The Lurie Institute for Disability Policy

The Heller School for Social Policy and Management at Brandeis University

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Financial Well-Being of People with Disabilities

State Medicaid spending and financial burden of families raising children with autism

Susan L. Parish, Kathleen Thomas, Roderick A. Rose, Mona Kilany, and Paul Shattuck 
Journal on Intellectual and Developmental Disabilities December 2012; 50(6): 441-451


Financial well-being of single, working-age mothers of children with developmental disabilities

Susan L. Parish, Roderick A. Rose, Jamie G. Swaine, Sarah Dababnah, and Ellen Tracy Mayra
American Journal on Intellectual and Developmental Disabilities: September 2012;117(5):400-412


State insurance parity legislation for autism services and family financial burden

Susan L. Parish, Kathleen Thomas, Roderick Rose, Mona Kilany, and Robert McConville
Journal of Intellectual and Developmental Disabilities (2012); 50(3): 190-198


Financial well-being of U.S. parents caring for coresident children and adults with developmental disabilities: An age-cohort analysis

Susan L. Parish, Roderick A. Rose, and Jamie G. Swaine
Journal of Intellectual & Developmental Disability
. 2010;35(4):1-25

Abstract: Understanding how financial well-being changes through the life course of caregiving parents of children with developmental disabilities is critically important. More

Asset and income: evidence of disability-based disparities in the U.S.

Parish, S.L., Grinstein-Weiss, M., Yeo, Y., Rose, R.A., & Rimmerman, A.
Social Work Research. 2010;34(2):71-82

Abstract: Noting that although there is evidence about elevated income poverty rates among US adults with disabilities almost nothing is known about asset holding patterns among this population, this study aimed to explore whether the disability-based asset gap is comparable to the disability-based income gap for adults. The study analysed data from the 2001 Survey of Income and Program Participation, using data for 4,214 households in which at least one adult had disabilities and 12,365 households without an adult with disabilities. The results showed evidence of significant income disparities and similarly large gaps in the assets held by households with and without adults with disabilities, and that households with an adult with disabilities had substantially reduced net worth and income compared with households without adults with disabilities regardless of whether the family structure was married couple, single women or single men. The researchers discuss the implications, commenting that for adults with disabilities and their families, who face elevated costs of living as compared with non-disabled individuals, assets may be an even more valuable resource in case of emergency, and that in addition to bearing additional costs related to their impairments people with disabilities are even less likely than the nondisabled population to realise economic well-being.

TANF and the employment, marriage, and welfare use of low-income mothers raising children with disabilities

Susan L. Parish, Roderick A. Rose, Megan E. Andrews
Exceptional Children. 2010;76(2):234-253

Abstract: Using data from the National Survey of America's Families, this study assesses the success of Temporary Assistance for Needy Families (TANF) goals to increase employment, enhance family stability through marriage promotion, and reduce welfare reliance. In the period prior to TANF implementation, during implementation, and from 1 to 4 years after implementation, employment rates increased for some mother categories. Among categories of poor and near-poor mothers of children with disabilities, marriage rates did not change. Although TANF appears to have mixed results for these families, it is not leading to an overall reduction in welfare reliance among low-income women raising children with disabilities. The authors discuss recommendations and policy implications for the successful promotion of employment among mothers raising children with disabilities. More

Measuring material hardship among the U.S. population of women with disabilities using latent class analysis

Roderick A. Rose, Susan L. Parish, Joan P. Yoo
Social Indicators Research. 2009;94(3):391-415

Abstract: We use data from the 2002 wave of the National Survey of America's Families to develop and validate discrete measures of material hardship that can be used to examine the difficulties that vulnerable populations such as people with disabilities have in making ends meet. Using latent class analysis, we estimate two measurement models: multidimensional and omnibus. The multidimensional model provides separate estimates for food, medical, and housing and utilities hardship. The omnibus model is a single model of 11 hardship indicators. Results show three distinct classes of food hardship, three classes of medical hardship, and two classes of housing/utilities hardship. The omnibus model reveals eight classes. Both the multidimensional and omnibus models are largely invariant between women with disabilities and women without disabilities, indicating that valid comparisons can be made between these populations using these classes of hardship. These classes can be utilized in further research on the hardship of women with disabilities to inform the development of policies targeted to alleviate the specific forms of hardship experienced by disabled women. More

