ULOBA - cooperative on personal assistance - was founded in 1991. We were five disabled people who started the cooperative.
(1) History.
We got just a few contracts the first five years. There was a major scepticism to the whole concept, but of course especially to self-direction. Disabled people and even people with extensive disabilities, being in charge of their own assistance and responsible for their own assistants, many people thought this was irresponsible!
Even though the first few years were hard, but the five of us were dedicated. We knew on our own bodies how important self-direction is. We had all been dependent on our families and the municipal services. We were fighting to get control in our own lives – some of us still do because we have not got personal assistance through the cooperative as we want. The municipalities deny some people to gain control over their own lives for some reason…….
In Norway, we have a Governmental Plan of Action for Disabled People. We managed to get personal assistance in this plan as a test program, already in 1994. This meant that some money were labelled to municipalities which agreed to try this way of organising assistance, for disabled people who wanted control. That was our first national triumph.
Some researchers found self-direction very interesting, and since this was a new idea, they got research funds to study our Independent Living thinking, self-direction and personal assistance. They still do research on us, and that is good because their findings are very, very positive.
ULOBA has (in 2007) 750 work leaders (disabled people who organise their own assistance) and are employer for (in 2007) 3500 personal assistants. ULOBA is the only coop of its kind in Norway. This is not according to our plans; we thought there would be established cooperatives in the different regions in the country. Now we know that it takes time, but no doubt this will happen one day.
ULOBA is built on the principals of the Independent Living Movement. STIL (Stockholm Cooperative on Independent Living) was ULOBA`s role model during the initial years. And I cannot stress enough how important role models are.
(2) An independent Living organisation.
I will just remind us of the criterions for being an Independent Living organisation:
Organizations may use the term "Independent Living" only, if all the following conditions are satisfied:
- if they are membership organizations based on democratic principles such as one person - one vote and
- if full membership with voting rights is reserved for persons with disabilities only and
- if the organization as a practice favors disabled persons for positions within the organization for both paid staff and volunteers including the head of staff and
- if the organization as a rule is represented in negotiations, meetings and the media by disabled persons.
Organizations who do not comply with these conditions, but want to use the term "Independent Living" in their work have two years to comply with these conditions.
ULOBA and STIL are controlled and run by disabled people.
From May 2000 personal assistance was covered by law in Norway – mainly because of ULOBA`s work. ULOBA arranged demonstrations, we did lobbying in the Parliament and there were negotiations and communication on all political levels.
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 hold a job, to attend meetings, go to the cinema, enjoy a concert, drink a coffee in a café, go travelling etc. People with ULOBA as the employer for their assistants, recruit their own assistants, train them, make the schedules and are supervisors for their own assistants.
Peer Support and Peer Counselling.
Our work leaders get training and peer counselling from peer trainers in the cooperative and peer support from all the other work leaders they meet in ULOBA. (Peer counselling is more formal than peer support.) ULOBA has 15 peer counsellors who themselves control their own assistance. The peer support and peer counselling in the coop is genuine. Municipalities do not recognize this tool.
(3) ULOBA provides:
- training and meetings for work leaders
- a manual for the work leaders
- peer counselling and support of work leaders and disabled people who want to be a part of the coop
- general information to disabled people, families and professionals
- seminars, lectures
- a forum for personal assistants
- a manual for personal assistants
- web site ( www.uloba.no )
- magazines, pamphlets
ULOBA has a good team of disabled experts who play an important part in the development on personal assistance. We want personal assistance to be an individual legal right for people who need assistance, and included in the social insurance legislation, like it is in Sweden.
ULOBA wants to keep the definition of self-direction high. The support for personal assistance is good just because the satisfaction with the service is so good compared to the municipal services. But there are plenty of people who want to soften the impact of self-direction or consumer control. Therefore ULOBA has tried to identify the most important elements to secure the control of the assistance in the hands of the disabled person.
(4) Five guidelines to personal assistance.
- Assessment from the responsible authority must include hours to all activities the disabled person needs assistance to do, for instance go shopping, personal hygiene, read the mail, taking care of the house, going to work, leisure activities etc.
- Disabled people must be able to use their assistance as they like within a defined period of time.
- There has to be a clear delegation of responsibility to the disabled person (work leader) from the employer.
- Training people to become good work leaders for their assistants, are very important, just as peer counselling and peer support. The employee`s interests must be taken good care of.
- The work leader must be in charge of recruiting new assistants, and responsible for training them. The work leader must also have the possibility to fire assistants who do not function as agreed upon.
The Independent Living-philosophy.
The Independent Living-philosophy is an alternative to medical dominance over disabled people. In British terms the social model against the medical model.
Three important concepts in the Independent Living-philosophy are
1) de-institutionalisation
2) de-professionalisation
3) de-medicalisation
These three concepts are some times hard to keep apart, because they are quite intertwined in our lives. The main thing is that they are all very important on our way to achieve equal opportunities – becoming equal to non-disabled people in society.
We do not want to live in institutions, not even institutional settings, but in mainstream together with non-disabled people. A diverse society is best for all of us.
The paternalistic professional hierarchy is not good for anybody. We are ourselves the best experts on our lives.
De-medicalisation is one way to fight discrimination of disabled people. Medicalisation - being looked upon as sick, is no advantage for anybody what so ever – if it is not a temporary situation of course, and you want people to feel sorry for you, till you recover.
The medical world and its professions have their own ideas about what it means to be healthy - which they share with WHO – and it is: absence of physical, psychological and mental illness. In this definition we - as disabled people - will never be categorized as healthy. This is a hopeless way of thinking for us since we will be disabled all our lives, and still of course want to live a full and good life. We need a more offensive approach like what we find in the Independent Living philosophy: Only we ourselves are experts on our lives.
In ULOBA, we have found words as part of discrimination. We need new words that do not include prejudices towards disabled people. We are fighting words in Independent Living-Norway. We do not like user; it sounds passive and receiving. Trying to get rid of the medical sector`s thinking about us – as helpless patients, clients etc. – we in the coop use words from the labour marked when it comes to personal assistance; for instance work leaders – work schedule – work description – responsibility for the employees etc.
We do not want to be objects for all the different professions in the medical sector. We want to be subjects in control of our own lives, and taking part in the mainstream of the society.
