Disability Policy Entrepreneurship in the 21st
Century
Turning Ideas into Change that Transforms Lives.
An international conference linking research with future disability reform agendas &
showcasing the research & policy work of the EU Marie Curie Initial Training PhD
Network DREAM (Disability Rights Expanding Accessible Markets).
23-25 June, 2014.
Provisional Programme
National University of Ireland (Galway).
http://www.nuigalway.ie/dream/events.html
dream@nuigalway.ie
DREAM is a Marie Curie Initial Training Network for Early Stage Researchers &
PhD students.
1
We are delighted to announce a major conference on ‘Disability Policy
Entrepreneurship in the 21st Century – Turning Ideas into Change
that Transforms Lives’ to take place on June 23-25 at the Centre for
Disability, Law & Policy in the National University of Ireland, Galway.
This event will bring together major agents of change in the disability
policy field around the world and will focus in particular on how to
translate the generalities of UN Convention on the Rights of Persons with
Disabilities into practicable reform strategies.
It will build on the work of a European-wide PhD network (the DREAM
network) which has laboured over the past three years and which focused
on how to give practical effect to the UN Convention in areas such as (1)
fundamental rights (e.g. the right to community living), (2) expanding
economic and market opportunities for persons with disabilities and (3)
sustaining change with appropriate and effective institutional mechanisms
at regional and national level. This PhD network was among the first in
the world with a focus on the UN disability convention and was funded
by the European Union as a Marie Curie Initial Training Network. All
the researchers have had placements in policy-oriented institutions and
have gained valuable experience in translating ideas into action.
The DREAM network includes the National University of Ireland,
Galway (NUIG), University of Leeds, Maastricht University, University
of Iceland, NOVA Norwegian Social Research, Fundosa Technosite S.A.
and Swiss Paraplegic Research (SPF) see: http://www.disabilityrights.eu/
The event will interest all those concerned with the process of change
including NGOs, DPOs, Governments, international and regional
organisations as well as business and services. It will also be of
importance to academics, students and researchers interested in the UN
CRPD as an engine of positive change for persons with disabilities.
2
PROGRAMME.
Day 1.
Looking Back & Learning from the Past.
Welcome: Dr James Browne, President of the University.
Opening of the Conference: Kathleen Lynch, TD.,
Minister of State for Disability, Mental Health and age.
Short Video Address: Commissioner Maire GeogheganQuinn, Commissioner for Research, European
Commission.
Session 1: Transatlantic Perspectives on the Evolution of
Disability Policy.
This session will hear from leading change agents in their own words
about how they helped bring about change, the obstacles they
encountered and their strategies for overcoming them. It will encompass
the use to which they put research and their messages for future
generations of disability policy entrepreneurs. It is cast in a Transatlantic
light to enable common themes to emerge.
Chair: Baroness Vivien Stern CBE, House of Lords, UK.
US Disability Policy Entrepreneurship: Senator Tom
Harkin: my life as a disability policy entrepreneur in the US
Senate –looking back, looking forward.
International Disability Policy Entrepreneurship: Diane
Richler, former President, Inclusion International.
European disability Policy entrepreneurship: My life and
my voice as a disability policy entrepreneur in Europe,
looking back, looking forward. Pat Clarke, member of the
board of the European Disability Federation (EDF).
3
Lunch.
Session 2: Looking Forward – a new policy Landscape &
new opportunities for change.
This session will explore the new policy terrain opened up by the UN
Convention on the Rights of Persons with Disabilities. This affords new
openings and opportunities for change – opportunities that demand
constructive strategies to engage more constructively with the policy
world and to configure research to have maximum impact.
Chair: Dr Des Hogan, Acting Chief Executive, Irish
Human Rights Commission [TBC].
A new Moral & Legal Compass for change in the world –
the UN CRPD. Professor Rosemary Kayess (University of
New South Wales, Australia).
Mind the Gap in Europe – the place of Research in the
process of Change: Martha Stickings, EU Fundamental
Rights Agency.
Mind the Gap in Europe – lessons from a policy-makers’
perspective: Andre Gubbels, Federal Ministry of Social
Affairs, Belgium.
Day 2.
Human Empowerment: Rights & Markets.
Session 3: Preconditions for Independence – Basic Rights of Voice &
Choice.
