CHALLENGING TIMES: Ensuring values support ordinary lives; Exploring family and personcentred approaches

by Alison Harnett

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The National Federation of Voluntary Bodies hosted a one-day event on 23 June 2011, to explore the progressive values driving child and adult disability support services, under the title: Challenging Times: Ensuring values support ordinary lives—Exploring family and Person-centred approaches. This event was aimed at people supported by organisations, their families, frontline staff, managers, researchers and those responsible for policy development.

The conference provided an opportunity to hear from inspiring international and Irish speakers on the importance of values shaping disability support services and to debate their relevance for children and adults in Ireland today. The day opened with keynote speakers presenting a joint plenary session, chaired by Báirbre Nic Aonghusa from the Department of Health, and then divided into separate child and family, and adult streams. The keynote speakers were Carl Dunst (Orelena Hawks Puckett Institute, North Carolina), John O’Brien (The Center on Human Policy, Law & Disability, Syracuse University) and Professor Gerard Quinn (The Centre for Disability Law and Policy in the National University of Ireland, Galway). The conference closed with a joint plenary session capturing the common themes and linkages.

Carl Dunst, PhD, is a research scientist whose background is in both early childhood-special education and developmental psychology who has been involved in research and practice in early intervention for 35 years. He is an articulate promoter of family-centred practice, focusing on empowering families to support their son or daughter within an inclusive local community environment and using natural supports. Carl emphasised that family-centred practice is about how you use resources and provide supports to families. He described the role of values in early childhood intervention and how family-centered beliefs can be used as the foundation for parent, family and child capacity-building intervention practices. He a range of tools to support listening to families to find out their priorities and to support families to achieve them. In the child and family centered stream, Carl presented on the theme of natural environment supports. He was joined by parents Frieda Finlay and Rachel Cassen who gave strong presentations on family leadership through research and training. Kildare HSE Service presented on developing family-centred supports, and the Brothers of Charity (Clare) demonstrated the importance of family leadership and illustrated the benefit of empowering parents to take up challenging leadership roles.

As a person who uses services, Kathleen Gittens from Kilkenny represented the ‘Seasamh Parliament’. She described how the Seasamh model enables service users to have a say in organisational decisions. She reinforced the need to uphold the concept of ‘Nothing about us without us’ and spoke about some of the current work that the Seasamh Parliament is undertaking in relation to the Capacity Bill, the ongoing cuts in government funding to services and in relation to supported employment prospects.

John O’Brien needs little introduction to an Irish audience, as an internationally renowned expert in building more just and inclusive communities with people with disabilities, their families and allies. John made two presentations, one on the topic of “What supports good lives in the community?” and one on “Building the foundations for good support”. His message was that in order to achieve better outcomes for people with disabilities in a climate of shrinking state funding, we need to look to under-utilised sources of support, including extending the capacities of families, the person themselves, the staff members working with them, and their communities. We need to build social innovation, and to use individualised, flexible funding mechanisms. He indicated that in the new landscape presented by the UN Convention on the Rights of Persons with Disabilities “we need to come down from reflexive power-over people with ID and their families and find ways to practice power.with and open the social roles and self-determination that allow people to act as contributing citizens. We need to re.negotiate our settlement with families, schools, work places and community associations to move from accepting delegation to keep people safe, healthy, and happy at the margins of society to assisting the re.negotiation of social boundaries necessary to open access to valued social roles.” He indicated that we can create value by supplying and supporting trustworthy, respectful, resourceful people who are willing to be recruited into relationship by the person, to participate in imagining better, to act with the person and allies to support contribution in community life.

New ways of thinking about the appropriate supports required such as the example of ‘customized employment’, can assist organisations in working in this new way. The impersonal ‘professional authority’ role in relationships with people with disabilities can impede learning to relate to equals with differing capacities, which is required to honour embarking on the journey of change. In replacing the professional authority role, John indicated that we need adaptive learning in collaboration with people with disabilities and their families and allies.

John suggested that we can learn to redesign our organisations to answer two new questions: “How does this person show up in community life as a valued friend and contributing citizen?” and “How can we all show up in more places that attend to, cultivate and benefit from the gifts of difference?” In grappling with the changes required, it can be difficult for organisations to explore new options and ways of working. John finished by encouraging the strategy of using organisational resources (especially the commitment and talents of people with disabilities, their families and allies, and staff) to launch as many ‘small craft’ as possible to explore the territory that’s inaccessible and dangerous to the ‘big liners that our organisations have become’.

Professor Gerard Quinn is the Director of the Centre for Disability Law and Policy at the NUI Galway School of Law and he specialises in international and comparative disability law and policy. He is a member of the Irish Human Rights Commission and helps to coordinate the work of national human rights institutions worldwide on disability issues. Professor Quinn spoke about the UN Convention on the Rights of Persons with Disabilities as a moral compass and a new language that helps us to frame and reframe some of the issues that face people with disabilities and service providers who support people with disabilities today. He presented the delicate ‘balancing act’ that needs to be struck between protecting people in fragile situations and ensuring that a person’s growing autonomy is supported and respected. The UN Convention on the Rights of Persons with Disabilities provides us with very valuable tools to support this work.

The presentations made at the Challenging Times – Ensuring Values Support Ordinary Lives event are available to download at the National Federation website: http://www.fedvol.ie/Challenging_Times _Ensuring_Values/Default.1698.html

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