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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 framework that incorporates empirical findings from existing literature while integrating and expanding extant frameworks and models. The conceptual framework, which is aimed at being a starting point from which to investigate child welfare system inequities experienced by disabled parents, includes interrelated factors measured at the contextual, institutional, and individual levels. The paper discusses areas for further research, challenges for researchers, and implications for reducing child welfare system inequities. Parents with disabilities are more likely to be involved with the child welfare system, have their parental rights terminated, and receive inadequate services and supports from the child welfare system, compared to other parents. This paper offers a conceptual framework that identifies factors that impact the inequities experienced by disabled parents who are involved with the child welfare system. Researchers can use the conceptual framework to study the reasons that parents with disabilities have worse child welfare system outcomes than other parents. Policymakers and child welfare professionals can use the conceptual framework to identify ways to prevent parents with disabilities from being unnecessarily involved with the child welfare system and ensure that parents with disabilities who are involved with the child welfare system are treated fairly. [ABSTRACT FROM AUTHOR]

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-provided occupational benefits have been implemented and expanded. The present study examined the effects of family-supportive workplace policies and benefits on boosting working women's fertility intentions in Korea by the current number of children (i.e. parity). Using the 2007–2012 Korean Longitudinal Survey of Women and Families (N = 3,405 working women), the study examined seven family policies and benefits. Results revealed that childcare leave was significantly associated with increasing working women's first birth intentions. Also, women's second birth intentions increased significantly when they had more family-supportive provisions at their workplaces. Despite these results, a majority of women perceived the family provisions to be unavailable at their workplaces. The present study underscores that women's fertility decisions differ significantly by parity and informs policymakers in their efforts to develop family provisions that address these differences and make family provisions more readily available. [ABSTRACT FROM AUTHOR]

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, advocacy, and providing emotional support throughout pregnancy. Informal supports helped with errands, comfort, and emotional encouragement. The community surrounding these women facilitated communication with providers, self-empowerment regarding health choices, and increased preparedness for parenthood. Findings indicate the importance of encouraging and sustaining both formal and informal supports during pregnancy, childbirth, and postpartum to improve pregnancy and parenting experiences for women with IDD. [ABSTRACT FROM AUTHOR]

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 using the 2002-2011 Medical Expenditure Panel Survey dataset, and compared perceived barriers of community-living U.S. adults with IDD in three racial and ethnic groups (White, Black, and Latinx). Specifically, we examined the top reasons for not having usual source of care, delaying or foregoing medical care. For Black and Latinx adults with IDD, the most-mentioned reasons for not having usual source of care, delaying or foregoing medical care were "don't like/don't trust doctors," "don't use doctors," and "don't know where to get care." In comparison, the White adults with IDD group's biggest perceived barriers were location and insurance related. All groups cited that being unable to afford care was a top reason for delaying or foregoing care. Policies/interventions to improve health care access in racial/ethnic minorities with IDD must first address the topic of developing trust between patients and the health professions. Insurance and the rising costs of care are also key areas that need attention. [ABSTRACT FROM AUTHOR]

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 nondisabled parents, parents with disabilities are overrepresented in the child welfare system, receive inadequate family preservation and reunification services, and have disproportionate rates of termination of parental rights. Despite extensive legal and social science scholarship, however, there are no empirical analyses of judicial opinions to identify factors that predict termination of parental rights in cases involving parents with disabilities. This is the first empirical legal study to analyze appellate decisions to determine predictors of termination of parental rights in appeals cases that included mothers with disabilities. In particular, we sought to understand whether a mother's disability type was associated with the termination of parental rights. To that end, this study analyzed 2,064 appellate opinions decided between 2006 and 2016. We found that ninety-three percent of the cases resulted in the termination of parental rights. After controlling for a variety of parent, family, court, case, and policy characteristics, however, maternal disability type did not predict termination of parental rights. Nevertheless, the odds of termination of parental rights were higher for cases in which parents had substance use histories, household incomes below 200% of the federal poverty level, prior child welfare system involvement, negative expert testimony, or received family preservation and reunification services tailored to parents with disabilities. Conversely, the likelihood of termination of parental rights was decreased in cases that included positive expert testimony or were decided in the Southeast or West. The Article concludes by discussing the policy and practice implications of the study's findings and identifying critical areas for further research. [ABSTRACT FROM AUTHOR]

