1. Mental Health Programme WHO Europe Initiative on Health of Children and Young People with Intellectual Disabilities and their Families Dr Matt Muijen Regional Adviser for Mental Health Bristol 14 May 2010

2. Mental Health Programme WHO Regional Office for Europe

3. Mental Health Programme World Health Organization WHO was established in 1948 by 61 governments to promote health of all people The WHO Constitution was ratified on 7 April – World Health Day WHO is a specialized agency of the United Nations (unlike UNDP, UNFPA, UNICEF, etc.) Today there are 192 Member States

4. Mental Health Programme WHO Regional Offices PAHO EURO AFRO EMRO SEARO WPRO Americas, Europe, Africa, Eastern Mediterranean, South East Asia, Western Pacific

5. Mental Health Programme WHO’s mission is global and permanent “The mission of WHO is the attainment by all peoples of the highest possible level of health” WHO’s Constitution

6. Mental Health Programme Health is more than physical “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” WHO’s Constitution

7. “More than 1.45 m people with disabilities in Europe live in residential care, 70% in services with over 30 places.” Residential services in Europe – findings from the DECLOC study Across the EU there are some 150,000 children living in residential care settings Report of the Ad Hoc Expert Group on Transition from Institutional to Community-based Care At least 317,000 children with disabilities in the region live in residential institutions, often for life. Innocenti Insight, Children and Disability in Transition in CEE/CIS and Baltic States

8. children with disabilities in institutional care (Data from Innocenti Insight, Children and Disability in CEE/CIS and Baltic States) CEERates per 10,000 of relevant population CISRates per 10,000 of relevant population 1990200219902002 Slovenia 2320 Belarus 6860 Czech Republic 3142 Ukraine 2818 Hungary 1110 Russia 6465 Croatia 1922 Georgia 1219 Poland 1921 Moldova 10358 Slovakia 20 Armenia 1.54.5 Lithuania 8047 Kyrgyzstan 15 Estonia 1536 Uzbekistan 1415 Latvia 716 Tajikistan 16 Bulgaria 6782 Kazakhstan -6 Romania 102 Azerbaijan 2116 FYR Macedonia 1911 Serbia and Montenegro 38-

9. CountryPlacesChildrenID Belgium25750694013345 Bulgaria1326947528482 Czech66865329216047 Denmark6208123673 Estonia2242111341945 Finland1803241812532 France224827108903107188 Ireland93693178073 Italy1172411041 Latvia1346358192405 Poland73741195717294 Portugal114221002360 Romania327836117040 Sweden295781315 Turkey94949922805 UK129548244546877 Total1186962180702264968

10. Mental Health Programme Why priority for WHO Failure of health care for CID in European society associated with: Barrier to full enjoyment of human rights, including right to highest attainable health Discrimination and abuse Obstacle to development Exclusion from society

11. Objectives of initiative Awareness raising Identify national challenges Create opportunities Initiate partnerships Disseminate best practice Support sustainable activities Mental Health Programme

12. Major challenges 1 Neglect, abuse and discrimination Instances in institutions and the community Overreliance on long stay residential institutions poor living conditions, low quality care, lack of educational opportunities national de-institutionalization strategies variable Lack of community services number of children with ID in community increasing No adequate increase in community support services

13. Mental Health Programme Major challenges 2 Under-serving the health needs of CID: Poor knowledge and training of health staff on disability issues (prevailing medical model of disability) Communication difficulties Negative attitudes Poor intersectoral collaboration

14. Major Challenges 3 Lack of reliable health monitoring data. “ It is essential that we understand that this statistical neglect.... is indicative of a major failure to recognize and support this group that has led to a massive hidden population of children and adults with ID who are unknown to the official systems.” (Background Paper ) Mental Health Programme

15. Aim of WHO 1 To ensure that all children and young people with ID are fully participating members of society, integrated in the community, receiving appropriate health care and support, proportional to their needs.

16. Mental Health Programme Aim of WHO 2 To offer specific contribution to the implementation of the UN Convention on the Rights of Persons with Disabilities and other relevant European commitments, including the CoE Disability Action Plan (2006-2015), the EU Disability Action Plan (2003-2010), and the WHO Disability and Rehabilitation Action Plan (2006-2011)

17. Mental Health Programme Project Coordination Managed by WHO Europe Declaration supported by a multi- stakeholder Steering Group, chaired by Professor Sheila Hollins In partnership with Member States’ representatives In cooperation with the UNICEF, (the European Commission, the Council of Europe), and NGOs

18. Mental Health Programme Outputs A Declaration on Children and Young People with Intellectual Disabilities and their Families, stating the priorities and responsibilities. An action plan, specifying evidence based interventions. A Background Paper, identifying key issues and challenges, good practice examples and ways forward. A set of Expert Papers to form a resource bank for developing national action plans.

19. Declaration Statement of vision and intent Responsibilities Member States and WHO Role partners Balance political and technical aspects Endorsed by signatories Mental Health Programme

20. WHO and Health of Children with ID Health Needs Combination of most vulnerable groups Concern of Member States Commitment funders: –Shirley Foundation –Romanian Govt.

21. Mental Health Programme Follow up WHO Europe is committed to: Offer leadership on the role and functioning of health systems Engage in partnerships with other agencies to facilitate the implementation of the Declaration Provide technical support to MS to promote quality in service provision and to establish sustainable capacity

22. Mental Health Programme Timeline Initiative planned-April 2008 Romanian offer to host-June 2008 1st Steering Group meeting – February 2009 Consultation meeting with international NGOs – December 2009 Pre-meeting of MS representatives – March 2010, hosted by the Serbian Minister of Health, Belgrade High-level Conference – 26-27 Nov 2010, Bucharest

23. Challenges Leadership Fragmentation Conceptualisation Evidence base Stigma Social determinants Political priorities

24. Mental Health Programme Social Determinants of Health Exposures vulnerabilities Differential health status Social stratification

25. Lack of priority? Lack of power! Mental Health Programme