Health

International News

Disability activists online and the worlds they're helping to build. “A social media response to a massive public health failure” (Feb, Medicinal Media)

Health-worker education for disability inclusion in health:

“in many settings, the competence and understanding of reasonable adjustments among health workers are inadequate to provide the same quality of care to people with disabilities as to individuals without disabilities.” (2023, The Lancet)

Report on the Assessment of National Eye Health Strategies on Inclusiveness and Health Equity for Persons with Disabilities (2023, CBM Global)

Do people with disabilities experience disparities in cancer care? A systematic review:

“Compared to people without disabilities, PwD had worse cancer outcomes, in terms of poorer survival and higher overall and cancer-specific mortality. There was also evidence that PwD received poorer quality cancer care, including lower access to state-of-the-art care or curative-intent therapies, treatment delays, undertreatment or excessively invasive treatment, worse access to in-hospital services, less specialist healthcare utilization, less access to pain medications and inadequate end-of-life quality of care.” (2023, PLoS One)

Advocacy Toolkit for Inclusive Eye Health (2023, CBM Global)

Reimagining Universal Health Coverage to Leave No One Behind. Notes from “the first-ever disability- and assistive technology-focused session at the World Health Summit”. (2023, Healthy DEvelopments)

Lack of disability data impedes health care equity. (2023, McKinsey Health Institute and Missing Billion)

IDDC reaction to the Declaration on Universal Health Coverage “A new Political Declaration on Universal Health Coverage that marks some steps forward, but demonstrates the weaknesses of global decision-making in delivering on health equity”. (2023)

What role can community health workers play in disability services in LMICs? Evidence brief. “CHWs can be utilized for education, screening and care for common disabilities and are ideally placed to reach these harder to access populations. In addition, evidence exists for effective disability service provision by CHWs for a range of tasks.” (2023, Disability Evidence Portal)

Impacts of the COVID-19 pandemic on access to healthcare among people with disabilities: evidence from six low- and middle-income countries. “Key barriers to accessing healthcare during the pandemic included changes in availability of services due to systems restructuring, difficulty affording care due to the economic impacts of the pandemic, fear of contracting coronavirus, and a lack of human support to enable care-seeking.” (2023, International Journal for Equity in Health)

New dialogues between medical sociology and disability studies
Journal special issue (2023, Sociology of Health & Illness)

All-Inclusive Healthcare Increasing accessibility is key to ensuring that all people, including those who are blind or visually impaired, are not excluded from health services (2023, The Ophthalmologist)

How can mHealth be used to improve the health and functioning of people with disabilities? Evidence brief on healthcare provided by mobile phones. (2023, Disability Evidence Portal)

Disability is central to discrimination in health “Overlooking disability issues is not just a question of omitting one diversity marker among many. Disability brings with it a range of embodied challenges, with implications regarding functional limitations, compromised access to health care and information, and resultant health outcomes.” (2023, The Lancet)

Universal Health Coverage for All Ages An agenda for action. (2023, Age International)

WHO guideline for for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions. (2023, WHO)

Evidence brief on how to remove access barriers to healthcare for people with psychosocial, developmental, and neurological disabilities. (2023, Disability Evidence Portal)

The doctors selling bogus treatments to people facing blindness. (2023, BBC)

Impact of the COVID-19 pandemic on people with disabilities and implications for health services research. (2023, Journal of Health Services Research and Policy)

HearX hearing care by community health workers using digital technologies. (2023, AT2030)

Achieving Universal Health Coverage fit for an ageing world. (2023, HelpAge)

Healthcare has to be healed Debrief feature on the impacts of health inequities and how we take revenge. (2023, Disability Debrief)

Access to National Sign Languages as a Health Need. A position paper. (2023, WFD)

A Picture of Health: Jo Spence, a Politics of Disability and Illness. A project featuring different artistic explorations. (2023, A Picture of Health)

Global report on health equity for persons with disabilities. See also the press release. “Health systems should be alleviating the challenges that people with disabilities face, not adding to them.” (2022, WHO)

Reimagining health systems for a billion people with disabilities. (2022, BMZ)

