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 <ksp@ihtsdo.org>

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