International Conference
Active Citizenship & Disability
Toward a 21st Century
Model of Supports for Persons with
Disabilities
Centre for Disability Law and Policy,
National University of Ireland Galway
www.nuigalway.ie/cdlp
“Active Citizenship & Disability: Toward a 21st Century Model of Supports for Persons with Disabilities.”
The purpose of this conference is to bring together key thinkers and actors to reflect on
the sharp break needed between traditional welfare-oriented supports for persons with
disabilities and a newer model that aims to underpin independence, choice and active
citizenship.
Most of the relevant personal support services were delivered in the past through nonState service providers funded by the State but also held at arm’s length from the State.
In the past, the ‘public interest’ of the State in funding such services was either left inarticulate or simply assumed that passive maintenance was sufficient. Now, a newer,
more robust, conception of the ‘public interest’ based on active citizenship is needed to re-direct the delivery of these services. To a certain extent the expression of this ‘public interest’ will help build on innovation already happening in Ireland and elsewhere.
Current worldwide trends favour a personalisation of supports to meet real as opposed
to assumed need, opening up choice in personal living arrangements, and redesigning
supports to enable an active life in the community. Indeed, current trends seem to
require a whole new language to replace the language of needs and services with
concepts of active citizenship.
At the heart of this change, is a move away from traditional models of support based on
group services with limited choice towards giving people more choice and control over
the support they require to live independently and participate in their community. This
entails a wholesale rethink of the nature and operation of the welfare state. It entails a
more individualised approach to the design of services. It entails much more consumer
power and choice. It entails adequate supports to enable individuals take full advantage
of re-designed services.
To some extent this trend involves harnessing market forces or working more closely
with them. But, as more power is devolved to the consumer, care will need to be taken
to support the consumer in their choices and to ensure that predictable deficiencies in
market-led provision are anticipated and adequately handled before they happen.
The United Nations Convention on the Rights of Persons with Disabilities powerfully
reinforces current trends. This is due especially to Article 12 which restores voice and
power to the individual including voice and power over how services are designed and
delivered and Article19 which demands that services should be closely tied to the
achievement of choice and independence as well as community involvement.
The conference will provide a meeting point between theorists who bring important
perspectives from the new UN disability convention, policy makers interested in
redesigning service delivery models, service providers interested in re-imagining their
services in the decades to come and persons with disabilities anxious to ensure that
future services are adequate to ensure their right to live independent lives and be
included in the community.
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“Active Citizenship & Disability: Toward a 21st Century Model of Supports for Persons with Disabilities.”
Event Programme – MORNING
08.15 – 09.00
Registration
A: Setting the Scene
Chair: Professor Gerard Quinn, Director, Centre for Disability Law
and Policy, National University of Ireland Galway.
09.00 – 09.40
Keynote – Re-conceptualising the Purposes of Social Support
in the Welfare State – Implications in the context of disability.
Professor Bjorn Hvinden, Head of Research, NOVA Institute,
Norway.
09.40 – 10.00
Independent Living – Why a new Model of Services is so
Important to Independent Living
Jamie Bolling. Executive Director, European Network of
Independent Living.
10.00 – 10.20
Research into Policy
Eithne Fitzgerald, Head of Policy & Public Affairs, National
Disability Authority.
10.20 – 10.30
Q&A
10.30 – 11.00
Tea and Coffee Break
B: Foundations for Change
Chair: Monica Wilson, Chief Executive, Disability Action,
Northern Ireland.
11.00-11.35
Understanding the Infrastructure of Change
Martin Routledge, Head of Operations, In Control, UK.
11.35-12.10
Power to the Consumer: Individualising Funding & Managing
the Transition from Block Services to Individualised Supports.
Brian Salisbury, Director of Strategic Planning, Community Living
British Columbia, Canada.
12.10-12.45
The Transformation of Service Providers: the Necessity for
Organisational Change.
Patricia Fratangelo, Onondaga Community Living, Syracuse, New
York.
12.45-1.00pm.
Q&A
1.00-2.00pm
Lunch
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“Active Citizenship & Disability:
Toward a 21st Century Model of Supports for Persons with Disabilities.”