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 the ADA has not adequately protected the rights of parents with disabilities involved with the child welfare system, particularly at the termination of parental rights phase. This Article develops this critique as applied to an original empirical study of 2,064 appellate termination of parental rights decisions adiudicated between 2006 and 2016 that involved mothers with disabilities. This is the first study to conduct quantitative analyses to identi# factors that predict whether the ADA is raised or applied in these cases. In particular, we aimed to understand if a mother's disability type predicts whether courts raise or apply the ADA. This study found that the ADA was only raised in six percent of the decisions and only applied in two percent of the opinions. After controlling for parent, family, court, case, and policy characteristics, courts had a decreased likelihood of raising the ADA in cases involving mothers with psychiatric disabilities. Likewise, after controlling for parent, family, court, case, and policy characteristics, courts had lower odds of applying the ADA in cases involving mothers with multiple disabilities. Other factors were also associated with courts raising or applying the ADA, including criminal history, substance use history, prior child welfare system involvement, the presence of a disabled child, when the case was decided, geographical location, negative expert testimony, provision of family preservation or reunification services, and state dependency statutes that included parental disability as grounds for termination of parental rights. The Article concludes by discussing the policy and practice implications of the study's findings and identifying directions for future research. [ABSTRACT FROM AUTHOR]

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-oriented ethics, some employees may be unable to use family polices even if they are available at work. Using the 2007–2012 Korean Longitudinal Survey of Women and Families (N = 941 employed mothers), the study examined six policies. Random effects modelling was used. Results revealed that availability of family polices was insignificant in reducing mothers' work-family conflict in Korea, and mothers' work-family conflict decreased significantly only when they were actually accessible. Mothers' work-family conflict decreased significantly as they had access to more family policies. The present study underscores in order for family policies to have a real impact, family policies should be made more readily accessible. [ABSTRACT FROM AUTHOR]

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. Hierarchical linear modelling and hierarchical linear logistic modelling were used to estimate the longitudinal changes. Findings indicate that, overall, disabled women's economic well‐being improved significantly between 2009 and 2014 even after controlling for other demographic characteristics. However, the improvements were not substantial enough to significantly narrow the economic disparities between disabled women and disabled men and nondisabled men and women. Disabled women remained worse off than disabled men and nondisabled men and women in 2014 as they did in 2009. The findings indicate that intersectional discrimination against disabled women exist in the United Kingdom. Findings from this study provide empirical evidence to support policies that enhance the economic security of disabled women. [ABSTRACT FROM AUTHOR]

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 of sexual violence from adult research participants with ID. We completed a literature review clarifying best practices for responding to disclosures of abuse by adults with ID. The literature focused on various professionals but we were unable to find evidence clarifying researchers' roles in responding to sexual violence. Working with our state protective services agency, we adapted these practices to develop protocols and an algorithm for responding to disclosure, as well as materials for participants. Our protocol for abuse reporting considers all members of the research team to be mandated reporters, emphasizes informed consent, and details specific steps for responding to disclosures of abuse in the context of research. It represents a collaboration between academic researchers and community partners. Research participation by people with ID may represent an opportunity for disclosure of past or current abuse, and therefore, it is imperative that researchers are equipped to respond effectively. Policy‐level responses to prevent abuse and enable justice are also needed; however, ensuring that researchers respond systematically and effectively to disclosures is crucial to the ethical conduct of research with a vulnerable population. We anticipate that the frequency with which researchers will need to use this protocol will depend on the nature of their research. In practice, we recommend including this protocol as part of the overall study protocol and submitting it for Institutional Review Board (IRB) approval. Future research to test our protocol in the field is recommended. [ABSTRACT FROM AUTHOR]

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-recipients during two time frames. The first model assessed changes in food insecurity immediately before SSI benefits were first received and the second model assessed changes in food insecurity after programme entry.Setting: 2008 panel of the Survey of Income and Program Participation.ParticipantsNon-institutionalized population of the USA.Results: The percentage of eventual SSI recipients experiencing food insecurity rose from 18 to 30 % in the year before programme entry, compared with a change from 17 to 18 % for eligible non-recipients. Adjusting for sociodemographic covariates, the difference-in-difference estimator for this comparison was statistically significant (P=0·01). Additionally, the percentage of recipients experiencing food insecurity fell from 28 % in the year before programme entry to 16 % in the year after entry, compared with a change from 16 to 17 % for eligible non-recipients. Adjusting for sociodemographic covariates, the difference-in-difference estimator for this comparison was marginally significant (P=0·07).Conclusions: Food insecurity rises prior to SSI entry but may be alleviated by programme benefits. Greater nutritional supports for SSI applicants awaiting decisions may reduce the burden of food insecurity in this population and improve health outcomes. [ABSTRACT FROM AUTHOR]

