The Lurie Institute for Disability Policy

Past Projects

This page contains a list of completed research projects the Lurie Institute has engaged in, including analyses of the needs of pregnant women with mobility disabilities, the effect of parental military employment on children with disabilities, the socioeconomic status of people with disabilities, and the transition to adult life for youth on the autism spectrum.

2021

  • 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.
  • 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.
  • INROADS (Intersecting Research on Opioid Misuse, Addiction and Disability Services):
    INROADS is a joint research program between Brandeis University’s Institute for Behavioral Health and Lurie Institute for Disability Policy. It examines the intersection between addiction, disability, and service provision in an effort to address the rise of opioid use disorders (OUD) among people with disabilities. Funded by: National Institute on Disability, Independent Living and Rehabilitation Research.
  • 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: Administration for Community Living.
  • Improving Pregnancy Outcomes of Women with Intellectual and Developmental Disabilities:
    This research initiative examines the perinatal health outcomes of women with intellectual and developmental disabilities (IDD) in the United States and their infant children, using population-based data. Specifically, through in-person interviews with pregnant women and new mothers with IDD and with healthcare staff who work with this population this study investigates pregnancy and childbirth outcomes, complications, and inpatient costs among women with and without IDD; examines longitudinal outcomes, healthcare utilization, and costs for women with IDD and their infants; and identifies unmet needs and barriers to perinatal care for women with IDD. Funded by: National Institutes of Health.
  • Pregnancy Outcomes and Experiences among Deaf and Hard-of-Hearing Women:
    Women who are Deaf or hard of hearing often encounter obstacles to receiving appropriate reproductive health services or information. This study addresses these disparities through research of national datasets, analyses of longitudinal health outcomes, administration of a national survey, and structured interviews with Deaf and hard-of-hearing mothers and the clinicians who work with them. This study will lead to a first-ever systematic understanding of pregnancy and infant health outcomes and pregnancy costs for Deaf and hard-of-hearing women. Funded by: National Institutes of Health.
  • Parenthood, Health, and Health Behaviors of Fathers with Disability:
    This study investigates fatherhood, health, and health behaviors among US fathers with disabilities. Using data from the National Survey of Family Growth (NSFG) for the years 2011–13, 2013–15, and 2015–17, this study examines the extent and types of childbearing responsibilities, typologies of father involvement, and health status and prevalence of unhealthy behaviors among fathers with disabilities.
  • Supportive Services for Parents with Disabilities:
    This study provides the first national-level examination of supportive services provided to parents with multiple disabilities during their involvement with the child-protection system. This knowledge will inform service development, implementation, and dissemination, improving support for parents and children within the child-protection system.
  • Impact of COVID-19 on Medicaid Beneficiaries Receiving Home and Community-Based Services:
    This research project studies COVID-related mortality among adults with disabilities through the examination of data provided by health plans and explores the experiences of individuals self-directing their services and supports during the COVID pandemic.

2020

  • Civic Engagement for People with Disabilities: 
    In partnership with the Sillerman Center for the Advancement of Philanthropy at Brandeis University, this study identified barriers to civic engagement for people with disabilities; highlighted example cases of civil-engagement organizations that develop disabled leaders and of disability organizations that integrate civic engagement and leadership; and developed recommendations for philanthropy and civic-engagement organizations to enhance disabled people's civic participation. Our goal was to collaborate with philanthropic organizations to empower people with disabilities—particularly people of color with disabilities—to strengthen our democracy. Funded by: Ford Foundation.
  • Understanding the Health Care Needs and Experiences of Boston Children with Special Health Care Needs:
    This study used data from the Boston Survey of Children’s Health, a representative study of the health and well-being of children in Boston, to examine healthcare access, service utilization, quality, and disparities among Boston children with and without special healthcare needs from the perspective of parents. Funded by: Deborah Munroe Noonan Memorial Research Fund.
  • Assessing Shared Living as a Residential Option for Youth Transitioning to Adult Services:
    The purpose of this study was to gain an in-depth understanding of the implementation and operation of Shared Living (SL) opportunities among youth who are transitioning to adult services and to assess the ways in which SL must evolve in the future. Interviews were conducted with personnel from the Department of Developmental Services (DDS) and from SL provider agencies across the state. The results provided descriptive data on SL households and generated recommendations for improving and expanding SL opportunities. Funded by: Deborah Munroe Noonan Memorial Research Fund. 

