1. Luis Salvador-Carulla M.D., PhD Professor of Psychiatry. University of Cadiz (Spain) Secretary Section of Diagnosis, classification and nomenclature, WPA Mental Health Policy Advisor. Dept of Health. Catalonia (Spain) TOWARDS INFORMED POLICY FOR INTELLECTUAL DISABILITIES IN EUROPE BRIDGE 2010

2. POLICY ON INTELLECTUAL DISABILITIES - Expanding information base - Evidence-based vs. Informed- evidence Care - Classification of ID - Bridging & Knowledge transfer

3. EXPANDING INFORMATION BASE - MEROPE- Mental health in ID - IDRESNET- Care for ID in Europe - POMONA- Health indicators in ID - DECLOC- Institutional care for ID - DIS-QOL- Quality of life and care - TRIADD/TRINNODD - Training MH-ID Salvador-Carulla & Garcia, Psychiatry, 2009 INTERNATIONAL PROJECTS (EU – EAHC)

4. EXPANDING INFORMATION BASE INTERNATIONAL ORGANISATIONS - WHO- Atlas of Global Resources for ID - Burden of Diseases (DALYs) - Working Group on ID (ICD- 11 ) - MH-ID- Guidelines for Problem Behaviors - WPA-SPID- Guidelines for Psychotropic use - ABC Guidelines - NADD- MD-ID - Royal College- DC-LD

5. A Priority Issue for WHO Extremely high burden associated with ID, including direct & indirect costs, and associated conditions Services drastically under-resourced in relation to need (higher MH Gap) Major public health issue Pure “disability model” may not be usable for low-resource countries in reducing burden or for people with ID/LD in obtaining services Challenge to balance these issues in context of ICD revision Need for increased visibility and awareness

6. INFORMED-EVIDENCE CARE Integrated care is a complex dynamic systems Pooling the available knowledge taking into account the historical perspective Apply scientifically established best pratice to diseases that are well understood Use trial-error to deal with complex conditions poorly understood Capture and apply expert knowledge (implicit and explicit) generated by day to day care Oxman et al, 2009

7. POLICY ON INTELLECTUAL DISABILITIES - Expanding information base - Evidence vs. Informed Based Care - Classification of ID - Bridging & Knowledge transfer

8. Luckasson 20098 AAIDD Definition Disability Functional approach (ICF) Limitations in functioning considered within the context of community environments limitations often coexist with strengths develop a profile of needed supports

9. WPA-SPID Definition ID is a syndromic grouping which includes an heterogeneous group of nosological entities characterised by an impairment in cognitive functioning prior to skills adquisition through learning. The intensity of the deficit is such to interfere in a significant way with individual normal functioning Salvador-Carulla & Bertelli 2008

10. ID: Disabilities OR Disorders

11. ID: Disabilities AND Disorders Polysemic – polynomic approach

12. WG-ID Watford Conference (Oct. 2009) ICD Classification Criteria (Inclusion Criteria) IQ and cognitive impairment Functioning Age of onset and lifespan development ICD Classification Hierarchy (and Exclusion Criteria) Other developmental disorders (e.g., autism) Other child and adolescent disorders Personality Disorders Mental disorders in ID Behaviour problems Medical issues and behavioural phenotypes

13. POLICY ON INTELLECTUAL DISABILITIES - Expanding information base - Evidence vs. Informed Based Care - Classification of ID - Bridging & Knowledge transfer

14. D&A: Walls and bridges Shared problems, values, and care needs Different political objectives & agendas: Disab: more on governance issues and participation in policymaking Ageing: more on traditional forms of policymaking (governmental action) actions conditioned by double stigma

15. Barriers to bridge the two policy fields: Absence of personal contacts (i.e. between researchers and policy makers Lack of timeliness/relevance Mutual mistrust (including political naivety of scientists and scientific naivety of policy makers) Power and budget struggles Complexity & difficulties in research / evidence Political instability & turnover

16. Breaking down the barriers Different messages for different groups Multiple methods of active dissemination Involving stakeholders early to build sense of ownership / reduce resistance to change Actions across sectors Multidisciplinary training Identifying and working with champions Measuring impact of knowledge transfer

17. A&D: Knowledge transfer - WHAT KNOWLEDGE? ONTOLOGY - Philosophical ontology What is a person? - Formal ontology Semanic interoperability - Clinical ontology Nosology Nomenclature - WHO TRANSFERS KNOWLEDGE? - Knowledge brokers - Champions - Intra-Interpreneurs - HOW TO TRANSFER KNOWLEDGE? - New organisation-relational strategies - New research strategies Impact analysis Knowledge Discovery from Data

18. SNOMED-CT: ICD-10-AM A classification for mental and behavioural disorders with glossary descriptions and diagnostic guidelines LEVEL 1 “Developmental mental disorder“ LEVEL 2 a. “Mental retardation (disorder)", and under it a number of genetic syndromes in which mental retardation is one of the invariant features. b. “Developmental academic disorder" (with a synonym of "learning disability LEVEL 3 Several categories eg "developmental reading disorder". Kent Spackman

19. GRAZ DECLARATION 2006 b) human rights and person-centred approach to enabling ageing people with disabilities to live and participate in their community j) develop formal educational programs, training and information provision on ageing and disability issues l) encourage & invest in research (holistic approach)

20. Barcelona 5 – 7 March 2009 Luis Salvador-Carulla

21. www.bridgingknowledge.net

22. BARCELONA DECLARATION 2009 Bridging knowledge in Long Term Care and Support Need for a political stand to make bridging and KT components of any programme in D&A Action for improving bridging & KT at EU-level by involving the relevant policy makers and stakeholders, including those from the health, education, social and justice sectors, social partners, & civil society. www.bridgingknowledge.net

23. We build too many walls and not enough bridges I. Newton