Patterns in primary health care utilization among individuals with intellectual and developmental disabilities in Florida

Individuals living with intellectual and developmental disabilities face complex medical problems. Primary care physicians tend to provide basic medical care, serving as a base through which other forms of care can be accessed. In this study we describe patterns of primary care utilization among adults enrolled on the Florida Medicaid's Home and Community-Based Services Waiver. About 40% of the adults on the Waiver did not see a primary care provider between 1999 and 2003. Primary health care utilization was higher in the northern parts of Florida and conversely lower in the southeast. The establishment of a medical home can ensure the timely receipt of preventive care as well as help coordinate the complex care that many individuals with disabilities need.     

Health behaviors, service utilization, and access to care among older mothers of color who have children with developmental disabilities

This study examined health behaviors, utilization, and access to care among older Latina and Black American mothers who co-reside with a child with developmental disabilities. Using data from the National Health Interview Survey National Center for Health Statistics (2005a), we compared Latina and Black American caregivers to similar women who did not have caregiving responsibilities. Findings showed that Latina caregivers were more likely to smoke and have insurance; Black American caregivers were less likely to be able to afford medication and mental health care; and both groups were less likely to have seen a doctor in the past year than their noncaregiving counterparts. Findings suggest that service providers should consider developing programs that focus on health for caregivers of color. Furthermore, results suggest that providers should take into account differing trends across ethnicities when designing programs.     

Access to health care for individuals with developmental disabilities from minority backgrounds

In this project we examined access to health care by individuals with developmental disabilities in Kansas from low-income populations and from minority backgrounds. Four criteria for determining access were employed: availability, accessibility, affordability, and appropriateness of care. Factors that pose barriers and that facilitate access are described and recommendations are set out, with particular reference to the 2002 Report of the Surgeon General of the United States, related to health status of people with mental retardation.     

Juggling and struggling: a preliminary work-life study of mothers with adolescents who have developmental disabilities

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.     

The health and well-being of black mothers who care for their adult children with schizophrenia

This study compared the mental and physical health of two groups of black mothers aged 55 years and older: those who were providing care for their adult child with schizophrenia or schizoaffective disorder (N=30) and those who did not have a child with mental illness (N=263). The only demographic variable that was found to differ between the two groups was that the women who were providing care for their adult child with mental illness had more children than the women in the comparison group. Both groups of women had similar mental health status. However, the mothers who were providing care for their adult children with mental illness had higher rates of chronic health conditions, such as high blood pressure, arthritis, and eye problems.     

Maternal stress,well-being,and impaired sleep in mothers of children with developmental disabilities: A literature review

Having children with developmental disabilities (DDs) requires a high level of caregiving responsibilities, and existing studies support that mothers of children with DDs experience high levels of maternal stress as well as poor sleep and well-being. Given the fact that the number of children with DDs has increased, an up-to-date literature review is necessary to identify factors associated with maternal stress, sleep, and well-being. In addition, understanding these factors and their relationships may provide better strategies in designing effective interventions that can reduce the burden in mothers of children with DDs. This review summarized 28 scientific research papers that examined maternal stress, sleep, and well-being in mothers of children with DDs in past 12 years. The study findings indicate that mothers of children with DDs experience higher levels of stress than mothers of typically developing children, and it remains high over time. In addition, these mothers often encounter depressive symptoms as well as poor sleep quality. The study results also reveal that there is a bidirectional relationship between maternal stress and depressive symptoms as well as between poor sleep quality and depressive symptoms. For example, higher stress mothers experienced more depressive symptoms. Mothers of children with DDs with poor sleep quality are significantly associated with more depressive symptoms. Child behavior problems were significantly associated with both maternal stress and depressive symptoms, but cautious interpretation is warranted due to the shared variance between child behavior problems, maternal stress, and depressive symptoms. Methodological guidelines for future research involve the use of reliable and valid instruments for the measurement of child behavior problems, maternal stress, and sleep. Recommendations for future research are included.     