2019

  • Program Evaluation for Health and Disability Program
    This program evaluates the efficacy of the Massachusetts Department of Public Health's Core Implementation initiatives to help improve the health of people with mobility limitations in Massachusetts through the promotion of oral health and physical activity.  

2018

  • Disability-Related Disparities in Sex Education, Contraceptive Use and Unintended Pregnancy, Maternal and Child Health Field Initiated Research Program, Maternal and Child Health Bureau
    Funder: Health Resources and Services Administration, U.S. Department of Health and Human Services
  • Trends, Patterns, Quality, and Costs of Hospital Utilization among Working-Age Adults with Autism Spectrum Disorders
    Funded by Brandeis University's Office of the Provost
  • The Great Recession and Unemployed People with Disabilities: Have the Barriers to Work Changed? Analyzing Relationships between Disability
    Funder: Rehabilitation and Work Small Grant Program, U.S. Social Security Administration
  • Health Needs and Barriers to Perinatal Care for Women with Mobility Disabilities
    Funder: Eunice Kennedy Shriver National Institute of Child Health and Human Development
  • Rehabilitation Research and Training Center on Health and Function of Individuals with Intellectual and Developmental Disabilities
    Funder: National Institute on Disability and Rehabilitation Research, U.S. Department of Education

2017

  • Disability Review at the John F. Kennedy Library Archives
    Funder: Joseph P. Kennedy, Jr., Foundation. 2017. 
  • The Impact of Parental Military Deployment on Children with Disabilities
    Funder: Eunice Kennedy Shriver National Institute of Child Health and Human Development. 
  • Predicting Entry into the SSI Program, Disability Determination Process (DDP)
    Funder: Small Grant Program, Policy Research, Inc. 
  • Ruderman Social Justice Scholars in Disability Program
    Funder: Ruderman Family Foundation. 
  • Strategies to Enhance Initial Adult Care Visits for Transitioning Youth with Autism Spectrum Disorders, Project within the Massachusetts General Hospital’s Autism Intervention Research Network on Physical Health (AIR-P)
    Funder: Health Resources and Services Administration, Maternal and Child Health Research Bureau. 
  • Testing Innovative Interventions to Improve Relational Care for People with Chronic Severe Brain Injury
    Funder: Brandeis University Office of the Provost. 

2016 and Prior Years

  • Diversity-Related Research
    Funder: Heller School for Social Policy and Management Seed Funding, Brandeis University
  • The Intellectual and Developmental Disability Policy Academy: A Participatory Action Research Project to Increase Voice and Visibility of People with Disabilities
    Funder: Heller School for Social Policy and Management Seed Funding, Brandeis University
  • A Longitudinal Study of the Impact of Family Caregiving on Employment
    Funder: Heller School for Social Policy and Management Seed Funding, Brandeis University
  • Making Healthy Connections: What are the Long-Term Benefits?
    Funder: Deborah K. Noonan Memorial Research Fund
  • Preparing for the Unfamiliar: An App for Individuals with Autism to Prepare for Doctor’s Visits
    Funder: Brandeis University SPARK Grant
  • Self-Advocates and Families Initiative - Leading Rather than Following
    Funder: Joseph P. Kennedy Foundation
  • Review of Sickle Cell for the Compassionate Allowance Listing, Disability Determination Process
    Funder: Small Grant Program, Policy Research, Inc.
  • Improving the Health of People with Disabilities through State-Based Public Health Programs
    Funder: Center for Disease Control, Massachusetts Department of Public Health