Susan Foley

Health Inequity in Children and Youth With Chronic Health Conditions

BACKGROUND: Over the last decades, there have been great advances in health care delivered to children with chronic conditions, but not all children have benefitted equally from them. OBJECTIVES: To describe health inequities experienced by children with chronic health conditions. METHODS: We performed a literature review of English-language studies identified from the Medline, Centers for Disease Control and Prevention, National Cancer Institute, and Cystic Fibrosis Foundation Web sites that were published between January 1985 and May 2009, included children aged 0 to 18 years, and contained the key words “incidence,” “prevalence,” “survival,” “mortality,” or “disparity” in the title or abstract for the following health conditions: acute leukemia, asthma, attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorders, cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, HIV/AIDS, major congenital heart defects, major depressive disorder, sickle cell anemia, spina bifida, and traumatic brain injury. RESULTS: Black children had higher rates of cerebral palsy and HIV/AIDS, were less likely to be diagnosed with ADHD, had more emergency department visits, hospitalizations, and had higher mortality rates associated with asthma; and survived less often with Down syndrome, type 1 diabetes, and traumatic brain injury when compared with white children. Hispanic children had higher rates of spina bifida from Mexico-born mothers, had higher rates of HIV/AIDS and depression, were less likely to be diagnosed with ADHD, had poorer glycemic control with type 1 diabetes, and survived less often with acute leukemia compared with white children. CONCLUSIONS: Serious racial and ethnic health and health care inequities persist for children with chronic health conditions.

Focus Groups and Methodological Reflections Conscientious Flexibility in the Field

This article discusses the methodological issues and pragmatic dilemmas confronted by a group of researchers conducting focus groups composed of people with disabilities. As an initial component of a mixed-method, longitudinal research project, the intention was to gather perceptions of the ways in which recent policy initiatives shape the lives and employment experiences of people with disabilities. We present the methodological design issues we encountered in planning and conducting the focus groups with the hope that our reflections inform future qualitative research designs involving people with disabilities.

Vocational Rehabilitation Interagency Activity Improving Supported Employment for People with Severe Disabilities

This study is the first of three companion studies investigating the extent of interagency activity among state agencies that deliver or fund employment services. The purpose of this study is to identify exemplary models and strategies used in interagency agreements that improve the delivery of supported employment services. Interagency agreements were most frequent with state agencies that specialized in or had substantial involvement with disability services, including the state mental health (MH) agency, the state mental retardation and developmental disabilities (MR/DD) agency, and the state department of education (DOE). These agreements were seen as having a more positive impact on employment opportunities than agreements with other types of agencies. Agencies that typically provided employment services to the general population were as likely or more likely to be participating in informal interagency activity than in written state level interagency agreements. The impact of these agreements on encouraging supported employment varied by type of agency. The MH and MR/DD agency agreements with the vocational rehabilitation (VR) agency were rated as having the highest impact, whereas the agreements between the One-Stop Career Centers and the VR agency were rated as having no impact, either positive or negative. Implications and suggestions for further research are discussed.

How Mental Health and Welfare to Work Interact: The Role of Hope, Sanctions, Engagement, and Support

This article describes some of the lessons learned in the implementation of the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) as it relates to people with psychiatric disabilities. It attempts to articulate some of the inherent difficulties faced in serving these individuals within the welfare system as well as how the established strengths of each system can inform the others efforts. The philosophy concerning work for clients of the welfare and mental health systems differ. Each system has developed separately, and they do not easily integrate their differing philosophies and goals. At the client level, this lack of consistency presents obvious coordination barriers. At the system level, examination of practice and the underlying philosophy of each provides incentives for cross-training and policy changes. Two case studies describe the identification of issues, opportunities, and challenges to providing Temporary Assistance for Needy Families (TANF) services to individuals with mental illness. These lessons can provide guidance to mental health systems as they strive to implement evidence-based employment practices and provide welfare entities with policy direction as a result of a widening knowledge base. Specific policy and program innovations in a county and in a state are highlighted to demonstrate these issues. Finally, the authors raise areas for further inquiry and reflection.

State-Level Interagency Agreements for Supported Employment of People With Disabilities:

Supported employment for people with disabilities has been a national policy since the late 1980s. Because its implementation usually requires the resources of at least 2 funding and service state agencies, written interagency agreements have been a formal strategy for policy implementation. This qualitative study analyzes interagency agreements for supported employment and the resulting collaborations of 6 states to identify the crucial characteristics that reinforce their utility and value. Commonalities and differences indicated three broad categories: outcomes, characteristics of the written agreements, and characteristics of the midlevel staff. Specific elements are discussed to improve creation and implementation of interagency agreements to expand supported employment for people with disabilities.