The purpose of this session is to focus on the first major tranche of
research work carried out by the DREAM researchers. It spans related
topics such as voice (restoring full legal capacity to enable people direct
their own lives) and choice which includes independent living (and the
need to end congregated settings and move resources to the community
(and for new business models to evolve among service providers). It will
be based on a facilitated dialogue between the ESRs and leading players
4
in the broad field. The Chair will facilitate the dialogue. It will be
preceded by a short talk setting out the future agenda in the field – within
which the researchers can situate their work and its relevance.
Chair: Professor Amita Dhanda (Nalsar University of Law,
Hyderabad, India).
Forward Policy Perspectives: Looking Ahead to the
Rights Challenges in the 21st Century: Professor
Gabor Gombos, NALSAR University and NUI Galway,
former member of the UN Committee on the Rights of
Persons with Disabilities.
Interactive Dialogue with DREAM research PhD students:
Anna Arstein Kerslake (NUI Galway), Ciara Brennan
(Iceland University), Orla Kelly (Iceland University), Magdi
Birtha (NUI Galway), Abigail Rekas (NUI Galway).
Lunch:
Session 4.
Towards Independence – Harnessing Market forces to
underpin independence & human flourishing.
The purpose of this session is to explore the considerably underdeveloped
notion of persons with disabilities as active market participants and
consumers. It is premised on the idea that economic empowerment lies at
the heart of real independence and that strategies to enhance such
empowerment is not only good for the persons concerned but also for
business. It will be based on a facilitated dialogue between the ESRs and
leading players in the broad field. The Chair will facilitate the dialogue.
It will be preceded by a short talk setting out the future agenda in the field
– within which the researchers can situate their work and its relevance.
Chair: Professor Tom Boylan
Forward Policy Perspectives: Challenges and opportunities in
the emerging Marketplace of the 21st century. Professor Peter
Blanck, (Burton Blatt Institute, Syracuse University, USA).
5
Interactive Dialogue with DREAM researcher PhDs;
Ieva Eskyte (Leeds University), Anthony Giannoumis (NOVA
Institute, OSLO), Robert Huffaker (Tecnosite, Madrid, Spain),
Yulia Kuznetzova (NOVA Institute), Betul Yalcin (Leeds
University).
Day 3:
Session 5.
Sustaining Change & Promising Practice.
Sustaining a dynamic process of change.
The purpose of this session is to stand back from the challenges of change
in particular policy domains and look more broadly at how a forwardmoving dynamic of change can be sustained through time. This entails
an examination of the institutional arrangements that States can and
should make to drive change as well as the necessary pre-conditions for
rational policy formulation which include more and better statistics and
indicators. It will be based on a facilitated dialogue between the ESRs
and leading players in the broad field. The Chair will facilitate the
dialogue. It will be preceded by a short talk setting out the future agenda
in the field – within which the researchers can situate their work and its
relevance.
Chair: Dr Maurice Manning, Chancellor of the National
University of Ireland & former President of the Irish Human Rights
Commission.
Forward Policy Perspectives: Looking Forward to a Theory of
Change in the 21st century and how research can help:
Professor Paula Pinto, University of Lisbon, Portugal.
Interactive Dialogue with DREAM Ph.D. researchers: Stelios
Charitakis (Maastricht University), Carly Toepke (Swiss
Paraplegic Centre), Dimitris Skempes (Swiss Paraplegic Centre),
Andrea Broderick (Maastricht University).
6
Session 6. Case Study - New Skills, New Policy Space, More
Impact.
The purpose of this session is to highlight a recent policy success based
on innovative disability policy entrepreneurship at European level. It
brought together a wide range of civil society groups and utilized
research as part of a broader strategy to bring about meaningful change.
The context was the negotiations for a new set of Regulations governing
the EU Structural Funds (2013) to ensure assistance for the right to
community living. This entailed bringing together a broad coalition of
actors and the timely production of research combined with actionable
recommendations that were successfully championed by the European
Parliament.
Chair: Luk Zelderlo, European Association of Service Providers.
Case Study – The Reform of the EU Structural Funds to
underpin the right to community living – many voices and a
shared goal.
The Alliance – climbing out of the disability silo: Overview of the
Strategy for reform of the Funds. Suzanne Doyle, research officer
responsible for the file at the CDLP.
The Alliance for us - Community Living & children: Georgette
Mulhair, Director, LUMOS (London),
The Alliance for us - Community living and older people: Louise
Richardson, Age Platform Europe (Brussels).
The Impact of the Alliance: a European Parliament Perspective:
Mairead McGuinness MEP.
Close: Professor Lokesh Joshi, Vice President for Research, NUI
Galway.
Bibliographies
7
8