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Care or Personal Assistance around the World

Articles, interviews and reports about the situation of people who need practical daily help for their survival. For our purposes, “care” and “personal assistance” denote the two extremes of one conceptual continuum.

  •   “Care” means here getting fed, toileted, washed and dressed - the bare minimum needed for physical survival. With “personal assistance” the individual with a disability is in control and decides what is to be done, who is to work, and how, where and when the work is to be carried out.
  •  “Care” allows us to survive, “personal assistance” enables us to live.
  •  In “care” we are seen and made to feel as passive objects. With “personal assistance” we are subjects who can take our rightful place in family, community and society as full citizens, with the duties and rights that citizenship entails.
  • With “care” we are not allowed to contribute much. With “personal assistance” interests, work, relationships and parenthood are possible for us depending on our potential and preferences.
  • In “care” others decide for us. With “personal assistance” we decide.

Where along this continuum between “care” and “personal assistance” do we live?  What are the consequences of a particular country’s policies in terms of our possibilities for inclusion, participation and self-determination? We want to highlight good solutions but we also need to document the injustice, negligence and sometimes outright oppression that our group is still exposed to.

Our ambition is to have updated descriptions of the situation in many countries. Most of the texts are in English, some in a few other European languages (for Swedish texts see 

We invite you to add to this collection by amending, updating articles or writing new texts. Please contact

Personal Assistance articles by country


Care or Personal Assistance around the World Articles

Personal assistance in Sweden

Smaaland, Jessica.  2023.  Personal assistance in Sweden.

In Sweden there are changes in the law being viewed for personal assistance. One change that is now on the table is to make the state solely responsible for personal assistance and not as it is today – a division between the state and the municipalities.

In March, results were presented from an investigation suggesting that personal assistance should be entirely decided and paid for by the state. This is something that the Swedish cooperative STIL has been lobbying for a long time. If this proposal were to go through, those people who currently have their personal assistance granted by the municipality will be transferred to the Swedish Försäkringskassan, or the national authority.

Disability Defenders Network’s Newsletter - The development of personal assistance in Scotland

Elder-Woodward, Jim.  2023.  Disability Defenders Network’s Newsletter - The development of personal assistance in Scotland.

Project 81

As with the USA, the concept of disabled people controlling their own support system started with a small group of disabled people being given money to employ their own personal assistants to live a fulfilling life in the community. But this time the group were not university students, but residents of a residential home in Hampshire, England. Project 81, the International Year of People with Disabilities, appealed to the right-wing neoliberal government at that time, which favoured self-help and self-responsibility for one’s own welfare. Here, disabled people were being taken from dependency on others in expensive care homes, to the independence of their self-directed support in the community.


The struggle for a PA law in Poland

Orylski, Lukasz.  2023.  The struggle for a PA law in Poland.

In 2012, the Polish parliament, which had a majority of the centrist parties, ratified the CRPD. Despite this, nothing was done to make personal assistance available and regulated at central level. Until 2019, this kind of support was mainly organised only in Poland's largest cities. This was done by NGOs, not controlled by persons with disabilities. The services were funded by European Union funds or city budgets. A report prepared by independent researchers, commissioned by the government's Office for Persons with Disabilities shows that between 2016 and 2020, personal assistance was not implemented fully in accordance with the CRPD and General Comment 5 anywhere in Poland. There was a lack of regulations specifying in which activities the assistant could support the service user. Interruptions in the implementation of services, even lasting several months, were frequent. The users could not decide who would become their personal assistant. Service hour limits were not tailored to individual service users' needs. Children and young people were not able to access personal assistants. In practice, people living in rural areas and small towns were not able to access these services.

The Development of Personal Assistance in Malta: Moving closer to independent living through a practical and phased approach

Farrugia, Mauro.  2023.  The Development of Personal Assistance in Malta: Moving closer to independent living through a practical and phased approach.

Malta small’s size lends itself ideal to implement changes; word travels fast, unlike the propensity to challenge the status quo. Along the years, Malta’s disability rights movement has been sporadic, often led by parents who placed most of their concerns on what happens to their sons and daughters once they pass away. The charity model was at the forefront, with the Church opening a number of larger residential institutions. Whilst a stance that was much needed at the time, when persons with disabilities were kept hidden from society, it remains a dominant perspective to this day, with institutions generally perceived as essential and beneficial.