Income poverty and material hardship among U.S. women with disabilities

Susan L. Parish, Roderick A. Rose, Megan E. Andrews
Social Service Review. 2009;83(1):33-52

Abstract: This study analyzes the 2002 wave of the National Survey of America’s Families to describe income poverty and material hardship among women with and without disabilities in the United States. Results suggest that women with disabilities experience such hardships as food insecurity, housing instability, inadequate health care, and loss of phone service at rates that are higher than those among nondisabled women. Rates of hardship remain higher even after adjusting for a host of individual characteristics, including marital status, age, race, and education. Although hardship declines as incomes rise for all women, those with disabilities show worse outcomes at every income level and experience substantial levels of hardship well into the middle and upper income ranges. The federal poverty level does not accurately capture women’s experiences of material hardship, and these discrepancies are considerably worse among women with disabilities. More

The Healthy Families Act: vital support for families of people with developmental disabilities

Susanna Birdsong and Susan L. Parish
Intellectual and Developmental Disabilities
. 2008;46(4):319-321

Abstract: Currently in the United States, half of all workers and three fourths of low-income workers do not receive a single paid sick day (National Partnership for Women and Families, 2007). What does this mean for U.S. families? It means that parents often must choose between caring for a sick child and paying their bills. Families of children with developmental disabilities are more likely to live in poverty (Fujiura & Yamaki, 2000), and their children are significantly more likely to miss school days than typically developing children (Boyle, Decoufle, & Yeargin-Allsopp, 1994). These factors regularly force parents to choose between income and family. Improving labor force protections that support working families is imperative. More

Material hardship among U.S. families raising children with disabilities

Parish, Susan L.; Rose, Roderick A.; Grinstein-Weiss, Michal; Richman, Erica L.; Andrews, Megan E.
Exceptional Children. 2008;75(1):71-92

Abstract: Researchers analyzed the 2002 wave of the National Survey of America's Families, conducted by the Urban Institute and Child Trends, and examined material hardship in families raising children with disabilities. Measures of hardship included food insecurity, housing instability, health care access, and telephone disconnection. The research indicated that families of children with disabilities experienced significantly greater hardship than did other families. As family income rose above the federal poverty level, hardship declined sharply for families of children without disabilities but not for families raising children with disabilities. Thus, the U.S. federal poverty level was found to be a particularly poor predictor of hardship for families raising children with disabilities. Finally, among families of children with disabilities, single-mother and cohabiting-partner families particularly were at risk for experiencing severe hardship. This article also discusses policy and advocacy implications. More

Policy lessons from low-income mothers with disabilities: A primer on inadequate incomes, work disincentives, and bureaucratic insensitivity

Magaña, S., Parish, S.L., Cassiman, S.A.
Journal of Women, Politics & Policy. 2008;29():181-206

Abstract: This study evaluated the implementation of a disability-related welfare program from recipients' perspectives – mothers with disabilities. Two research questions were addressed: (1) how well do income transfer programs support low-income mothers with disabilities who manage to care for their children? and 2) what policy changes would enhance these mothers' caregiving capacities? Six focus groups were held with 35 mothers with disabilities in three regions of Wisconsin. The study sample was recruited using state administrative files on an income transfer program specifically for parents with disabilities raising minor children. Four focus groups were conducted in English and two were in Spanish by bicultural and bilingual focus group leaders. The sample was racially and ethnically diverse. Participants had a range of physical and mental impairments. A professional translator with expertise in using language that is generic to different Spanish-speaking regions translated all study materials. Accuracy of English and Spanish audiotapes was verified. Data were coded and themes were identified. Three major themes were identified from the data related to (1) material hardship, (2) work disincentives, (3) program implementation. Despite receiving more generous cash assistance than what is provided by any other state (two disability-related income transfers, SSI and a Wisconsin Caretaker Supplement program), all of the women and their families experienced chronic material deprivation; all mothers concurred that benefits were inadequate. The greatest financial challenges were housing costs, utility costs, and the costs of raising children. More

It's just that much harder: multilayered hardship experiences of low-income mothers with disabilities raising their children

Parish, S.L., Magaña, S., Cassiman, S.A.
The Journal of Women and Social Work. 2008;23(1):51-65

Abstract: This article reports on a focus-group study that examined the experiences and perspectives of low-income mothers with disabilities who were receiving disability income transfers. The women faced severe deprivation and multilayered hardships. Their impairments were not their central problem, but they intersected with the challenges associated with the women’s poverty and single-parent status. The women coped with or resisted their hardships by serving as advocates for their and their children’s needs, accessing resources from safety-net services and their families, and relying on their religious beliefs. The women’s aspirations included setting a moral example for their children, securing a better life for their children, and wanting to work. Implications for policy and practice are discussed.