Disability-Inclusive Health Care Systems: Technical Note for World Bank Task Teams. “The guide provides the rationale for disability inclusion, tips for engaging in dialogue, information and examples on disability-inclusive practices and operations, and specific guidance on integrating disability into health service programming and delivery supported by the World Bank.” (2022, World Bank)

Promoting equity in health emergencies through health systems strengthening: “Lessons learned relating to disability inclusion in the COVID-19 pandemic can inform health systems strengthening in recovery efforts, addressing underlying barriers to access and inclusion, and in turn improving preparedness for future health emergencies.” (2022, International Journal for Equity in Health)

Evidence brief on addressing intersectional stigma for people living with disability and chronic infectious diseases. (2022, Disability Evidence Portal)

World Alzheimer Report 2022 Life after diagnosis: Navigating treatment, care and support:

“A surprising number of people living with dementia indicated they had not been offered post-diagnosis support beyond the initial information provided immediately after their diagnosis. In lower-income countries, 45% indicated they had not been offered support, while 55% reported they had. In higher-income countries, although 63% reported having been offered post-diagnosis support, 37% indicated they were offered nothing” (2022, ADI)

Reimagining Health Systems that expect, accept and connect 1 billion people with disabilities. “People with disabilities have 2.4-fold higher mortality rates than those without disabilities and are missing 10 to 20 years of life expectancy.” (2022, Missing Billion)

A report on access and equity in the Future of Virtual Health and Care features discussion and practices of inclusion of persons with disabilities. (2022, Broadband Commission for Sustainable Development)

A focus on disability is necessary to achieve HIV epidemic control:

“People with disabilities often have lower levels of access and adherence to HIV treatment due to barriers with regard to the provision of services (eg, inadequate knowledge among health-care workers and inaccessibility of facilities) and the demand for services (eg, absence of autonomy and awareness of people with disabilities of HIV care needs and service availability). ” (2022, The Lancet HIV)

A selection of videos on rehabilitation from around the world shortlisted for WHO's Health For All Film Festival (2022, WHO)

Disrupting Global Health: From Allyship To Collective Liberation:

“We must understand that many disabled people across the world have experienced public health and biomedicine in violent and oppressive ways; and that that history continues to resonate today. So, we must engage meaningfully with (involve them as stakeholders) disabled people’s voices, opinions, activism, and advocacy,” (2022, Forbes)

Chronically ill face life-or-death challenges due to pandemic shortages. “Millions of chronically ill people struggle to get medical supplies amid global shortages.” (2022, Washington Post)

Lessons from Long COVID: working with patients to design better research:

"Scientific research sets the medical and care agenda for patients with chronic illnesses. It also influences the wider social and economic agenda for people living with these conditions. The more socially and economically disadvantaged people are, the greater the potential influence on their lives. This is a huge responsibility that researchers are only able to fulfil with sharp awareness of the power structures involved in conducting research, with humility and with an openness to see things from different perspectives." (2022, Nature)

Inclusive Medicine and Medical Education: Increasing the Number of Clinicians With Disabilities "Their experiences as patients position them to provide recommendations for promoting patient-centered care and reshaping healthcare systems and delivery processes to increase accessibility and improve patient outcomes." (2022, Global Public Health)

Evidence brief on what works to improve healthcare professionals’ competency on disability: “Negative healthcare professionals’ attitudes and stigma towards people with disabilities remain a major barrier in receiving equitable healthcare services. ” (2022, Disability Evidence Portal)

WHO-ITU global standard for accessibility of telehealth services: “very often telehealth platforms are not compatible with devices such as screen readers that facilitate people with vision impairment to access information, or the lack of captioning or volume control in video conferencing impedes persons who are deaf or hard of hearing to interact with health professionals virtually”. (2022, WHO)

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Africa

Taking steps towards disability inclusive (sexual and reproductive) health: exploring lessons from programming in Ethiopia, Mozambique and Rwanda. One disability focal point in a health centre in Ethiopia said:

