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Journal of Bioethical Inquiry Sep 2022A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by...
A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by Elizabeth Barnes, claims that physical and sensory disabilities by themselves do not make a person worse off overall-any negative impacts on welfare are due to social injustice. This article argues that Barnes's Value Neutral Model does not extend to intellectual disability. Intellectual disability is (1) intrinsically bad-by itself it makes a person worse off, apart from a non-accommodating environment; (2) universally bad-it lowers quality of life for every intellectually disabled person; and (3) globally bad-it reduces a person's overall well-being. While people with intellectual disabilities are functionally disadvantaged, this does not imply that they are morally inferior-lower quality of life does not mean lesser moral status. No clinical implications concerning disability-based selective abortion, denial of life-saving treatment, or rationing of scarce resources follow from the claim that intellectual disability is bad difference.
Topics: Abortion, Eugenic; Bioethics; Disabled Persons; Female; Humans; Intellectual Disability; Pregnancy; Quality of Life
PubMed: 35679004
DOI: 10.1007/s11673-022-10190-y -
International Journal of Environmental... Aug 2022This research aimed to map evidence about system supports and gaps for Australians with psychosocial disabilities and life-limiting diagnoses. A scoping review of... (Review)
Review
This research aimed to map evidence about system supports and gaps for Australians with psychosocial disabilities and life-limiting diagnoses. A scoping review of available policy documents, academic, and grey literature was completed to discover key characteristics of this concept and provide context around the phenomenon. Our focus was on Australia's National Disability Insurance Scheme (NDIS), a key reform providing support to the disability population nationally. No peer-reviewed or grey literature was retrieved on the phenomena. Therefore, three lines of enquiry were developed: experiences of NDIS participants living with psychosocial disabilities; the death, dying, and palliative care supports and experiences of NDIS participants of any disability type; and the experiences for people living with severe and persistent mental illness (SPMI) and life-limiting diagnoses. Five themes were identified: (1) the person; (2) advocacy; (3) informal supports; (4) formal supports; and (5) existing research. NDIS participants living with SPMI and their informal and formal support systems are still struggling to navigate the NDIS. While there are no specific publications about their end-of-life experiences, people with SPMI often experience poor end-of-life outcomes. Rigorous research into their death, dying, and palliative care experiences is needed to inform improved support to them, including their end-of-life care.
Topics: Australia; Chronic Disease; Disabled Persons; Humans; Insurance, Disability; Palliative Care; Terminal Care
PubMed: 36011776
DOI: 10.3390/ijerph191610144 -
Developmental Medicine and Child... Oct 2015
Topics: Disabled Persons; Human Rights; Humans; United States
PubMed: 26347353
DOI: 10.1111/dmcn.12877 -
Social Science & Medicine (1982) Jan 1994Building on prior conceptual schemes, this article presents a sociomedical model of disability, called The Disablement Process, that is especially useful for...
Building on prior conceptual schemes, this article presents a sociomedical model of disability, called The Disablement Process, that is especially useful for epidemiological and clinical research. The Disablement Process: (1) describes how chronic and acute conditions affect functioning in specific body systems, generic physical and mental actions, and activities of daily life, and (2) describes the personal and environmental factors that speed or slow disablement, namely, risk factors, interventions, and exacerbators. A main pathway that links Pathology, Impairments, Functional Limitations, and Disability is explicated. Disability is defined as difficulty doing activities in any domain of life (from hygiene to hobbies, errands to sleep) due to a health or physical problem. Feedback effects are included in the model to cover dysfunction spirals (pernicious loops of dysfunction) and secondary conditions (new pathology launched by a given disablement process). We distinguish intrinsic disability (without personal or equipment assistance) and actual disability (with such assistance), noting the scientific and political importance of measuring both. Disability is not a personal characteristic, but is instead a gap between personal capability and environmental demand. Survey researchers and clinicians tend to focus on personal capability, overlooking the efforts people commonly make to reduce demand by activity accommodations, environmental modifications, psychological coping, and external supports. We compare the disablement experiences of people who acquire chronic conditions early in life (lifelong disability) and those who acquire them in mid or late life (late-life disability). The Disablement Process can help inform research (the epidemiology of disability) and public health (prevention of disability) activities.
