Susan L. Parish

Susan L. Parish
Virginia Commonwealth University | VCU · College of Health Professions

PhD, MSW

About

194
Publications
42,937
Reads
How we measure 'reads'
A 'read' is counted each time someone views a publication summary (such as the title, abstract, and list of authors), clicks on a figure, or views or downloads the full-text. Learn more
3,795
Citations
Introduction
I am dean of the College of Health Professions at Virginia Commonwealth University. I am also co-director of the National Research Center on Parents with Disabilities. My research examines the health and financial well-being of children and adults with disabilities and their families.
Additional affiliations
July 2010 - present
Brandeis University
Position
  • Nancy Lurie Marks Professor of Disability Policy
July 2003 - June 2010
University of North Carolina at Chapel Hill
Position
  • Professor (Associate)
September 2001 - June 2003
University of Wisconsin–Madison
Position
  • NICHD postdoctoral research fellow

Publications

Publications (194)
Article
OBJECTIVES To assess the risk of neonatal complications among women with a disability. METHODS This population-based cohort study comprised all hospital singleton livebirths in Ontario, Canada from 2003 to 2018. Newborns of women with a physical (N = 144 187), sensory (N = 44 988), intellectual or developmental (N = 2207), or ≥2 disabilities (N =...
Article
Full-text available
Purpose To examine the risk of perinatal mental illness, including new-onset disorders and recurrent or ongoing use of mental health care, comparing women with physical, sensory, intellectual/developmental, and multiple disabilities to those without a disability. Methods From all women aged 15–49 years with a singleton birth in Ontario, Canada (20...
Article
Parents with disabilities and their families experience pervasive inequities within the child welfare system. However, existing conceptual frameworks do not adequately explain or address the unique needs and experiences of parents with disabilities and their families involved with the child welfare system. Accordingly, we present a conceptual frame...
Article
Background As recent as the mid-twentieth century, eugenics practices on women with intellectual and developmental disabilities were commonplace. Deinstitutionalization has led to an increasing proportion of women with intellectual and developmental disabilities living in the community and becoming pregnant. Previous research has reported barriers...
Article
Background Disability is common in reproductive-aged women, and as many as one in eight pregnancies occur in women with a disability. Women with disabilities experience significant social and health disparities, and are at greater risk than their non-disabled counterparts for perinatal complications. Yet, few studies have examined their postpartum...
Conference Paper
Full-text available
The UK Government (2021a) recently calculated that 14 million people in the UK are disabled. That’s around 21% of the population, a figure that has steadily increased from 18% a decade ago. This matters because there are substantial differences in life outcomes for disabled people. There is a 50% difference in household income between disabled and...
Article
Research Objective The Supplemental Nutrition Assistance Program (SNAP) has been found to reduce food hardships, which are associated with poor health and health care outcomes among children. Evidence that SNAP improves adult health and healthcare outcomes is growing, but studies including children have been limited. The need to assess these potent...
Article
Objectives Increasingly, women with disabilities are becoming pregnant. However, they are at elevated risk of pregnancy complications. The objective of this study was to understand the pregnancy-related care experiences of women with physical, sensory, and intellectual/developmental disabilities, including what services and supports they accessed d...
Article
Background Women with intellectual and developmental disabilities (IDD) experience disparities in obstetric care access and quality, in addition to communication gaps with healthcare providers. Many obstetric providers are untrained and uneducated about critical aspects of providing care to persons with IDD. Objective The study was conducted to de...
Article
Barriers to health care access can greatly affect one's health status. Research shows that U.S. adults with intellectual and developmental disabilities (IDD) have poor health and face barriers such as long waits for appointments. However, whether barriers differ by race and ethnicity has not been examined. We conducted a secondary data analysis usi...
Article
Full-text available
Importance: Severe maternal morbidity and mortality are important indicators of maternal health. Pregnancy rates are increasing in women with disabilities, but their risk of severe maternal morbidity and mortality is unknown, despite their significant social and health disparities. Objective: To determine the risk of severe maternal morbidity or...
Article
Lay abstract: While an increasing number of girls and women are being identified with autism, we know little about reproductive-aged autistic women's health. This study used administrative data from Ontario, Canada, to compare the health of reproductive-aged autistic women with non-autistic women. Overall, reproductive-aged autistic women had poor...
Article
Background : There is growing recognition that preconception health, defined as the health of all reproductive-age individuals, impacts reproductive and perinatal outcomes. Although women with disabilities are becoming pregnant at increasing rates, little is known about their preconception health. Our objective was to describe the preconception hea...