Background: Scant research disentangles the relationship between parenting competence, early intervention (EI) services, the family environment and informal support among fathers of children with developmental disabilities.Aims: (1) To determine the trajectory of parental competence for fathers of children with DD from age 3 to age 15. (2) Controlling for child and family characteristics, determine the main effects of the family environment, informal support, and EI services on paternal competence when their child with a developmental disability was age 3. (3) To determine whether there were lasting effects of the family environment, informal support, and the EI service system on differences in paternal competence over time.Methods: This study used multilevel modeling to analyze longitudinal data from 93 American fathers from the Early Intervention Collaborative Study.Results: There was no significant change over time in paternal competence after controlling for various covariates. Fathers who initially reported low levels of competence when their child was three reported continuously lower competence over time. Family relationships, positive supports, and perceived helpfulness of home visits were significant predictors of paternal competence at age three.Conclusion: Implications for programs and policy include developing and adopting rigorous ways to measure and carefully monitor service provision, including assessments of paternal competence, family relationships and informal supports at the start of early intervention, and fostering continuous collaborations between providers, researchers and clinicians to address challenges in data collection. [ABSTRACT FROM AUTHOR]

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 case subjects were identified from the International Classification of Diseases and Related Health Problems 9th Revision (ICD-9 CM) codes. The study primary outcome measures were any postpartum hospital admission and any ED visit during three critical postpartum periods (1-42, 43-90, and 1-365 days). We conducted unadjusted and adjusted survival analysis using Cox proportional hazard models to compare the occurrence of first hospital admission or ED visits between women with and without IDD. Results We found that women with IDD had markedly higher rates of postpartum hospital admissions and ED visits during the critical postpartum periods (within 1-42, 43-90, and 91-365 days) after a childbirth. Conclusion for Practice Given the heightened risk of pregnancy complications and adverse birth outcomes and the findings of this study, there is an urgent need for clinical guidelines related to the frequency and timing of postpartum care among new mothers with IDD. Further, this study provides evidence of the need for evidence-based interventions for new mothers with IDD to provide preventive care and routine assessments that would identify and manage complications for both the mother and the infant outside of the traditional postpartum health care framework. [ABSTRACT FROM AUTHOR]

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 and without IDD. Discharges linked to women with IDD had higher incidences of cancer of the uterus and lower prevalence of cancer of the cervix. Moreover, discharges linked to women with IDD indicated these women were younger, had longer hospital stays, and were more likely to have public insurance coverage. Therefore, further research and targeted interventions to increase cancer prevention and screening are urgently needed. [ABSTRACT FROM AUTHOR]

Purpose: To provide estimates for the prevalence of parentreported 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 Survey of Children's Health, the 2005/2006 and 2009/2010 iterations of the National Survey of Children with Special Health Care Needs, and the 2004 and 2008 panels of the Survey of Income and Program Participation. Results: Prevalence estimates ranged from 1.8% to 5.0%, with data from two of the three surveys preliminarily indicating increased prevalence in recent years. The largest health care challenge was in accessing care coordination, with 49%-56% of children with parent-reported speech-language difficulties lacking full access. Children with parent-reported speech-language difficulties were more likely than peers without any indications of speech-language difficulties to live in households experiencing each measured material hardship and participating in each measured public benefit program (e.g., 20%-22% experiencing food insecurity, compared to 11%-14% of their peers without any indications of speechlanguage difficulties). Conclusions: We found mixed preliminary evidence to suggest that the prevalence of parent-reported speechlanguage difficulties among children may be rising. These children face heightened levels of material hardship and barriers in accessing health care. [ABSTRACT FROM AUTHOR]

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 2009-2010 National Survey of Children with Special Health Care Needs (ns = 355 non- Hispanic Asian children and 4,343 non-Hispanic white CSHCN). Bivariate and multivariate logistic regression analyses were conducted to examine the relationship between racial identity (that is, non-Hispanic white and non-Hispanic Asian) and quality of health care. Racial disparities in quality of health care were substantial between Asian and white CSHCN in 2009-2010. Asian parents were significantly less likely than white parents to report that their health care provider provided the specific information they needed, helped them feel like a partner in their child's care, and was sensitive to the family's values and customs. The development and testing of specific, targeted policy and practice interventions to reduce disparities in health care quality for these children are urgently needed. [ABSTRACT FROM AUTHOR]

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. Methods This descriptive, exploratory study is a secondary analysis of the Fragile Families and Child Wellbeing Study. This study includes a subsample of mothers of three-year-old children ( n = 1561), including mothers with intellectual impairments ( n = 263) and without intellectual impairments ( n = 1298). Results US Mothers with intellectual impairments are more likely to report serious health conditions, have less instrumental support, live in poverty, receive public benefits and experience certain material hardships. Conclusion Findings from this study indicate the need for policies and programmes to support parents with intellectual impairments by addressing their health and economic needs. [ABSTRACT FROM AUTHOR]

