The Lurie Institute for Disability Policy

The Heller School for Social Policy and Management at Brandeis University

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Current Projects

Improving rates of cervical and breast cancer screening for women with intellectual and developmental disabilities

Principal Investigator: Susan L. Parish
Funded by the National Institute on Disability and Rehabilitation Research

Objective: Women with intellectual disabilities are considerably less likely to receive adequate preventive health care than other women. This gap in care is particularly acute with respect to breast exams and Pap tests. These disparities are a significant problem because early detection of breast and cervical cancer substantially reduces morbidity and mortality. Researchers, self-advocates, and service providers have suggested that women with intellectual disabilities need training and support to understand the importance of cervical and breast cancer screening, to assert their needs and concerns to their health care providers, and to manage their anxiety related to their health care needs.

To address this gap, we are testing an intervention that has been developed to teach women with intellectual and developmental disabilities about the importance of these screenings, and how to partner with their health care providers. The study design is a randomized controlled trial, with approximately 200 women at 21 sites across North Carolina. We are collecting qualitative and quantitative data to understand the effectiveness of the intervention, as well as the reasons women do not receive these critical screenings.

Understanding the health and well-being of Indian women with disabilities

Principal Investigator: Nidhiya Menon
Co-Principal Investigator: Susan L. Parish

Objective: We are analyzing data from the National Sample Survey, which is representative of the Indian population. We hope to develop an understanding of the health and financial well-being of Indian women with disabilities, with a particular focus on women who live in rural areas.

Racial and ethnic disparities in family burden and the access, service utilization, and quality of health care for U.S. children with autism and other developmental disabilities

Principal Investigator: Susan L. Parish
Co-Principal Investigator: Sandra M. Magaña, University of Wisconsin-Madison
Funded by the Maternal and Child Health Bureau, HRSA

Objective: Numerous U.S. policy objectives call for research and interventions to reduce racial/ethnic health care disparities. However, few studies have addressed this important issue for children in general, and no studies have examined the extent or correlates of racial/ethnic health care disparities for children with autism and other developmental disabilities. Although research has established that Black and Hispanic children are less likely to be diagnosed than White children, and Hispanic children are diagnosed at a significantly later age than their White counterparts, little other evidence exists about the extent of racial/ethnic health care disparities in this population. Therefore, this study has four aims: (1) To identify the extent and correlates of racial and ethnic disparities in health care access, health care quality and health service utilization of Black and Hispanic children with autism and other developmental disabilities; (2) To examine differences in the health care access, health care quality, and health service utilization of Hispanic children with autism and other developmental disabilities by one dimension of acculturation, parental primary language. Parents whose primary language is Spanish are less likely to be acculturated to U.S. conceptualizations of disability and the U.S. health service system; (3) To identify the extent and correlates of racial and ethnic family burden disparities of Black and Hispanic children with autism and other developmental disabilities; and (4) To examine differences in the family burden of Hispanic children with autism and other developmental disabilities by parental primary language. The four major outcomes include: (a) family burden, measured as absolute out-of-pocket spending, spending relative to family income, whether parents stopped or reduced work to care for the child, and parents' need for mental health services; (b) health care access, measured by insurance coverage, continuity of coverage, adequacy of coverage, having a usual care provider; (c) health care service utilization, measured by number of visits, receipt of preventive care, timely receipt of needed care, referrals to specialty care, receipt of specialty needed care; and (d) health care quality, measured as receipt of care within a medical home, parental satisfaction with care, culturally competent care, and receipt of professional care coordination. The study will specifically determine whether patterns of racial/ethnic disparities persist after controlling for socioeconomic status, severity of impairment, and health insurance status. Identifying the correlates of racial/ethnic health care disparities is imperative as a first step in developing interventions that effectively promote optimal development of vulnerable children with autism.

Autism insurance policy and access to care for children with autism: a state-level analysis

Principal Investigator: Kathleen Thomas, University of North Carolina at Chapel Hill
Co-principal Investigator: Susan L. Parish

Objective: This project addresses MCHB/HRSA's priority interest in autism service systems and infrastructure. The issue of concern is that families with children with autism have a more difficult time finding and paying for services than other families with children with special health care needs. To what extent is state insurance policy on autism associated with better access for children with autism? The proposed study seeks to answer this question through three specific aims: 1. Assess whether access to care for children with autism varies across states, 2. Assess the extent that state characteristics, such as insurance policy on autism, enhance access to care for children with autism, and 3. Indentify the states that have achieved the best access to care for children with autism for future study. Data from the 2005-2006 National Survey of Children with Special Health Care Needs (NSCSHCN) will be augmented with data on state autism insurance policy features to allow an analysis of the association between state autism policy and access to care for families with children with autism compared to families with children with other special health care needs. The NSCSHCN is a complex, multistage sample of children with special health care needs, including autism, representative of the nation as well as each state and the District of Columbia. Multilevel regression will be used to correct for the nonindependence of family-level observations nested within states, and assess the contribution of family and state variables on access to care. This will be the first national study of autism policy tied to outcomes for families. The proposed study can move the field forward in a short timeframe by filling in the big picture of autism state policy impacts. Findings identify state policies associated with better access to care for children with autism, and those states where the constellation of policies is associated with better access. Findings generate hypotheses for future studies to determine why these policies work. The need to develop our understanding of what insurance policies work for autism is pressing. The Autism Treatment Acceleration Act (ATAA), recently introduced in the US Congress, calls for private insurance coverage of the diagnosis and treatment of autism. The proposed study provides important insights for policy design and future study of access to care for children with autism.

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