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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 assistanskoll.se). 

We invite you to add to this collection by amending, updating articles or writing new texts. Please contact adolf.ratzka@independentliving.org

Personal Assistance articles by country

Sweden

Care or Personal Assistance around the World Articles

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.
English
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.

Comparison between personal assistance and home care work

Mladenov, Teodor, Elder-Woodward Jim, Siilsalu Mari, Cojocariu Ines Bulic, Hadad Nadia, Angelova-Mladenova Lilia.  2023.  Comparison between personal assistance and home care work.
English

 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

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.
Swedish
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.

ILI congratulates ULOBA on their 30th anniversary.

Internship in Independent Living Center in Stockholm

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

(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.
Swedish

1 oktober 2021

Till: Socialdepartementet

Diarienummer: S2021/04587

Vår kontaktperson: Jamie Bolling, jamie.bolling@independentliving.org

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.
Swedish

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

Personal Assistance for Disabled People in Germany and Sweden in the Context of the Independent Living Philosophy and the UN Convention on the Rights of People with Disabilities

Griesser, Selina.  2018.  Personal Assistance for Disabled People in Germany and Sweden in the Context of the Independent Living Philosophy and the UN Convention on the Rights of People with Disabilities.
English

Interviews with Personal Assistance Users and Independent Living Activists

Master’s Thesis

Abstract 

Article 19 of the UN Convention on the Rights of Persons with Disability (CRPD) states the right for disabled people to live independently and to be included in the community. The article includes the right to personal assistance as a tool for independent living. General Comment Number 5 on Article 19 of the CRPD criticizes the inadequacy of the implementation of this right and gives clear criteria, which define the term personal as-sistance. These criteria have to be fulfilled in order to call a service personal assistance.

Personal assistance in Finland, overview and external links

Independent Living Institute.  2014.  Personal assistance in Finland, overview and external links.
English

Finland (population 5.5 million) has personal assistance. In 2020 there were  28 000 personal assistance clients.

Links:

Understanding Independent Living in Sweden: An Overview

Janhager, Alexander Caputo.  2019.  Understanding Independent Living in Sweden: An Overview.
English

In our project Article 19 as a tool, we welcomed Alex Caputo Janhager as an intern. As a part of his internship and introduction to Sweden, he wrote a paper on the Independent living Institute and its activities, the Swedish political system and Sweden’s relation to international human rights norms. The paper is available at the end of this post.

Adolf Ratzka awarded ULOBAs 2017 Pride Award

Dr. Adolf Ratzka.  2017.  Adolf Ratzka awarded ULOBAs 2017 Pride Award.
English

Adolf Ratzka winner of  ULOBAs Pride Award in Oslo  2017

Adolf Ratzka wins ULOBA's 2017 Pride Award at the annual ULOBA Pride Parade in Oslo on June 17. ULOBA's general director Vibeke Maröy Melström had this to say about the jury's decision

This year’s winner of the Pride Award has been one of Europe’s leading activists in the fight for equality for disabled people for nearly five centuries.

The award winner defines Independent Living as us having the rights, choices and control over our own lives which others often take for granted.

Personlig Assistans – en kritisk granskning av regeringens direktiv till LSS-utredningen 2016

Westerberg, Bengt.  2017.  Personlig Assistans – en kritisk granskning av regeringens direktiv till LSS-utredningen 2016.
Swedish

Bengt Westerberg diskutera nio olika frågor med utgångspunkt i direktiven till LSS-utredningen:

  • Är kostnadsutvecklingen för LSS och assistansersättningen ohållbar?
  • Får för många assistansanvändare för många timmar?
  • Kan kommunernas LSS-insatser bli mer ändamålsenliga?
  • Vem ska bedöma träffsäkerheten?
  • Måste anhöriga ta större ansvar?
  • Ska personkretsindelningen ändras?
  • Ska huvudmannaskapet för assistansen ändras?
  • Är privata assistansanordnare ett problem?
  • Hur ska fusket stoppas?

LSS-utredningen tillsattes först sommaren 2016 med uppdrag att vara klar i oktober 2018.

Personlig Assistans - hotad frihetsreform?

Westerberg, Bengt.  2016.  Personlig Assistans - hotad frihetsreform?
Swedish

En rapport av Bengt Westerberg, april 2016

I förordet skriver Bengt Westerberg:

Germany, Corina Zolle - "A lot of people are afraid to leave their protected environments in institutions"

Westberg, Kenneth.  2016.  Germany, Corina Zolle - "A lot of people are afraid to leave their protected environments in institutions".
English

In Germany people must pay for personal assistance themselves, until their income and assets are almost exhausted, unless they have insurance cover.  “You can have a maximum of 2600 Euros in assets and retain from your income each month 800 Euros plus enough money to pay your rent.” says Corina Zolle, who has employed her own personal assistants for 20 years. “Compared with Germany, Sweden is a paradise.” She adds.

Die Voraussetzungen zur De-institutionalisierung von Menschen mit Behinderungen

Dr. Adolf Ratzka.  2015.  Die Voraussetzungen zur De-institutionalisierung von Menschen mit Behinderungen.
German
Persönliche Assistenz ist eine hochqualitative und kostengünstige Alternative zu Wohneinrichtungen und ambulanten Diensten, laut Adolf Ratzka - eine Behauptung, die er mit den über 20-jährigen schwedischen Erfahrungen mit persönlicher Assistenz belegt. Den Hauptwiderstand gegen persönliche Assistenz in Deutschland sieht er in den Eigeninteressen der Wohlfahrtsverbände und dem noch weitverbreiteten medizinischen Bild von Behinderung.

Self-determination through Direct Payments and Personal Assistance cooperatives

Dr. Adolf Ratzka.  2015.  Self-determination through Direct Payments and Personal Assistance cooperatives.
English
In his keynote address Adolf Ratzka delineates the origins of STIL, the Stockholm Cooperative for Independent Living owned and mainly run by Personal Assistance user themselves providing services to its members. Personal Assistance is here depicted as an example of demand-driven as opposed to supply-driven services which, according to the text's analysis, would explain the differences between these services in terms of quality and cost efficiency.

Nej till åldersbegränsningen av mänskliga rättigheter! Ja till personlig assistans efter behov inte ålder!

Dr. Adolf Ratzka.  2014.  Nej till åldersbegränsningen av mänskliga rättigheter! Ja till personlig assistans efter behov inte ålder!. Socialvetenskaplig tidskrift. 21(3-4):7.
Swedish
Dagens åldersdiskriminering i personlig assistans är ohållbar i längden. Det är bara en tidsfråga tills Sverige dras inför Europadomstolen för detta. Är det inte hög tid för regeringen att tillsätta en utredning som räknar fram assistansersättningens verkliga nettokostnader för samhället med hänsyn till samtliga omfördelningseffekter? Med resultatet som underlag, kan man sedan föreslå ett regelverk för samfinansiering mellan stat, landsting, kommun och hushåll som möjliggör en assistansersättning efter behov, oavsett ålder, diagnos och minimibehov som hjälper oss att leva och åldras med självbestämmande och värdighet.

What role can Independent Living play in a country in economic crisis?

Dr., Ratzka Adolf;.  2015.  What role can Independent Living play in a country in economic crisis?
English
SYRIZA, the government party in Greece, organized a conference on politics and disability together with the Greek branch of the Independent Living movement in Athens, March 13, 2015. Adolf Ratzka was invited to participate by Skype and talk about the role that Independent Living, especially Personal Assistance, can play in a country in economic crises: benefiting persons with extensive disabilities who today often depend on their families for physical survival and benefiting the national economy by creating employment opportunities and stimulating domestic demand.

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