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 food insecurity after adjusting for adult disability status, income, and other sociodemographic factors. Compared to other households with children, those including children with disabilities were more likely to report household food insecurity of any kind, very low household food security, and child food insecurity. Families raising children with disabilities were also more likely to receive Supplemental Nutrition Assistance Program benefits. These results suggest that children with disabilities face an increased risk of experiencing food insecurity and that there is a pressing need to improve the safety net system for these children. [ABSTRACT FROM AUTHOR]

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 study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed. [ABSTRACT FROM AUTHOR]

Objective: This article reports on the acceptability and results from an evaluation of an empirically supported practice, The Incredible Years, tailored to parents of children with autism spectrum disorder (ASD). Methods: Two groups of parents (N = 17) participated in a mixed methods test with no comparison group of the 15-week intervention. Data were collected at baseline, posttest, and on a weekly basis. Results: Acceptability and attendance were high, attrition was modest, and parent stress decreased significantly after program completion. Parents highlighted several barriers to their success in the program, including difficulty applying some program content (e.g., time-out for noncompliance) to children with sensory or self-regulation challenges. However, participants reportedly enjoyed the play-based approach of the program, as well as opportunities for social support and peer learning. Conclusion: The Incredible Years is a promising intervention for parents raising preschoolers with ASD. A randomized controlled trial is needed to rigorously test the intervention. [ABSTRACT FROM AUTHOR]

Parents raising young children with autism spectrum disorder are particularly vulnerable to stress and poor coping mechanisms. The current article describes a comprehensive review of randomized controlled trials which included parents of preschool-age children with autism spectrum disorder. Seven interventions met the review criteria. The studies were strengthened by the use of fidelity measures and developmentally appropriate interventions. However, while all of the studies collected parent measures, none reported significant post-test improvements in parent mental health or other outcomes. Furthermore, numerous issues, such as unclear randomization strategies, small sample sizes, and poor external validity, further limited the ability to draw significant conclusions regarding the promise of the interventions. More research is needed to develop and rigorously test family-centered interventions aimed at improving both child and parent outcomes. [ABSTRACT FROM PUBLISHER]

This article reports on the feasibility of implementing an existing empirically based program, The Incredible Years, tailored to parents of young children with autism spectrum disorder. Parents raising preschool-aged children (aged 3–6 years) with autism spectrum disorder (N = 17) participated in a 15-week pilot trial of the intervention. Quantitative assessments of the program revealed fidelity was generally maintained, with the exception of program-specific videos. Qualitative data from individual post-intervention interviews reported parents benefited most from child emotion regulation strategies, play-based child behavior skills, parent stress management, social support, and visual resources. More work is needed to further refine the program to address parent self-care, partner relationships, and the diverse behavioral and communication challenges of children across the autism spectrum. Furthermore, parent access and retention could potentially be increased by providing in-home childcare vouchers and a range of times and locations in which to offer the program. The findings suggest The Incredible Years is a feasible intervention for parents seeking additional support for child- and family-related challenges and offers guidance to those communities currently using The Incredible Years or other related parenting programs with families of children with autism spectrum disorder. [ABSTRACT FROM AUTHOR]

Background There is currently no population-based research on the maternal characteristics or birth outcomes of U.S. women with intellectual and developmental disabilities (IDDs). Findings from small-sample studies among non-U.S. women indicate that women with IDDs and their infants are at higher risk of adverse health outcomes. Purpose To describe the maternal characteristics and outcomes among deliveries to women with IDDs and compare them to women with diabetes and the general obstetric population. Methods Data from the 1998–2010 Massachusetts Pregnancy to Early Life Longitudinal database were analyzed between November 2013 and May 2014 to identify in-state deliveries to Massachusetts women with IDDs. Results Of the 916,032 deliveries in Massachusetts between 1998 and 2009, 703 (<0.1%) were to women with IDDs. Deliveries to women with IDDs were to those who were younger, less educated, more likely to be black and Hispanic, and less likely to be married. They were less likely to identify the father on the infant’s birth certificate, more likely to smoke during pregnancy, and less likely to receive prenatal care during the first trimester compared to deliveries to women in the control groups ( p <0.01). Deliveries to women with IDDs were associated with an increased risk of adverse outcomes, including preterm delivery, very low and low birth weight babies, and low Apgar scores. Conclusions Women with IDDs are at a heightened risk for adverse pregnancy outcomes. These findings highlight the need for a systematic investigation of the pregnancy-related risks, complications, costs, and outcomes of women with IDDs. [ABSTRACT FROM AUTHOR]

