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Ensuring Quality and Accessible Care for Children with Disabilities and Complex Health and Educational Needs: Proceedings of a Workshop by
Children with disabilities and complex medical and educational needs present a special challenge for policy makers and practitioners. These children exhibit tremendous heterogeneity in their conditions and needs, requiring a varied array of services to meet those needs. Uneven public and professional awareness of their conditions and a research base marked by significant gaps have led to programs, practices, and policies that are inconsistent in quality and coverage. Parents often have to navigate and coordinate, largely on their own, a variety of social, medical, and educational support services, adding to the already daunting financial, logistical, and emotional challenges of raising children with special needs. The unmet needs of children with disabilities and complex medical and educational needs can cause great suffering for these children and for those who love and care for them. To examine how systems can be configured to meet the needs of children and families as they struggle with disabilities and complex health and educational needs, the National Academies of Sciences, Engineering, and Medicine held a workshop in December 2015. The goal of the workshop was to highlight the main barriers and promising solutions for improving care and outcome of children with complex medical and educational needs. Workshop participants examined prevention, care, service coordination, and other topics relevant to children with disabilities and complex health and educational needs, along with their families and caregivers. More broadly, the workshop seeks actionable understanding on key research questions for enhancing the evidence base; promoting and sustaining the quality, accessibility, and use of relevant programs and services; and informing relevant policy development and implementation. By engaging in dialogue to connect the prevention, treatment, and implementation sciences with settings where children are seen and cared for, the forum seeks to improve the lives of children by improving the systems that affect those children and their families. This publications summarizes the presentations and discussions from the workshop.
Call Number: Ebook
Publication Date: 2016
Ethnicity, Disability, and Chronic Illness by
This book brings together significant emerging work on ethnicity, disability, chronic illness and caring by leading researchers in the field. They explore the experience of minority ethnic people, and examine: the conceptualization of disability and chronic illness and the implications of particular definitions; the everyday living with a disability or chronic ill health; and the role of services in providing support to disabled people and carers.
Call Number: RA 485 .E854 2000 (Ekstrom)
Publication Date: 2000
Hearing Health Care for Adults: Priorities for Improving Access by
The loss of hearing - be it gradual or acute, mild or severe, present since birth or acquired in older age - can have significant effects on one's communication abilities, quality of life, social participation, and health. Despite this, many people with hearing loss do not seek or receive hearing health care. The reasons are numerous, complex, and often interconnected. For some, hearing health care is not affordable. For others, the appropriate services are difficult to access, or individuals do not know how or where to access them. Others may not want to deal with the stigma that they and society may associate with needing hearing health care and obtaining that care. Still others do not recognize they need hearing health care, as hearing loss is an invisible health condition that often worsens gradually over time. In the United States, an estimated 30 million individuals (12.7 percent of Americans ages 12 years or older) have hearing loss. Globally, hearing loss has been identified as the fifth leading cause of years lived with disability. Successful hearing health care enables individuals with hearing loss to have the freedom to communicate in their environments in ways that are culturally appropriate and that preserve their dignity and function. Hearing Health Care for Adults focuses on improving the accessibility and affordability of hearing health care for adults of all ages. This study examines the hearing health care system, with a focus on non-surgical technologies and services, and offers recommendations for improving access to, the affordability of, and the quality of hearing health care for adults of all ages.
Call Number: Ebook
Publication Date: 2016
Intellectual Disability and Social Inclusion: A Critical Review by
This book provides a unique insight into the challenges faced by people with learning disabilities trying to access mainstream health and social services and by the professionals who are trying to provide them. The combination of professional perspectives and viewpoints of people with learning disabilities themselves creates an authoritative explanation of why this group of people face the barriers they do. The contributors critique these barriers and also offer potential solutions to overcoming them. Personal reflections written by people with learning disablities on their experiences of accessing health and social care services Comprehensive coverage of policy in the four UK countries Comprehensive analysis by subject experts of practice in a range of areas, from acute health care through mental health to leisure and housing provision Accessible summaries at the end of each chapter including text for people with learning disablities
Call Number: LC4818 .I58 2009 (Ekstrom)
Publication Date: 2009
People Living With Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop by
Poor health literacy has many negative consequences for achieving the quadruple aim of better care, improving the health of the community and the population, providing affordable care, and improving the work life of health care providers, and those consequences disproportionately affect those individuals with disabilities and those who experience health disparities. To better understand how health literacy, health equity, and health disparities intersect for individuals living with disabilities, the Roundtable on the Promotion of Health Equity and the Elimination of Health Disparities and the Roundtable on Health Literacy jointly sponsored a workshop that was held on June 14, 2016, in Washington, DC. This publication summarizes the presentations and discussions from the workshop.
Call Number: Ebook
Publication Date: 2018
Barriers in Access to Healthcare for Women with Disabilities: A Systematic Review in Qualitative Studies
Matin BK, Williamson HJ, Karyani AK, Rezaei S, Soofi M, Soltani S. Barriers in access to healthcare for women with disabilities: A systematic review in qualitative studies. BMC Womens Health. 2021;21:44.
Health Disparities and Intellectual Disabilities: Lessons from Individuals with Down Syndrome
Vander Ploeg Booth K. Health disparities and intellectual disabilities: Lessons from individuals with Down syndrome. Dev Disabil Res Rev. 2011; 17(1):32-35. DOI: 10.1002/ddrr.136.
Health Outcome Disparities Among Subgroups of People with Disabilities: A Scoping Review
Rowland M, Peterson-Besse J, Dobbertin K, Walsh ES, Horner-Johnson W. Health outcome disparities among subgroups of people with disabilities: A scoping review. Disabil Health J. 2014;7(2):136-150.
Physicians' Perception of People With Disability and Their Health Care
Iezzoni LI, Rao SR, Ressalam J, Bolcic-Jankovic D, Agaronnik ND, Donelan K, Lagu T, Campbell EG. Physicians' perceptions of people with disability and their health care. Health Aff (Millwood). 2021;40(2):297-306.
Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults - United States, 2016
Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of disabilities and health care access by disability status and type among adults -- United States, 2016. MMWR Morbid Mortal Wkly Rep. 2018;67(32):882-887.