Care or Personal Assistance around the World Articles

Latvia: “The view of people with disabilities has improved”

Westberg, Kenneth.  2010.  Latvia: “The view of people with disabilities has improved”.
English
In Latvia people with disabilities who do not have their own financial means or cannot get help from relatives usually live in an institution. A small subsidy is available to pay a personal assistant, but it does not go very far. Irina Parhomenko works at APEIRONS, which is dedicated to ensuring that personal assistance legislation becomes reality.

Norway: “Government breaks its promise of legislation for personal assistance”

Westberg, Kenneth.  2011.  Norway: “Government breaks its promise of legislation for personal assistance”.
English
Interview with Bente Skansgård, ULOBA on January 18, 2011. User-controlled personal assistance was implemented in Norway in 2000. The municipality has the monopoly in granting the intervention as required and has a strong influence on how assistance is organized—for example, by determining who can employ the assistants.

Municipalities as personal assistance providers in Sweden

Erdtman, Emil.  2010.  Municipalities as personal assistance providers in Sweden.
English

Summary of legislation, court interpretations and reports as of October 2010

Individuals granted personal assistance under the Act concerning Support and Service for Persons with Certain Functional Impairments (LSS) may choose whether their local municipality, a private company or cooperative will provide the assistance.

In Flanders all personal care assistants are employed by the people they assist.

Westberg, Kenneth.  2010.  In Flanders all personal care assistants are employed by the people they assist..
English
In Flanders all personal care assistants are employed by the people they assist. 5500 people are queuing to get personal assistance in the Belgian region of Flanders. A little less than 1800 have so far been granted personal budgets to employ their own assistants. There are organizations that provide administrative support and advice for those that want it.

Spain - Assistance - available in Spain by law, but not in reality

Erdtman, Emil.  2010.  Spain - Assistance - available in Spain by law, but not in reality.
English
Spain has had a law declaring personal assistance to be a right since 2006, but the law is not applied in practice. Instead there are various pilot projects. Catalonia has two such projects, one at the regional level and one operated by the Independent Living movement in the city of Barcelona.

Tough struggle for personal assistance in Iceland

Westberg, Kenneth.  2010.  Tough struggle for personal assistance in Iceland.
English
Only about fifteen people receive personal assistance payments in Iceland, but new legislation is under discussion and interest is rising. According to representatives of the newly formed NPA Center cooperative, however, there is resistance within the disability movement. In addition, the personal assistance agreements may be too miserly because of the economic crisis. Today special housing solutions dominate the scene with common personnel groups, where according to Embla Agustsdottir from NPA Center, it is hard to live an independent life.

2GoDirect - The experience of two people using a direct payment to employ a Personal Assistant

Egan, David.  2010.  2GoDirect - The experience of two people using a direct payment to employ a Personal Assistant. Center for Independent Living Carmichael House, Dublin, Ireland.
English
The experience of two people using a direct payment to employ a Personal Assistant. ‘Direct Payments’ is a generic term used to describe the provision of funds by the State, directly to people with disabilities, for the purpose of purchasing a range of supports and services. These services typically include personal assistance, therapies, and aids and equipment. Direct payments enable people with disabilities to employ individuals, directly or indirectly, to assist them with their everyday tasks.
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Interview with Arthur Klimchenko, 22 years, Kaliningrad - "Personal assistance would certainly be good, but I would be afraid of being dominated"

Westberg, Kenneth.  2010.  Interview with Arthur Klimchenko, 22 years, Kaliningrad - "Personal assistance would certainly be good, but I would be afraid of being dominated".
English
Arthur Klimchenko lives with his parents in the Russian city of Kaliningrad, he would like to leave home, but says that it is not possible because of his finances and his disability. When personal assistance is described for him, he sees the benefits, but he is also afraid that the assistants would decide over him, because of how persons with disabilities are viewed in Russia. He is also afraid that many disabled would stop doing what they are capable of doing and just exist, eating and sleeping.

Attitudes to people with disabilities are negative in Russia - Interview with Sergey Kiselev, Chairman of Apparel

Westberg, Kenneth.  2010.  Attitudes to people with disabilities are negative in Russia - Interview with Sergey Kiselev, Chairman of Apparel.
English
In Kaliningrad there are no home help services, people who need practical help but cannot get help from relatives or friends live in institutions. Sergey Kiselev, Chairman of the Apparel would like to see personal assistance introduced in Russia.

Report from Independent Living seminar in Stockholm 2009: Networks on Personal Assistance and Public Transport Access

Dr. Adolf Ratzka.  2009.  Report from Independent Living seminar in Stockholm 2009: Networks on Personal Assistance and Public Transport Access.
English
During the weekend of November 14-15 2009, before the European Union's Equality Summit, the Independent Living Institute hosted an international seminar in Stockholm with participants representing Independent Living organisations from Finland, France, Iceland, Ireland, Norway, Slovenia and Sweden as well as the European Network on Independent Living, ENIL. We discussed the need for starting a Europe-wide network on personal assistance. Participants analysed the issues facing personal assistance users across Europe today as well as the tools and resources at our disposal for meeting them.

