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.
Given the increasing number of older persons relative to the working age population, record level taxes and baby boomers’ demands for self-determination and quality of life, which changes might the Scandinavian welfare model have to undergo in order to deliver long term care to all who need it? In Sweden, direct payments for personal assistance are paid to mainly younger persons with extensive disabilities. In terms of perceived quality and cost per hour of service, direct payments have been found to be more efficient than traditional local government services. But would this favorable experience hold for all persons in need of assistance with the activities of daily living – regardless of age, diagnosis and minimum needs? What would be such a policy’s cost and effects on the labor market? How could it be financed? Would it threaten younger disabled persons’ relative favorable present situation? Today’s Swedish policy of cash payments for the purchase of personal assistance services might be of interest as a long term care solution for tomorrow’s older persons.
The Independent Living Institute (ILI, Sweden) Sweden has written this report on Personal Assistance in Sweden for the Expertise Centre Independent Living, Flanders, Belgium.
We gave ILI a list containing questions and topics on hot issues in Flanders. What is the legal framework? How does the assessment take place? What is the assistant's statute? What are the experiences with private enterprises? In this report, Kenneth Westberg answers these questions. He has written this report under the guidance of PhD. Adolf Ratzka.
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Municipal contracts should be based on the Norwegian Standard and the basic philosophy of user-controlled personal assistance, with the user as supervisor and the freedom to use assistance hours at any time. The upcoming legislation for user-controlled personal assistance (Brukerstyrt personlig assistanse, BPA) should cover everyone regardless of number of hours needed or diagnosis. These are the demands of Bente Skansgård at ULOBA, Norway’s largest assistance cooperative.
Interview with Jan Andersen, Lillehammar University College, Norway on November 17, 2011
Norway is discussing whether or not to pass legislation about user-controlled personal assistance. Researcher Jan Andersen at Lillehammer University College, who has conducted research on user-controlled personal assistance since its inception, sees problems because legislation would only apply to users with more than 20 hours/week. He also comments on the changing assistance market, with the entrance of private companies and municipalities contracting out assistance to keep costs down.
In Norway, JAG Assistanse has four users to date, but after gaining approval as a BPA provider (Brukerstyrt Personlig Assistanse or user-controlled personal assistance) from 15 municipalities, operations manager Sidsel Maxwell Grasli expects strong growth. At the same time, she fears that JAG’s target group will be let down by the upcoming Norwegian legislation for user-controlled personal assistance.
Switzerland is on the brink of a breakthrough: it will offer nationwide direct payments for personal assistance beginning in January 2012. Over the next few years, 3,000 people with disabilities are expected to receive this assistance benefit.
The October 1 2011 article Dismantle Europe's inhumane institutions in the daily newspaper Göteborgsposten urges European countries to provide people with disabilities with personal assistance and assistive devices, rather than relegating them to institutions.
According to the Swedish Members of the European Parliament at least 1.2 million people live in institutions in the EU and Turkey, which they consider to be contrary to the UN Convention on the Rights of Persons with Disabilities.
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.
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.