Inclusion Ireland and Down Syndrome Ireland hosted a seminar on ‘Personal Budgets’ at the Gibson Hotel in Dublin, on the morning of 30 May 2016. The conference room was bulging with people with disabilities and family members who were anxious to hear about new/better ways to access the supports they need and want in order to achieve greater choice and independence.
Speakers included NUI Maynooth researcher Padraic Fleming, LEAP Ireland founder Rachel Cassen, parents Rita Walsh and Avril Webster, ÁT Network representative Martin Naughton (with Dr Sinéad Keogh), Julie Stansfield of In Control (UK) and Dr Simon Duffy, Director of the Centre for Welfare Reform at the University of Birmingham (see Simon’s article on the subject elsewhere in this issue). Finian McGrath, TD, newly appointed Minister with Responsibility for Disability Issues, was also in attendance. His department is to establish a Task Force on Individualised funding, moving away from the dependency and deficit models of the past.
Ireland lags behind several other countries in providing for individualised funding for people with disabilities. Padraig Fleming reported on an evaluation of four Irish pilot projects, with Genio funding. He said that personal budgets are ‘doable’ but ‘challenging,’ and that there is as yet no system for accessing such supports.
Rachel Cassen called for community funding and supports to be developed to replace older institutional care systems. The aim should not be focused only on value for money, but, more importantly, on greater community integration. Families require training to develop collaborative skills in negotiation and succession planning. Supports offered must be expanded, so that those with individual funds need not simply ‘buy back’ existing offerings .
Rita Walsh described how she had fought a ‘grinding struggle’ to secure personal funding for her daughter Helena. They engaged brokerage services from Possibilities Plus in Co. Kildare, and Helena now enjoys a wider variety of activities, far greater community involvement, and has a circle of support.
Avril Webster described the complex needs, and the abilities, of her school-leaving son Stephen, and their continuing search for a better route for his future. She said the question is not really about funding, but about choice in how funding is used (see Avril’s article on the subject elsewhere in this issue). She accepted that change is hard for all the stakeholders in disability supports, but that young people with disabilities deserve the same opportunities to find their way into adulthood, given the right supports, and with the possibility of making mistakes and changing choices along their way.
Martin Naughton described how the ÁT Network was established in 2011 as a three-year HSE ‘demonstration project’. It operates as a small ‘mothership charity’, assisting people to access and administer self-directed payments. Although individuals were required to take more responsibility over their own life, Martin and Sinéad Keogh stated that the people involved in the programme had all experienced a much higher degree of empowerment, flexibility and self-confidence.
Julie Stansfield reported on the UK Department of Health and Mencap’s ‘In Control’, which was founded in 2013. People there have a legal entitlement to have a personal budget, which is intended to enable individuals to do realistic life planning. Some UK local authorities have developed the schemes very successfully, and others are still locked into a dependency culture, acting more as a ‘corporate parent’ in deciding what supports are made available. Further collaboration is needed between people and communities, with a further shift in the balance of power, with greater information and knowledge, and using money more efficiently and effectively.
Simon Duffy, formerly involved with ‘In Control’ and now at the University of Birmingham, cited some examples of international best practice in individualised funding. California began developing the independent living movement for people with physical disabilities fifty years ago. Canada’s development began with families in intellectual disability. And Australia has well organised advocacy services to assert funding provisions. He said that governments and societies had spent too long investing in ‘the wrong stuff’, and that they need instead to invest far more in families and communities. ‘Pro-action needs to move upstream’—a strategy to give power and resources to people (citizens) who can do good things with them. He cautioned that rather than seeking new money, ‘old money’ should be moved into the community for individuals and families. Flexibility is essential or money will be wasted—and it takes time.
Minister McGrath said that he was spending his first six weeks in office undertaking a tour of listening to people around the country. He said that the ‘Transforming Lives Programme’ task force would soon be established, seeking to prioritise citizens’ rights and choices for people with disabilities.
There was a good deal of information to be gained from all the speakers at the morning seminar. Encouragement and difficult realities were expressed in equal measure. However, this author heard nothing from the silent elephant in the room! How are existing service providers to be reconfigured in the future, when ‘shoppers’ may or may not choose what they offer, when their budgets may be snipped again and again, and their staff redeployed, or unemployed? It is a complex drawing board, for sure!