The Health Security Act of 1993 and health care for persons with disabilities

Persons with disabilities are an important and potentially vulnerable subgroup of the American public. This article discusses both the progress and the promise of health care reform in terms of benefits and impact on persons with physical and/or mental impairments. The author investigates the possibilities implied in the Clinton reform proposals for opportunities to include health promotion, prevention, and early intervention strategies, designed specifically for persons with disabilities. The author also examines the extent to which the reform plan may change the traditional, medically oriented approach to disability.     

The organization and financing of health services for persons with disabilities

Americans with disabilities are rarely considered a distinct group of health care users in the same way as are older Americans, children, racial and ethnic minorities, and others who are perceived to have different needs and access issues. Indeed, to some extent individuals with disabilities overlap with all these groups. But they also have distinct needs with material implications for the organization, delivery, and financing of health care services. Despite the disproportionate health care needs and expenditures of many--though not all--individuals with disabilities, the mainstream health services research community has largely neglected them. This article outlines the most pressing health service research issues in addressing the health care needs of individuals with disabilities.     

Health care providers' perceptions of the vulnerability of persons with disabilities: Sociological frameworks and empirical analyses

In this study, we explored health care providers' perceptions about their professional responsibility for persons with disabilities. We examined the providers' perceptions of the vulnerability of persons with disabilities to sexual exploitation. We also elicited the professionals' assumptions about the consequences of such exploitation to the persons with disability and the professionals working with them. Our analyses indicated that these professionals perceived that different categories of disability pose different risk of sexual exploitation. Populations with forms of cognitive impairment were considered most vulnerable. In terms of professional responsibility for the care of persons who might have experienced sexual exploitation, respondents reported least confidence in their ability to detect instances of exploitation. In contrast, respondents expressed greater confidence in their ability to report and conduct follow-up of abuse. The professionals anticipated providing emotional support to persons who experienced exploitation. We discuss the study's implications for training and policy formation.     

Working on reform. How workers' compensation medical care is affected by health care reform.

The medical component of workers'' compensation programs-now costing over $24 billion annually-and the rest of the nation''s medical care system are linked. They share the same patients and providers. They provide similar benefits and services. And they struggle over who should pay for what. Clearly, health care reform and restructuring will have a major impact on the operation and expenditures of the workers'' compensation system. For a brief period, during the 1994 national health care reform debate, these two systems were part of the same federal policy development and legislative process. With comprehensive health care reform no longer on the horizon, states now are tackling both workers'' compensation and medical system reforms on their own. This paper reviews the major issues federal and state policy makers face as they consider reforms affecting the relationship between workers'' compensation and traditional health insurance. What is the relationship of the workers'' compensation cost crisis to that in general health care? What strategies are being considered by states involved in reforming the medical component of workers compensation? What are the major policy implications of these strategies?     

Growing Up With a Physical Difference

Although childhood is supposed to be a time of well-being, many of our nation's children have significant, continuing physical health problems that make them distinctly different from their healthy peers As a result, these children face special challenges as they grow up This article explores the implications of growmg up with a physical difference by focusing on four issues Why are physical differences important? To what extent can we appropriately generalize across diagnoses? What are the developmental and familial consequences of chronic health impairments? What can be done to improve the situation? The author discusses developments contributing to a heightened concern for these children and reviews objective data underlymg a noncategorial approach to childhood chronic illness Attention is paid to the consequences of a chronic illness for the child, the family, and the school--and how health care providers can minimize the negative consequences As a whole, the evidence indicates that chronically ill children and their families can be effectively helped within the context of care normally provided.     

A model program for African American children in the foster care system

The children who come into shelter care are usually children who have been abused and neglected. Many have experienced numerous placements. Typically, these children have had to perform adult roles, such as caring for their own siblings or parents. They have not had the opportunity to negotiate the developmental phases of childhood in a healthy manner. Few appropriate socialization behaviors have been modeled. Many of these children demonstrate a sense of mistrust, hopelessness and serious academic problems. These are factors that have the potential to lead to life disabilities. Based on their work in the foster care system, the authors maintain that interventions at any level in the continuum of care can contribute to the healthy development of children. Effective interventions at the shelter care level may significantly reduce the foster child's potential for lifelong disabilities. This article will focus on African American males in shelter care between the ages of 7 and 14. At this juncture in their lives, these children are especially open to therapeutic interventions. The authors believe the presented model has application to all racial and ethnic groups, and aspects of the model are applicable to other settings in the foster care system.     