“Once we received a deaf woman who came to the center for help. We understood that she was raped and was pregnant, and as showed the test she was HIV positive. Yet, none of us could explain it to her and inform her on necessary treatment. So she left and never came again. We all remember this lady, so we are committed to learn sign language to be able to address such cases next time.” (link to pdf, 2022, See You Foundation)

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Egypt

Opening of addiction treatment center that provides services for people with disabilities. (In Arabic, 2023, Cairo24)

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Kenya

Kenya is yet to meet the maternity needs of women with disabilities tv news report on Senate discussion of a report. (2023, KTN News)

Healthcare barriers that women with disabilities face (2023, Nation)

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Malawi

‘We live in fear because of our skin’: Malawians with albinism demand action to reduce cancer risk. (2023, the Guardian)

Mismanagement of public resources affecting healthcare of people with disability (2022, Malawi24)

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Nigeria

Report on barriers to healthcare access for Deaf Nigerian Women and Girls during Emergencies. (2022, WFD)

Healthcare Services Should be Inclusive of Persons with Disabilities: Here is How. (2022, Nigeria Health Watch)

Albinism group calls for reinstatement of free skin cancer treatment. (2022, Radio Nigeria)

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Senegal

A quest for dignified health care for women with disabilities: “a woman with disability talks about her experience giving birth and how it drives her activism today.” (2022, WHO)

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South Africa

Women with disabilities need better access to maternal, sexual and reproductive health services “Focusing specifically on their experiences of maternal health services, disabled women in the same study reported that nurses expressed visible surprise, and sometimes anger, that these women were sexually active.” (2023, Daily Maverick)

Non-use of healthcare services among persons with mobility impairments in Cofimvaba. Challenges includes “inaccessible roads, geographic inaccessibility, financial accessibility and indirect cost of care, having little or not many health problems, physical infrastructure difficulties within facilities, and attitudinal barriers.” (2023, African Journal of Disability)

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Uganda

Hospital and a home: Uganda shelters offer a lifeline to cancer patients. (2022, the Guardian)

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Zimbabwe

A path toward disability-inclusive health in Zimbabwe Part 2: A qualitative study on the national response to COVID-19 “People with disabilities demonstrated good awareness of COVID-19 mitigation strategies, but faced difficulties accessing COVID-19 information and health services. Challenges to the implementation of COVID-19 guidelines related to a person’s functional impairment and financial ability to do so. A key supply-side constraint was the perceived de-prioritisation of rehabilitation services. Further restrictions on access to health services and rehabilitation decreased an individual’s functional ability and exacerbated pre-existing conditions.” (2022, African Journal of Disability)

A path toward disability-inclusive health in Zimbabwe

“Inclusion was facilitated by clinic staff support of people with disabilities’ access to medication through referral to mission hospitals and private clinics, and the lobbying of organisations of people with disabilities.” (2022, African Journal of Disability)

Should disability-inclusive health be a priority in low-income countries? This paper proposed four complementary arguments why it is important to focus on people with disabilities. They include a “a growing rationale that disability-inclusive health systems will work better for all“ and “that they will create cost savings“. (2022, Global Health Action)

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Bangladesh

“We bear it and accept our fate”: Gorgeous illustrations and perceptions of healthcare access from people with disabilities in Cox’s Bazar. (2022, Relief Web)

Government launch of health insurance for persons with (some?) disabilities. (2022, Asia News Network) Also on the daily star.

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India

Exclusion of questions on disability data from the upcoming National Family Health Survey. “In a plea challenging the exclusion of disability-related questions from the sixth instalment of the National Family Health Survey (NFHS), the Calcutta High Court has issued notice to the respondents to file an affidavit to satisfy the prayers raised by the petitioners against the exclusion.” (2023, The Leaflet)

Power of touch: how blind women are helping detect breast cancer in India. (2023, the Guardian)

‘Hell on earth’: India’s taboos around women’s pain leave endometriosis sufferers in agony. (2023, the Guardian)

As Covid Flares Again, India’s Disabled, Serviced By Quacks Or Not At All, Struggle To Access Healthcare and vaccinations. (2023, Article 14)