The role of coping strategies in predicting change in parenting efficacy and depressive symptoms among mothers of adolescents with developmental disabilities

Background Parents of children with developmental disabilities (DD) face greater caregiving demands than parents of children without DD. There is considerable variability in parents' adjustment to raising a child with DD, however. In line with a strengths‐based approach, this study explores coping strategies as potential mechanisms of resilience among mothers of adolescents with DD. This study examines the frequency with which mothers use various coping strategies and the extent to which those strategies moderate the relationship between adolescent behaviour problems and aspects of maternal well‐being. Both positive and negative dimensions of well‐being are explored, with maternal depressive symptoms and perceived parenting efficacy examined as outcomes cross‐sectionally and longitudinally. Methods The present study focuses on 92 mothers and their adolescents with DD. The adolescents had a wide range of diagnoses, all with continuing special needs. Data were collected from mothers through interviews and self‐administered questionnaires when their adolescents were aged 15 and aged 18. A structured assessment of the adolescent was completed during home visits at age 15. Results Mothers reported frequently using strategies of denial and planning but rarely using strategies of mental and behavioural disengagement to cope with recent stressful situations. Adolescent behaviour problems were found to contribute to greater symptoms of depression and lower feelings of parenting efficacy as well as increases in depressive symptoms over time. Mothers of sons, but not daughters, reported increases in parenting efficacy across their child's adolescent period. Above and beyond adolescent factors, several coping strategies emerged as significant predictors of mothers' symptoms of depression and perceived parenting efficacy. Moreover, use of Active Coping/Planning, Positive Reinterpretation/Growth, and Behavioural/Mental Disengagement as coping strategies moderated the impact of adolescent behaviour problems on maternal depressive symptoms. Conclusions This study extends previous findings by focusing on both positive and negative dimensions of parent well‐being during their child's adolescent period. Adolescence can be a stressful time for parents, with typical developmental tasks entailing additional strains for parents of adolescents with DD. The present findings point to several coping strategies that may reduce the impact of challenging behaviours during this period on mothers' symptoms of depression and feelings of parenting efficacy. Certain coping strategies were found to exert a greater impact on maternal well‐being for parents of adolescents with higher levels of behaviour problems, suggesting that interventions may benefit from an increased focus on this group of mothers with heightened caregiving demands.     

Medicaid managed care model of primary care and health care management for individuals with developmental disabilities

Lack of sufficient accessible community-based health care services for individuals with developmental disabilities has led to disparities in health outcomes and an overreliance on expensive models of care delivered in hospitals and other safety net or state-subsidized providers. A functioning community-based primary health care model, with an integrated care management component, functioning in the general health care practice marketplace, is described and shown to address recent Surgeon General recommendations as well as evaluative criteria for availability, affordability, acceptability, and appropriateness of care. The model functions in both fee-for-service and managed care environments, including Medicaid managed care for individuals with developmental disabilities. Experience shows this model to be both scalable and replicable, resulting in positive health outcomes and increased patient satisfaction.     

Accommodative coping and well-being of midlife parents of children with mental health problems or developmental disabilities

This study examined how accommodative coping via flexible goal adjustment affects the wellbeing of midlife parents. Using data from the Wisconsin Longitudinal Study, a population-based study of midlife adults, the authors compared parents who have a child with a severe mental health problem, a child with a developmental disability, or a child with no chronic illness or disability. Overall, parents had better well-being (i.e., lower levels of depressive and physical symptoms, higher levels of environmental mastery and self-acceptance) if they used accommodative coping. This effect was stronger for parents of individuals with a severe mental health problem than for the comparison group.     

The contribution of marital quality to the well-being of parents of children with developmental disabilities

Background This study examines the contribution of the marital relationship to the well‐being of both mothers and fathers of children with developmental disabilities. Parent well‐being is conceptualized in terms of mental health, parenting stress and parenting efficacy. Methods These analyses are based on data from 67 families participating in the Early Intervention Collaborative Study, an ongoing longitudinal investigation of the development of children with disabilities and the adaptation of their families. Multidimensional assessment techniques were used to collect data from married mothers and fathers and their child with a disability. Mother and father data were analysed separately using parallel hierarchical regression models. Results For both mothers and fathers, greater marital quality predicted lower parenting stress and fewer depressive symptoms above and beyond socio‐economic status, child characteristics and social support. In relation to parenting efficacy, marital quality added significant unique variance for mothers but not for fathers. For fathers, greater social support predicted increased parenting efficacy. Child behaviour was also a powerful predictor of parental well‐being for both mothers and fathers. Conclusion The findings support the importance of the marital relationship to parental well‐being and illustrate the value of including fathers in studies of children with developmental disabilities.     

