Disparities for persons with physical/mobile disabilities
The World Health Organization has played a key role in defining disability as it is understood today. Through the WHO's International Classification of Functioning, Disability and Health (ICF) Framework, a disability is defined as "an umbrella term, covering impairments, activity limitations, and participation restrictions." (2018) The WHO further defines impairments as problems "in body function or structure" and activity limitations as "a difficulty encountered by an individual in executing a task or action." (2018) It is important for future providers and health care advocates to understand each of these definitions, and what they entail, as they do not operate in isolation but in contingency with neurophysiological dynamics of the body and the social dynamics of different cultures.
This matters for providers because it communicates the need to see a person with a disability as a "whole person" with the same healthcare needs as anybody else. Those needs may be exacerbated and complicated by an impairment or limitation, which is why efforts to promote health for people with disabilities should not focus on dismantling an impairment, but rather on adapting existing healthcare spaces and technologies such that primary health needs can be met with as little discomfort as possible.
For instance, barriers that can be adapted (or eradicated) range from architectural and programmatic accessibility and compliance, adaptive medical/examination equipment, legible signage, ASL interpreters, trained personnel, healthcare costs, and physical location. (NCD.gov, 2009)
On this page, you will find information explaining how providers, policy makers, and community members can work towards readjusting these barriers.
NOTE: Healthcare inequities tied to disabilities are difficult to define because, at least in the United States, disability is a strikingly misunderstood term that is often co-opted as an umbrella for physical/mobile impairments, intellectual disabilities, developmental disabilities, mental illnesses, and behavioral/personality disorders. While all of these syndromes may involve lack of access (accessibility/inaccessibility being the primary means of defining disability/ability), they are not necessarily the same. Further, syndromes involving disabilities occur along spectrums in isolation and conjunction of one another. That said, for the purposes of this guide, physical/mobile impairments is contained on one page even though there are developmental and intellectual disabilities that involve physical/mobile impairment. Additionally, behavioral and mental health issues are included alongside developmental/intellectual disabilities and collapsed under the term cognitive disability.
Resources for persons with physical/mobile disabilities
Long-term health care reform must include the voices of people with disabilities...
"Despite federal laws that mandate equal access and communication in all healthcare settings for deaf people, consistent provision of quality interpreting in healthcare settings is still not a reality, as recognized by deaf people and American Sign Language (ASL)-English interpreters. The purpose of this study was to better understand the work of ASL interpreters employed in healthcare settings, which can then inform on training and credentialing of interpreters, with the ultimate aim of improving the quality of healthcare and communication access for deaf people."
Listed on the comprehensive community health site, Healthypeople.gov, this page is designed to help people with disabilities "Maximize health, prevent chronic disease, improve social and environmental living conditions, and promote full community participation, choice, health equity, and quality of life among individuals with disabilities of all ages."
The Disability Rights Education & Defense Fund (DREDF) is one of the most prominent advocacy groups pushing for increased disability rights. Their Healthcare Access portal conveys necessary information concerning Medicaid, the ACA, training and orientations for providers, and life stories told by people with disabilities.
This page, from the CDC's website, describes best practices for promoting physical activity and wellness for adults with disabilities. Per the CDC, "Adults with disabilities are three times more likely to have heart disease, stroke, diabetes, or cancer than adults without disabilities. Aerobic physical activity can help reduce the impact of these chronic diseases, yet nearly half of all adults with disabilities get no leisure time aerobic physical activity."
"This brief provides an overview of why physical accessibility of health care facilities is important for people with disabilities. It discusses the laws enacted to promote accessibility and provides examples of federal and state-level efforts to increase accessibility. Lastly, it offers suggestions for improving physical accessibility of health care facilities on a broader scale."
The NCD is an independent federal agency that makes policy recommendations and findings available to members of the public as well as the U.S. government.
This memorandum, from the NAD, provides background information as to the requirements, obligations, and responsibilities that health care providers have to accommodate patients and clients with a hearing impairment.
"VisionAware helps adults who are losing their sight continue to live full and independent lives by providing timely information, step-by-step daily living techniques, a directory of national and local services, and a supportive online community."
"WID addresses health care disparities for people with disabilities by working to improve access to quality, culturally competent health care, and services by conducting research, training health care professionals, and improving access to fitness, nutrition, and peer-support activities."