Article
In 2017, South Korea’s total fertility rate was 1.26 live births per woman, the sixth-lowest in the world. Employment is significantly negatively associated with second births in Korea. To increase fertility rates and help working women better balance work and family lives, a series of government family-supportive workplace policies and employer-pr...
Article
Objective To compare exposure to household food insufficiency and the relationship between household food insufficiency and both health status and emergency healthcare utilisation among children with and without special healthcare needs (SHCN). Design Analysing pooled data from the 2016–2017 iterations of the National Survey of Children’s Health,...
Article
Introduction Postpartum health care among women with intellectual and developmental disabilities has not been well studied. This study uses administrative claims to compare postpartum outpatient visits among women with and without intellectual and developmental disabilities. Methods Massachusetts All Payers Claims Database 2012–2015 was used to id...
Article
Objectives Increasing numbers of women with disabilities are becoming pregnant, and they are more likely than other women to experience perinatal complications. This study aimed to understand the pregnancy and delivery care experiences and needs of women with disabilities, from the perspective of patients and care providers. Methods Semi-structure...
Article
Understanding the pregnancy experiences of racial and ethnic minority women with intellectual and developmental disabilities (IDD) is critical to ensuring that policies can effectively support these women. This research analyzed data from the 1998–2013 Massachusetts Pregnancy to Early Life Longitudinal (PELL) data system to examine the racial and e...
Article
Full-text available
A sizable body of scholarship indicates parents with disabilities — including physical, intellectual, psychiatric, and sensory disabilities — experience pervasive inequities that threaten their fundamental right to parenthood. In particular, compared to non-disabled parents, parents with disabilities are over-represented in the child welfare system...
Article
Full-text available
The right to parent has long been regarded as one of our most treasured fundamental rights. Despite the disability rights movement’s many achievements, especially the passage of the Americans with Disabilities Act (“ADA”) in 1990, the right to parenthood remains inaccessible to many people with disabilities. Scholars and advocates have posited that...
Article
Full-text available
The present study examined the association of family policies on married working mothers in South Korea’s work-family conflict. The goal of the study was to compare the differential effects of policy availability and accessibility on reducing mothers’ work-family conflict. Given Korea’s work culture, which emphasises long working hours and work-ori...
Article
Background Women with disabilities experience significant health disparities. A barrier to progress in addressing these disparities is the lack of population-based data on their health outcomes, which are needed to plan health care delivery systems. Administrative health data are increasingly being used to measure the health of entire populations,...
Article
Substantial numbers of US parents with psychiatric disabilities are highly vulnerable to loss of child custody or visitation, through child welfare system involvement or divorce proceedings. This study describes the community-based needs of parents with psychiatric disabilities who experienced legal challenges to their parenting rights. This explor...
Article
To better understand disparities between Latino and White children with autism or other developmental disabilities (ASD/DD), we examined whether Latino ethnicity predicted the number of specialty care services received by children with severe functional limitations depending on medical providers' responses to parents' initial concerns about their c...
Article
Full-text available
A growing body of scholarship demonstrates that parents with psychiatric disabilities and their families experience a range of inequalities that families with nondisabled parents do not suffer. Parents with psychiatric disabilities contend with pervasive discrimination within the child welfare and family law systems, often resulting in the removal...
Article
Full-text available
The present study examined the employment status of disabled and nondisabled men and women in the United Kingdom. Using the 2009–14 Life Opportunities Survey (N = 32,355 observations), the study empirically examined how the intersection of disability and gender affects disabled women and their employment status in the UK. Random effects multinomial...
Article
Background: While people with intellectual disability (ID) face disparities relating to sexual and reproductive health (SRH) services, little is known about the role of family caregivers who assist women and girls with ID access SRH services. This scoping review examined the findings of studies to elucidate the role of family caregivers with regar...
Article
Full-text available
Objective The medical home has been promoted as an optimal model of health care delivery for children. The purpose of this study was to examine the association between having access to a medical home and the health care experiences of children with and without special health care needs (SHCN) in the United States. Methods We analyzed data from the...
Preprint
Full-text available
To better understand disparities between Latino and White children with autism and/or other developmental disabilities (ASD/DD), we examined whether Latino ethnicity predicted the number of specialty care services received by children with severe functional limitations depending on medical providers' responses to parents' initial concerns about the...
