TAKING CONTROL: A conference on what individualised funding would mean for you and your family

by Mary de Paor


Clarion Hotel, Liffey Valley, 18 October 2008
It is always heartening to witness the dogged commitment of individuals in the Irish disability community. Once again, Séamus Greene epitomised that energy and imagination, as he chaired the highly successful conference on ‘individualised funding’ (aka self-directed payments, brokerage, person-centred planning), in Dublin on 18 October 2008. Behind Séamus was an impressive organising committee from Autism LifeCare Trust, Down Syndrome Ireland, Inclusion Ireland, National Parents & Siblings Alliance, NIID (Trinity College Dublin), Partners for Change, RehabCare and the Sisters of Charity of Jesus & Mary/Muiríosa Foundation.

The day presented a mind-blowing array of high-powered* speakers for the (approx.) 150 people who attended. John Maloney, Minister of State for Equality, Disability and Mental Health, officially opened the conference and remained to hear the first part of it. Séamus Greene and Geraldine Graydon (NPSA colleagues) presented the vision of ‘Taking Control’. They spoke with stark clarity of the present limitations encountered by their daughter and son (respectively) and the dream of realising their full potential—and that of all our people with disabilities—by finding a better way for them to achieve a ‘good life’.

The morning’s speakers gave examples of alternative service solutions, on the island of Ireland and abroad. Stephen Rose (CEO of Choice Support and editor of Community Connecting) summarised the self-directed support agenda in Britain, where a number of local authorities are now commissioning individualised funding. Stephen recommended the website of ‘In Control’ (www.in-control.org.uk) for further information on the vision and methodology of self-directed supports.

Also from the UK, Vivien Soave spoke for her sister Donna whose quality of life has been much enriched by an individual budget and support plan, enabling her to have her own home and staff team.

Julie Simpson told the conference about the Parent to Parent Association in Queensland Australia, which has become involved in planning for better futures for people with disability throughout their life transitions.

Jill Hershaw and Susan Taylor represented the Vela Microboard Association in Northern Ireland. Jill’s daughter Rebecca receives the support of a personal ‘microboard’—a formal group of family members and friends who develop her support network and administer her direct payments. The Vela Microboard scheme has the legislative backing of The Carer’s and Direct Payments Act (Northern Ireland) 2002.

Bernie McWilliam talked about ‘David’s Choice’, the family-governed project she and her husband Tom are setting up for their son in Clifden. She described the organisation of the project—the role of the host agency (Brothers of Charity Services in Galway), the project managers and staff development officer— stressing that they are still in the early stages of an ambitious, uncertain process, but that David has begun to benefit from it.

Vicki Cammack, of PLAN (Planned Lifetime Advocacy Network, Vancouver, Canada) spoke about the organisation’s work in connecting families, assisting in developing circles of support and personal-future plans for individuals with disabilities. PLAN has built a considerable reputation over the past twenty years (see Frontline 42 (2000), p.19); one of their more recent projects is the creation of ‘TYZE’ a secure online service a la ‘Facebook’, that enables easy contact between family, friends and caregivers (see www.tyze.com).
The morning’s final speaker was Stephen Williamson who is the main facilitator in the Scottish company ‘EQuality’, which works to deliver a tailor-made service to individuals, including his son Kim.

After lunch and the discussion workshops, the conference heard three other invited speakers: Nuala Coughlin, from Ennis, who celebrated ‘a life of my own’; James O’Grady, very recently appointed as Policy Advisor to Minister of State John Maloney; and Brendan Broderick, CEO of SCJMS/Muiriosa Foundation and representative of the National Federation of Voluntary Bodies. Mr O’Grady admitted that there are blockages to an individual-funding vision—systems, organisations and staff/professional bodies—but there are also enablers in the capacities of individuals themselves and their families. The challenges are to restructure and turn the blockers into enablers: ‘If we share the vision and agree on it, we can get there.’

Brendan Broderick, as CEO of a service organisation, asserted that in order to create more fulfilled lives we
need to change the ‘demand dynamic’. He said that the real obstacle was [limited] imagination rather than [limited] resources. He questioned whether service providers (including himself) should actually be involved in devising person-centred plans—that it needed to become a fully-independent process with the individual with the disability having the ‘say-so’ (to quote Michael Kendrick). He said that individual funding is a key catalyst toward taking control. Brendan used two ornithological metaphors: he referred to it being pheasant-shooting season (pheasant = service ‘provider’) and ‘turkeys voting for Christmas’ (services losing their power position). So I will add that he also raised a real cat among the pigeons—he wondered if the HSE is really the best home for legislating on individualised funding, and whether it might be better (not just for birds, but for all of us) to migrate to a better home? Hmmm.

It was an excellent conference, with sincere praise earned by all involved in organising and presenting it—and to the Clarion Hotel which accommodated it economically and efficiently. (N.B.: A more comprehensive report on the conference is available on the website www.npsa.ie.) (*Although ‘high-powered’ wasn’t intended as a pun, this conference, like so many before, was dogged with technical hitches galore. We had sound-without-vision, vision-without.sound, speakers and techies huddled around The Laptop—and at one point the screen behind the speaker volunteered the hotel-loop system advertising splendid ‘interior living’ options! Maybe this reporter’s ambivalence toward PowerPoint put a hex on things. Then Bernie McWilliam sensibly yanked out the laptop cable, and we were able to enjoy seeing and hearing presenters in peaceful attentiveness. (Besides, our conference pack included a copy of all their PPT slides.)