Disparities for persons with developmental / behavioral disabilities:
Similar to the mobile disabilities listed in the first tab, the presence of developmental disabilities as well as behavioral illnesses are evidenced by their interactions with other bodily processes, diagnostic standards, and societal determinants. Additionally, persons with developmental/behavioral disabilities historically have been excluded from healthcare and biomedical research in the United States.
For these reasons, disabilities can be difficult to identify and treat, since meaningful intervention requires changing cultural structures to become accessible and inclusive (Hatton & Emerson, 2015). However, accessible inclusivity is still possible, particularly as phenomenologies and epistemologies of disability begin to develop. In order to help aid this development, providers, researchers, and policy makers should also form an understanding of the health care disparities already prevalent for people who exhibit expansive differences in cognitive ability.
This page provides broad information explaining how providers, researchers, policy makers, and community members can build equity while learning how bodily ability, mental health, and social structures intersect to inform health care disparities affected people with cognitive disabilities.
NOTE: Healthcare inequities tied to disabilities are difficult to define because, at least in the United States, disability is a strikingly misunderstood term that is often co-opted as an umbrella for physical/mobile impairments, intellectual disabilities, developmental disabilities, mental illnesses, and behavioral/personality disorders. While all of these syndromes may involve lack of access (accessibility/inaccessibility being the primary means of defining disability/ability), they are not necessarily the same. Further, syndromes involving disabilities occur along spectrums in isolation and conjunction of one another. That said, for the purposes of this guide, physical/mobile impairments is contained on one page even though there are developmental and intellectual disabilities that involve physical/mobile impairment. Additionally, behavioral and mental health issues are included alongside developmental/intellectual disabilities and collapsed under the term cognitive disability.
Resources for persons with physical/mobile disabilities
The Arc is a well-known community leadership organization that lobbies for increased awareness and rights towards persons with intellectual and developmental disabilities. Involvement does require a membership, but the site itself is a useful resource, especially the "Programs & Services" page.
"Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. CDC is committed to continuing to provide essential data on ASD, search for factors that put children at risk for ASD and possible causes, and develop resources that help identify children with ASD as early as possible."
This series, published by the Autism Society, provides insight into autism as it relates to various ends of the lifespan, beginning in infancy and lasting through late adulthood.
The Institute of Mental Health is one of the most well-regarded sources for information relating to mental illnesses. While intellectual and developmental disabilities are not mental illnesses themselves, they often are co-morbid, which adds another dimension to the clinical experiences of persons who do have a disability.
A wide-ranging subsite of CDC.gov. Includes overviews of disabilities, data/statistics, disability inclusion, healthy living inforamtion, emergency preparedness, and information for specific groups among other resources.
This toolkit, produced by Vanderbilt University's Kennedy Center for Excellence in Developmental Disabilities, provides health care professionals with information relating to general health needs, physical health, and mental well being.
This 2011 paper from the American Association on Health & Disability breaks down the various barriers to health for people with disabilities along intersectional lines which include race, gender, age, and geography.
This program, sponsored by the NDSS, focuses on literacy and advocacy with persons diagnosed with Down syndrome. It is a useful source for health care professionals and policy makers who want to focus on physical health.
A 2015 paper that explores health disparities experienced by persons with disabilities. The authors identify "population-level differences in health outcomes that are related to a history of wide-ranging disadvantages, which are avoidable and not primarily caused by the underlying disability".
This active Tumblr site is run by persons involved in disability activism, working to mitigate implicit, ableist practices inherent in medical and other complex systems.
Already Doing It by Michael GillWhy is the sexuality of people with intellectual disabilities often deemed "risky" or "inappropriate" by teachers, parents, support staff, medical professionals, judges, and the media? Should sexual citizenship depend on IQ? Confronting such questions head-on, "Already Doing It" exposes the "sexual ableism" that denies the reality of individuals who, despite the restrictions they face, actively make decisions about their sexual lives. Tracing the history of efforts in the United States to limit the sexual freedoms of such persons⎯using methods such as forced sterilization, invasive birth control, and gender-segregated living arrangements--Michael Gill demonstrates that these widespread practices stemmed from dominant views of disabled sexuality, not least the notion that intellectually disabled women are excessively sexual and fertile while their male counterparts are sexually predatory. Analyzing legal discourses, sex education materials, and news stories going back to the 1970s, he shows, for example, that the intense focus on "stranger danger" in sex education for intellectually disabled individuals disregards their ability to independently choose activities and sexual partners--including nonheterosexual ones, who are frequently treated with heightened suspicion. He also examines ethical issues surrounding masturbation training that aims to regulate individuals' sexual lives, challenges the perception that those whose sexuality is controlled (or rejected) should not reproduce, and proposes recognition of the right to become parents for adults with intellectual disabilities. A powerfully argued call for sexual and reproductive justice for people with intellectual disabilities, "Already Doing It "urges a shift away from the compulsion to manage "deviance" (better known today as harm reduction) because the right to pleasure and intellectual disability are not mutually exclusive. In so doing, it represents a vital new contribution to the ongoing debate over who, in the United States, should be allowed to have sex, reproduce, marry, and raise children.