A disability-inclusive healthcare delivery system is the need of the hour (2023, Times of India)

Insurers Are Denying Health Cover For Intellectual, Developmental Disabilities. “Despite clear guidelines, insurance companies in India exclude those with intellectual and developmental disabilities from coverage”. Includes insurers denying care after the non-disclosure of conditions often unrelated to the medical need. (2023, BehanBox)

High Court rules that People with disabilities are entitled to health insurance. (2022, Times of India)

Can a Blind Doctor Become a Psychiatrist? discussion of a case that has reached the Supreme Court. (2022, The Wire)

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Indonesia

Interview with Luthfi Azizatunnisa studying for her phd. (2023, Missing Billion)

Healthcare Ensured short video feature on accessing universal healthcare. (2022, Disability Justice Project)

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Jordan

Health and reproductive services are not available to women with disabilities report of a study. (In Arabic, Jan, Mena FN)

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Maldives

Disability and the achievement of Universal Health Coverage (2022, Plos One)

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South Korea

Effects of disability-related limitations in daily living on unmet needs: a longitudinal-study. “Limitations in daily life due to disability increase the risk of having unmet [health] needs, an effect that is significantly more pronounced in men.” (Feb, BMC Public Health)

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Europe

We have a duty to promote disability inclusive refugee responses to achieve the highest attainable standard of health in the European region. (2023, The BMJ)

Denied the right to health: persons with disabilities have more difficulty accessing healthcare. (2023, European Economic and Social Committee)

EDF position paper Recommendations on cancer screening and treatment. "Unfortunately, the mention of persons with disabilities in EU policies does not translate into concrete actions to ensure their equal access to cancer screening and care, and to address the pre-existing inequalities and factors putting them at higher risk of cancer or inadequate care." (2022, EDF)

Policy brief on disability-inclusive health systems Highlights greater risk factors in health, limited service delivery and poor health outcomes. (2021, WHO)

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Finland

Young adults with severe physical disabilities Negative public health care experiences after their health care transition in Finland (2023, Alter)

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Germany

Demands for more inclusion in the health and care system (In German, 2023, EU-Schwerbehinderung)

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Ireland

Ireland places disability and rehabilitation at the heart of its health system reform (2022, WHO Europe)

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Norway

An Agent-Based Simulation Model of Epidemic Spread in a Residential School. “An agent-based model of a school for deaf children was developed from Norwegian archival sources and 1918 influenza pandemic data to test impacts of non-pharmaceutical interventions. Results show differences in the timing and pattern of spread based on whether the first case is a student or staff member, while epidemics are smaller with more student bedrooms or a hospital ward.” (2023, Scandinavian Journal of Disability Research)

Balancing on a knife-edge: Experiences of older patients with acquired deafblindness when receiving existential care. "The patients can experience empowerment through the maintenance of trust and communion. However, if met with an overprotecting or neglecting attitude, older patients with acquired deafblindness can feel disempowered." (2022, Nordisk Sygeplejeforskning)

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United Kingdom

Wheelchairs and weight: 'I haven't been able to weigh myself for 22 years'. (2023, BBC)

A review of advocacy “This report covers in depth research about advocacy for people with a learning disability and autistic people who are inpatients in mental health, learning disability or autism specialist hospitals.” (2023, NDTI)

Thousands with learning disabilities trapped in hospital, some for years “because of a lack of psychological support and overly complicated treatment systems” (2023, the Guardian)

National Health Service crisis: Why are disabled people disproportionately affected? (2023, BBC)

Will the NHS Care for Me? feature by a disabled person on why people with a learning disability are more than twice as likely to die from avoidable causes than the rest of the population. (2022, BBC)

A study on avoidable mortality in children/young people with intellectual disabilities. “Children with intellectual disabilities had significantly higher rates of all-cause, avoidable, treatable and preventable mortality than their peers. The largest differences were for treatable mortality, particularly at ages 5–9 years. Interventions to improve healthcare to reduce treatable mortality should be a priority for children/young people with intellectual disabilities.” (2022, BMJ Open)

Fractured, fighting, fixed: my personal experiences in hospital as a base to reflect on why medical systems struggle with inclusion. (2022, Disability Debrief)

Recognising lived experience is essential to empowering disabled patients. (2022, BMJ)

Warning over early deaths of learning disabled: “adults with a learning disability were twice as likely to die from preventable illnesses.” (2022, BBC)

A BBC show Ellie Simmonds: A World Without Dwarfism?

