KremlinMosqueForbidden City BeijingDhowStatue of LibertyTower Bridge

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

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.

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.

Interview with Adolf Ratzka by Christa Hofmann in "Leben ohne Barrieren"

Interview with Adolf Ratzka by Christa Hofmann talking about personal assistance in Sweden. Part of the program "Leben ohne Barrieren" shown on tv.orf.at/weltjournal 2014-12-02. Austrian TV. 

The interview is in german and there are no subtitles.

"Låt hjälpmedelsanvändare själva avgöra sitt eget bästa"

Dr., Ratzka Adolf;.  2015.  "Låt hjälpmedelsanvändare själva avgöra sitt eget bästa".
Swedish

Sjukvård. Många köper sina hjälpmedel själva utanför landstingens system. Har man råd får man större utbud, bättre kvalitet och bemötande. Genom att skapa en ny modell för detta, hämtad från assistansersättningen skulle hjälpmedelsanvändarna få större självbestämmande och högre livskvalitet, oavsett storlek på plånboken.

Publicerad: 11 februari 2015 i dagenssamhalle.se

Remissvar på betänkandet Förändrad assistansersättning – en översyn av ersättningssystemet (SOU 2014:9)

Dr., Ratzka Adolf;.  2014.  Remissvar på betänkandet Förändrad assistansersättning – en översyn av ersättningssystemet (SOU 2014:9).
Swedish

Independent Living Institute är remissinstans till betänkandet (SOU:2014:9).

I utredningen föreslås att nuvarande timschablon för ersättningen för personlig assistans görs om till en grundschablon per timme med i huvudsak samma innehåll som idag men med kraftigt reducerat belopp. Grundschablonen föreslås också täcka kostnader vid ordinarie assistents sjukfrånvaro som hittills bekostades av kommunerna. Utredningen föreslår också en tilläggsschablon som ska kunna beviljas assistansberättigade som har särskilt stort behov av assistans på nätter och helger och som inte fyllt 65 år.

"Personligt om assistans" intervju med Adolf Ratzka av Peter Anderson-Pope för Rekryteringsgruppens tidskrift Kick höst 2013

Anderson-Pope, Peter.  2013.  "Personligt om assistans" intervju med Adolf Ratzka av Peter Anderson-Pope för Rekryteringsgruppens tidskrift Kick höst 2013.
Swedish
Under sin snart tjugoåriga historia har assistansreformen lyckats bli såväl älskad som verktyg för befrielse och avskydd som ett verktyg för brottslig verksamhet. -Men i sin helhet är assistansreformen en succé, säger Adolf Ratzka som visade vägen med ett pilotprojekt på nittonhundraåttiotalet som så småningom ledde fram till reformen. -Det som inte är bra med den är småsaker i sammanhanget.

Working hours for personal assistants in Sweden

Independent Living Institute.  2012.  Working hours for personal assistants in Sweden.
English
Summary of legislation and debate about working hours for personal assistants in Sweden as of February 2011. Issues related to working hours for personal assistants have been discussed from a variety of perspectives at Assistanskoll. One such issue involves the EU directive 2003/88/EC “concerning certain aspects of the organisation of working time”, which was adopted in the Swedish Working Hours Act in 2007. The new rules significantly impacted personal assistance services, raising several concerns; for example, the directive would limit the ability of personal assistance users to travel due to the higher requirements for daily rest forcing travellers to have three assistants instead of two, which would make the trip more expensive.

Personal Assistance - a revolution for people with disabilities - Keynote

Westerberg, Bengt.  2013.  Personal Assistance - a revolution for people with disabilities - Keynote.
English
of the Liberal Party (Folkpartiet), describes the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (LSS), puts it in context with other Swedish legislation, and reflects on its societal costs and benefits. The reform utilizes direct payments for freedom of choice, self-determination and personal responsibility and, in this way, differs from traditional Swedish welfare politics where state agencies typically combine the functions of needs assessment, financing, quality control and service provision. Mr Westerberg, who credits the Swedish Independent Living movement for introducing the concept of direct payments for personal assistance to Sweden, succeeded in getting the legislation approved by Parliament during the country's deep economic crisis at the beginning of the 1990's. In Sweden, his personal pride in the legislation he authored is well-known.

Pages

Subscribe to