Article
Food insecurity patterns before and after initial receipt of Supplemental Security Income - CORRIGENDUM - Rajan A Sonik, Susan L Parish, Monika Mitra
Article
This article explores the role of formal and informal supports for women with intellectual and developmental disabilities (IDD) throughout their pregnancy, childbirth, and postpartum experiences. Data from qualitative interviews with women with IDD (n = 16) were analyzed. Results showed that formal supports aided in planning, transportation, advoca...
Article
People with intellectual disabilities (ID) have high lifetime risk of abuse and assault, including sexual violence. As adults with ID participate in research, researchers must be prepared for disclosures of past or current abuse. In collaboration with our state's protective agency, we developed a protocol for responding effectively to disclosures o...
Article
Supplemental Security Income (SSI) is a cash-transfer program for individuals with severe disabilities and very low incomes and assets. Material hardships such as food insecurity are particularly problematic to the health status of individuals with disabilities.¹ These hardships have been shown to increase sharply immediately before people first re...
Article
Objective To assess patterns of food insecurity before and after initial receipt of Supplemental Security Income (SSI) benefits. Design We analysed data from a nationally representative sample. We estimated two difference-in-difference models comparing food insecurity patterns among eventual SSI recipients with patterns among eligible non-recipien...
Article
Background An emerging body of evidence underscores the often-intensive perinatal healthcare needs of women with intellectual and developmental disabilities (IDD). However, population-based research examining postpartum experiences of US women with IDD is sparse. We examined emergency department (ED) use in the postpartum period among Massachusetts...
Article
Full-text available
The present study examined the economic well‐being of disabled and nondisabled men and women in the United Kingdom. Using the 2009–2014 Life Opportunities Survey (N = 6,159 adults), the study is the first longitudinal study to empirically compare the economic well‐being of disabled women in contrast to disabled men and nondisabled men and women. Hi...
Article
Background Women with intellectual and developmental disabilities (IDD) in the USA are bearing children at increasing rates. However, very little is known whether racial and ethnic disparities in birth outcomes and labour and delivery‐related charges exist in this population. This study investigated racial and ethnic disparities in birth outcomes a...
Article
Introduction: Food insecurity worsens health outcomes and is associated with increased health care usage and expenditures. The Supplemental Nutrition Assistance Program (SNAP) reduces but does not eliminate recipients' food insecurity. We sought to determine whether inpatient Medicaid usage and expenditure patterns responded to an April 2009 incre...
Article
Full-text available
Objectives This study examined the risk of postpartum hospital admissions and emergency department (ED) visits among US women with intellectual and developmental disabilities (IDD). Methods We used the 2002–2012 Pregnancy to Early Life Longitudinal Data System and identified deliveries to women with and without IDD. Women with IDD (n = 1104) or cas...
Article
Full-text available
This population-based retrospective cohort study examines the prevalence of hospital utilization during pregnancy and the primary reason for antenatal hospital utilization among women with intellectual and developmental disabilities (IDD). Massachusetts residents with in-state deliveries that were ≥ 20 weeks gestational age were included via data f...
Article
The low employment rates of individuals with intellectual disability (ID) are a major concern. This study examined the effect of postsecondary education on employment atrnd earnings for individuals with ID and the effect of state variation on those outcomes. Rehabilitation Services Administration 911 (RSA-911) files for 2008-2013 were analyzed (n =...
Article
Objective: To compare female sterilization among three mutually exclusive groups of females: 1) those without any self-reported disability, 2) those with noncognitive disabilities (sensory or physical disabilities), and 3) those with cognitive disabilities. Methods: We conducted a secondary analysis of nationally representative data from the Nat...
Article
Full-text available
Objective: To estimate provision of moderately and highly effective reversible contraceptives to women with intellectual and developmental disabilities. Methods: We used data from the Massachusetts All-Payer Claims Database to identify women aged 15-44 years with and without intellectual and developmental disabilities who were continuously enrol...
Article
Full-text available
Objective: In self-direction, participants control individual budgets, allocating service dollars according to needs and preferences within program parameters to meet self-defined recovery goals. Mental health self-direction is associated with enhanced wellness and recovery outcomes at lower or similar cost than traditional service arrangements. T...
Article
Full-text available
Purpose: The aim of the study was to provide an overview of population science as applied to speech and language disorders, illustrate data sources, and advance a research agenda on the epidemiology of these conditions. Method: Computer-aided database searches were performed to identify key national surveys and other sources of data necessary to...
Article
Full-text available
Objectives To examine the association between intensity of home visits in early intervention (EI), perceived helpfulness of home visits in EI, and positive family relationships as predictors of maternal competence at age 3, as well as moderating effects of predictors, controlling for child characteristics, family demographics, and negative life eve...
