Luis Salvador-Carulla M.D., PhDProfessor 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 2010BRIDGE 2010
POLICY ON INTELLECTUAL DISABILITIES
- Expanding information base
- Evidence-based vs. Informed- evidence Care
- Classification of ID
- Bridging & Knowledge transfer
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)
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
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
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
POLICY ON INTELLECTUAL DISABILITIES
- Expanding information base
- Evidence vs. Informed Based Care
- Classification of ID
- Bridging & Knowledge transfer
Luckasson 2009 8
AAIDD Definition
DisabilityFunctional approach (ICF)Limitations in functioning
considered within the context of community environments
limitations often coexist with strengths
develop a profile of needed supports
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
ID: Disabilities OR Disorders
ID: Disabilities AND Disorders
Polysemic – polynomic approach
WG-IDWatford 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
POLICY ON INTELLECTUAL DISABILITIES
- Expanding information base
- Evidence vs. Informed Based Care
- Classification of ID
- Bridging & Knowledge transfer
D&A: Walls and bridgesShared 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
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
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
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 analysisKnowledge Discovery from Data
SNOMED-CT: ICD-10-AMA classification for mental and behavioural disorders with glossary descriptions and diagnostic guidelinesLEVEL 1 “Developmental mental disorder“
LEVEL 2a. “Mental retardation (disorder)", and under
it anumber of genetic syndromes in which mental retardation is one of the invariant features.
b. “Developmental academic disorder" (with asynonym of "learning disability
LEVEL 3 Several categories eg "developmental reading disorder".
Kent Spackman <[email protected]>
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)
Barcelona 5 – 7 March 2009
Luis Salvador-Carulla
www.bridgingknowledge.net
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
We build too many
walls and not enough
bridges
I. Newton