Independent Living and Deinstitutionalization

International News

Towards Dignity and Autonomy a report on personal assistance policies across nine countries. (Mar, ENIL and ILO)

Good practices of support systems enabling community inclusion of persons with disabilities (2023, OHCHR)

Care and support is about human rights reflections on the International Day of Care and Support. (2023, OHCHR)

“Support” as “care”. a response to the OHCHR report on support systems for community inclusion of persons with disabilities:

“we express our concerns here, that this report A/HRC/52/52 does not fulfil the noble mandate of the OHCHR, is not compliant with the CRPD nor does it advance our advocacy on community inclusion” (Link to pdf, 2023, TCI Global)

How do we look after each other? On the Debrief: rethinking care systems with policy and personal experience (2023, Disability Debrief)

Report on the support systems to ensure community inclusion

“The COVID-19 pandemic has accelerated discussions on care systems; such discussions recognize the need to transform traditional care models so that they protect equally the rights of those receiving and providing care. [This report] highlights the human right of persons with disabilities to be included in the community within the current global developments on care, addressing in this context the specific support needs of persons with disabilities for community inclusion” (2023, OHCHR)

See also extracts and key points from the report (Inclusion Europe).

Guidelines on deinstitutionalization, UN Committee on the Rights of Persons with Disabilities guidance to governments to realize independent living and deinstitutionalization. (2022, OHCHR) See also:

• Discussion of escaping institutions and their shadows (Disability Debrief)
• Commentary and explanatory video (IDA)

A discussion paper on the Disability Support Gap: Community support systems for persons with disabilities in low- and middle-income countries (Link to PDF, 2022, CIP)

A report on CBM's work on Community Based Inclusive Development (2022, CBM)

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Ethiopia

Family quality of life and children with disability: The role of support providers. “Ethiopian families of children with disabilities need holistic support that incorporates spirituality, the whole family’s needs and disability awareness-raising. Collaborative and committed engagement from all stakeholders is necessary to support Ethiopian families to flourish.” (2023, African Journal of Disability)

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South Africa

‘People don’t understand what we go through!’: Caregiver views on South Africa’s care dependency grant. (2023, African Journal of Disability)

Challenges of caregivers providing care to children with disabilities at non-governmental organisations in Tshwane townships. (2022, African Journal on Disability)

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Tanzania

Adaptive adjustment to the needs of families caring for children and adolescents with physical disabilities in north-eastern Tanzania: a grounded-theory study. (Jun, Global Health Action)

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China

‘They fell through the cracks’: how can Hong Kong better help mentally disabled people and their carers? Parents, experts want wider safety net for high-risk residents (2023)

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Georgia

Georgian court orders government to provide assistant to person with disabilities. (2022, OC Media)

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India

Considered a backup. On the Debrief: a feature on the overlooked power of disabled care. (2023, Disability Debrief)

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Japan

Freeing Disabled People from institutions in Japan: conversation with Misako Yasuhara. (2023, ENIL)

Inside Japan’s long experiment in automating eldercare. “A growing body of evidence is finding that robots tend to end up creating more work for caregivers.” (2023, MIT Technology Review)

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Pakistan

Detailed article on care and the situation of persons with disabilities. (2022, Dawn)

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South Korea

A column reflecting on deinstitutionalization and the leading politician from the government party who said that “deinstitutionalization is a matter of choice.” (2022, Hankyoreh)

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Thailand

Have Thailand’s Personal Assistance Services for Persons with Disabilities Evolved?

“Personal Assistant services introduced by the Thai Independent Living movement were incorporated into the law, but implementation was largely managed and delivered by government offices responsible for charitable modes of care, with an emphasis on volunteering.” (Jan, DCIDJ)

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Europe

Proposal to the Framework on Social Services of excellence for persons with disabilities. (Apr, ENIL)

A Day in the Life of a Personal Assistant User video feature. (2023, European Network on Independent Living)

ENIL’s position on the new UN Resolution for the International Day for Care and Support: “we regret that the Resolution focuses on those providing support, rather than the people receiving it.” (2023, ENIL)

Disabled people and the right to personal assistance Coming EU guidance on independent living should not squander the chance to improve the lives of millions of disabled people. (2023, Social Europe)

Launch of ENILs´ proposal to the Commission: Guidance on Independent Living. (2023, ENIL)

Role of the European Union in deinstitutionalisation and independent living. (2023, Inclusion Europe)

Digest in plain English of a Special Issue on Independent Living in Europe and Beyond: Past, Present and Future. (2023, IJDSJ)

On Our Terms a podcast on independent living and disability activism, hosted by the Debrief's own Áine Kelly-Costello. (2022, European Network on Independent Living)

Does the European Care Strategy care about disability? “The council recommendation on long-term care needs first of all to recognise disability support as a topic distinct from care.” (2022, Social Europe)

Deinstitutionalising disabled people: making it happen. “Notably absent from the EU countries with a deinstitutionalisation strategy is the entirety of south-west Europe. None of the most populated EU member states—France, Italy, Spain and Germany—has adopted such a document.” (2022, Social Europe)

Deinstitutionalisation, disability and delay “After a decade of inertia, the EU has made little progress on the deinstitutionalisation of disabled people.” (2022, Social Europe)

Roadmap for user centered funding for long-term care and support. (2022, UNIC Project)

A Call for Change Role of the European Union funding in supporting deinstitutionalisation around the world. "The EU is in a particularly strong position to promote deinstitutionalisation reforms during the process of EU enlargement. " (2022, EDF)

Inclusion Europe's 2022 Campaign is to End Segregation.