The role of relative helpers in the Swedish personal assistance system

Jaillet, C.  2009.  The role of relative helpers in the Swedish personal assistance system.
English
In most European countries the most common assistance for people with disabilities is provided by relatives, we can easily understand that this system has weaknesses. The trustful relationship makes it work but : -family members, especially parents, are getting old and can't help eternally their child or relative with disabilities -children that help a parent with disability have to handle with too much important responsibilities and too young -relationship partners can't sacrifice their career for the other and can't fear to sign for a life-long 24hour job -assistance with filial feelings most of the time leads to unequal relation -hiring external assistants is considered as an abandonment if relatives worked before as assistants

Een model voor een nationale politiek inzake persoonlijke assistentie."

Dr. Adolf Ratzka.  2004.  Een model voor een nationale politiek inzake persoonlijke assistentie.".
Dutch
Het beleid dat hier wordt voorgesteld is anders, omdat het werd uitgeschreven door mensen die zelf dagelijks op assistentie van andere mensen zijn aangewezen. Het Europees Centrum voor Excellentie in Persoonlijke Assistentie, ECEPA (www.ECEPA.org), bestaat uit acht partnerorganisaties in acht Europese landen die worden bestuurd door personen met een handicap en gespecialiseerd zijn in de belangenverdediging en adviesverlening inzake persoonlijke assistentie voor personen met een ernstige handicap. Door gebruik te maken van onze persoonlijke ervaringsdeskundigheid en van de ervaring die reeds werd opgedaan met het beleid inzake persoonlijke assistentie konden wij een lijst vaststellen van de essentiële kenmerken waaraan zodanig beleid moet voldoen om zelfbeschikking en volwaardig burgerschap voor personen met ernstige handicaps te bevorderen.

Richtlinien für eine beispielhafte nationale Gesetzgebung für persönliche Assistenz

Dr. Adolf Ratzka.  2004.  Richtlinien für eine beispielhafte nationale Gesetzgebung für persönliche Assistenz.
German
Der hier vorgeschlagene Ansatz geht andere Wege, weil er von Personen erarbeitet wurde, die selber im täglichen Leben auf die Unterstützung anderer angewiesen sind. Im Europäischen Kompetenzzentrum für Persönliche Assistenz, ECEPA (www.ecepa.org), sind acht Partnerorganisationen (1) aus acht europäischen Ländern zusammen geschlossen. Diese Organisationen werden von Menschen mit Behinderungen geführt und sind darauf spezialisiert, Assistenzdienstleistungen für Menschen mit erheblichen Behinderungen durchzusetzen und anzubieten.

Model National Personal Assistance Policy

Dr. Adolf Ratzka.  2004.  Model National Personal Assistance Policy.
English
Using our combined personal experience with personal assistance policies a list of features was compiled for a policy that is to promote self-determination and full citizenship for persons with extensive disabilities. The suggested policy is designed to:
  • establish the right to direct payments of assistance services for as many assistance users as possible,
  • enable as many assistance users as possible to exercise the degree of control over their services which they prefer at any given situation in their lives

La place des aidants familiaux dans le système d'assistance personnelle suédoise

Jaillet, C.  2009.  La place des aidants familiaux dans le système d'assistance personnelle suédoise.
French
Si dans la plupart des pays européens, la forme la plus répandue d'assistance est fournie par les proches de la personne en situation de handicap, on peut aisément comprendre les limites de ce système. La relation de confiance fait que ce système peut fonctionner, et pourtant : - les membres de la famille de la personne en situation de handicap à haut degré de dépendance, les parents notamment, vieillissent et ne peuvent pas indéfiniment être les assistants de leur enfant-adulte,

The Economics of Independent Living

Zarb, Gerry.  2003.  The Economics of Independent Living.
English
Gerry Zarb is a Policy Analyst at the Disability Rights Commission in the UK. He was formerly Disability Programme Director at the Policy Studies Institute. He has extensive research and consultancy experience on a range of disability issues, with a particular interest in independent living.

25 years of Independent Living in Sweden- Documentation - Susanne Berg on STIL

English

Panel discussion: Models, milestones and achievements by the Swedish Independent Living organisations, Susanne Berg, November 8 2008.

STIL is the oldest Independent Living organization in Sweden. The organization started the Swedish movement and therefore has worked the longest with the Independent Living model.
 
At the conference in 1983 the Independent Living movement was presented by Ed Roberts and Judy Heumann among others. It was presented as a movement with two sides, two legs.

IL 25 years Documentation - Bengt Westerberg

Westerberg, Bengt.  2008.  IL 25 years Documentation - Bengt Westerberg.
English
Speech by Bengt Westerberg, chair of Swedish Red Cross and former Minister of Social Affairs, 2008. 22 years ago I met with Adolf Ratzka for the first time. I was then a politician, the leader of the Liberal party in Sweden, Folkpartiet and had welfare policy for disabled people high on my agenda. Adolf and Bengt Elmén, who also was present when we met in 1986 and who is present here today, told me about the social experiment they had initiated in Stockholm and some other municipalities to substitute the conventional social services provided by the local authorities with personal assistance.

25 år Independent Living - Dokumentation

Independent Living Institute.  2008.  25 år Independent Living - Dokumentation.
Swedish
Internationell konferensen i november 2008 för att fira 25 år av Independent Living i Sverige. Dokumentation från konferensen: Välkomstanförande, tal av Bengt Westerberg, Adolf Ratzka med mera.

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