Topics: Activities of Daily Living; Disabled Persons; Female; Humans; Male; Models, Theoretical; Research
PubMed: 8146699
DOI: 10.1016/0277-9536(94)90294-1 -
Indian Journal of Ophthalmology Feb 2021The current practice for low vision management in India exclusively focuses on clinical aspects without much of the rehabilitation components. While making all efforts... (Review)
Review
The current practice for low vision management in India exclusively focuses on clinical aspects without much of the rehabilitation components. While making all efforts to improve independent living skills, daily living activities, and quality of life as a whole for people living visual disabilities, vision rehabilitation is an indispensable component. There is no single appropriate low vision and rehabilitation model implementable at health care institutions in the country to cover these fundamental aspects of a visually impaired individual. We did a literature review to know the existing practices of low vision and various disability models. The purpose of the review is to discern any pitfalls and shortcomings in managing visually disabled in India and to underpin the credibility and feasibility as well as suitability of the developed model. The review was done using search key terms low vision, current practices, visual disability, disability models, vision rehabilitation, and service delivery. Therefore, the article discusses the development of an inclusive low vision management model name as "Clinico-Social Model", which we consider the most appropriate for the best management of people with vision loss. The primary aim of this model is to provide both clinical and vision rehabilitation components of management for people with visual disabilities. Such an approach is likely to have the potential to improve the quality of life of people with vision loss and can provide practical guide to eye care managers across India. Given the specific context in the current practices of low vision in India, it is desirable to design a similar model to care for the visually disabled.
Topics: Disabled Persons; Humans; India; Quality of Life; Vision, Low; Visually Impaired Persons
PubMed: 33463601
DOI: 10.4103/ijo.IJO_236_20 -
American Journal of Public Health Jul 2017
Topics: Adult; Disabled Persons; Humans; Policy; Socioeconomic Factors
PubMed: 28590856
DOI: 10.2105/AJPH.2017.303859 -
Rehabilitation Psychology Feb 2020This article describes the initial factor exploration of disability identity and preliminary psychometric characteristics based on an adult self-report tool. Disability...
PURPOSE/OBJECTIVE
This article describes the initial factor exploration of disability identity and preliminary psychometric characteristics based on an adult self-report tool. Disability was defined broadly, and the sample included individuals with visible and/or hidden disabilities across many disability groups (i.e., physical, intellectual, learning, mental illness).
METHOD
Items were developed ( = 102) and a pilot measure was administered to a sample of adults with disabilities ( = 566). An exploratory factor analysis (EFA) using the mean and variance adjusted weighted least squares (WLSMV) estimator was conducted. The resulting items were sent to expert reviewers for evaluation.
RESULTS
Following the exploratory analyses, 37 items were retained that made up four factors: internal beliefs about own disability and the disability community, anger and frustration with disability experiences, adoption of disability community values, and contribution to the disability community. The pilot measure aligned well with the theoretical framework that guided its development.
DISCUSSION/CONCLUSION
This factor exploration is a contribution to a growing body of literature supporting, and investigating, disability identity development. This work presents a more comprehensive understanding of disability identity development. Armed with a better understanding, this will serve as a basis to inform future scale development and validation. After this validation work is completed, there is the potential to apply findings to tailor interventions and clinical work, so that psychologists and rehabilitation professionals may be better prepared to meet the developmental needs of disabled clients. (PsycINFO Database Record (c) 2020 APA, all rights reserved).