“A pioneering drug is coming on the market that promises to make children with achondroplasia - Ellie’s form of dwarfism - grow closer to average height. A genetic condition, achondroplasia is the most common type of dwarfism in the UK, and the new treatment raises the question: if cutting-edge medicine can stop disability in its tracks, should we use it?” (2022, BBC)

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Canada

Dismantling systemic ableism in health research “An unheralded accessibility plan from the Canadian Institutes of Health Research is a step toward wider awareness of entrenched disability barriers.” (2023, Policy Options)

Healthcare inclusion and Indigenous people (2023, Abilities Canada)

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Guatemala

Healthcare Stakeholders’ Perspectives on Challenges in the Provision of Quality Primary Healthcare for People with Disabilities in Three Regions of Guatemala: A Qualitative Study:

‘What stood out in this study, however, were two sentiments expressed by healthcare providers: one, the practitioners appeared to feel the necessity for separate spaces and specially trained staff, with a particular focus on how to interact with people with disabilities; and two, the need for “empathy” in order to provide quality primary care services to people with disabilities.’ (2023, IJERPH)

How do people with disabilities make healthcare decisions? A qualitative study focusing on use of primary healthcare services in three regions. (2023)

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United States

House Of Representatives Passes Bill To Ban Use Of QALYs In Federally Funded Healthcare Programs. “It’s unconscionable that a healthcare bureaucracy would so callously determine that someone’s life is worth less.” (Feb, Forbes)

Aspiring to Disability Consciousness in Health Professions Training “Future clinicians must recognize disability as an aspect of diversity, express respect for disabled patients, and demonstrate flexibility about how to care for disabled patients’ needs. These skills are currently undervalued in medical training, specifically. ” (Jan, AMA Journal of Ethics)

U.S. medical schools aren’t teaching future doctors about 7.4 million of their patients. (2023, Stat)

Listening to Black Californians with Disabilities on healthcare experiences. (2023, California Health Care Foundation)

Why This Doctor Is Fighting for Her Patients’ Pain to Be Taken More Seriously “After her cancer diagnosis, Diana Cejas better understood ableism in the medical field. Now, she's fighting against it.” (2023, Teen Vogue)

UnitedHealth uses AI model with 90% error rate to deny care, lawsuit alleges “For the largest health insurer in the US, AI's error rate is like a feature, not a bug.” (2023, Ars Technica)

National Institutes of Health designates people with disabilities as a population with health disparities “Designation, new research program and update to NIH mission are actions to ensure inclusion of people with disabilities.” (2023, National Institutes Of Health) See comment in the Washington Post.

Inside the Private Group Where Parents Give Ivermectin to Kids With Autism “experts have repeatedly said is designed only for large animals and is so concentrated that it can be toxic when ingested by humans.” (2023, Vice)

Denied by AI: How Medicare Advantage plans use algorithms to cut off care for seniors in need. (2023, Stat)

People With Disabilities Deserve Better Health Care. We All Do. (2023, Undark)

Why addiction should be classified as a disability. “How Treating Addiction as a Disability Could Transform Treatment” (2023, Slate)

The disability rights fight intersecting the drug pricing debate. Discussing a bill to ban use of Quality-Adjusted Life Years. (2023, Axios Pro)

National Institutes of Health advances landmark recommendations on disability inclusion and anti-ableism. (2023, Statnews)

Sickle Cell Cure Brings Mix of Anxiety and Hope (2023, New York Times)

‘Why am I having to explain this?’: Seven stories of barriers to reproductive care for those with disabilities. (2023, StatNews)

Autism research at the crossroads “The power struggle between researchers, autistic self-advocates and parents is threatening progress across the field.” (2023, Spectrum)