Meeting Children's Mental and Physical Health Needs in Child Welfare: The Importance of Caregivers

Caregivers in the child welfare system are an important element in ensuring that mental and pediatric health services for their children are utilized appropriately. The high prevalence of mental and physical health problems of children in the child welfare system along with the inadequate utilization of health services make the role of caregivers essential for improving health outcomes. This article explores the barriers to meeting the health needs of this vulnerable population of children and how different types of caregivers (unrelated foster, kinship foster, and birth parents) utilize mental and pediatric health services. Child welfare caseworkers need to increase their communication with caregivers, assess adherence to health care recommendations, and help alleviate barriers to care.     

Assessing the health perspectives of unique populations of adolescents: a focus group study

Few articles report on youth's perceptions about health-related issues and needs and even fewer have given voice to youth with disabilities, chronic health conditions, or youth in therapeutic foster care. The purpose of this study was to explore perceptions of health issues from the perspectives of youth placed in therapeutic foster care, youth with chronic medical conditions, and youth with disabilities. Twelve focus groups with 67 youth aged 13-20 were conducted in rural, suburban, and urban communities in the Commonwealth of Virginia. Data analysis revealed both within unique group themes and themes that cut across unique groups. Youth in therapeutic foster care with chronic health conditions or with disabilities perceive themselves as being different from their peers. Participants in each group expressed concerns about the unique issues that they confront daily and how these challenges differentiate them from youth who do not share their life experiences. They expressed the desire for other youth to understand them better and to not treat them differently. Discussion and implications focus on the need to create programs to support the unique needs of these youth.     

Getting on with life: positive experiences of living with a spinal cord injury

Currently, the dominant cultural beliefs toward disability are negative, and the existing literature is limited with respect to examining how people are using and/or viewing their disabilities positively. The purpose of this study was to identify how individuals living with a spinal cord injury (SCI) viewed and/or used their disability positively, and what contextual influences facilitated this positive approach. This study was a secondary analysis of qualitative data from a larger study. The findings revealed three levels at which disability was viewed and/or used positively by people with SCI: self, peers, and disability community. In addition, several aspects of the participants' situations were found to facilitate this positive view and/or use of disability: personality, spirituality, support systems, and acceptance of one's disability. The findings reveal that individuals with SCI are viewing and/or using their disabilities positively in many different ways. This study has significant implications for the direction of future research and for health care professionals who need to increase their advocacy and facilitating roles.     

Disability-competence training influences health care providers’ conceptualizations of disability: An evaluation study

BackgroundOften, health care providers’ approach to people with disabilities is grounded in a medical model perspective. This view highlights individual deficits and does not foster patient-centeredness. Learning about and adopting a more social model, focused on creating accessible and inclusive approaches and environments, could help providers to reshape their attitudes about disability, dismantling barriers to care.ObjectiveThis study used innovative methods to evaluate a recorded, online disability-competence training for health care providers. It was hypothesized that the training would 1) shift providers’ conceptualizations of disability away from a medical model view toward a social model view of disability and 2) equip providers with actionable strategies to improve access to care for people with disabilities.MethodsQuantitative and qualitative evaluation data were analyzed for n = 192 training participants. Measures included participants’ pre- and post-training conceptualizations of disability, proposed actions steps to facilitate patient-centered care, and measures of satisfaction and self-assessed knowledge gain.ResultsBoth hypotheses were supported. After the training, participants’ conceptualizations of disability were more reflective of the social model, and participants were better able to articulate specific action steps they could take to promote accessible, responsive care.ConclusionsThis study demonstrates that health care provider training can positively affect providers’ knowledge, outlook, and approach to caring for people with disabilities. Its findings can inform broader efforts aimed at systematically changing the way health professionals are educated and trained to provide care in disability-competent ways.     

Assessing the Health Perspectives of Unique Populations of Adolescents: A Focus Group Study

Few articles report on youth's perceptions about health-related issues and needs and even fewer have given voice to youth with disabilities, chronic health conditions, or youth in therapeutic foster care. The purpose of this study was to explore perceptions of health issues from the perspectives of youth placed in therapeutic foster care, youth with chronic medical conditions, and youth with disabilities. Twelve focus groups with 67 youth aged 13–20 were conducted in rural, suburban, and urban communities in the Commonwealth of Virginia. Data analysis revealed both within unique group themes and themes that cut across unique groups. Youth in therapeutic foster care with chronic health conditions or with disabilities perceive themselves as being different from their peers. Participants in each group expressed concerns about the unique issues that they confront daily and how these challenges differentiate them from youth who do not share their life experiences. They expressed the desire for other youth to understand them better and to not treat them differently. Discussion and implications focus on the need to create programs to support the unique needs of these youth.     