“The situation of people with disabilities more generally has improved over time. However, this is not true for all people and more limited for people with intellectual and developmental disabilities, who are more likely to be living in segregated or congregated settings and less likely to be experiencing real inclusion.” (2022, Inclusion Europe)

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Bosnia and Herzegovina

Bosnia and Herzegovina Should Stop Institutionalizing People with Disabilities Changing Perceptions and Ensuring Support Services in Communities. (2023, Human Rights Watch)

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France

Debate over closure of establishments for disabled people has stalled. “Emmanuel Macron recently advocated "deinstitutionalization", while emptying the term of its meaning.” (In French, 2023, Libération) See discussion on the Debrief.

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Germany

Bye Bye Disabled Home: This Bremen couple wants to live independently. (In German, May, Buten un binnen)

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Greece

The availability, accessibility, and quality of support services for older persons with disabilities: the formal and informal care services are “not clearly addressing the needs and special characteristics of older persons with disabilities” (2022, EASPD)

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Hungary

We need good support to live independently - Report about a self-advocacy conference in Hungary. (2023, Inclusion Europe)

I am the director of my own 'institution': the seasonal appeal by Validity shows their own work and “depicts István’s transition to living independently with the support of people he trusts” (2022, Validity)

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Ireland

Concern over future safeguarding incidents at disability services raised in Donegal review (2022, The Irish Times)

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Netherlands

As Cases Soar, ‘Dementia Villages’ Look Like the Future of Home Care “A new generation of treatment facilities is aiming to integrate dementia patients with the communities around them, blurring lines between home and hospital.” (2023)

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Poland

We are talking to you: “The procedure for granting the right to a carer's benefit sounds more like a description of persecution than an example of supporting citizens in a difficult situation. [...] Contact with social workers and center directors is like traveling back in time at least 30 years ago.” (In Polish, translation by Google, 2023, Krytyka)

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Romania

"Now I support others to get out of institutions" speech from Elisabeta Moldovan, gut-wrenching episodes from her time in institution herself, and how she is changing things. (2022, Inclusion Europe)

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Spain

Strategic framework for deinstitutionalization. (In Spanish, 2023, Government of Spain) See also some critique of it from the Foro de Vida Independiente y Divertad.

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Switzerland

I hate you, leave me, but come help me reflecting on physical dependence. (In French, Jul, Couper L'Herbe Sous Le Roues)

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Ukraine

(No More) Places of Unfreedom “Thousands of Ukrainians with disabilities still live in closed institutions. Human rights defenders are trying to change that.” (Apr, Kyiv Post)

Best practice in deinstitutionalisation for children and young people with disabilities and high support needs. A project in one institution. (Feb, EDF)

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United Kingdom

Suicidal thoughts of parents with disabled children: “41% of parents in England who have a child with long-term illness or disability have thought about suicide while caring for their child, new research has found.” (Jul, University of Birmingham)

Building the Right Support The number of people detained in Assessment and Treatment Units reduced by just 30% since 2015, to 2,045. An increased number of them are autistic people:

“The detention of autistic people and people with a learning disability in locked settings is a national scandal, and one that is wholly avoidable.” (Jun, VODG)

Liberty tactics: On the rise of ‘deprivation of liberty safeguards’. “A growing number of countries are also recognising and regulating restrictive and supervisory social care living arrangements as a form of detention.” (Apr, Journal of Elder Law and Capacity)

Civil society response to Bristol City Council’s draft disability policy (Feb, Doughty Street Chambers)

From closing down institutions to opening up communities

“[Today] the majority of adults with a learning disability or autism live with their parents (increasing numbers of who are over 70 reflecting improvements in life expectancy among adults with learning disabilities or autism). Living in a registered care home forms the next most common living arrangement. A minority own or rent their own home. The remainder are in ‘Supported living’ arrangements.” (Feb, Making rights make sense)

Watch "See Me" by MiXiT. A celebration of inclusion. (2023, Social Care Future)

The Lonely Reality of Avoiding Being Alone.

“As someone who requires skilled support 24 hours a day I’m never really on my own – but if I am it’s because I’ve failed. Failed, that is, to meet my most basic need, the continuous presence of someone who can keep me safe. [... In the last six months] I’ve cried because of care related arguments or relationship strain 30 times – including today.” (2023, Tourettes hero)

On independent living, the focus of policy should be the destination.

