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.
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. 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 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.
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.
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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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.
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.
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.
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