Videnscenter for Handicap og Socialpsykiatri

1. "Participation in Knowledge Arenas and the UN Disability Convention" Jerome BickenbachSwiss Paraplegic Research & University of Lucerne Videnscenter for Handicap og Socialpsykiatri National Resource Centre on Disability and Social Psychiatry konferencen: Handicap fremadrettet Odense, Denmark, February 7th 2012

2. Challenges • AGEING • RIGHTS REVOLUTION • EVIDENCE-BASED POLICY

3. AGEING • Ageing demographics and its impact on health and social policy • Ageing and disability common cause: the irony of mutual distrust • Policy upheaval e.g. dementia prevalence rise and long-term care challenge: home supports or institutionalisation

4. AGEING

5. AGEING

6. RIGHTS REVOLUTION • CRPD: ‘revolution’, not in kinds of rights but in potential for genuine implementation • Indicators for monitoring • The subtle shift from rhetoric to facts: impact on advocacy (anti-science, anti-professional bias), the need for alliances: science in the service of rights

7. RIGHTS REVOLUTION

8. RIGHTS REVOLUTION • The fundamental controversy: • Process v. outcome indicators (progressive realisation) What does equality demand? ‘Fair race’ or equal outcome • The unavoidable need for political judgment

9. EVIDENCE-BASED POLICY • Knowledge-transfer: implementation science E.g. CRPD implementation: “Science in the service of rights” BUT • The techocratic state and the demise of democracy • Normative policy or rationalised policy (demoncratic participation or expert economic analysis) Policy outcomes: GNP or well-being

10. EVIDENCE-BASED POLICY • New developments in evidence-based policy e.g. Policy dialogue and policy briefs

11. AGEING dynamics • Natural driver – economic business case for change – (unintentional driver of human rights: deinstitutionalisation) • Ageing-Disability political & advocacy alliance – exploration of common cause – strengthening of rights revolution (universalisation) • Grand political debate: process or outcome equality – revolution in policy outcomes Need for good science, good data e.g. metric of functioning

12. RIGHTS REVOLUTION dynamics • Ageing demographics -- pushing the ‘business case’ for Ageing-Disability alliance (Disability gains power; Ageing gains political advocacy skills and experience) • Political debate – what does equality demand? • Political strategy –getting the message across, beyond rhetoric to policy change: Need for policy build on data e.g. policy universalism

13. EVIDENCE-BASED POLICY dynamics • The right evidence – • The right political debate over equality – • Translation of debate into policy grounded in human rights Need for stakeholder participation in the science of evidence for policy e.g. Participatory Action Research

14. AGEING RIGHTS REVOLUTION EVIDENCE-BASED POLICY To avoid the downside of “science in the service of policy” technocratic, mechanistic, anti-democratic • Need for good science, good data • Need for policy build on data • Need for stakeholder participation in the science of evidence for policy