Event Programme – AFTERNOON
C: Bringing the Experience Home to Ireland
Chair: Rachel Cassen, Advocacy Co-ordinator/Information
Officer, Irish Autism Action & Co-founder of LEAP
2.00-2.15pm
The Irish Policy Climate – Where we stand and where we aim
to be.
Bairbre NicAonghusa, Director of the Office for Disability and
Mental Health.
2.30-2.45pm
Identifying and championing personalised support models in
Ireland.
Madeleine Clarke, Founding Director, Genio, Ireland.
2.45-3.00pm
Peer-Led Innovation.
Martin Naughton, Áiseanna Tacaíochta and Co-Executive Director,
European Network of Independent Living
3.00-3.15pm
Empowering Individuals & Families: Values-Led Innovation
Martina Rynne, Brothers of Charity, Clare
3.15-3.45pm
Tea and Coffee Break
3.45-4.15pm
Main findings of a Study on the Future of Services by Centre
for Disability Law & Policy.
Dr Andrew Power, Lecturer, University of Southampton.
(Researcher on Active Citizenship & Disability Project, Centre for
Disability Law and Policy, NUIG).
4.15-4.45pm
Round Table Discussion of Future Orientations in Ireland.
Animated by Rachel Cassen
4.45-5.00pm
Rapporteurs Report.
Professor Mary McCarron, Dean of Faculty of Health Sciences
(Principal Investigator of IDS-TILDA project), Trinity College
Dublin.
5.00 - 5.20pm
Closing Address: Minister Kathleen Lynch, T.D.
Minister of State for Equality, Disability and Mental Health.
(Welcome by Prof. Gerard Quinn, Director, Centre for Disability
Law and Policy, National University of Ireland Galway)
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Speaker List
(Alphabetical Order by Last Name)
Jamie Bolling, Executive Director, European Network of Independent Living (ENIL)
Jamie Bolling is the Executive Director of the European Network of Independent Living
(ENIL), the European wide cross-disability network of disabled people and their
organizations. ENIL supports the setting up of Centers for Independent Living and
together they lobby for the mainstreaming of human rights, and for change and
inclusion. Since January 2008, ENIL took over the strategic direction of the European
Coalition for Community Living (ECCL). Jamie is also a doctorate student in Disability
Research at the University of Örebro in Sweden.
Rachel Cassen, Advocacy Co-ordinator/Information Officer, Irish Autism Action
Rachel Cassen has been working with Irish Autism Action for over a year now as
Advocacy Coordinator. This is a new role and involves setting up the service nationally
with a team of regional advocates. The Advocacy team meets every six weeks for group
supervision and support and as the group approaches the end of the first year of their
studies they will begin a hand over of casework. As a parent of a young adult with AS
she takes great satisfaction to know that the advocates not only possess professional
expertise, but also carry with them in their work a personal understanding of the
challenges that people with autism face. This makes the service unique. She also is a
founding member of LEAP a Family Leadership initiative funded to support people with
Intellectual Disabilities and Autism and their families through person- centred directed
education/training, planning and supports.
Madeleine Clarke, Founding Director, Genio.
Madeleine Clarke is the Founding Director of Genio (formerly the Person Centre) which
she established in 2008 in order to take a more proactive and systematic approach to
accelerate the availability of proven, cost-effective personalised supports and
information. Genio is a non-profit organisation which financially supports a range of
innovative services and support models tailored to enable people with disabilities and
mental health difficulties at risk of social exclusion to lead full lives. She began her
professional career in 1980 as a psychologist with the St. John of Gods services and
moved to work at Barnardos in 1984 where she became Deputy Chief Executive. Prior
to Genio, in 2000, she began working as an independent consultant with statutory nongovernmental and philanthropic organisations on a range of commissions including
those relating to people with disability and mental health issues.
Eithne Fitzgerald, Head of Policy & Public Affairs, National Disability Authority
Eithne Fitzgerald works as Head of Policy & Public Affairs at the National Disability
Authority (NDA), the national advisory agency to Government on disability matters.
During this time she was actively involved on the Working Group of the recently
published Strategy for Community Inclusion, Time to Move on from Congregated
Settings. She is a former Minister of State for Finance and former Minister for Labour
Affairs, where she introduced the Ethics in Public Office Act and the Freedom of
Information Act. In setting up the National Economic and Social Forum, she brought
representatives of unemployed, disability groups and other community interests into
social partnership for the first time.
