Towards informed policy for intellectual disabilities in europe
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BRIDGE 2010. TOWARDS INFORMED POLICY FOR INTELLECTUAL DISABILITIES IN EUROPE. Luis Salvador-Carulla M.D., PhD Professor of Psychiatry. University of Cadiz (Spain) Secretary Section of Diagnosis, classification and nomenclature, WPA

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TOWARDS INFORMED POLICY FOR INTELLECTUAL DISABILITIES IN EUROPE

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Towards informed policy for intellectual disabilities in europe

BRIDGE 2010

TOWARDS INFORMED POLICY FOR INTELLECTUAL DISABILITIES IN EUROPE

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)


Policy on intellectual disabilities

POLICY ON INTELLECTUAL DISABILITIES

- Expanding information base

- Evidence-based vs. Informed-evidence Care

- Classification of ID

- Bridging & Knowledge transfer


Expanding information base

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

INTERNATIONAL PROJECTS (EU – EAHC)

Salvador-Carulla & Garcia, Psychiatry, 2009


Expanding information base1

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

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

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 disabilities1

POLICY ON INTELLECTUAL DISABILITIES

- Expanding information base

- Evidence vs. Informed Based Care

- Classification of ID

- Bridging & Knowledge transfer


Aaidd definition

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

Luckasson 2009

8


Wpa spid definition

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 OR Disorders


Id disabilities and disorders

ID: Disabilities AND Disorders

Polysemic – polynomic approach


Wg id watford conference oct 2009

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 disabilities2

POLICY ON INTELLECTUAL DISABILITIES

- Expanding information base

- Evidence vs. Informed Based Care

- Classification of ID

- Bridging & Knowledge transfer


D a walls and bridges

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


Barriers to bridge the two policy fields

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

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

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


Towards informed policy for intellectual disabilities in europe

SNOMED-CT: ICD-10-AMA 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 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

GRAZ DECLARATION 2006

b) human rights and person-centredapproach 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)


Towards informed policy for intellectual disabilities in europe

Luis Salvador-Carulla

Barcelona 5 – 7 March 2009


Towards informed policy for intellectual disabilities in europe

www.bridgingknowledge.net


Barcelona declaration 2009

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


Towards informed policy for intellectual disabilities in europe

We build too many walls and not enough bridges

I. Newton


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