WHO-conference Oslo, April 22. – 25. 2001

Rethinking Care

Opening address on Sunday, April 22. 2001
by Guri Ingebrigtsen, Minister of Social Affairs.

Introductory remarks.

Dear conference participators, ladies and gentlemen,

On behalf of the Norwegian government I am happy to welcome you all to this global conference, organised by the World Health Organisation and hosted by the Norwegian Ministry of Health and Social Affairs.

"Rethinking care" is the title of the conference – this is a challenge and a necessity and I am certain that your work will be of great value for persons with disabilities as well as for governments all over the world.

You come here from countries all over the world, representing the organisations of persons with disabilities or chronic illnesses, professional organisations and various national health authorities. All six world-regions of the WHO are represented at this conference, making it possible to give the issues and recommendations a broad relevance. It is an honour to host this important event, and it gives an extra responsibility to my government.

As you know, Norway has merely 4.5 million inhabitants. Situated at the corner of the world with the North Pole as our next door neighbour, we feel it is especially important to take an active part in the work of international organisations. This way we can learn from other countries’ experiences, and in return other countries may even have the opportunity to learn from what we have done.

This conference has been prepared by an organising committee, where representatives of the WHO have worked together with the Norwegian State Council for the Disabled, the Norwegian Federation of Organisations of Disabled People and the Norwegian Association for the Disabled and I am happy to say, also representatives of my ministry. In addition, several experts on disability issues have taken part in the preparation of the conference. I would like to thank the members of the organising committee for their efforts to make this conference possible.

The aim of the conference

As I already mentioned, the work of this conference is important. "Rethinking Care" means adopting new perspectives, and accordingly, new practices in rehabilitation and other areas important for the life-situation of people with disabilities and chronic illnesses. The subtitle "From the perspectives of disabled people" is of central importance, as it states the basic element in "rethinking", namely that the quality of services is to be measured as to how they in a positive way contributes to the life situation of the service users – to their possibilities for participation, inclusion and empowerment.

The result of your work here will be put forwards as recommendations for the Health Assembly of the World Health Organisation. Hopefully, and presumably, the outcome of these three days of work will be a significant contribution to make the user’s perspective mandatory in the field of health and social policy all over the world.

The United Nations’ standard rules and national policies

The UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities refer to the responsibilities that governmental bodies have in implementing and evaluating national programmes aimed at the situation of persons with disabilities.

Over the last years several Norwegian policy documents have had the standard rules as their explicit or implicit frame of reference. Two white papers deserve to be mentioned: the white paper on rehabilitation, named "Responsibility and empowerment", and the white paper on People with Disabilities, named "Participation and Equality".

UN standard rule 3 – Rehabilitation: "States should ensure the provision of rehabilitation services to persons with disabilities in order for them to reach and sustain their optimum level of independence and functioning."

The Norwegian white paper on rehabilitation states i.e. that rehabilitation and habilitation must be based on the rights of individuals to define their own goals according to their own values, and that the services provided shall assist and stimulate the responsibilities and efforts of the individuals to gain optimal function and a sense of well-being. Rehabilitation and habilitation must refrain from focusing on diseases and producing passive patient roles. Rehabilitation and habilitation thus implies a holistic and interactive process between the users and the service providers, or as the white paper puts it: " Rehabilitation is a process, or a set of processes, which is planned and limited in time, with well-defined goals and means; where several professions or services co-operate in assisting the individual user in his or her own efforts to achieve best possible functioning and coping capabilities, and promoting independence and participation in society."

An approach such as this implies that the major measures in rehabilitation and habilitation must be based in the local environment of the user – close to the home and the arenas of daily life. Therefore, the local communities have a major role in providing services that support active participation and social integration. An important objective of the white paper is to upgrade local rehabilitation programmes, and to ensure proper co-ordination of relevant services. Also, the white paper focuses on continuity of services from specialist services in hospitals and other specialist institutions, in co-ordination with the services provided at the local level.

A holistic approach in rehabilitation requires both a close co-operation between professionals and a common understanding of the concept of rehabilitation and its implications for practise. Service providers often have a diversity of professional background. However, no profession "owns" the problems to be solved. The user is the "owner", and rehabilitation strategies must focus on his or her individual goals and needs.

Persons with disabilities will often be the users of rehabilitation services. A successful policy is, however, not only dependent on rehabilitation measures. Rather, it must imply measures on a wide range in society. The White Paper on People with Disabilities thus has a broad focus. The white paper’s understanding of disability "is based on a disproportion between the abilities of the individual and the demands from the environment and society for functioning in areas in areas that are important for establishing and maintaining independent and social existence".

A conscious understanding of the notion of disability is important because it affects attitudes, language and which measures and solutions that are chosen.

The White Paper on People with Disabilities is an action plan to make society better for all people, with or without disabilities. The plan refers to a description of society as having built in to it a series of conditions and demands by the ways it is formed. This applies to physical access for instance to buildings, the organisation of transport facilities, the access to cultural activities and leisure time activities.

The guiding principles are: "sector responsibility" and "equal opportunities/ participation for all". This means i.e. that local authorities of the transport sector are responsible for making transport facilities available for all, that authorities in the cultural sector must make libraries accessible for everybody demanding their services, whether they need special measures to do so or not.

The action plan for the disabled is based on the social model of disability where it is seen as a consequence of limitations in the environment. Such a model acknowledges the impairment and its serious individual consequences, but does not accept it as the (sole) reason for disability. According to this it is necessary to bridge the gap between the individual’s abilities and society’s demands to make full and equal participation possible for persons with disabilities.

The Ministry of Health and Social Affairs is now working on a strategy plan for habilitation and rehabilitation built on the principles and goals for this policy field that the Norwegian parliament has adopted. The situation of children in need of special services will have a special focus in this plan, based on the understanding that disabled children and their families need special attention from policy-makers and health and social authorities.

Children with disabilities have the same right as other children to live with their parents, but then the parents must be given the opportunity to take care of their disabled children.

In the Norwegian welfare-system there are several services aimed at families with disabled children. However, sometimes it seems like they have become too specialised and the service-providers too many. For the families it can be too complicated to relate to the professionals and "get the wheels going" in their everyday-life.

As Minister of social affairs I am looking into how we can make services more co-ordinated for these families. On this background, last month, I invited to an experience-conference with parents of disabled children and their organisations. This provided information of great value, as it is always those who have the shoes on that know where it pinches. The statements of the parents and their organisations will be included in my efforts to improve the situation for families with disabled children.

This fall, September 19. - 21., I will participate in the UN Special Session for children, together with at least two other members of the Norwegian government. In this session I will, as a follow-up of our national policy, propose "children and disability" as a main topic for discussion.

Concluding remarks

I am happy to find that a majority of the participants at this conference are persons with disabilities and parents of disabled children. It is you who are the users of health- and social services and thereby should influence policy development and priority settings in matters that affect your lives. As I have argued for earlier, increased participation from persons with disabilities is necessary to make policies better and to secure the rights and needs of the persons concerned.

The concept of "care" is changing, from being in earlier times a question of charity to one of human rights and equal opportunities for all. This has led to a different/new basis for interaction between persons with disabilities and their communities. Participation will be a precondition for the restructuring of health and social programmes.

It is my hope that this conference will contribute significantly to a kind of "rethinking" that is necessary for all of us, whether we are service users, professionals or politicians or two or three of them in combination.

I wish you all good luck with your important work. Thank you for your attention.