Among countries with comparable levels of income, India has one of the more progressive disability policy frameworks. However, people with disabilities in India are still subject to multiple disadvantages. This paper focuses on state-level variations in outcomes for people with disabilities to provide an explanation for the contrast between the liberal laws on paper and the challenges faced by people with disabilities in practice. Using average monthly per-capita expenditure as an indicator of economic well-being, instrumental-variable Wald estimator results indicate that households with members with disabilities have expenditures that are 14% lower compared with households with able members. This effect is most pronounced among families with male adults and children with disabilities, and in states that are relatively poor, relatively more urban, those that experience extremes in annual rainfall and temperature, and those that have low to medium levels of inequality. [ABSTRACT FROM AUTHOR]

The author discusses the importance of Supplemental Security Income (SSI) in the nation's family support infrastructure where it offers monthly income to help low-income parents afford high costs of raising children with disabilities. He cites media attacks on SSI and recent attempts to reduce the federal budget by cutting SSI. He points out that balancing the federal budget at the expense of low-income parents struggling to raise their children with disabilities makes no financial sense.

Objective. We examined receipt of cervical cancer screening and determinants of screening for women with intellectual disabilities in one Southeastern state. Methods. Using medical records data from 2006 through 2010 for community-dwelling women with intellectual disabilities who were 18--65 years of age (n=163), we employed descriptive and bivariate statistics and a multivariate regression model to examine receipt of cervical cancer screening and the determinants of cervical cancer screening across women's sociodemographic and health-care provider characteristics. Results. Of women 18--65 years of age with intellectual disabilities, 55% received a Papanicolaou (Pap) test during 2008--2010, markedly below the Healthy People 2020 targets or rates of Pap test receipt of women without intellectual disabilities. Women with intellectual disabilities who lived in residential facilities, those who lived in rural communities, and those who had an obstetrician/gynecologist had higher rates of receipt of care than other women with intellectual disabilities. Conclusions. Assertive measures are required to improve the receipt of cervical cancer screening among women with intellectual disabilities. Such measures could include education of women with intellectual disabilities, as well as their paid and family caregivers, and incentives for health-care providers who achieve screening targets. [ABSTRACT FROM AUTHOR]

Objective. We examined receipt of cervical cancer screening and determinants of screening for women with intellectual disabilities in one Southeastern state. Methods. Using medical records data from 2006 through 2010 for community-dwelling women with intellectual disabilities who were 18--65 years of age (n=163), we employed descriptive and bivariate statistics and a multivariate regression model to examine receipt of cervical cancer screening and the determinants of cervical cancer screening across women's sociodemographic and health-care provider characteristics. Results. Of women 18--65 years of age with intellectual disabilities, 55% received a Papanicolaou (Pap) test during 2008--2010, markedly below the Healthy People 2020 targets or rates of Pap test receipt of women without intellectual disabilities. Women with intellectual disabilities who lived in residential facilities, those who lived in rural communities, and those who had an obstetrician/gynecologist had higher rates of receipt of care than other women with intellectual disabilities. Conclusions. Assertive measures are required to improve the receipt of cervical cancer screening among women with intellectual disabilities. Such measures could include education of women with intellectual disabilities, as well as their paid and family caregivers, and incentives for health-care providers who achieve screening targets. [ABSTRACT FROM AUTHOR]

Abstract: The current qualitative study examined knowledge, attitudes, burdens and coping strategies related to caring for a child with an autism spectrum disorder (ASD) in the West Bank. Based on a sample of 24 Palestinian parents, the study found that parents struggled with financial stressors, child behavioral and medical challenges, and depression. Few parents were aware of ASDs prior to their children's diagnoses. Furthermore, discrimination and stigma from extended family members and the larger community intensified parents' feelings of shame and experiences of social isolation. While some parents coped by withdrawing from the community or denying the diagnosis, others aimed to increase social interactions and access information. Religious coping was found to be partly adaptive for some of the participants. The study underscored the vital need to increase community awareness of ASDs and increase social support for parents in the West Bank. [Copyright &y& Elsevier]

The article discusses the importance of breast and cervical cancer screening for women with intellectual disabilities. The Papanicolaou (Pap) test and the mammogram are identified as the most common types of preventive screenings for women. Some of the challenges faced by women with intellectual disabilities related to health screenings are stated, including the lack of knowledge of needed screenings. Social workers are advised to work closely with these women and their families and caregivers.

