid Statistical Information System (T-MSIS) data, this project looks at the racial and ethnic disparities that exist in utilization of and access to HCBS within states and the structural and systemic barriers and facilitators to access to HCBS and transitions from nursing homes to the community among disabled people of color. This study is led by the Community Living Policy Center, composed of national and state disability rights organizations, including disability-led organizations. Trained lived-experience experts will conduct key-informant interviews and qualitative analysis, and inform quantitative analysis. Funded by: Robert Wood Johnson Foundation. - Family Support Research and Training Center (FSRTC) to Bridge Aging and Disability:
This project—a collaboration between Lurie Institute researchers and the Family Support Research and Training Center at the University of Illinois Chicago—will analyze four policy issues: (1) improving national data and data collection on family support; (2) promoting family caregiver assessments within Medicaid HCBS programs to improve support of family caregivers and care recipients; (3) enhancing opportunities for self-direction and payment of family caregivers within Medicaid HCBS programs; and (4) removing barriers to family support services in underserved communities. Lurie Institute researchers are also analyzing secondary data from three national datasets. We are analyzing Behavioral Risk Factor Surveillance System data to explore caregiving profiles of diverse, understudied caregiving subpopulations, including racial/ethnic minority caregivers, rural caregivers, LQBTQ+ caregivers, and caregivers with disabilities. We are analyzing Medicaid claims data from the Transformed Medicaid Statistical Information System (T- MSIS) to explore access and utilization of respite within states. We are using the NCO-IDD Family Surveys to explore differences in family experiences by demographics and the extent to which the quality of service provision is associated with community living outcomes for the family. Funded by: National Institute on Disability, Independent Living, and Rehabilitation Research. - Virtual Future Planning(V-FIN) for Adults with Intellectual and/or Developmental Disabilities and Aging Families:
This project is part of a larger Field Initiated Project with the University of Illinois Chicago to develop a virtual intervention to support adults with intellectual and developmental disabilities (IDD) and aging family caregivers in planning for the future at the University of Illinois at Chicago. Future planning is a critical task for aging caregivers and adults with IDD. Nearly three quarters of adults with developmental disabilities live at home with family caregivers and over a quarter of these caregivers are age 60 or above. The Community Living Policy Center is assisting with the development and pilot testing of the virtual version of the intervention. Funded by: National Institute on Disability, Independent Living, and Rehabilitation Research. - Carrie Buck Distinguished Fellowship:
The Lurie Institute for Disability Policy has established the Carrie Buck Distinguished Fellowship to honor the memory of Carrie Buck, a woman who was the subject of the U.S. Supreme Court case that in 1927 approved the involuntary sterilization of people with disabilities. The Fellowship is intended to assist in rectifying the injustice to which she and thousands of other people in the United States have been subjected. The fellowship is intended for activists, scholars, and community organizers with disabilities whose work draws national attention to systemic ableism in reproductive health policy. During the residency, the Carrie Buck Distinguished Fellow works with community members, researchers, and advocates to illuminate ways to eliminate ableist bias and create a healthcare system that meets the needs of all. The residency culminates in a public lecture hosted by the Lurie Institute for Disability Policy. Funded by: Ford Foundation. - Addressing Sexual and Reproductive Health Care Disparities and Barriers among Adolescents and Young Adults with Disabilities:
This mixed-methods study examines sexual and reproductive health (SRH) and healthcare utilization as well as SRH-related unmet needs among transition-age adolescents and young adults with disabilities in the United States, both overall and by disability type. Research on SRH and receipt of SRH-related health care among AYA with disabilities remains limited. Scant evidence informs our understanding of the reproductive healthcare needs of both young women and men with disabilities by disability type and there is no research on reproductive healthcare service utilization across the breadth of this diverse population. This project develops information from national survey data, interviews with AYA with disabilities, and interviews with parents of AYA with disabilities. Our analyses establish a foundation for development and pilot testing of a tailored intervention to improve SRH care and outcomes for AYA with disabilities, ages 15–26. This intervention is being developed in collaboration with AYA with disabilities and is an innovative, accessible, multi-media educational toolkit to address identified barriers and unmet needs. Funded by: Eunice Kennedy Shriver National Institute Of Child Health & Human Development of the National Institutes of Health. - A Continuing Education Intervention to Address Ableism Among Obstetric Clinicians Providing Perinatal Care:
This project develops an online continuing-education program for obstetricians with the goal of increasing the timely provision of evidence-based, inclusive perinatal care to women with disabilities. There is an urgent need to address the deleterious effects of ableist practices and policies on the pregnancy-related experiences and outcomes of women with disabilities. While research shows that women with disabilities are as likely to choose pregnancy and parenthood as their nondisabled counterparts, they have a significantly higher risk for adverse maternal and child health outcomes driven by barriers to appropriate care, stigma, and inadequate provider training. Funded by: Eunice Kennedy Shriver National Institute Of Child Health & Human Development of the National Institutes of Health. - Positive Postpartum Experiences for Women with IDD: A Strengths-Based Study:
This project explores experiences related to postpartum mental health for women with intellectual and developmental disabilities (IDD), including opportunities to leverage contextual and internal resources to support well-being, with a focus on women from racial and ethnic minority communities. Specific aims include: (1) examining experiences, including perceived needs and/or opportunities for additional support, that are related to postpartum mental health for women with IDD, including women from racial and ethnic minority communities; and (2) examining contextual and internal resources that promote postpartum mental health for women with IDD, including women from racial and ethnic minority communities. Funded by: National Research Consortium on Mental Health in Intellectual and Developmental Disabilities at the University of New Hampshire. - Personal Care Attendant Primer:
Lurie Institute researchers are developing a chart pack to help policymakers, stakeholders, and advocates better understand the Personal Care Attendant (PCA) program in MassHealth, Massachusetts’ Medicaid program, and its impact on people’s lives. The chart pack will describe how the PCA program is structured in MassHealth (i.e., what the eligibility criteria are, how people’s numbers of hours are determined, and how PCAs are hired and supervised, etc.). It will offer a high-level summary of how MassHealth’s program has evolved over time and how it differs from (and is similar to) other states’ programs. It will also offer a brief synopsis of the literature on the strengths and downsides of the consumer-directed model. The chart pack will also describe what is known about who uses the PCA services in the MassHealth program and why, who serves as PCAs, what tasks PCAs perform for MassHealth members, and the impact the PCA program has on people’s lives. Funded by: Blue Cross Blue Shield of Massachusetts Foundation, Inc. - Economic Inclusion for Black Disabled Families:
The Economic Inclusion for Black Disabled Families (EIBDF) study aims to address gaps in knowledge and explore steps to support economic justice and equity for black disabled families. While research has been conducted on how disabled people of color access, use, experience, and are affected by education, healthcare, employment, and penal systems, little has been done to understand racial and ethnic disparities in community living. This study will apply a disability justice, racial justice, and intersectional lens when assessing economic disparities amongst black disabled families across generations. Using a mixed-methods approach, this study will conduct a qualitative analysis to explore the perspectives and lived experiences of disabled black families. By addressing the current knowledge gap about disparities impacting economic inclusion and economic mobility of black disabled families, the study will develop recommendations for economic equity.