“The problem with ‘deinstitutionalisation’ as a goal is that it elevates a departure point over a destination and process over outcome. The destination and outcome isn’t disabled people not living in what we class as being ‘institutional care’, it is disabled people living independently & being included in the community on an equal basis with others.” (2023, Making Rights Make Sense)

Sussex disabled man breaks silence after being imprisoned and kept in 'squalor' by wife for years. (2023, ITV News Meridian)

The Disability Serviceland Song “a song about control, power and self-determination. Staring Ellie Goldstein.” (2022, Open Future Learning)

Brother, do you love me? The cry for help that sparked a care-home rescue mission. (2022, the Guardian)

Disabled People trapped waiting years for vital home adaptations (2022, The Bureau of Investigative Journalism)

Great video on how support workers can enable a social life (2022, Open Future Learning)

A new book, open access, Deprivation of Liberty in the Shadows of the Institution on how restrictive practices from institutions continued as services were provided in the community. (2022, Bristol University Press)

My Freedom A retrospective on the 10th anniversary of abuse reported at residential facility Winterbourne View. "My freedom means I go to bed when I want." (2022, Bemix)

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Costa Rica

17 people with disabilities died within six weeks after leaving the controversial foundation Manos Abiertas. (In Spanish, Apr, Semanario Universidad)

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Mexico

Mexico’s Care System Should Promote, Support Independence:

“The proposed bill in Mexico disregards the autonomy and rights of people with disabilities and older people by creating long term residences - that is, institutions, which violate their right to choose how and with whom to live” (Oct, Human Rights Watch)

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United States

No Place Like Home: People with Disabilities' Fight to Stay Out of Institutions (Video report, Mar, CBS News)

Florida kept disabled kids in institutions. A judge is sending them home. “The ruling could have sweeping implications for thousands of disabled people across the country who rely on state-provided home health-care services” (2023, Washington Post)

How electronic visit verification discriminates against disabled Americans. “The Vast Surveillance Network That Traps Thousands of Disabled Medicaid Recipients” (2023, Slate)

After ‘losing my life’ caring for a sick partner, a professor examines the U.S. caregiver crisis. (2023, Stat News)

Alice Wong on What I've learned being reliant on a caregiver: “My well-being is tied to the well-being of the people who care for me.”:

“Care is not a checklist of tasks and responsibilities. Care is a shared value and actions operating in a larger political context within a hypercapitalist, racist, ableist society that devalues certain types of labor and bodies. Conversations by policy experts and advocates about the caregiving crisis can be too abstract, and any meaningful structural and cultural change must acknowledge the tensions, human toll, material consequences, complexities and nuances about care from the people who provide and rely on it.” (2023, CNN)

Why Nursing Home Reform Is Finally Coming (2022, Next Avenue)

Medicaid's Money Follows the Person has allowed over 90,000 people with disabilities and seniors to move out of nursing homes and back into their communities. But Congress still won’t make the funding permanent. (2022, 19th News)

Profit, Pain and Private Equity: ‘BrightSpring Health Services, which KKR bought in 2019, says it helps thousands of people with disabilities “live their best lives.”’:

‘But a yearlong BuzzFeed News investigation found that KKR focused on expanding the business even as a crisis mounted in its group home division, where conditions grew so dire that nurses and caretakers quit in droves, a state prohibited the company from accepting new residents, and some of the most vulnerable people in its care suffered and died.’ (2022, Buzzfeed News)

The Care Crisis Isn’t What You Think "When it comes to disability, we devalue care (both caregiving and paid care work) because we devalue the people who need it." (2022, Prospect)

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Australia

Better, safer, more sustainable: How to reform NDIS housing and support. About 43,500 are living in group homes, “with average costs per resident of more than $350,000”:

“There are better and cheaper alternatives to group homes, but they are not widely available, in part because NDIS policies are too rigid and its funding too inflexible. Other countries, including the UK, the US, and Canada, have successfully reformed disability housing and introduced new living arrangements which offer people greater choice and a more individualised approach.” (Sep, Grattan Institute)

The disability paradox:

“I could go around all day with a support worker and be safe and supported. And I could continually scout ahead to locate the limited places that are accessible and go only there. But I don’t want to be confined to my own little lifeboat. I want my community to be open to all and inclusive. I want to get bogged at a beach in my wheelchair and know people will help. I want to push into a crowded, heaving mosh pit and join the other dancers.” (2023, the Guardian)

The number of reports of unauthorised restrictive practices to the NDIS is up five-fold in three years, to 1.4 million. (2023, ABC News)

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New Zealand

The joy of disabled mutual care “the ways that disabled people care for each other, from families to couples to community as a whole.” (2023, D*List)

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Guyana

Government to close National Psychiatric Hospital, shift to decentralised mental health services. (Sep, DPI Guyana)

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Uruguay

More Support Needed for Independent Living. A report on gaps in support systems for people with disabilities:

“Uruguay is among the first countries in the Americas to provide personal assistance for people with disabilities in their care system, but has yet to provide services for everyone who require them for independent living.” (Sep, Human Rights Watch)

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