There is a critical need for objective data about receipt of preventive healthcare screenings that are not subject to self-response bias. However, no available evidence indicates which methods are effective for obtaining retrospective medical record data for women with intellectual disabilities ( ID) receiving care in the community. This article describes a procedure for obtaining retrospective medical record data for 199 women with ID who took part in a community-based, multisite, randomized controlled trial of a health education intervention. Data were analyzed to determine rates of correct physician identification and physician response rates during the 2006-2009 study periods. To assess accuracy in identifying physicians and response rates over time, Mc Nemar's test of paired proportions for dependent samples was used. Physician identification varied over time with correct identification being highest in more recent years. The majority of practices responded to our requests for medical record data; however, response rates and item completion rates were highest for the most recent data, with rates declining significantly for data from earlier years. Obtaining retrospective medical record data from community-based medical practices is possible, but difficult. Therefore, researchers should budget resources to accommodate a lengthy process with extensive follow-up. Researchers interested in older medical data face additional challenges in obtaining complete records. [ABSTRACT FROM AUTHOR]

We examined the association between state Medicaid spending for children with disabilities and the financial burden reported by families of children with autism. Child and family data were from the 2005-2006 National Survey of Children with Special Health Care Needs (n = 2,011 insured children with autism). State characteristics were from public sources. The 4 outcomes included any out-of- pocket health care expenditures during the past year, expenditure amount, expenditures as a proportion of family income, and whether additional income was needed to care for a child, We modeled the association between state per capita Medicaid spending for children with disabilities and families' financial burden, controlling for child, family, and state characteristics. Overall, 78% of families raising children with autism had health care expenditures for their child for the prior 12 months; 42% reported expenditures over $500, with 34% spending over 3% of their income. Families living in states with higher per capita Medicaid spending for children with disabilities were significantly less likely to report financial burden. There is a robust relationship between state Medicaid spending for children with disabilities and the financial burdens incurred by families raising children with autism. [ABSTRACT FROM AUTHOR]

Peer victimization is a serious social problem that can negatively affect children''s psychosocial development and school adjustment, and may have lasting effects for victims. The rates of peer victimization among preschool children with disabilities, however, are unknown. This paper examines the prevalence and nature of peer victimization among children with disabilities in school settings using data from the Pre-Elementary Education Longitudinal Study (N =1270). One-quarter to one-third of preschool children with disabilities experienced some form of peer victimization in school. Peer victimization increased over the 2003–2006 period (21% in Year 1, 25% in Year 2, 30% in Year 3), and there were also substantial rates of co-occurring types of victimization among children with disabilities. These results suggest the urgent need to provide bullying prevention strategies for children with disabilities—strategies which have been previously neglected in the context of school-based bullying prevention and intervention programs. [Copyright &y& Elsevier]

We examined racial and ethnic disparities in quality of care for children with autism and other developmental disabilities and whether disparities varied for children with autism compared to children with other developmental disabilities. Analyzing data from the National Survey of Children with Special Health Care Needs (N = 4,414), we compared Black and Latino children to White children. We found racial and ethnic disparities on 5 of 6 quality outcomes. The interaction between race and disability status indicated that disparities in quality indicators were exacerbated among families of children with autism. These analyses suggest that children with autism, particularly those who are Latino and Black, face greater challenges in receiving high-quality health care. [ABSTRACT FROM AUTHOR]

Women with developmental disabilities are significantly less likely than women without disabilities to receive cervical and breast cancer screening according to clinical guidelines. The reasons for this gap are not understood. The present study examined the extent of women's knowledge about cervical and breast cancer screening, with the intention of informing the development and testing of interventions to increase cervical and breast cancer screening rates for these women. In a sample of 202 community-dwelling women with developmental disabilities, most women had little knowledge of cervical and breast cancer screening. Women who were living at home with family caregivers had the most limited understanding of cervical and breast cancer screening. Policy and practice implications are discussed. [ABSTRACT FROM AUTHOR]

Abstract: Growing evidence supports the hypothesis that income inequality within a nation influences health outcomes net of the effect of any given household’s absolute income. We tested the hypothesis that state-level income inequality in the United States is associated with increased family burden for care and health-related expenditures for low-income families of children with special health care needs. We analyzed the 2005–06 wave of the National Survey of Children with Special Health Care Needs, a probability sample of approximately 750 children with special health care needs in each state and the District of Columbia in the US Our measure of state-level income inequality was the Gini coefficient. Dependent measures of family caregiving burden included whether the parent received help arranging or coordinating the child’s care and whether the parent stopped working due to the child’s health. Dependent measures of family financial burden included absolute burden (spending in past 12 months for child’s health care needs) and relative burden (spending as a proportion of total family income). After controlling for a host of child, family, and state factors, including family income and measures of the severity of a child’s impairments, state-level income inequality has a significant and independent association with family burden related to the health care of their children with special health care needs. Families of children with special health care needs living in states with greater levels of income inequality report higher rates of absolute and relative financial burden. [Copyright &y& Elsevier]