Topics: Adolescent; Adult; Aged; Attitude to Health; Disabled Persons; Factor Analysis, Statistical; Female; Humans; Male; Middle Aged; Psychometrics; Self Concept; Self Report; Young Adult
PubMed: 31944783
DOI: 10.1037/rep0000308 -
Predictors of access to healthcare professionals for people with intellectual disability in Ireland.Journal of Intellectual Disabilities :... Mar 2022The Irish National Intellectual Disability Database is updated annually and in 2017 contained records for nearly 22,000 persons aged 15 years and over. Information was... (Review)
Review
The Irish National Intellectual Disability Database is updated annually and in 2017 contained records for nearly 22,000 persons aged 15 years and over. Information was extracted on the contacts each person had with one of eight health professionals in the years 2007, 2012 and 2017. Over these years, there was an increase in the number of people in contact with any professional or with four and more professionals. Nevertheless, the people less likely to have contact were those with milder forms of intellectual disability, persons living with family carers or independently and those linked to smaller provider agencies. By contrast, the odds of people with more severe disability in residential settings were up to eight times greater for having contact with four or more different professionals. As demand for healthcare grows due to increased longevity and service models shift to the community, redeployment of existing professional resources will be needed along with a review of the skill mix.
Topics: Caregivers; Delivery of Health Care; Disabled Persons; Humans; Intellectual Disability; Ireland
PubMed: 32691664
DOI: 10.1177/1744629520937835 -
Journal of Intellectual Disabilities :... Sep 2022Person-centred planning (PCP) puts individuals with an intellectual disability at the centre of service and support planning, identifying how individuals wish to live...
Person-centred planning (PCP) puts individuals with an intellectual disability at the centre of service and support planning, identifying how individuals wish to live their lives and what is needed to make that possible. PCP has been identified as having the potential to facilitate improved social inclusion and community participation. A mixed-methods approach combined quantitative analyses with qualitative case studies of individuals with severe-profound intellectual disability to assess the impact of PCP on community participation for adults with an intellectual disability at a disability service in Dublin. We conclude that PCP may provide a good basis to plan community participation and, with the right supports in place, may provide opportunities for people with complex needs to improve their community participation. Supports including familiar staff and family are critical to the success of PCP for people with complex needs, and their absence may undermine the best intentions of PCP for this population.
Topics: Adult; Community Participation; Disabled Persons; Humans; Intellectual Disability; Qualitative Research
PubMed: 34219528
DOI: 10.1177/17446295211022125 -
Public Health Reports (Washington, D.C.... 2021Given the growth in national disability-associated health care expenditures (DAHE) and the changes in health insurance-specific DAHE distribution, updated estimates of...
OBJECTIVE
Given the growth in national disability-associated health care expenditures (DAHE) and the changes in health insurance-specific DAHE distribution, updated estimates of state-level DAHE are needed. The objective of this study was to update state-level estimates of DAHE.
METHODS
We combined data from the 2013-2015 Medical Expenditure Panel Survey, 2013-2015 Behavioral Risk Factor Surveillance System, and 2014 National Health Expenditure Accounts to calculate state-level DAHE for US adults in total, per adult, and per (adult) person with disability (PWD). We adjusted expenditures to 2017 prices and assessed changes in DAHE from 2003 to 2015.
RESULTS
In 2015, DAHE were $868 billion nationally (range, $1.4 billion in Wyoming to $102.8 billion in California) accounting for 36% of total health care expenditures (range, 29%-41%). From 2003 to 2015, total DAHE increased by 65% (range, 35%-125%). In 2015, DAHE per PWD were highest in the District of Columbia ($27 839) and lowest in Alabama ($12 603). From 2003 to 2015, per-PWD DAHE increased by 13% (range, -20% to 61%) and per-capita DAHE increased by 28% (range, 7%-84%). In 2015, Medicare DAHE per PWD ranged from $10 067 in Alaska to $18 768 in New Jersey. Medicaid DAHE per PWD ranged from $9825 in Nevada to $43 365 in the District of Columbia. Nonpublic-health insurer per-PWD DAHE ranged from $7641 in Arkansas to $18 796 in Alaska.
CONCLUSION
DAHE are substantial and vary by state. The public sector largely supports the health care costs of people with disabilities. State policy makers and other stakeholders can use these results to inform the development of public health programs that support and provide ongoing health care to people with disabilities.
Topics: Disabled Persons; Health Expenditures; Humans; Medicaid; Medicare; State Government; United States
PubMed: 33673781
DOI: 10.1177/0033354920979807