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.
User-controlled personal assistance is regulated under the Norwegian Social Services Act 4-2 and 8-4, which states that the municipality must offer user-controlled personal assistance as part of its social services. Municipalities can now decide who is allowed to employ the assistants. Procurement processes have become increasingly common in which companies submit bids and win contracts to be the user-controlled personal assistance employer in the municipality.
ULOBA feels that contracts in the municipalities can only be signed with non-profit organizations or with Service Concessions where the municipality sets qualification requirements that non-profit organizations or private companies must meet. According to Bente Skansgård, these requirements should be formulated so that assistance users can control their own assistance after receiving supervisory training and counseling.
“Assistance users should also be able to schedule the assistance hours freely during the year.”
In August this year a Norwegian standard was published for what user-controlled personal assistance would entail. According to Bente Skansgård, ULOBA, other assistance companies/cooperatives in the industry and Oslo municipality helped to formulate the standard.
“If the requirements of the Norwegian standard for user-controlled personal assistance are met in a contract then we will be satisfied.”
ULOBA withdrew from the contracts in Vestregionen’s 14 municipalities in part because of requirements for transparency into people’s private lives. Now ULOBA is encouraging its members to become employers of their assistants in Vestregionen.
“The Board of Directors of ULOBA could not accept that the user has to apply for assistance hours used in evenings and on weekends afterwards. People should be able to divide the hours as they see fit.”
Bente Skansgård believes that private participants who did not react lack a political opinion of user-controlled personal assistance as a tool for equality between people with disabilities and people without disabilities.
“They are motivated by profit, not independent living.”
Jan Andersen, researcher at Lillehammer University College, has expressed concerns that a growing percentage of private companies within user-controlled personal assistance could cause it to resemble home help services. Bente Skansgård agrees.
“It is good that municipalities are becoming more aware of the cost increases, but it is a major drawback if user-controlled personal assistance is watered down to a service that anyone can offer since it provides support like other municipal services. Assistance users are at risk of losing their supervisory responsibility as well as control over assistance costs. The private economy of assistance users would soon put an end to what they can do, for example, on holiday.”
According to Bente Skansgård, reducing costs is the main purpose of municipal user-controlled personal assistance contracts, but she does not believe that they succeed in doing so.
“If private companies take over the arrangements, it may be less expensive at first, but prices will rapidly rise if the quality of the support is to be maintained, which municipalities have promised. Otherwise there is a risk, just as we have seen in private nursing homes, that quality will decline with the entrance of private players onto the scene.”
The Norwegian Storting is considering a proposal for legislation for user-controlled personal assistance, but it is not clear when it will be adopted. Jan Andersen has previously criticized the proposal because currently the legislation would not cover those who have fewer than 20 hours. Bente Skansgård agrees with Jan Andersen that user-controlled personal assistance could be watered down as a result.
“If user-controlled personal assistance is only provided to people who need more than 20 hours of assistance per week, many ULOBA members will rebel. We want all personal assistance users to be entitled to this right. Otherwise it will be like in Sweden, where the Swedish Social Insurance Agency (Försäkringskassan) provides a different quality of assistance to those whose basic needs require more than 20 hours/week, compared with those who receive assistance from the municipalities.”
Minister of Health Anne-Grete Hjelle Strøm-Erichsen has said with reference to Sweden that the legislation would cost NOK 18 billion/year, while a group in the Storting estimates NOK 1 to 2 billion; I ask Bente Skansgård about the large discrepancy between these estimates.
“No one has carried out any serious calculations, but the Ministry is working more to keep costs down than to provide equal opportunities for citizens.”
According Jan Andersen, about 260,000 people have social care services in Norway, of whom about 2,300 receive user-controlled personal assistance; I ask Bente Skansgård how many she believes could be covered by user-controlled personal assistance.
“It’s hard to say, but maybe three percent or 8,000 would be reasonable. That would mean as many assistance users in relation to the population as in Sweden. However, we do have a need-driven definition of who is entitled to user-controlled personal assistance, rather than a medical definition, as is found in the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (LSS). It is also crucial that recipients of user-controlled personal assistance are willing to assume the supervisory responsibility personally or to do so with the help of a co-supervisor.”
User-controlled personal assistance for assistance users with co-supervisors
Jan Andersen has expressed concerns that user-controlled personal assistance could be watered down if too many users are unable to act as supervisors. However, Bente Skansgård disagrees; she believes that people who are unable to serve as supervisors can still qualify for user-controlled personal assistance if they receive support from a co-supervisor.
“ULOBA has about 400 members who need effective co-supervisors. They follow the same rules as those of us who personally serve as supervisors. Everyone should be able to participate in society and not be marginalized and declared ill,” says Bente Skansgård.
Bente Skansgård was interviewed by Kenneth Westberg on Dec. 30, 2011