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Patricia Fratangelo, Executive Director, Onondaga Community Living, New York.
Pat Fratangelo is the Executive Director of Onondaga Community Living (OCL), an
organisation which provides services for persons with development disabilities in
Onondaga County in central New York. OCL previously provided traditional services
before Pat successfully transformed it to provide more individually tailored and
responsive supports tailored towards independent living. The purpose of Onondaga is
to “listen to each person’s history and personal story and to develop the services that best meet his or her needs, whether you look to us for residential or vocational services.
Each service developed is developed one person at a time’. Patricia is a well-known
speaker on service reform and a leader in innovative community living. Her story of
service transformation is recorded in her co-authored book, One Person at a Time.
Prof. Bjorn Hvinden, Head of Research, NOVA Institute, Oslo
Bjorn Hvinden is Professor and Head of Research at the NOVA Institute at Oslo. NOVA
is a research institute under the auspices of the Norwegian Ministry of Education and
Research. The aim of the institute is to develop knowledge and understanding of social
conditions and processes of change. Bjorn is an international expert in Social rights,
active citizenship and the role of the welfare state. He is Lead Researcher on the Nordic
Centre of Excellence in Welfare Research ‘Reassessing the Nordic Welfare Model’ (NordForsk 2007-12), based at NOVA, involving collaboration with a number of other
universities.
Kathleen Lynch, T.D., Minister of State for Disability, Equality, Mental Health and
Older People
Kathleen Lynch was appointed Minister of State for Disability, Equality, Mental Health
and Older People in the Department of Health and Department of Justice, Equality and
Defence on 10th March 2011. Prior to this, Minister Lynch was elected to Cork
Corporation in 1985 and first elected to Dáil Eireann in 1994. She was subsequently
elected again in 2002 and has retained her seat since. Minister Lynch was a member of
the Joint Oireachtas Committee on Health, 2007, Joint Committee on Justice, Equality,
Defence and Women's Rights 2002-2007 and member of Joint Committee on Enterprise
and Small Business, 2002 - May 2006.
Prof. Mary McCarron, Dean of Faculty of Health Sciences, Trinity College Dublin.
Mary McCarron was recently appointed Dean of Faculty of Health Sciences at Trinity
College Dublin. Prior to this appointment Prof McCarron served as Head of the School
of Nursing & Midwifery at Trinity College which is the leading school for Nursing &
Midwifery in Ireland. An international expert in the field of intellectual disability and
dementia, McCarron has played lead roles in assessing symptoms of dementia,
developing specialist memory clinic services, and consulting on day-to-day care
management and service re-design. Professor McCarron is the Principal Investigator
for the first ever Longitudinal study on Ageing in Persons with Intellectual Disability
(IDS to TILDA) to be conducted in Ireland or in the EU and the only study to date with
the potential to compare the ageing process in people with intellectual disability with
other groups.
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Martin Naughton, Co-Executive Director, European Network on Independent Living;
Regional Support Officer, Disability Federation of Ireland.
Martin Naughton is a long-time disability advocate/campaigner. He is one of the people
who brought Centre for Independent Living to Ireland and has been a champion of the
independent living movement with his role as co-executive director at the European
Network of Independent Living. He also works as Regional Support Officer with the
Disability Federation of Ireland. Recently, Martin established Áiseanna Tacaíochta
(pilot funded project through Genio), which is a cost-effective user-led network, that
empowers its members to move from dependency on disability service providers to
managing their own personal budgets and services in a mainstream market
environment. It offers its members the opportunity to direct their own Personal
Assistant Services using the philosophy of the Independent Living Movement.
Bairbre NicAonghusa, Director of the Office for Disability and Mental Health,
Department of Health.
Bairbre NicAonghusa was appointed the first Director of the Office for Disability and
Mental Health at the Department of Health in 2008. The Office was set up by
Government to bring a more coherent ad integrated approach to policy and services for
people with disabilities and mental health difficulties. Prior to this appointment,
Bairbre was Deputy Director of the Office of the Minister for Children. She was
Principal Officer in the Mental Health Unit of the Department of Health & Children from
2000-2006 where she was involved in the drafting and enactment of the Mental Health
Act, 2001.
