Active Citizenship & Disability
Toward a 21st Century
Model of Supports for Persons
Centre for Disability Law and Policy,
National University of Ireland Galway
“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 non-State 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.
“Active Citizenship & Disability:
Toward a 21st Century Model of Supports for Persons with Disabilities.”
Event Programme – MORNING
08.15 – 09.00
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
Understanding the Infrastructure of Change
Martin Routledge, Head of Operations, In Control, UK.
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.
The Transformation of Service Providers: the Necessity for Organisational Change.
Patricia Fratangelo, Onondaga Community Living, Syracuse, New York.
Q & A
Event Programme –
C: Bringing the Experience Home to Ireland
Chair: Rachel Cassen, Advocacy Co-ordinator/Information Officer, Irish Autism Action & Co-founder of LEAP
The Irish Policy Climate – Where we stand and where we aim to be.
Bairbre NicAonghusa, Director of the Office for Disability and Mental Health.
Identifying and championing personalised support models in Ireland.
Madeleine Clarke, Founding Director, Genio, Ireland.
Martin Naughton, Áiseanna Tacaíochta and Co-Executive Director, European Network of Independent Living
Empowering Individuals & Families: Values-Led Innovation
Martina Rynne, Brothers of Charity, Clare
Tea and Coffee Break
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).
Round Table Discussion of Future Orientations in Ireland.
Animated by Rachel Cassen
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 Dr James Browne, President, National University of Ireland Galway)
(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 non-governmental 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.
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.
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.
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'.