Publication Date: 2015
Assistive Technology for Visually Impaired and Blind People by Marion A. Hersh (Editor); Michael A. Johnson (Editor); David KeatingEqual accessibility to public places and services is now required by law in many countries. For the vision-impaired, specialised technology often can provide a fuller enjoyment of the facilities of society, from large scale meetings and public entertainments to reading a book or making music. This volume explores the engineering and design principles and techniques used in assistive technology for blind and vision-impaired people. This book maintains the currency of knowledge for engineers and health workers who develop devices and services for people with sight loss, and is an excellent source of reference for students of assistive technology and rehabilitation.
Publication Date: 2010
Caring for the Physical and Mental Health of People with Learning Disabilities by David Perry; Geoff Marston; James Eva; Louise Hammond; Sherryl GaskellPeople with learning disabilities are at greater risk of physical and psychiatric illness than the population at large, but their health needs are often not adequately supported. This book is a practical guide for those caring for people with learning disabilities living in community settings. It is designed to help the carers to better understand what the service users' health needs may be, how to recognise problems, and how to meet their needs. Chapter topics include physical health issues such as epilepsy, common health problems and diet and well-being; mental health issues such as dementia, depression, bipolar disorder and anxiety; and information related to common issues such as sleep and swallowing problems. The book also includes advice on screening programmes and health checks. Written in an accessible and straightforward style, this book will be an invaluable guide for anyone caring for someone with a learning disability, including social carers, health facilitators, community nurses and family carers.
Publication Date: 2010
Handbook of Autism and Pervasive Developmental Disorders, Assessment, Interventions, Policy, the Future by Fred R. Volkmar; Rhea Paul; Kevin A. Pelphrey; Sally J. RogersThe latest and most comprehensive resource on autism and related disorders Since the original edition was first published more than a quarter-century ago, The Handbook of Autism and Pervasive Developmental Disorders has been the most influential reference work in the field. Volume 2 of this comprehensive work includes a wealth of information from the experts in their respective specialities within the larger field of autism studies: Assessment, Interventions, and Social Policy Perspectives. Within the three sections found in Volume 2, readers will find in-depth treatment of: Screening for autism in young children; diagnostic instruments in autism spectrum disorders (ASD); clinical evaluation in multidisciplinary settings; assessing communications in ASD; and behavioral assessment of individuals with autism, including current practice and future directions Interventions for infants and toddlers at risk; comprehensive treatment models for children and youth with ASD; targeted interventions for social communication symptoms in preschoolers with ASD; augmentative and alternative communication; interventions for challenging behaviors; supporting mainstream educational success; supporting inclusion education; promoting recreational engagement in children with ASD; social skills interventions; and employment and related services for adults with ASD Supporting adult independence in the community for individuals with high functioning ASD; supporting parents, siblings, and grandparents of people with ASD; and evidence-based psychosocial interventions for individuals with ASD Special topic coverage such as autism across cultures; autism in the courtroom; alternative treatments; teacher and professional training guidelines; economic aspects of autism; and consideration of alternative treatments The new edition includes the relevant updates to help readers stay abreast of the state of this rapidly evolving field and gives them a guide to separate the wheat from the chaff as information about autism proliferates.
A Doody's Core Title 2012 This new illustrated guide to assistive technologies and devices chronicles the use of AT/AD - technology used by individuals with disabilities to perform functions that might otherwise be difficult or impossible. This book empowers people to use assistive technologies to overcome some of their physical or mental limitations and have a more equal playing field. It includes real-life examples about how people with disabilities are using assistive technology (AT) to assist them in daily tasks, and discusses emotional issues related to AT/AD.
