Consumers' and workers' perspectives about consumer-directed services in the United States.

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 well as the experiences and perspectives of both the consumers and employees. The study also sought to better understand if and how consumer direction allows the consumer to direct his or her life, the impact consumer direction may have on the individual's health and health care, and how employment in consumer directed programs impacts the workers providing direct care services. METHOD: This qualitative study included interviews with consumers (N = 20) and workers (N = 15) in Virginia, a southern state in the US. Semi-structured phone interviews were conducted by one member of the research team and transcribed and coded for themes by the research team using grounded theory methodology. RESULTS: Consumers reported greater control over their services and increased access to health care, compared to what they previously received with traditional services. Conversely, consumers reported challenges in managing their staff and fulfilling the role of an employer. Employees reported a lack of training prior to starting their jobs, as well as an inability to live off on low hourly wages. Still, the majority of employees reported job satisfaction and fulfillment. CONCLUSION: Policymakers should expand and strengthen the consumer directed program.

Determinants of cervical cancer screening among women with intellectual disabilities: evidence from medical records.

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.

Accuracy of self-reported cervical and breast cancer screening by women with intellectual disability.

This study examines the accuracy of self-report of cervical and breast cancer screening by women with intellectual disability (n  =  155). Data from face-to-face interviews and medical records were analyzed. Total agreement, sensitivity, specificity, positive predictive value and negative predictive value were calculated. Total agreement between self-report and medical record on receipt of both procedures was 75% for Pap test and 87% for mammography. Self-reported Pap tests and mammography showed >90% sensitivity, but specificity was low for both procedures (41% for Pap test, 30% for mammogram), indicating overreporting of receipt of Pap tests and mammography similar to women without disabilities. Clinicians and researchers are cautioned to corroborate self-reported data with other sources for patients and research participants with intellectual disability.

Family caregivers' perspectives on barriers and facilitators of cervical and breast cancer screening for women with intellectual disability.

Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative interviews to assess barriers to care from the perspective of female familial caregivers (n  =  32). Caregivers reported a number of barriers to care including not knowing or not believing the exam was needed for their family member and discomfort during exams. Caregivers also described enablers to screening. The most common response to what enabled the woman with an intellectual disability to receive the exam was preparation prior to the exam. A significant portion of the sample of family caregivers lacked knowledge about the need for cervical and breast cancer screening by women with intellectual disability. Policy recommendations are discussed.

Receipt of mammography among women with intellectual disabilities: medical record data indicate substantial disparities for African American women.

BACKGROUND: Little information exists on the receipt of mammography by African American women with intellectual disabilities. Given the high rates of mortality from breast cancer among African American women and low screening rates among women with intellectual disabilities, it is important to understand the health screening behavior of this population. OBJECTIVE: We compared rates of mammography receipt among African American and White women with intellectual disabilities (n = 92) living in community settings in one Southeastern state in the United States. METHOD: Data were collected from women's medical records or abstraction forms obtained from medical practices. Multivariate logistic regressions were modeled for receipt of mammography in one year, one of two years, or both study years (2008- 2009). Covariates included the women's age, living arrangement, severity of impairment, and urban/rural residence location. RESULTS: In 2009, 29% of African American women and 59% of White women in the sample received mammograms. Similar disparities were found for receipt of mammography in either 2008 or 2009 and both 2008 and 2009. These disparities persisted after inclusion of model covariates. White women with intellectual disabilities received mammograms at adjusted rates that were nearly three to five times higher than African American women. CONCLUSION: African American women with intellectual disabilities receive mammography at significantly lower rates than White women with intellectual disabilities. Assertive measures to improve the screening rates for African American women with intellectual disabilities are urgently needed.

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

Understanding the financial well-being of single mothers who care for children with developmental disabilities is important to ensure that public policies can be effectively targeted to support these vulnerable families. The authors analyze data from the Survey of Income and Program Participation to describe income poverty, asset poverty, income, net worth, and liquid assets of U.S. single, working-age mothers (n  =  242) of children and adult children with developmental disabilities. The well-being of these mothers was compared to the situation of married mothers of children with developmental disabilities (n  =  345) and of single mothers who did not have children with developmental disabilities (n  =  6,547). Compared with both married mothers of children with developmental disabilities and single mothers without children with developmental disabilities, single mothers of children with developmental disabilities had markedly worse financial well-being across a range of income- and asset-based measures. Single mothers caring for children with developmental disabilities face adverse financial well-being as compared with other mothers. Policy makers should consider targeted measures to improve the financial well-being of these parents.

Racial and ethnic disparities in quality of health care among children with autism and other developmental disabilities.

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.

Health care of Latino children with autism and other developmental disabilities: quality of provider interaction mediates utilization.

This study examines access to, utilization of, and quality of health care for Latino children with autism and other developmental disabilities. We analyze data from the National Survey of Children with Special Health Care Needs (N  =  4,414 children with autism and other developmental disabilities). Compared with White children, Latino children with autism and other developmental disabilities had a consistent pattern of worse health care access, utilization, and quality. We then test mediation models to determine if health care quality mediates the relationship between ethnicity and health care utilization disparities. Three of four quality indicators (provider does not spend enough time with child, provider is not culturally sensitive, and provider does not make parent feel like a partner) were significant mediators. These analyses suggest that interventions targeted at improving providers' cultural sensitivity and behavior during the clinical encounter may reduce disparities in the health care utilization of Latino children with autism and other developmental disabilities.

State Medicaid policies and the health care access of low-income children with special health care needs living in the American South.

BACKGROUND: The policy correlates that improve or impede the health care access of children with special health care needs (CSHCN), and particularly children living in the South, are not well understood. METHODS: We analyzed data from the 2005-2006 National Survey of CSHCN (n = 4560 Southern children and 8788 non-Southern children). State Medicaid policy predictors included the frequency of Medicaid eligibility renewals (6 or 12 months) and the level of reimbursement provided for high-complexity and moderate-complexity pediatric office visits. Hierarchical generalized linear modeling was used to examine the association between state Medicaid policy features and 5 indicators of health care access (delayed or foregone care, difficulty using services, difficulty getting referrals, unmet routine care needs, and unmet specialty care needs), after controlling for child, family, and state factors. RESULTS: Low-income Southern CSHCN who lived in states with less-frequent Medicaid eligibility renewal requirements and higher health care provider reimbursement rates had significantly better health care access than did their Southern counterparts in states with more-frequent Medicaid eligibility renewals and lower reimbursement rates. LIMITATIONS: These data are cross-sectional, and causality cannot be inferred. CONCLUSION: Policymakers interested in addressing state budget gaps should be concerned that doing so by increasing the frequency of Medicaid eligibility renewals or by cutting health care provider reimbursement rates may well result in adverse health care access for low-income Southern CSHCN.

Cervical and breast cancer-screening knowledge of women with developmental disabilities.

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.

Financial well-being of US parents caring for co-resident children and adults with developmental disabilities: an age cohort analysis.

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.