Personal Assistance: What's the current situation in Finland?

Purhonen, Sanni.  2023.  Personal Assistance: What's the current situation in Finland?

Sanni Purhonen

As you know there are different ways of organizing personal assistance in the Finnish model: purchase service, service voucher and an employer model. The Threshold Association favours especially the employer model, because it provides the best starting point for the independent living. Personal assistance has been a subjective right for the disabled people in Finland since 2009.

The history of the adoption of the Personal Assistance Law in Bulgaria and its subsequent controversial effect - 2009-2023

Nikolov, Mitko.  2023.  The history of the adoption of the Personal Assistance Law in Bulgaria and its subsequent controversial effect - 2009-2023.

Mitko Nikolov

The Law on Personal Assistance (PAA) was adopted in Bulgaria in 2018 after a long struggle by several groups of people with disabilities. An initial initiative was the Center for Independent Life (CIL) - a non-governmental organization of disabled people with over 20 years of expertise in protecting the rights of disabled people and their empowerment. In 2009, a group of people with severe physical disabilities, with the support of lawyers, studied the European and world experience and, especially that of Sweden and Norway, and developed a draft of the PAA. In it, they combined the best practices from the experience of other countries and complied with the current Bulgarian legal norms.

Establishing a Nordic Competence Centre on Personal Assistance

Skogseth, Egil Gullestad.  2023.  Establishing a Nordic Competence Centre on Personal Assistance.

Initiator: Vibeke Marøy Melstrøm in Uloba has invited other Nordic independent living organisations to co-found the new competence centre on personal assistance. From left to right: Jonas Franksson and Jessica Smaaland from STIL, Erna Eiríksdóttir from NPA, and Laila Bakke and Egil G. Skogseth from Uloba

Nordic independent living organisations join forces to systematically exchange documentation and the development of the situation of personal assistance in each country. This way trends and threats can be identified in order to organise counter activity.

Iceland, Finland, Sweden, Denmark, and Norway have similar welfare states, and have all ratified The Convention on the Rights of Persons with Disabilities (CRPD). In the Nordic Council and other fora, Nordic politicians exchange ideas on political reforms on issues such as personal assistance (PA). Governmental investigations and policy papers on PA in Norway and Sweden compare PA in the Nordic countries.

Peer support and independent living

Grotta, Alessandra, Goungor Kamil.  2023.  Peer support and independent living.

What is Peer Support and why is it important in the context of Independent Living

Peer support is one of the pillars of Independent Living and an essential element for the self-determination of disabled people.

Peer support can be described as the help and support that people with lived experience can give to other individuals in a similar situation. For example, it can refer to support provided by someone using personal assistance (PA) to another person using a PA. Or, to somebody who has lived in an institution in the past to other people still living in institutions. This support may be social, emotional or practical (or all of these), and can be life changing.

Personal Assistance - What should personal assistance look like?

Mladenov, Teodor.  2023.  Personal Assistance - What should personal assistance look like?

Personal Assistance - What should personal assistance look like?

Teodor Mladenov
Teodor Mladenov, Senior Lecturer at the University of Dundee and Coordinator of ENIL’s Independent Living Research Network


This article is part of a special issue on Personal Assistance (PA) of the Disability Rights Defenders Newsletter published by the Independent Living Institute.

Avskaffade institutioner på agendan

Grafström, Herman.  2023.  Avskaffade institutioner på agendan.

Avskaffade institutioner på agendan

Den femte maj firas varje år Independent Living Day och 2023 uppmärksammades detta bland annat med en konferens i ILIs lokaler i Farsta utanför Stockholm. Det var ett tjugotal åhörare som samlades för att lyssna på föreläsningar, ställa frågor och diskutera ämnet avinstitutionalisering i Sverige.

