Organisations focusing on disability issues have welcomed the publication of the draft final report by the Task Force on Personalised Budgets on progressing personal budgets for people with disabilities in Ireland. However, the four member partnership has criticised a number of the report’s recommendations, such as the decision to exclude children from the proposed system.
In 2017, Inclusion Ireland, the Centre for Independent Living, Leap, and the Centre for Disability Law and Policy at NUIG published Essential Principles of Personal Budgets. This document set out what the key ingredients are for effective operation of a personal budgets system in Ireland.
Minister of State with Responsibilities for Disability Issues, Finian McGrath TD, is due to receive the draft final report by the Task Force on Personalised Budgets on progressing personal budgets for people with disabilities in Ireland this week.
Measuring the draft final report against their Essential Principles document, four disability focused organisations have highlighted a number of key areas of concern in a submission to the Task Force including the exclusion of children from personal budgets, limiting people’s choices to HSE funded services, concerns around alignment with the Assisted Decision Making (Capacity) Act 2015, and the mean-spirited nature of the emphasis on financial accountability and fraud.
Paddy Connolly, CEO of Inclusion Ireland, said, “It is very disappointing that the Task Force’s report excludes children from accessing a personal budget and provides no rationale for doing so. This is particularly dissatisfying considering that research carried out for the Task Force, and published in its own report, notes that most countries have no lower age limit. If children are not included in the proposed pilot projects, then we will have no way to assess the longer-term sustainability of a personal budgets system in Ireland."
“In addition to this, the introduction of personal budgets will be a landmark change in the way that persons with disabilities are supported in Ireland. To frame that in language that puts an emphasis on the potential for wrongdoing is mean-spirited.”
Damien Walshe, CEO of the Center for Independent Living Ireland, said, “A personalised budget should be about giving disabled people freedom and control to live independently, including the choice of services they need to live their lives in an inclusive society. It is disappointing that the taskforce is limited to HSE funded services when what is needed is a cross-departmental approach to ensure that disabled people’s needs are appropriately addressed in a way that allows people to maximise the choice and control over their services to live independent lives.”
“The development of any demonstration projects to inform the design of a personalised budget needs to be supported by a commitment that other relevant Government departments work in an collaborative approach to ensure real control over personalised budgets across a range of services that allow people to live independent lives.”
Dr Eilionóir Flynn, Director of the Centre for Disability Law and Policy at NUIG, said, “We welcome the fact that the final draft report recommends that any system of personalised budgets should be aligned with the spirit and structures of the Assisted Decision Making (Capacity) Act 2015. However, greater clarity needs to be provided on how the governance and management of personal budgets will operate in light of the 2015 Act.”
“The report envisages that a wide range of individuals can act as the fund manager for a person with disability - including an advocate, family member, decision-making assistant, co-decision-maker or decision-making representative. Further detail is needed on the different roles and responsibilities and the levels of oversight required depending on the legal authority of this fund manager, to ensure that the will and preferences of the person with a disability are fully respected in the new personal budgets system."
Rachel Cassen, Director of Leap, said, “Personal budgets are a key enabler of good lives for people with disabilities and Leap particularly welcomes the focus on outcomes in the report of the Task Force on Personalized Budgets. However, you cannot buy a good life. It is only when a Personal Budget is combined with a developmental vision for a person that we will see more people achieve good lives or ordinary life outcomes. These outcomes include employment and valued participation in social and civic life.”
“We believe that the ordinary or typical life is the most precious of all and that in order to work towards ordinary lives people and families will need ongoing access to information and capacity building opportunities. Such support invests in the leadership of people and families as they begin to focus on ordinary life goals such as employment, supported living and community participation.”
Task Force on Personalised Budgets
The Programme for Government provided a commitment to the establishment of a Task Force on Personalised Budgets. The Task Force on Personalised Budgets was established by the Minister of State for Disabilities Finian McGrath TD on 20 September, 2016. The Task Force comprises of a Strategy Group and an Advisory & Consultative Group. Its remit is to make recommendations on a personalised budgets model which will give people with disabilities more control in accessing health funded personal social services, giving them greater independence and choice in accessing services which best meet their individual needs.
Inclusion Ireland is a national rights-based advocacy organisation that works to promote the rights of people with an intellectual disability. The advocacy organisation provides a central forum to identify priorities and formulate nationally agreed policies to present to government, statutory bodies, other relevant groups as well as the general public. Inclusion Ireland campaigns for changes in services and legislation that will improve the quality of life and participation of people with an intellectual disability in Irish society in accordance with the United Nations Convention on the Rights of Persons with Disabilities.
Center for Independent Living
The Center for Independent Living (CIL) was established in in 1992 by and for disabled people with the main aim of ensuring that disabled people achieved choice and control over their lives and full participation in society as equal citizens. CIL is a campaigning, national representative organisation that promotes the philosophy of independent living and to build an inclusive society. Central to the way we work is to ensure that policy decisions that impact on the lives of disabled people have to be directly influenced by those whose lives are directly affected. Their slogan is ‘Nothing about us without us’ and their vision is an Ireland where disabled peoples have freedom, choice and control over all aspects of their lives and can fully participate in an inclusive society as equals.
NUIG Centre for Disability Law & Policy
The NUIG Centre for Disability Law & Policy is engaged in many international and European research networks including the Marie Curie Initial Training Network DREAM and it partners with a range of national research bodies on disability in Ireland. Within the University it collaborates actively with the Centre for Child and Family Support and the Centre for Social Gerontology in order to advance a coherent lifecycle approaches to policy development in the new Lifecourse Institute.
Leap is a family-led, non-profit organisation that works on behalf of children and adults with disabilities and their families. We work with families, their supporters and allies, people with disabilities, service providers and others. We focus our efforts on increasing expectations of what is possible in the lives of people with disabilities. We assist people and families to take action towards what matters to them towards the goal of a good life, an ordinary life.
Nyle Lennon, Communications Officer, 086 837 3394