The Lurie Institute for Disability Policy

The Heller School for Social Policy and Management at Brandeis University

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Current Projects

The Lurie Institute is currently engaging in several federally funded research projects that address topical issues affecting people with disabilities and their caregivers. These projects cut across multiple disciplines and address diverse populations of people with disabilities, but they all share a common theme: research designed to advance the civil, legal and social inclusion of people with disabilities within American society. Our current research initiatives include the National Research Center for Parents with Disabilities, studies on Deaf and hard of hearing women’s pregnancy outcomes and experiences, rehabilitation and disability research, sex education and contraception disparities affecting women with disabilities, and the intersections between disability and race when people with disabilities access healthcare.

National Research Center for Parents with Disabilities (National Institute for Disability, Independent Living and Rehabilitation Research)

The National Research Center for Parents with Disabilities is a cross-disability initiative guided by the ethos of the disability community, “nothing about us without us.” The mission of the center “is to address knowledge gaps regarding the experiences, strengths, and challenges of parents with diverse disabilities and their families through exploratory population-based research to inform policy, practice, and advocacy, the development and testing of interventions for parents and family members; and the systematic translation of evidence-based knowledge into accessible resources for wide dissemination.”

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Pregnancy Outcomes and Experiences among Deaf and Hard of Hearing Women (National Institutes of Health)

By identifying unmet pregnancy and perinatal care needs, this study will define shortcomings in healthcare and other support systems for pregnant DHH women. These findings will inform the development of evidence-based policies and practices to improve perinatal care for DHH women and ultimately improve their and their infants’ outcomes. Finally this study will develop perinatal care recommendations, providing clinicians with practical tools to address the unique needs of this vulnerable population of DHH women.

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Health Needs and Barriers to Perinatal Care for Women with Mobility Disabilities (National Institutes of Health)

Using population-based data from the Massachusetts and Rhode Island Pregnancy Risk Assessment Monitoring System (PRAMS) and the Massachusetts-Pregnancy to Early Life Longitudinal  (PELL) system, we are studying differences in health care utilization and outcomes for women with and without disabilities throughout pregnancy. To supplement this data, we conducted individual interviews with mothers with physical disabilities to understand their unmet needs and barriers to perinatal care. We also conducted individual interviews with obstetric clinicians to understand unmet needs from the provider perspective.

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Improving Pregnancy Outcomes among Women with Intellectual and Developmental Disabilities (National Institutes of Health)

Our aim is to identify unmet needs and barriers to perinatal care for women with intellectual and developmental disabilities through in-person interviews with pregnant women and new mothers with intellectual and developmental disabilities. This information will be used to generate practice recommendations to improve the perinatal healthcare of women with intellectual and developmental disabilities and their infants.

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Pregnancy Experiences of Women with IDD: Family Caregiver Perspectives (Eunice Kennedy Shriver National Institute for Child Health and Human Development) 

The goal of this project is to determine the role of family caregivers in assisting women with intellectual and developmental disabilities (IDD) in accessing perinatal care and supports. Additionally, we aim to identify the unmet needs and barriers to health care and other supports related to pregnancy among women with IDD, as perceived by family caregivers.

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Advanced Rehabilitation Research Training Program on Health and Functioning of People with Disabilities  Post-doctoral Fellowship (National Institute on Disability, Independent Living, and Rehabilitation Research) 

The post-doctoral training program at the Lurie institute aims to prepare professionals capable of conducting needed, high-quality, multidisciplinary rehabilitation and disability research to improve the health and functioning of individuals with disabilities.

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Disability-related Disparities in Sex Education, Contraceptive Use and Unintended Pregnancy (Maternal and Child Health Field Initiated Research Program)

We are conducting the first-ever national investigation of sex education, contraceptive use, and unintended pregnancy among US women with disabilities. Our goal is to assess whether there are significant differences in sex education, contraceptive use, and pregnancy intention between women with and without disabilities and among women with cognitive, sensory, independent-living and physical disabilities.

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Health of People with Mobility Limitations and Intellectual Disabilities through State-based Public Health Programs (Centers for Disease Control and Prevention; contracted from the Massachusetts Department of Public Health)

The Health and Disability Program (HDP) within the Office of Health Equity has contracted with Brandeis University’s Lurie Institute to carry out evaluation and data analysis activities pertaining to the health of people with disabilities who use state-based public health programs. The evaluation team is working with HDP staff to identify and analyze health indicators and disparities relating to diabetes among people with mobility limitations for use in an issue brief on the subject.

Grant # NU27DD000002 [Contract from the Massachusetts Department of Public Health]

The Intersectionality of Disability and Race: A Health Needs Assessment of People with Disabilities Who Identify as Racial, Ethnic, and Linguistic Minorities for the States of Rhode Island and Connecticut (U.S. Department of Health and Human Services Office of Minority Health)

Racial, ethnic, and linguistic minorities and people with disabilities experience inequities in health care access, quality, and outcomes.  Traditionally, people with disabilities and racial, ethnic, and linguistic minorities have been considered two separate disparity populations by most efforts to document and reduce health inequity.  However, as we know, disability occurs across all racial, ethnic, language, and social groups, and people with disabilities who are also racial, ethnic, or linguistic minorities often face dual challenges in health systems, and may have unique needs.  Therefore, understanding the intersections of race and disability, and their impact on health, are important health care goals, as racial, ethnic, and linguistic minorities with disabilities are a vulnerable, underserved population. 

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