Intellectual Disability by Heather Keith; Kenneth D. KeithIntellectual Disability: Ethics, Dehumanization, and a New Moral Community presents an interdisciplinary exploration of the roots and evolution of the dehumanization of people with intellectual disabilities. Examines the roots of disability ethics from a psychological, philosophical, and educational perspective Presents a coherent, sustained moral perspective in examining the historical dehumanization of people with diminished cognitive abilities Includes a series of narratives and case descriptions to illustrate arguments Reveals the importance of an interdisciplinary understanding of the social construction of intellectual disability
Publication Date: 2013
Learning Disability and Other Intellectual Impairments by Louise Clark (Editor); Peter Griffiths (Editor)Learning Disability and other Intellectual Impairments is the first book of its kind to explore the similarities and parallels between the needs of people with various types of intellectual impairments as they encounter health services. It not only looks at the shared issues from a bio-psycho-social perspective, but also discusses the transferable skills that a practitioner can develop working across these groups. It identifies the key skills and knowledge that professionals need in order to work with intellectually impaired patients whether they are in the hospital or at home. Rather than just focusing on people with learning disabilities, this text attempts to break down barriers and look at some of the issues associated with care and treatment of people who have intellectual impairment for a variety of reasons, including acquired brain injury, dementia and long-term mental health issues where cognition has been affected. Learning Disability and other Intellectual Impairments is suitable for health care practitioners at all levels who work with people who have intellectual impairments in their work and who wish to further develop their skills and knowledge to care for this neglected client group.
Publication Date: 2008
Mental Health Services for Adults with Intellectual Disability by Nick Bouras (Editor); Geraldine Holt (Editor)This book considers how mental health services have evolved over the past three decades to meet the needs of people with intellectual disability, focusing on the ways that theories and policies have been applied to clinical practice. Nick Bouras and Geraldine Holt both have extensive experience in developing and running mental health services and bring together international contributors all with longstanding expertise in the fields of mental health and intellectual disability. They present the current evidence based practice as how people with intellectual disability can be best cared for in clinical settings. The book embraces a foreword by Professor David Goldberg and is divided into three sections: development of specialist mental health services, clinical practice, and training as an integrated component of service delivery. Chapters cover topics including: the association between psychopathology and intellectual disability international perspectives neuroimaging and genetic syndromes training professionals, families and support workers. Mental Health Services for Adults with Intellectual Disabilityprovides an overview of the many improvements that have been made in services for people with intellectual disability, as well as examining the shortcomings of the services provided. It offers strategies and solutions for the wide array of interdisciplinary professionals who want to develop the range of resources on offer for people with intellectual disability.
Psychiatry of Intellectual Disability by Julie P. Gentile (Editor); Paulette Marie Gillig (Editor)Patients with intellectual disability (ID) can benefit from the full range of mental health services. To ensure that psychiatric assessment, diagnosis and treatment interventions are relevant and effective; individuals with ID should be evaluated and treated within the context of their developmental framework. Behavior should be viewed as a form of communication. Individuals with ID often present with behavioral symptoms complicated by limited expressive language skills and undiagnosed medical conditions. Many training programs do not include focused study of individuals with ID, despite the fact that patients with ID will be seen by virtually every mental health practitioner. In this book, the authors present a framework for competent assessment and treatment of psychiatric disorders in individuals with ID. Psychiatry of Intellectual Disability is a resource guide for psychiatrists, nurse practitioners, and other prescribers treating patients with ID. It is a supplemental text for psychiatry residents, medical students, psychology graduate students, psychotherapists, counselors, social workers, behavior support specialists and nurses. To assist the practicing clinician the book includes: Clinical vignettes Clinical pearls Charts for quick reference Issues concerning medications and poly-pharmacy Altered diagnostic criteria specific for use with individuals with ID There are no evidence-based principles dedicated to psychotropic medication use in ID, but consensus guidelines address the high prevalence of poly-pharmacy. Altered diagnostic criteria have been published which accommodate less self-report and incorporate collateral information; this book reviews the literature on psychotropic medications, consensus guidelines, and population-specific diagnostic criteria sets. Psychiatry of Intellectual Disability also includes: Interviewing techniques and assessment tips for all levels of communicative ability as well as for nonverbal individuals Assessment of aggression to determine etiology and formulate a treatment plan Overview of types of psychotherapy and suggested alterations for each to increase efficacy Relevant legal issues for caregivers and treatment providers The detective work involved in mental health assessment of individuals with ID is challenging yet rewarding. The highest quality mental health treatment limits hospital days, improves quality of life and often allows individuals to live in the least restrictive environments. Psychiatry of Intellectual Disability is a must have resource for clinicians treating the ID population.