Uloba - Independent Living Norway Cooperative for Consumer controlled Personal Assistance

Presented at the European Network on Independent Living (ENIL) conference in Southampton, England, 7-9 March 2003. Internet publication URL: http://www.independentliving.org/docs6/uloba200303.html

 

Uloba logo

 

Uloba - cooperative for consumer controlled personal assistance - was founded in 1991. We were five pioneers who started the cooperative, now (2003) we are 300 work leaders employing 1 700 personal assistants. Uloba is the only coop of its kind in Norway. Uloba is built upon the principals of the Independent Living Movement. We fight institutions, medicalisation and professionalisation every day. Peer support and peer counselling is our method. STIL (Stockholm Cooperative for Independent Living) was Uloba`s role model during the initial years.

Starting in May 2000 Consumer controlled personal assistance was covered by law in Norway – mainly because of Uloba`s work. Uloba has done some pioneer work in fighting for consumer controlled personal assistance. Even though personal assistance is covered by law in Norway, it is not an individual legal right as in Sweden. It is included in a framework of laws covering all social rights. Having consumer control is still an individual negotiation with the local government for every single disabled person. And the municipalities (not the disabled person) have the right to decide between three employer models:

  1. the disabled person him or herself is employer, (consumer control, lots of paperwork, no peer support)
  2. the municipality is employer, (very limited consumer control, the paperwork is done by the municipality, no peer support, interference from professionals)
  3. Uloba is employer, (consumer control, peer support, peer counselling)

Very few people have information about the three models and the municipalities often regard themselves as the most professional employer.

Municipal services are established in all municipalities – 434 in all - and organized with a focus on sick, old people. The services are designed for sick people who stay home waiting for services to take care of their basic needs. With municipal services you are homebound. Disabled people are not sick people who want to stay at home waiting for basic assistance.

It is hard to make professionals and politicians realise that people with disabilities need to be in control of their own assistance in order to be in control of their lives. Disabled people need control over their assistance to work, attend meetings, enjoy concerts, cinemas, cafés, week-end-trips, holidays etc. Those who have Uloba as employer for their assistants, recruit their assistants, train them, make the schedules and are supervisors for their own assistants.

The Future for Consumer Controlled Cooperatives

Uloba has a good team of disabled experts who want to play an important part in the development of consumer controlled personal assistance in Norway. We want it to be an individual legal right for people who need assistance, and included as part of public social insurance like it is in Sweden.

Peer Support and peer counselling

Our people (the work leaders) get education and peer support from peer trainers in the cooperative. Uloba has 15 peer counsellors who themselves have consumer controlled assistance; they are spread all over the country. The peer support and peer counselling in the coop is genuine, Uloba has:

1. work leader courses and meetings
2. counselling and support of work leaders and disabled people who wants to be a part of the coop
3. general information to disabled people, families and professionals
4. seminars, lectures
5. forum for assistants
6. work leader manual
7. assistant manual
8. web site (www.uloba.no)
9. magazines, pamphlets

Anti-discrimination Legislation

A governmental committee (2002) has documented handicapping elements in society. There is a big gap between political aims and the present design of buildings and the public environment, information and communication technology as well as transportation. There is a long way to go before Norway has the universal design which has been included in political aims since 1981 – the UN’s international year for disabled people. The governmental committee calculated the cost to include disabled people – and the figures were large. Transportation for instance calls for immense investments. But the most important advice from the committee was that Norway needs an anti-discrimination legislation to be able to give equal opportunities to all citizens.
The disabled movement was thrilled by this suggestion, so a united movement now follows the political process very closely.

The government decided to follow up with a legal expert committee. This committee will within two years complete their recommendations both according to the general legal coverage and the need for an anti-discrimination legislation.

Uloba has founded a separate body (2002) to influence the process towards an anti-discrimination legislation, and to safeguard that intentions remain high in the political process. The foundation is called Stop Discrimination and the web-address is www.stopdisk.no.

English