WHO European Conference: Better Health, Better Lives: Children and Young People with Intellectual Disabilities and Their Families

26 November 2010, Bucharest, Romania

Ladies and gentlemen,

It is a great pleasure to be together with all of you here in Bucharest.

I warmly welcome the representatives from our Member States. I would like to thank Mr Cseke Attila Zoltan, Minister of Health of Romania and the Romanian Government for hosting this important Conference.

I am delighted to be joined by my colleague, Mr Steven Allen, the Regional Director for Central and Eastern Europe and the Commonwealth of Independent States of the United Nations Children’s Fund (UNICEF), who has been our partner in the organization of this Conference, and representatives from the European Commission.

I am particularly happy about the presence of so many self-advocates and their families, and the many representatives of children and families’ organizations, and providers of social and educational services and other nongovernmental organizations (NGOs).

All of us share a commitment to health of children and young people with intellectual disabilities and their families. As a sign of this commitment, we are ready to sign a declaration, carefully drafted by a broad coalition of stakeholders, reflecting the long and hard work of many people from Member States, partners and experts from all over the WHO European Region.
What unites us is that we care, and that we want the highest attainable standard of health for these children and young people. The WHO Constitution states that this is a fundamental right of every human being, without distinction of race, religion, political belief or economic or social condition.

This right is also reflected in the relevant United Nations conventions. The Convention on the Rights of the Child stresses the rights of all children, including those with intellectual disability, to be raised by their families and to have access to all the services and support they need to develop to their full potential.

The Convention on the Rights of Persons with Disabilities makes it very clear that people with disabilities have the same fundamental rights and fundamental freedoms as all of us. Importantly, in its first paragraph on the definition of disabilities, it specifically includes people with long-term mental and intellectual impairments.

The Convention also emphasizes the importance of the interaction of impairments with various barriers that may hinder full and effective participation in society. The WHO Constitution, adopted in 1946, is at one on this with the Convention on the Rights of Persons with Disabilities, when it expresses that “healthy development of the child is of basic importance: the ability to live harmoniously in a changing total environment is essential to such development”. For no group is this more true than for children with intellectual disabilities. This powerful statement, still completely valid, and is totally in accordance with my personal vision, the work programme of the WHO Regional Office for Europe and of course with the purpose of this event and the declaration.

The point has to be made strongly that intellectual disability may too often be hidden, but it is not rare. It is a common part of life. Depending on how we define and identify these children, we find that about 1–3% of children in the European Region have intellectual disabilities. Today, there are about 5 million intellectually disabled children in Europe, with the majority living in poorer countries. Many more people are involved in caring for them, most of them family members. We have strong evidence-based arguments for supporting the improvement of prevention, early intervention, education and social services, and its impact on quality of life, and this evidence will be presented to you later today by experts.

These children are often excluded from the community, from development activities, from what we call normal life. Too many European children still live in institutions: according to some estimates, about 320 000 children. We know that institutional care generates risk factors to health such as poor diet and feeding, poor and inadequate personal care, and lack of stimulation, attention and emotional support. And disabled children in institutions are generally vulnerable to abuse or exposed to aversive and punitive interventions. There is also much evidence that early institutionalization continues to have a negative impact as children grow into adults. For example, a study found severely reduced life chances for adults who had spent their childhoods in institutions: up to 20% had a criminal record; 14% ended up as sex workers, and 10% committed suicide.

This is why deinstitutionalization and services in the community that support family living are priorities, and I would like to congratulate the countries that have made considerable progress in this area, although we all agree that much more needs to be achieved. But making children live in the community with families is not a simple and easy solution. Families face a number of challenges in looking after their disabled children. They too often live in poverty, suffering from stigma and discrimination, with only limited support provided, resulting in yet greater inequalities.

However, effective interventions are available. This is part of a broader agenda that has become a special focus of our work at the WHO Regional Office for Europe and is very close to my heart. 
We know that, across Europe, there are persistent differences in the opportunity to be healthy. There are also differences in the risk of illness and premature death between social groups, even when living in the same country. People with intellectual disabilities sadly make a striking case. Many suffer from poorer health, and have a shorter life expectancy than their peers. This is true for higher-, middle- and lower-income countries alike. Differences in health and life expectancy are very large across the European Region, and none of you will find this acceptable. The report issued in 2008 by the global WHO Commission on Social Determinants of Health, led by Professor Sir Michael Marmot, signalled the imperative need to act on inequalities. It set out the evidence on how health and the risk of poor health follow a pattern according to job status, housing and living conditions, as well as social capital, community cohesion and access to affordable and appropriate health services.

For people with intellectual disabilities, gaining access to health services can pose a challenge. If access is gained, too often the health problems are not identified and, if identified, they can be neglected as a consequence of stigma and discrimination or lack of adequate services with competent staff. Many of these issues are also challenges for other sectors, civil society and governments overall. We already have growing evidence of how well-planned and -implemented programmes that address social and economic factors, in addition to individual knowledge and skills, have a great impact on health. For this reason, I have launched an independent review of social determinants focusing on the challenges and opportunities in the European Region. This will be incorporated in Health 2020, our new health policy framework for Europe, which will focus on the multifactorial determinants of health and the multisectoral roles and responsibilities required to tackle them. This has, of course, the highest relevance to the most vulnerable groups in society, including children with intellectual disabilities and their families.

The capacity and efficiency of health systems must also be considered, especially in present times. All of the Member States in the European Region are concerned with demonstrating value by improving performance and reducing costs, while maintaining the values that underpin the European health systems, namely: solidarity, equity and participation. It has to be realized and accepted that children with intellectual disabilities require not just the same resources, but higher investment, to reach similar benefits and opportunities as other children. They also require comprehensive and integrated services, and partnerships between sectors such as health, education and social services also need to be inspired by principles of equity, which is also rightfully one of the foundations of the Convention on the Rights of Persons with Disabilities.

The WHO Constitution, the Convention on the Rights of Persons with Disabilities and the work on social determinants have all inspired the fundamental principles that led to this Conference and the drafting of the Declaration, which we will endorse and sign later this morning. To summarize some of the key challenges, we need to offer these children and their families the optimal quality of life by promoting and supporting physical, mental and social well-being. We need to eliminate inequalities and discrimination in health and other areas. We should also prepare for children’s growing up and offer them continuing support throughout life transitions, according to their needs.

This Conference and the declaration mark an important step towards helping intellectually disabled children lead healthy, normal lives, by providing them with opportunities to live in the community with their families, attend schools and contribute to their communities and societies. We should remember that they are like any other children in that, with appropriate opportunities and support, they can grow up to live full, healthy lives.

The partnership of Member States, experts and NGOs, including self-advocates, that produced this declaration is very powerful. Now, WHO is committed to deliver on its commitments. These include the vision and leadership on the functioning of health systems for this vulnerable group. We will provide technical support to our Member States, and will continue our partnership with UNICEF and other United Nations agencies and partners. We will support research that will improve the quality of life and monitor the health status of children with intellectual disabilities and their families.

As we all agree, the aims and tasks are ambitious and complex. But while they pose certain challenges, they also provide a great opportunity we all believe has to be taken on, and this why we are gathered here today. I believe now it is time to take forward the priorities of this declaration and act upon all our joint commitments hand in hand, in strong partnerships.

Thank you.