Strategic directions for transition to adulthood for patients with spina bifida

Although 85% of children with spina bifida survive to adulthood, there is little information and few proven service practices to guide their healthcare transition (HCT) to adult care. Our objective was to deepen our understanding of the factors that facilitate the HCT experience of these patients. Individual interviews with patients with spina bifida (n = 15) and their parents (n = 14) were performed to investigate levels of HCT readiness, attitudes, and practices. Data were analyzed for themes that mapped to theory-based constructs and synthesized as strategic directions for tailoring services. Patient age averaged 18.0 ± 2.8 yr (range 14-28 yr). Factors common to youth who were progressing toward HCT included individual factors: higher cog- nitive functioning, strong interest in being independent from parents; family factors: exposure to a parenting style that fostered independence; service factors: success negotiating primary care responsibilities with familiar adult healthcare providers. Factors common to youth who were not progressing towards HCT included individual factors: lower cognitive ability, impaired physical ability; family factors: lack of parent awareness of medical transition needs, and, service factors: strong dependence on pediatric providers for care coordination, and negative experiences with adult specialists perceived as not anticipating their needs. Tai- loring HCT for individuals with spina bifida may be best done in conjunction with HCT readiness assessments conducted at intervals throughout the HCT period. These assessments should include current and projected cognitive functioning; dyadic support to align patients and parents around HCT goals and care coordination tasks; and methods to familiarize patients and families with adult providers.

Developmental and Behavioral Disorders Grown Up

Transition is one of the newest and most interesting challenges that practitioners and researchers face in developmental and behavioral pediatrics. Significant investment in the health and welfare of children across multiple sectors has raised hopes and expectations not only for the survival and well-being of children with developmental and behavioral concerns but also for their potential as happy and productive adults. Transition is a verb, a noun, and an adjective used to name the action, the process, and the stage of life of people with disabilities. All of us journey through many transitions at many points in our lives: leaving school, getting a job, and progressing through life stages, demarcated by changes in our bodies, forming our own family, setting up a home, raising children or becoming aunts and uncles, and taking care of our parents. Youth with disabilities and behavioral disorders progress through the same stages as all other young people, but their progress can be influenced by their disability, their social roles, and the incentives and disincentives created by multiple private and public systems. Unfortunately, the current configuration of medical, social, educational, and vocational support systems sometimes limits rather than promotes young people’s future. Research and policy efforts are needed to meet the new and exciting issues that arise as youth with developmental and behavioral disorders grow up. This article lays out a conceptual frame about what transition means and how it affects the lives of young people with disabilities and behavioral disorders, their families, and their communities. It includes a number of generic concepts, practical considerations, and suggestions for practitioners and researchers interested in transition.

The vocational rehabilitation service system in Japan

Working-age Japanese with disabilities (ages 15–64) experience substantially lower employment rates compared to non-disabled Japanese, indicating a need for policy and programs that promote disability employment opportunities in competitive settings. Historically, the vocational rehabilitation (VR) service system in Japan has involved two government administrations – the Ministry of Labour and the Ministry of Health and Welfare – that, despite the merger in 2001, continue to focus on competitive and facility-based(sheltered) employment, respectively. In this paper, the authors provide an overview of the enabling legislation, key policies and measures, and personnel resources of the VR service system under labour. A cornerstone policy and practice issue is the engagement of a mandatory disability employment quota for public-sector and private-sector employers administered by public employment security offices (PESO), and public employment and rehabilitation services delivered through a network of PESO offices, local and regional vocational centers, vocational training centers and employment support centers for persons with disabilities. The authors conclude with a discussion of current issues and trends in rehabilitation in Japan and implications for future cross-national comparative research. The information presented in this paper is based on a literature review and key informant interviews conducted between May 2012 and June 2012.

Using the Delphi Method for Selecting Effective Rehabilitation Practices for Case Study Research: Methods, Challenges, and Solutions and Implications for Future Research

Purpose: We describe a modified Delphi method used to select effective state vocational rehabilitation agency practices to prioritize rehabilitation services for individuals with most significant disabilities within the context of Order of Selection, an area where there is little known and published. Specifically, we describe how we applied the Delphi method to case study selection, the methods challenges we faced, and how we addressed those issues. Implications for future research are also discussed. Method: We used a structured nomination process to identify potential practices. An expe.rt panel (N = 12) provided input on the development of indicators of effective rehabilitation practices and rated the nominated practices. Results: Selection of the practices for case study research was based on the ratings from the expert panel, including quantitative and qualitative feedback. Of the 10 practices considered by the panel, the 7 practices with the highest ratings were included in the sample. Conclusions: Using the collective expertise of panelists through a modified Delphi process to select the final case study sample was effective for this research. The panel provided an objective, group-level perspective on the merit of the practices as well as the fit with the goals of the case study.

Haitian, Chinese, Somali, Ethiopian, and Asian/Pacific Islander perspectives on research.

Researchers often approach community-based organizations as an access point to engage underserved populations in studies. In this article, 5 representatives of community organizations present their perspectives on the complexity of researcher-community partnerships and the nuances of engaging Haitian, Ethiopian, Somali, Chinese, and Asian/Pacific Islander populations in research. Each representative presents recommendations for gaining trust and understanding within their communities and challenge researchers to move beyond seeking knowledge and into social action that improves the lives of their constituents.