Freedom to choose with whom, where and how you want to live – Deinstitutionalisation (DI) in Sweden

Karlsson, Riitta-Leena, Bolling Jamie.  2022.  Freedom to choose with whom, where and how you want to live – Deinstitutionalisation (DI) in Sweden.
In this publication, Jamie Bolling and Riitta-Leena Karlsson examine what is required to provide persons with disabilities with opportunities to live like others. The UN Convention on the Rights of Persons with Disabilities (CRPD) and existing Swedish laws, not least the Social Services Act (SoL) and the Act concerning Support and Service for Persons with Certain Functional Impairments (LSS), support this goal. However, as the authors note, the implementation recently has become restrained in a manner that has impaired the possibilities to do so for many.

Friheten att bestämma med vem, var och hur en vill bo – Avinstitutionalisering/Deinstitutionalization (DI) i Sverige

Karlsson, Riitta-Leena, Bolling Jamie.  2022.  Friheten att bestämma med vem, var och hur en vill bo – Avinstitutionalisering/Deinstitutionalization (DI) i Sverige. :88.
I den här skriften redovisar Jamie Bolling och Riitta Leena Karlsson vad som krävs för att personer med funktionsnedsättning ska få möjligheter att leva ett liv som andra. FN:s konvention om rättigheter för personer med funktionsnedsättning och gällande svenska lagar, inte minst socialtjänstlagen och lagen om stöd och service till vissa funktionshindrade (LSS), ger stöd för det målet, men som de konstaterar så har tillämpningen under senare stramats åt på ett sätt som för många har försämrat förutsättningarna att kunna göra det.

Comparison between personal assistance and home care work

Mladenov, Teodor, Elder-Woodward Jim, Siilsalu Mari, Cojocariu Ines Bulic, Hadad Nadia, Angelova-Mladenova Lilia.  2022.  Comparison between personal assistance and home care work.

 This document was co-created in May 2022 by Teodor Mladenov (University of Dundee), Jim Elder-Woodward (Scottish Independent Living Coalition), Mari Siilsalu (Independent Living Institute), Ines Bulic Cojocariu (European Network on Independent Living), Nadia Hadad (European Network on Independent Living), and Lilia Angelova-Mladenova (European Network on Independent Living).

Decision adopted by the UN CRPD Committee against Finland under article 5 of the Optional Protocol, concerning CRPD art 5, 14 and 19

The UN CRPD Committee found that the fact that the relevant domestic authorities in Finland rejected the author’s application for personal assistance on the basis of resource criteria is indirect discrimination against persons with intellectual disabilities as it had the effect of impairing or nullifying the author’s enjoyment and exercise of the right of living independently and being included in the community on an equal basis with others, in violation of his rights under article 5 (1) and (2) read alone and in conjunction with article 19 of the Convention on the Rights of Persons with Di

ILI congratulates ULOBA on their 30th anniversary.

Internship in Independent Living Center in Stockholm

Komanická, Daniela.  2021.  Internship in Independent Living Center in Stockholm.

(Daniela Komanická)
Stockholm 21st September 2021
Daniela Komanická

Remissvar över betänkandet SOU 2021:37 Stärkt rätt till personlig assistans

Independent Living Institute, Sweden.  2021.  Remissvar över betänkandet SOU 2021:37 Stärkt rätt till personlig assistans.

1 oktober 2021

Till: Socialdepartementet

Diarienummer: S2021/04587

Vår kontaktperson: Jamie Bolling,

Remissinstans: Independent Living Institute

Independent Living Institute (ILI) är en ideell tankesmedja och projektplattform inom medborgarrättsrörelsen Independent Living av personer med funktionsnedsättning. Våra grundläggande principer är självbestämmande, självrespekt och empowerment (bemäktigande och bemyndigande). Vi lämnar här vårt remissvar på betänkandet SOU 2021:37 Stärkt rätt till personlig assistans.

Stiletten Samlingen 1986 – 2010

Dr. Adolf Ratzka.  2021.  Stiletten Samlingen 1986 – 2010.

Stiletten 3 1986Stiletten var STIL-kooperativets organ som gavs ut i pappersform fram till 2011. 1986 kom dåvarande verksamhetsledaren Bengt Elmén på idéen att samla våra frekventa utskick till medkämparna och medlemmarna och allmänheten i ett nyhetsbrev med detta vassa namn. Stilettens uppgift var att hålla dem informerade om


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