State Secretary Hans Olav Syversen, Ministry of Children and Family Affairs, Norway

Closing speech

Conference on Human Rights – Disability – Children, hosted by the Council of Europe

Strasbourg, 8. – 9. November 2004

Ladies and gentlemen, friends,

It has been a great pleasure for me to take part in this conference on behalf of the Norwegian Chairmanship of the Committee of Ministers of the Council of Europe.

In these last two days we have been together here to discuss policies towards equality of opportunity for people with disabilities. The main focus has been to identify policies and good practice that protects and promotes the rights and dignity of children with disabilities, a society which allows them to fully participate.

We have been presented to, and discussed, the European human rights framework for disability policies, and have particularly focused one central theme in present day disability policy; deinstitutionalisation. And we have seen that these topics are reflected in the ongoing processes both in the international convention and in the Council of Europe action plan.

Deinstitutionalisation has also been the theme in workshop 1, because this is a major challenge – we all know that institutional thinking is alive in all European countries, even though some countries have stronger tradition for large institutions than others do. We have to have alternatives! Not just to shut down – we need adequate alternatives.

In workshop 2 we have looked deeper into the lives of disabled children and their families. And again, we have focused on disabled children living with their families, not in institutions. The future of these children is fundamentally influenced by the attitudes that we all have towards disability. We want an inclusive society, and we must focus on all potentialities that the individual child has and concentrate on abilities rather than disabilities!

I must say your statement, Miss Margiafico, on yesterday's workshop, made a great impact on me.

The UN Convention on the Rights of the child gives children with disabilities their own human rights. According to article 23 of the convention a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community.

Most adults want to do what’s best for the child. Still, adults often fail to ask the children what they think is best for them. This summer, Norway hosted The 8 ^th> International Congress on Including Children with Disabilities in the community. The success of the conference was due to the fact that young people themselves were active participants at various stages of the planning process and in drawing up the declaration. Young people, some of them with severe disabilities, were eloquent speakers in the plenary sessions as well as in workshops, and in meeting points. The young people who met at the conference still have follow-up meetings on their Internet web-site. This once again proves the importance of contributions by children and adolescents in all issues related to their participation in society.

Sustainable policies for the family in all its forms are conductive to a safer environment and sound upbringing of children. I would like to use this opportunity to highlight one specific topic families often mention as a huge challenge in their everyday life: Children with reduced functional ability often require assistance from various parts of the public help system. They will need measures and services in several areas: Health services, medical help, physiological support, physiotherapy, technical aids, social services, special-education help, child day care services and school services, financial support schemes, transport, etc. This means that the families have to be in contact with several service systems. Families often experience that they themselves have to administer and coordinate the measures relating to the child. This takes time and resources and is often experienced as an extra burden on the families.

It is therefore of great importance to provide services to these families which are well coordinated and adapted to their needs, so that the families are made capable of caring for the child. Another very important consideration is that families, through the coordinated services, should have the opportunity to enjoy a social life outside the family, and should be given the opportunity to take part in working life.

In this context I would like to mention two interesting measures we find encouraging in Norway, and in which my ministry support financially and increased for 2005. The first one is help and support to families, also families with children with reduced functional ability, through a parent volunteer connected to the Home-Start program. I suppose a lot of you know this family support programme, developed in the United Kingdom, and used all over the world. It can be of great support to families in periods when they could “need a hand”.

The next measure was presented in workshop 2, so I know some of you have learned a lot about it already. But we are quite proud of it, so I take this opportunity to mention it once more: It started as a project baptised “What about us?” - aiming at enhancing communication, strengthening relationships and preventing divorce in families with disabled children. One goal was also to establish and improve the cooperation with other institutions (hospitals, habilitation services, educational services etc).

Therefore we want this to be a permanent programme. Next step; single parents with children with disabilities. We know that there is a heavy demand for these workshops.

One important priority during the Norwegian chairmanship of the Committee of Ministers of the Council of Europe has been reinforcing human rights and legal co-operation as mentioned by our ambassador last night. The discussions the last two days have been an important part of our chairmanship programme. It is also an important part of the work of the ongoing processes within the Council of Europe on protection and promotion of the rights and dignity of people with disabilities.

During these past two days we have exchanged knowledge and ideas about how to dismantle disabling barriers. I believe that we have all learned something of importance that will enable us to strengthen the human rights for children, as well as grown-ups, with disability. As said in the opening speech by State Secretary Kristin Ravnanger, the challenge now is to transform our knowledge and intentions into legal and political documents, both national and international, and thereby create our road maps for an inclusive Europe. With the reference to what Mr. Vladychenko have just said about the need for action. Norway support and have great expectations to further work with Council of Europe Disability Action Plan.

The idea of setting up a small multidisciplinary drafting group seems to be relevant for the following up work, and Norway we will see in what way we can assist you in this matter.

We want children with disabilities to enjoy the same rights as anybody else. Still, many children with disabilities feel humble and not entitled to the same rights as others. In a Norwegian report to the UN Special Session on Children in 2002, young people with disabilities were quoted. A young girl with CP says: “It’s like they think we’ve got nothing important to do. They think we should be happy as long as we’re picked up and taken to some place at a certain time. We’re not supposed to complain.”

Responding to the feeling of being looked at, another girl, 14 years, says: “When people stare, I ask if there’s anything I can do for them. They get so embarrassed.”

This is the last of many important events Norway has hosted during its chairmanship of the Committee of Ministers. Tomorrow our chairmanship will come to its end, and Poland will embark on six months of hard work. I am confident that Poland will follow the line of continuation and lead the work both dynamically and effectively.

As mentioned by Mr. Vladychenko and Mr. Reinertsen, it's important that the subjects we have discussed on this conference can be a part of the 3 ^rd> summit of the Council of Europe in Warszawa next May. I encourage all of you to work trough your channels to promote such an agenda.

I would like to thank the Council of Europe and the Secretariat who have done all in their power to make this conference a success; you have done a splendid job! That goes for the interpreters as well.

Thank you for your active participation and attention!