Stitching the fabric back together: child fostering attitudes in the transition to a chronic HIV epidemic

There are an estimated 56 million orphans and vulnerable children across sub-Saharan Africa. Communities typically care for orphan children through informal caring arrangements – either within or outside of kinship networks. Within Kenya, an estimated 250,000 children live on the streets. There is less research related to fostering attitudes of this special population than orphans and vulnerable children generally. Important research over the past decade has illuminated multiple ways in which children are made more vulnerable because of HIV, including parental death and street-migration from HIV-affected households. As HIV transitions from a terminal illness to a chronic, manageable one, research is also required to establish how parents living with HIV can be an asset to children. In this study, we assess whether mothers living with HIV were very willing to foster biologically-related children, and street-involved children, how these fostering attitudes differed from mothers not living with HIV, and whether differences in fostering attitudes by reported HIV status were mediated by social support, family functioning and general self-rated health. Approximately 40% of mothers living with HIV were very willing to provide long-term foster care to biologically-related or street-involved children. This was less than the percentage of mothers not living with HIV, who were very willing to foster biologically-related children (61%) or street-involved children (58%). Significant portions of these differences were explained by social support, family functioning and general self-rated health. Multi-sectoral approaches are suggested by these findings in order to improve the child-fostering capacity of mothers living with HIV. Improving social support, family functioning and general self-rated health among HIV-infected mothers may not only provide protective benefits for the mothers and their children, but also expand the community’s capacity to care for orphan and vulnerable children.     

Disparities in health care access for women with disabilities in the United States from the 2006 National Health Interview Survey

BackgroundThe objective of this study was to determine the relationship between disability, gender and access to health care, especially for women with disabilities compared to women without disabilities and men with disabilities.MethodsData from the 2006 NHIS were examined using chi square, linear regression, and logistic analysis to determine the relationship between health care access, severity of disability, and gender. Responses regarding functional limitations from adults aged 18 and over or their proxies were used to determine placement for analysis. The dependent variable was access to health care. The independent variables were disability and gender.ResultsWomen with disabilities had less access to health care than women without disabilities and men with disabilities. Disability and gender were predictive of lack of access to health care. Those who are disabled are 2.26 to 3.78 times more likely to not to have access to health care, and women were 1.26 times more likely not to have access to health care.ConclusionHealth care professionals should advocate for more parity in health care access, removal of barriers and policies to provide needed funding for health care.     

Inclusion team science improves participation of children with disabilities in pediatric obesity programs

BackgroundChildren with disabilities have higher prevalence rates of obesity compared to children without disabilities. Evidence supports the importance of early interventions in preventing pediatric obesity from progressing to adulthood obesity but there are limited opportunities for children with disabilities to participate in these early life programs.ObjectiveThe aim of this study was to examine multiple frameworks of disability inclusion that progressively reshaped an existing pediatric obesity intervention program toward improving participation for children with disabilities.MethodsA qualitative narrative analysis approach involving semi-structured interviews, focus groups and participant observations was used to describe the experiences of eight obese children with disabilities, twelve obese children without disabilities, ten parents and ten volunteer healthcare student trainers who participated in an obesity intervention program, Fit Kids for Life (FKFL).ResultsFKFL participants' positive worldviews of disability inclusion, active involvement of parents and family members, diverse team of health professionals and volunteers, and improved health outcomes facilitated children with disabilities’ participation in the program. Disability and obesity stigma and lack of local inclusive sites hindered access and participation for children with disabilities.ConclusionsResults support using inclusion team science to improve participation and outcomes of a pediatric obesity intervention program for children with disabilities.     

What should we teach about disability? National consensus on disability competencies for health care education

BackgroundHealth care providers are unprepared to meet the health needs of patients who have disabilities. Disability training is needed, yet there is little agreement about what should be taught.ObjectiveEstablish a national consensus on what healthcare providers across disciplines need to know to provide quality care to patients with all types of disabilities (e.g., mobility, sensory, developmental, mental health).MethodsPeople with disabilities, disability advocates, family members of people with disabilities, disability and health professionals, and inter-disciplinary health educators systematically evaluated and provided feedback on a draft set of disability competencies. Based on this feedback, competencies were iteratively refined.ResultsAfter two waves of feedback, six competencies, 49 sub-competencies, and 10 principles and values emerged that addressed topics such as respect, person-centered care, and awareness of physical, attitudinal, and communication health care barriers. An overwhelming majority (89%) agreed or strongly agreed that the disability competencies reflected the core understandings needed to provide quality care for patients with disabilities, were relevant across disability types (85%), and across health care disciplines (96%). Averaging evaluative feedback across competencies, participants reported that the competencies were important (98%) and clear (96%).ConclusionsThis consensus on what to teach is an important milestone in preparing a disability competent health care workforce. Future directions for research, training, and policy are discussed. When disability is included in health care education, the health care workforce will be prepared to deliver accessible, patient-centered, quality health care to patients with disabilities.     