Article
Full-text available
There is a dearth of existing research on the treatment of reproductive cancers among women with intellectual and developmental disabilities (IDD). This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared the prevalence of reproductive cancer treatment hospitalization discharges among women with...
Article
Children with special health-care needs (CSHCNs) face notable barriers to health-care access and to receiving quality and family-centered care, despite higher health-care utilization rates. Within the population of CSHCNs, there are significant inequities in health-care quality impacting immigrants who have migrated to the United States. However, l...
Article
Full-text available
The present study used propensity score analysis to compare the economic well-being of people with and without hearing impairment in the UK. Using nationally representative 2009/10 Life Opportunities Survey, our study found that economic well-being was significantly worse for people with hearing impairment than people without hearing impairment. He...
Article
Purpose: To provide estimates for the prevalence of parent-reported speech-language difficulties in U.S. children, and to describe the levels of health care access and material hardship in this population. Method: We tabulated descriptive and bivariate statistics using cross-sectional data from the 2007 and 2011/2012 iterations of the National S...
Article
Full-text available
Background: Women with intellectual and developmental disabilities (IDD) are bearing children at increasing rates. However, there is very little research about pregnancy experiences and birth outcomes among women with IDD. No studies to date have examined birth outcomes with a US population-based sample. Objective: The main objective was to esti...
Article
There is a dearth of information on the quality of health care for Asian American children and particularly Asian children with special health care needs (CSHCN). The goal of this article was to determine whether there were disparities in quality of health care for Asian CSHCN, whose experiences have not been studied. Data were derived from the 200...
Article
Full-text available
Although the United States has made great strides in ensuring near universal health care access for children, the health insurance coverage gap between children and their parents remains high. This study analyzed aggregated data from the 2006-2013 National Health Interview Survey to investigate the direct relationships between parental uninsurance...
Article
Full-text available
Objective This study compared health care utilization of children with special health care needs in 2005/06 and 2009/10. Methods Using data from the National Survey of Children with Special Health Care Needs, this study compared the health care utilization of children with special health care needs in 2005/06 (n = 40,723) and 2009/10 (n = 40,242)....
Article
Background: While the United States has seen increased attention by policymakers on the rights of parents with disabilities, there is limited understanding of the health and economic well-being of parents with intellectual impairments. This study compares the health and economic well-being of mothers with and without intellectual impairments. Met...
Technical Report
Full-text available
The Compendium of Health Data Sources for Parents with Disabilities in the United States, is a summary of selected national data sources that currently capture health information pertaining to parents with disabilities in the United States. Understanding and using these national data sources is critical for research and advocacy efforts in advancin...
Article
Full-text available
Self-direction involves managing a flexible budget, selecting and purchasing services and supports to meet individual needs and preferences. An emerging practice in the behavioral health field, self-direction is part of a systemic shift toward person-centered approaches to service provision. To understand the relationship between recovery and self-...
Article
In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little st...
Article
The authors examined food insecurity in households including children with disabilities, analyzing data from the 2004 and 2008 panels of the Survey of Income and Program Participation, which included 24,729 households with children, 3,948 of which had children with disabilities. Logistic regression models were used to estimate the likelihood of foo...
Article
Background Consumer direction is a service delivery model that shifts decision-making from agencies to the individuals they serve. Using government funding, consumers hire, supervise, and schedule their own staff and maintain control over the delivery of their services. Objective This study sought to understand the process of consumer direction as...
Article
Understanding the needs and experiences of parents with intellectual disability (ID) and their children is critical to ensuring that policies can effectively support these families. This research analyzed data from the Fragile Families and Child Wellbeing Study to examine the health outcomes of U.S. children whose mothers have (n = 263) and do not...
Article
Full-text available
Racial and ethnic health disparities are a pervasive public health problem. Emerging research finds similar health disparities among people with intellectual and developmental disabilities (IDD) compared to nondisabled adults. However, few studies have examined racial and ethnic health disparities among adults with IDD. Using national data, we exam...
Article
Background: Children with autism spectrum disorder (ASD) experience a range of severity levels characterised as levels of support they need for everyday functioning. By this definition, greater levels of severity should warrant greater use of services and supports among children with ASD. In previous studies, Latino children with ASD in the USA ha...
Article
Background Despite an increase in international studies examining the experiences of parents with intellectual impairments and their children, few have utilised population-based data. This study investigated the behavioural and cognitive outcomes of 3-year-old US children of mothers with intellectual impairments compared with children of mothers wi...