Blind people still get medical bills they can't read. (2022, NPR)

Revenge of the gaslit patients: Now, as scientists, they’re tackling Ehlers-Danlos syndromes (2022, Stat News)

Disability Dialogues a book on the “Advocacy, Science, and Prestige in Postwar Clinical Professions” (2022, Johns Hopkins University Press)

Doctors Are Failing Patients With Disabilities “Decades after the ADA passed, medical care still isn’t accessible.” (2022, The Atlantic)

Visually impaired people less likely to access health care. A study from the CDC shows that 50% of those with vision impairment reported fair or poor general health compared with 17% without vision problems. (2022, Washington Post)

‘I Am Not The Doctor For You’: important research on Physicians’ Attitudes About Caring For People With Disabilities (2022, Health Affairs) Coverage in New York Times.

Disability & Health In 10 Exhibits: Themes from Health Affairs’ October 2022 Issue. (2022, Health Affairs)

Mistreatment of physicians with disabilities is widespread, study finds. (2022, Medical Economics)

At last, medical guidelines address care for adults with Down syndrome. (2022, Washington Post)

Key groups overlooked in bias training for doctors (2022, The Boston Globe)

The autistic community is having a reckoning with Applied Behaviour Analysis (ABA) therapy. Includes interesting reflections on the privatization of autism services and how ‘ABA has become “the single most reliable way to make money in the human services field beyond being a physician.”’ (2022, Fortune)

Severe maternal morbidity and other perinatal complications among women with disabilities. (2022, Paediatric and Perinatal Epidemiology)

Committing to Health Equity for All, Including People with Disability (2022, Mathematica)

Why billions in Medicaid funds for people with disabilities are being held up (2022, NPR)

People with disabilities left behind by telemedicine and other pandemic medical innovations. (2022, CNN)

Ageism: Signs, Causes, and How to Address It (2022, Healthline)

Pregnancy among Women with Physical Disabilities: Unmet Needs and Recommendations (2022, Brandeis)

'I am a medical student with significant hearing loss. ': Here’s what the pandemic has been like for me and others with my disability (2022, AAMC)

Technical Standards from Newly Established Medical Schools: Review of Disability Inclusive Practices: "medical schools may perpetuate historically restrictive technical standards that serve as barriers to applicants with disabilities." (2022, Journal of Medical Education and Curricular Development)

Many doctors are still befuddled by accommodating people with disability (2022, Stat News)

A new book, Deaf Rhetoric “An Ecology of Health Communication” (2022, Spriner)

Program Access, Depressive Symptoms, and Medical Errors Among Resident Physicians With Disability. 'Our study establishes an association between a lack of accessibility and heightened risk for depression and self-reported medical errors during training.' (2021, JAMA Network)

An article on Ableism: Types, examples, impact, and anti-ableism. “In healthcare, ableism can affect interactions with doctors and other professionals, healthcare policies, and health outcomes. The idea that disabled people have less value or lower-quality lives contributes to damaging practices that persist today.” (2021)

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Australia

‘They treat you like an it’: people with intellectual disability on seeing medical professionals. (2023, The Conversation)

Developing self-report disability questions for a voluntary patient registration form for general practice in Australia (2023, Australian and New Zealand Journal of Public Health)

Access to general practice for people with intellectual disability in Australia: a systematic scoping review. (2022)

Hospitals only note a person's intellectual disability 20% of the time – so they don't adjust their care. “Potentially avoidable deaths (from conditions that could have been prevented through individualised care or treatment, like viral pneumonia, asthma, or diabetes) are more than twice as likely in people with intellectual disability.” (2022, the Conversation)

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New Zealand

Woman wheeled herself to hospital when ambulance couldn't take her wheelchair (2022, Stuff)

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Brazil

The National Health Policy for People with Disabilities: An Analysis of the Content, Context and the Performance of Social Actors. “Undoubtedly, the neoliberal offensive on social policies, especially the Unified Health System, is the main obstacle to the effective implementation of the [National Health Policy for Persons with Disabilities]” (2022, Health Policy and Planning)

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