Medical and health care needs of families providing in-home care for relatives with developmental disabilities

The purpose of this investigation was to attempt to describe the health care needs of families providing in-home care to members with developmental disabilities as well as the characteristics and demographics of families providing in-home care. The survey included 761 families who participated in a federal demonstration project in rural southern Georgia. The results indicated that impoverished families need increased assistance to provide adequate medical and health care when providing in-home care to relatives experiencing developmental disabilities. Implications for administration of programs and development of policies are discussed.     

Human papillomavirus vaccine uptake in adolescents with developmental disabilities

Background: The Human Papillomavirus (HPV) vaccine is offered in Australia to all males and females at 12 to 13 years. In 2015 the national HPV coverage was 77.4% for females and 66.4% for males. There is no Australian coverage data for the subgroup of adolescents with disabilities.

Method: We reviewed the HPV vaccine status of all 14 year-old adolescents who attended a developmental medicine clinic in a tertiary hospital in Melbourne during 2014. Motor function and intellectual impairment were also recorded.

Results: Of the 72 adolescents in the audit, only 39.5% of males and 44.1% of females were fully immunised against HPV. Those with intellectual impairment had particularly low levels of HPV immunisation (16/47 (34%)).

Conclusion: In this study HPV vaccine coverage in adolescents with developmental disabilities was found to be well below national levels. Larger studies of HPV uptake and exploration of the barriers to immunisation in this population are urgently needed.     

Family developmental risk factors among adolescents with disabilities and children of parents with disabilities

This paper investigates how the learning environments and family dynamics differ if households have a child with a disability or a parent with a disability. Using data from the National Longitudinal Survey of Youth 1997, results indicate that children with disabilities experience similar learning environments as other children, but have somewhat weaker relationships with their parents. In two-parent families, maternal disability lowers parents' school involvement and is associated with a less enriching home environment. Paternal disability reduces maternal monitoring and positive family activities possibly because mothers divert care-giving resources from their children to their male partners. Children in mother-headed households experience learning environments and family dynamics that are similar regardless of their own disability status or that of their mothers, but these outcomes are markedly inferior to those of children growing up in two-parent households. Future research on adolescent development should consider the disability status of children and parents, with particular attention to patterns of gendered care-giving in American families.     

Sleep quality and psychological wellbeing in mothers of children with developmental disabilities

Sleep and behavioural difficulties are common in children with developmental disabilities. Mothers often wake and tend to their child when their child is having sleep difficulties. Therefore, mothers of children with developmental disabilities can have poor sleep quality due to these disruptions. The present study investigated the impact of sleep and behaviour problems in children with developmental disabilities on mothers’ sleep quality and psychological wellbeing. The sample consisted of 46 mothers and 50 children with developmental disabilities. The results indicated that greater sleep and behaviour problems in children were significantly associated with disturbed sleep and increased depression, anxiety and stress levels in mothers. Mothers’ sleep disturbance was also found to significantly predict poor maternal psychological wellbeing. The research limitations, implications of findings, and directions for future research are also discussed.     

Quality of health care for people with developmental disabilities: the challenge of managed care

Health care quality issues for people with developmental disabilities under managed care were explored. Health-related quality was defined in terms of four domains: structure, process, outcome, and satisfaction. Three general problems in the assessment of health care quality were identified: lack of quality measures, patient response problems, and lack of system elements. Selected current measurement systems were described in relation to their use for people with developmental disabilities. An approach to developing quality measures was outlined using Healthy People 2000, Health Plan Employer Data Information Set, and clinical practice issues. The movement toward quality improvement was examined and recommendations presented for steps in developing and measuring health care quality.     

Telepsychiatry for children with developmental disabilities: applications for patient care and medical education

Telemedicine is able to provide specialized care to rural patients with limited access. The developmentally disabled population is highly suited to this modality and can be seen in general and specialized clinics. The collaborative care model, which is useful for this population, provides ongoing collaboration with both the local primary care provider and the local treatment team. Telepsychiatry can be used for education of trainees working together with an attending physician. These clinics can become exceptional opportunities to provide exposure to the specialty of child psychiatry for young doctors in training. As new programs develop, telepsychiatry for treatment and telepsychiatry for training should go hand in hand.