Background: Women with developmental disabilities are much less likely than nondisabled women to receive cervical and breast cancer screening according to clinical guidelines. One barrier to receipt of screenings is a lack of knowledge about preventive screenings. Method: To address this barrier, we used a randomized control trial (n = 175 women) to test Women Be Healthy, an intervention designed to promote cervical and breast cancer screening for women with developmental disabilities. Women assigned to the experimental group participated in weekly health education program for 8 weeks. Women assigned to the control group participated in their regular vocational training or educational activities. Results: Unadjusted findings indicated modest gains for both groups in knowledge related to cervical and breast cancer screening. Regression results indicated statistically significant but modest knowledge gains for the experimental group related to breast cancer screening. Implications: These findings indicate that the Women Be Healthy curriculum is promising but needs to better address cervical cancer. [ABSTRACT FROM AUTHOR]

The objective of this study is to determine whether achievement of the Maternal and Child Health Bureau core outcome ease of use of health services differs between children with developmental disabilities, mental health conditions and physical disorders. We analyzed data from the 2005 National Survey of Children with Special Health Care Needs. Children with special health care needs were classified into 4 health condition groups: developmental disabilities (DD), mental health conditions (MH), physical disorders (PD) and multiple conditions. The outcome measure was 'difficulty using services'. We conducted bivariate and multivariate analyses to determine the associations between the health condition groups and the outcome. Of the CSHCN included in the study, 2.6% had DD, 12.9% had MH, 49.9% had PD and 34.6% belonged to multiple conditions group. Four percent of CSHCN with PD, 17% of those with DD, 13% of those with MH and 20% of those in the multiple conditions group had difficulty using services. In multivariate analyses, CSHCN with DD had 2.3 times and MH conditions had 2.6 times the odds of having difficulty using services compared to those with PD. Existing programs for CSHCN should be evaluated for the adequacy of services provided to children with DD and MH. Future studies should evaluate how developmental disabilities and mental health policies affect navigating the health care system for this population. [ABSTRACT FROM AUTHOR]

Abstract: Early identification of autism spectrum disorders has been demonstrated to result in material benefits to children, their families, and society by reducing problem behaviors, improving academic achievement and school outcomes, and increasing social participation. Early intervention also reduces the costs and associated morbidity of autism spectrum disorders across the life span. Despite significant advances in the ability of screening tools to detect autism spectrum disorders in young children, previous research has found that most children are not identified until they are in school, and past the age at which early intervention services are most beneficial. Social workers, given their presence across a wide range of service settings, are uniquely positioned to identify preschool children with autism spectrum disorders and refer them for additional diagnostic services and evidence-based interventions. In this paper, a basic primer on autism spectrum disorders is provided, along with descriptions of the various screening tools appropriate for children ages 3 and younger that social workers can implement in their own practice settings. Policy and practice implications are discussed. [ABSTRACT FROM AUTHOR]

Background Understanding how financial well-being changes through the life course of caregiving parents of children with developmental disabilities is critically important. Methods We analyse SIPP (U.S. Census Bureau) data to describe income poverty, asset poverty, income, net worth, and liquid assets of US parents ( N = 753) of children with developmental disabilities. Results Income and asset poverty was greatest for the youngest and oldest parents. Liquid assets were relatively flat across cohorts, while net worth declined sharply for elderly parents. Income was highest among parents aged 45-54. Conclusion These findings signal significant financial vulnerability among parents of children with developmental disabilities. Policy makers should consider targeted measures to improve the financial well-being of these parents, particularly the youngest and oldest. [ABSTRACT FROM AUTHOR]

The authors analyzed data from the 2001 Survey of Income and Program Participation (SIPP) to determine the extent of a disability-based net worth and income gap among U.S. households. The sample included 4,154 households with an adult with disabilities and 12,365 households without an adult with disabilities. Households with an adult with disabilities had substantially reduced net worth and income as contrasted with households without adults with disabilities, regardless of family structure (married couple, single women, or single men). Policy implications are discussed. [ABSTRACT FROM AUTHOR]

Abstract: This study examines whether the US public health insurance program Medicaid suppresses racial disparities in parental identification of service needs of their children with special health care needs (CSHCN). We analyze data from the 2001 US National Survey of CSHCN (n = 14,167 children). We examine three outcomes which were parental identification of (a) the child''s need for professional care coordination, (b) the child''s need for mental health services, and (c) the family''s need for mental health services. A suppression analysis, which is a form of mediation analysis, was conducted. Our results show a disparity, reflected in a negative direct effect of race for all three outcomes: Black parents of CSHCN are less likely to report a need for services than White parents of CSHCN and Medicaid coverage was associated with reduced racial disparities in reporting the need for services. These analyses suggest receipt of Medicaid is associated with a suppression of racial disparities in reported need for services. [Copyright &y& Elsevier]