Juggling and struggling: A preliminary work-life study of mothers with adolescents with developmental disabilities

Susan L. Parish
Mental Retardation
44.6 (2006): 393-404

Abstract: A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child reached adolescence. Service cuts were related to the fact that adolescents are expected to be able to care for themselves, despite the fact that for many adolescents with disabilities, this is not possible. The mothers also reported that the preponderance of the responsibility for arranging care for their children was theirs and was not shouldered by their partners. Policy implications are discussed. More

Child care for low-income school-age children: disability and family structure effects in a national sample

Parish, S.L., Cloud, J.M.
Children & Youth Services Review. 2006;28(8):927-940

Abstract: A secondary analysis of data from the National Survey of America's Families was conducted to explore the use and quality of child care of a nationally representative sample of low-income school-aged children, stratified by disability status and family structure. Measures of care included hours spent in care, hours of self-care, number of care arrangements used per week, costs of care, type of primary care arrangement, and whether parents arranged their work around care. Both family structure and children's disability status influenced the use and quality of care, with children of single parents, and particularly disabled children, seemingly at greatest risk for adverse developmental outcomes related to the care they received.

Financial well-being of young children with disabilities

Parish, S.L., Cloud, J.M.
Social Work. 2006;51(3):223-232

Abstract: Young children with disabilities are significantly more likely to live in poverty than their peers without disabilities. Exposure to poverty creates additional risk of adverse outcomes for these vulnerable children. In this article, the following key circumstances contributing to this increased risk of impoverishment are analyzed: elevated costs of raising children with disabilities, low levels of public income transfer benefits, difficulty balancing parental employment and caregiving responsibilities, unavailable or high-cost child care, and inadequate leave time to permit parents to meet their children's episodic care needs. The implications of these issues for social work practice and advocacy needs are discussed. More

Child care, disability and family structure: use and quality in a population-based sample of low-income preschool children

Parish, S.L., Cloud, J.M., Huh, J., Henning, A.N.
Children & Youth Services Review. 2005;27(8):905-919

Abstract: The National Survey of America's Families (NSAF) was analyzed to examine the use and quality of child care of low-income preschool children with disabilities as contrasted to low-income nondisabled children. Family structure is a stronger predictor of child care use than disability status. Disabled and nondisabled children living with single parents show similarly elevated rates of participation in child care. Important differences were found in the use and quality of child care. Our findings related to the extremely low cost of care for disabled children living with single parents may suggest particularly deleterious developmental outcomes for these children. These findings suggest the need for child care subsidies directed at low-income disabled children and their families. Further, the protective enforcement of minimum standards of care may require further analysis.

Economic implications of caregiving at midlife: comparing parents of children with developmental disabilities to other parents

Parish S.L., Seltzer M.M., Greenberg J.S., Floyd F.
Mental Retardation. 2004;42(6):413-426

Abstract: We compared the economic well-being and maternal employment of parents whose children did or did not have developmental disabilities. This prospective study is a secondary analysis of data from the Wisconsin Longitudinal Study, collected when respondents were aged 18, 36, and 53, on average. Although the two groups were similar at age 18, income and savings differed markedly by age 53, but statistically significant differences were not found on other measures. Mothers of children with disabilities were less likely to have job spells lasting more than 5 years and had lower earnings when they were 36 years old. Further, there was a trend for them to be less likely to have full-time jobs as their children grew older. More

Mental retardation and federal income transfers: the political and economic context

Susan L. Parish
Mental Retardation. 2003;41(6):446-459

Abstract: Federal income maintenance programs for people with mental retardation in the United States were described. Combined SSI and DI spending in fiscal year 2000 totaled an estimated $20.6 billion for people with mental retardation. This population is particularly vulnerable to the vagaries of changing public policy and are particularly reliant upon public support. The relative importance of income programs in the lives of people with mental retardation is discussed and the changing role of federal social welfare policy with regard to these programs analyzed. More

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