"Participation in Knowledge Arenas and the UN Disability Convention"
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"Participation in Knowledge Arenas and the UN Disability Convention" Jerome Bickenbach Swiss Paraplegic Research & University of Lucerne. Videnscenter for Handicap og Socialpsykiatri National Resource Centre on Disability and Social Psychiatry konferencen: Handicap fremadrettet

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"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


Challenges

  • AGEING

  • RIGHTS REVOLUTION

  • EVIDENCE-BASED POLICY


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


AGEING


AGEING


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


RIGHTS REVOLUTION


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


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


EVIDENCE-BASED POLICY

  • New developments in evidence-based policy

    e.g. Policy dialogue and policy briefs


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


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


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


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


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