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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

Adolf Ratzka awarded ULOBAs 2017 Pride Award

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

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"

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

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

German
Adolf, Dr. Ratzka.  2015.  Die Voraussetzungen zur De-institutionalisierung von Menschen mit Behinderungen.
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

English
Adolf, Dr. Ratzka.  2015.  Self-determination through Direct Payments and Personal Assistance cooperatives.
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?

English
Dr., Ratzka Adolf;.  2015.  What role can Independent Living play in a country in economic crisis?
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"

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

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

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

English
Independent Living Institute.  2012.  Working hours for personal assistants in Sweden.
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

English
Westerberg, Bengt.  2013.  Personal Assistance - a revolution for people with disabilities - Keynote.
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.

Independent Living-rörelsen banade vägen

Swedish
Dr. Adolf Ratzka.  2012.  Independent Living-rörelsen banade vägen.
Kapitel 2 ur boken: Perspektiv på personlig assistans, Brusén Peter, Flyckt Karin (red.), Gothia Förlag 2012 Adolf Ratzka Välviljans förtryck Socialpolitiken styrs vanligtvis inte av dem vars liv den påverkar, utan av politiker och tjänstemän utifrån politiska hänsynstaganden och en nödvändigtvis begränsad kännedom om andra människors livsvillkor. Det gäller framför allt oss personer med omfattande funktionsnedsättningar som för vår överlevnad är beroende av andra människors praktiska insatser i det dagliga livet, exempelvis med uppstigning, påklädning, toalettbesök, duschning. Ju större vårt beroende är, desto självklarare tar sig omgivningen rätten att ha åsikter om vad vi behöver och desto mindre har vi som berörs att säga till om när det gäller hur vi vill leva våra liv och vilka samhällsinsatser vi behöver. Som resultat ser vi ofta lösningar och tjänster som Resultaten av lösningarna gör oss mer beroende av andra istället för oberoende.

Working and parenting with personal assistance

English
Tillander, Erik.  2012.  Working and parenting with personal assistance.

Summary of legislation, interpretations and other developments as of August 2012

In sweden there is a law that defines the rights people with severe functional impairments have to various fully funded services and benefits, including personal assistance. The law also defines requirements for a  functional impairments to be considered severe. This Law is called "The Law about Support and Service for Persons with Certain Functional Impairments (LSS)" and is the subject of regular review. If you are too old or not sufficiently impaired to qualify for LSS services then you may only be entitled to partially funded services according to another law.

Benefit fraud in relation to personal assistance in Sweden

English
Tillander, Erik.  2012.  Benefit fraud in relation to personal assistance in Sweden.

Summary of legal cases, statistics and media coverage as of November 2012

In early 2010, Halmstad District Court handed down three judgments and several people were sentenced to prison for benefit fraud. These cases involved people pretending to be disabled, as well as other types of crimes, such as tax evasion and fraudulent timesheets that also figured in the subsequent discussion. In 2011 about 20 assistance companies were investigated, and two more people were convicted in February 2012.http://assistanskoll.se/20120209-Dom-mot-agare-till-assistansforetag-i-Halland.html.

Eunice Ya-Yu Kao, Taiwan - "Those who can pay have migrant care workers as assistants"

English
Westberg, Kenneth.  2012.  Eunice Ya-Yu Kao, Taiwan - "Those who can pay have migrant care workers as assistants".
Institution, home care or migrant care workers are the options available for people with disabilities in Taiwan. Migrant care workers come from other Asian countries and work under difficult conditions. Since 2008, however, inspired by Japan, there is one user cooperative with about ten assistance users.

Personal Assistance empowers persons with disabilities and benefits the national economy

English
Dr. Adolf Ratzka.  2012.  Personal Assistance empowers persons with disabilities and benefits the national economy.
Persons with the exactly the same disabilities can have completely different lives depending on where they live. In some countries there are policies and attitudes that allow us to develop and follow our interests, get education and work, meet friends, marry and have children. In other countries, people with disabilities may have to live with their parents or in institutions, with little contact with the outside world, with no or only simple work.

The Independent Living movement paved the way: Origins of personal assistance in Sweden

English
Dr. Adolf Ratzka.  2012.  The Independent Living movement paved the way: Origins of personal assistance in Sweden. Perspectives on personal assistance.
Chapter 2 Perspectives on personal assistance, Brusén Peter, Flyckt Karin (ed.), Gothia Förlag 2012 Adolf Ratzka Benign oppression Social policy is rarely made by the people whose lives it affects. Rather, it is formulated based on political considerations by politicians and bureaucrats who, by necessity, have limited knowledge of the conditions of other people’s lives – especially regarding those of us with extensive disabilities who depend on other people to survive and require practical assistance with activities of daily living such as getting out of bed, dressing, personal hygiene and bathing. The greater our dependence, the more others assume they are entitled to have opinions about our needs and the less those of us affected have a say in how we want to live our lives and what social resources we need. As a result, solutions and services often make us more dependent on others rather than independent.

Personal Assistance and the Crisis: Now is the time to promote Direct Payments for Personal Assistance

English
Dr. Adolf Ratzka.  2012.  Personal Assistance and the Crisis: Now is the time to promote Direct Payments for Personal Assistance.
Presentation for Congress of the European Spinal Cord Injury Federation, Lucignano, Italy 23–25 May 2012 Already before the current crisis people with disabilities fared worse than the general population as measured by most social indicators such as income, employment, housing etc. But now the gap is widening as recent official statistics, for example in Sweden, show.

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