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. [ABSTRACT FROM AUTHOR]

OBJECTIVE: We examined the association between state Medicaid and State Children's Health Insurance Program (SCHIP) income eligibility and the financial burden reported by low-income families raising children with special health care needs (CSHCN). SAMPLE AND METHODS: Data on low-income CSHCN and their families were from the National Survey of Children With Special Health Care Needs (N = 17039), with a representative sample from each state. State Medicaid and SCHIP income-eligibility thresholds were from publicly available sources. The 3 outcomes included whether families had any out-of-pocket health care expenditures during the previous 12 months for their CSHCN, amount of expenditure, and expenditures as a percentage of family income. We used multilevel logistic regression to model the association between Medicaid and SCHIP characteristics and families' financial burden, controlling state median income and child- and family-level characteristics. RESULTS: Overall, 61% of low-income families reported expenditures of >$0. Among these families, 30% had expenses between $250 and $500, and 34% had expenses of more than $500. Twenty-seven percent of the families reporting any expenses had expenditures that exceeded 3% of their total household income. The percentage of low-income families with out-of-pocket expenses that exceeded 3% of their income varied considerably according to state and ranged from 5.6% to 25.8%. Families living in states with higher Medicaid and SCHIP income-eligibility guidelines were less likely to have high absolute burden and high relative burden. CONCLUSIONS: Beyond child and family characteristics, there is considerable state-level variability in low-income families' out-of-pocket expenditures for their CSHCN. A portion of this variability is associated with states' Medicaid and SCHIP income-eligibility thresholds. Families living in states with more generous programs report less absolute and relative financial burden than families living in states with less generous benefits. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract: Data from the 2002 National Survey of Children with Special Health Care Needs were analyzed to understand the state-level policies and individual characteristics associated with receipt of professional care coordination by families raising children with special health care needs. Families living in states with more generous State Children''s Health Insurance Programs (SCHIP) were more likely to receive professional care coordination. Numerous individual characteristics are associated with receipt of support services. States could likely improve access to support services for these families by expanding SCHIP and implementing targeted measures to help uninsured children, children whose parents do not speak English, those living below 300% of the federal poverty level, and families raising children with the most severe impairments. [Copyright &y& Elsevier]

A focus group study was conducted with individuals with developmental disabilities to understand their perspectives on their health status, health promotion behaviors, and health care services they receive. The majority of participants reported good to excellent health, and all had some form of medical insurance. However, participants reported notable gaps in dental and reproductive health care and age-specific cancer screening. Some adults had good access to medical care, particularly those with a family member or friend who served as their health advocate. Some adults had a sound understanding of their health and health care needs. Program and policy implications are discussed and recommendations are presented to ensure adequate health care for adults with disabilities, including health advocacy training for caregivers. [ABSTRACT FROM AUTHOR]

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 US. 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. [ABSTRACT FROM AUTHOR]

The article reports on the Healthy Families Act, a pending legislation to protect working families. Some workers from the moderate and low-income labor force do not receive pay for sick days, resulting in family members having to choose between caring for their sick or earning income. In addition, working families with developmentally disabled children are prone to poverty. The proposed Healthy Families Act aims to extend the paid sick days for the care of non-working family members. An overview of the law is provided.

OBJECTIVE. The main objective of this study was to examine variability among states for 3 indicators of the family financial burden related to caring for children with special health care needs. METHODS. Data were from a 2001 national survey of households with children (<18 years of age) with special health care needs, with a representative sample from each state. The outcomes examined included whether a family had any out-of-pocket expenditures during the previous 12 months related to the child's special health care needs, the amount of expenditure (absolute burden), and the amount of expenditure per $1000 of family income (relative burden). We used multilevel regression to examine state-level variability in financial burden, controlling for individual-level factors. We also examined the association between state median family income and state mean financial burden. RESULTS. Overall, 82.5% of families reported expenditures of more than $0. Among these families, the mean unadjusted absolute burden was $752 and the relative burden was $19.6 per $1000. Adjusted state means ranged from $562 to $972 for absolute burden and from $14.5 to $32.3 per $1000 for relative burden. Families living in states with higher median family incomes had lower financial burdens across all 3 measures. CONCLUSIONS. Families that are similar with respect to household demographic characteristics and the nature of their children's special health care needs have different out-of-pocket health expenditures depending on the state in which they live. Documenting and understanding this variability moves the field closer to the goal of establishing evidence-based, state policy recommendations aimed at reducing the financial burden of these vulnerable families. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]