Disability, displacement and public health: a vision for Haiti

Refugees and internally displaced persons (IDPs) with disabilities are some of the most neglected and socially excluded groups within any population. Natural disasters are events that cause bodily harm resulting in disability and that result in the displacement of people. Many predict a continual increase of natural disasters in the future due to changing climates. People with disabilities constitute one of the most vulnerable social groups in the case of a natural disaster. In 2010, Haiti suffered a devastating earthquake leading to great social, health and economic hardship including the displacement of people with disabilities. Due to the very extent of the structural devastation Haiti experienced and the international focus on assisting Haitians who suffered injuries leading to disabilities, there is an opportunity for Haiti to become a model for future disaster management in terms of mainstreaming the needs of people with disabilities in the restoration, resettlement and reintegration process.     

Youth with Behavioral Health Disorders Aging Out of Foster Care: a Systematic Review and Implications for Policy,Research, and Practice

This systematic review aimed to (1) identify and summarize empirical studies on youth with behavioral health disorders aging out of foster care and (2) address implications for behavioral health policy, research, and practice. We identified previous studies by searching PubMed, PsycINFO, EBSCO, and ISI Citation Indexes and obtaining references from key experts in the child welfare field. A total of 28 full articles published between 1991 and 2014 were reviewed and summarized into the key areas including systems of care, disability type, transition practice area, study methods, study sample, transition outcome measures, study analysis, and study findings. Considering how fast youth who have behavioral health disorders fall through the crack as they exit foster care, one cannot understate the importance of incorporating timely and appropriate transition planning and care coordination for youth who have behavioral health disorders aging out of foster care into the usual case management performed by behavioral health systems and service providers.     

Uncovering health care inequalities among adults with intellectual and developmental disabilities

Even as attention is drawn to the increasing number of individuals who experience health inequalities in the United States, little is known about the health inequalities experienced by individuals with intellectual and developmental disabilities. Current disability research mainly focuses on physical disabilities. This article discusses the health disparities experienced by individuals with intellectual and developmental disabilities.The authors conducted focus groups with parents/guardians, self-advocates, and community support professionals and key informant interviews with health care professionals to assess the needs of this less frequently documented population. Results from this study indicate that individuals with intellectual and developmental disabilities face health care disparities and inequities in four areas: access, knowledge, communication, and quality.     

Patient-Held Maternal and/or Child Health Records: Meeting the Information Needs of Patients and Healthcare Providers in Developing Countries?

Though improvements in infant and maternal mortality rates have occurred over time, women and children still die every hour from preventable causes. Various regional, social and economic factors are involved in the ability of women and children to receive adequate care and prevention services. Patient-held maternal and/or child health records have been used for a number of years in many countries to help track health risks, vaccinations and other preventative health measures performed. Though these records are primarily designed to record patient histories and healthcare information and guide healthcare workers providing care, because the records are patient-held, they also allow families a greater ability to track their own health and prevention strategies.A literature search was performed to answer these questions: (1) What are maternal information needs regarding pregnancy, post-natal and infant healthcare, especially in developing countries? (2) What is known about maternal information seeking behavior in developing countries? (3) What is the history and current state of maternal and/or child patient-held healthcare records, do they provide for the information needs of the healthcare provider and what are the effects and outcomes of patient-held records in general and for maternal and/or child health in particular?Specific information needs of pregnant women and mothers are rarely studied. The small numbers of maternal information behavior results available indicate that mothers, in general, prefer to receive health information directly from their healthcare provider as opposed to from other sources (written, etc.) Overall, in developing countries, patient-held maternal and/or child healthcare records have a mostly positive effect for both patient and care provider. Mothers and children with records tend to have better outcomes in healthcare and preventative measures. Further research into the information behaviors of pregnant women and mothers to determine the extent of reliance on interpersonal information seeking is recommended before expending significant resources on enhanced patient-held maternal and/or child healthcare records including storage on mobile devices. In particular, research is needed to explore the utility of providing targeted health messages to mothers regarding their own health and that of their children; this might best be accomplished through mobile technologies.