Dr Andrew Power, Lecturer in Human Geography, University of Southampton
(Researcher on Active Citizenship Project, CDLP).
Andrew Power worked as lead researcher at the Centre for Disability Law and Policy,
National University of Ireland, Galway on a major project looking at the development of
personalisation and reform of service delivery across a number of countries. He was
awarded his PhD at the National Institute for Regional and Spatial Analysis at the
National University of Ireland Maynooth in 2005, and has since worked in a number of
research posts including the Institute for Health Research, Lancaster University, where
he worked on the review of the UK Department of Health consultation for their learning
disability strategy, Valuing People Now. His research focuses on disability rights and
independent living, reform of service delivery, and family care policy. He has recently
begun a lectureship at the School of Geography at the University of Southampton.
Prof. Gerard Quinn, Director, Centre for Disability Law and Policy, NUIG.
Gerard Quinn is Professor and Director of Centre for Disability Law and Policy, National
University of Ireland, Galway. Called to the Irish Bar in 1983, he holds a masters (LL.M)
and doctorate in law (S.J.D.) from Harvard Law School. His specialization is
international and comparative disability law and policy. He led a delegation of
Rehabilitation International (RI) during the UN Working Group that elaborated the
basis for the new Convention on the Rights of Persons with Disabilities. He is a member
of the Irish Human Rights Commission and helps co-ordinate the work of National
Human Rights Institutions worldwide on disability issues.
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Martin Routledge, Head of Operations, In Control, UK
Martin Routledge has more than 25 years' experience in health and social care and has
been at the heart of the development of the personalisation agenda both in policy and in
practice in the UK. Martin is one of the founding members of In Control and has
recently returned to join them in April 2011 as head of operations. In Control is a
national charity which has pioneered self-directed support in the UK. Prior to this,
Martin worked at the Department of Health, where he managed the transformation of
adult social care team at the UK Department of Health and was national lead for
personalisation in the Putting People First delivery team.
Martina Rynne, Brothers of Charity, Clare
Martina Rynne, has worked with the Brothers of Charity services Clare for the past 7
years. She has an MA in Community Development from NUI Galway and prior to
working with the Clare services, worked in Local Development in west Clare. She has
been heavily involved over the past number of years with the Brothers of Charity
services in Clare, in developing individualised services for people with intellectual
disabilities. In 2009, she spent 4 months working with an organisation in Brisbane,
Australia called Mamre Association. The focus of the work placement, was to see first
hand how family leadership is developed among families of people with intellectual
disabilities, as a way to ensuring the life of the person with a disability in the family is
full and valued. On return, Martina managed a one year national project, funded by the
Genio Trust, called Family Focus. This project was modelled on the work of Mamre, in
building the skills and capacities of families and involved 15 families.
Brian Salisbury, Director, Strategic Planning, Community Living British Columbia,
Canada.
Brian Salisbury is the Director of Strategic Planning at Community Living British
Columbia (CLBC), a Crown Corporation supporting people with developmental
disabilities. He has made it his lifetime work to give individuals with disabilities and
their families the financial power to control the type of disability supports they require.
He played a key role in setting up CLBC, where he worked as Senior Advisor in setting
up the Interim Authority for CLBC. He has undertook to implement a system of
individual funding for persons with intellectual disabilities in BC. He is known
worldwide for his expertise on, and commitment to, the development of support broker
resources and individual funding.
Monica Wilson, Chief Executive, Disability Action, Northern Ireland.
Monica has undertaken a number of roles within Disability Action, which culminated in
her appointment as chief executive in 1992. She was a member of the Equality
Commission for Northern Ireland (NI) and served on the UK Disability Rights Taskforce.
She was a member of the Economic Rights Working Party on the NI Bill of Rights, and
the Learning and Skills Advisory Board of the Department for Employment and
Learning and is an advisor to Employers Forum on Disability. She currently serves on
the Board of the NI Housing Executive and on the Department for Employment and
Learning’s Widening Participation in Higher Education Strategy Group. In 1997 she
received an OBE for her services to people with disabilities. In 2001 she received an
Honorary Doctorate from University of Ulster. In 2002 she received ‘RADAR's Harding Award: an honorary title bestowed on a veteran disability rights campaigner'.
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