Fine Gael-led Government condemned for excluding families of children with disabilities from major disability reform
Inclusion Ireland calls on Minister for Disabilities Finian McGrath TD not to miss ‘once in a Ministerial term’ opportunity for reform
The report of the ‘Task Force on Personalised Budgets’ is launched today (17/07/2018) by Minister of State with responsibility for Disability Issues, Finian McGrath TD setting out the next steps for the introduction of the major disability reform called personal budgets. Inclusion Ireland, the national association for people with an intellectual disability, has called on the Minister to advocate for children with a disability by ensuring they are included in these crucial reforms.
A personal budget is an amount of money allocated to a person to cover the cost of providing their care and support following an assessment of need or personalised planning process. The aim of a personal budget is to allow a person and their family to decide what services and supports that individual receives, and who provides those services and supports. Personal budgets, when implemented, will ensure that people with disabilities have choice and control over how money allocated for health or social care services in their name is spent.
The report of the Task Force sets out pilot projects as the next steps for the process but does not include children in the pilot projects and speaking ahead of the launch, Paddy Connolly, CEO of Inclusion Ireland said; “Yet again we see that a Fine Gael-led government has excluded children with a disability from a major reform programme. It happened with the establishment of Tusla, it happened with the recent admissions to school legislation and now children with a disability and their families are to be barred from accessing a personal budget, it will be a huge disappointment to families if the Minister, given his track record of disability advocacy, fails to include children in the phased roll out of personal budgets”
Calling on Minister for Disabilities Finian McGrath to advocate for children to be included, Paddy Connolly said, “Personal budgets have the potential to reform of how we deliver disability supports in this country and the roll out of personal budgets offers Minister McGrath a rare opportunity to make a life-long difference in the lives of thousands of children with a disability. An opportunity like this only comes along once in a Ministerial career”
The exclusion of children from the planned pilot projects comes despite the fact that in most countries where personal budgets are in operation, there is no lower age limit.
Mr. Connolly continued “in other countries with this system, there is a huge demand among families of young people. We can only conclude that, the decision was made according to resources rather than what was right for people with disabilities”.
“Excluding children from the pilot projects comes, despite the fact that we know that early support and intervention is crucial to good outcomes and good lives and for the Minister to allow the exclusion of children with disabilities from the potential benefits of personal budgets is to deny their parents an opportunity to ensure their children are supported in their own communities, among their peers and to prevent them being institutionalised as adults”
Inclusion Ireland was a member of the Strategy Group of the Task Force and insist that there was no consensus about the exclusion of children and that 4 of the non-government organisations involved in the strategy group signed up to the ‘Essential Principles of Personal Budgets’ which stresses that there should be no lower age limit.
Inclusion Ireland welcomes the potential impact of the introduction of personal budgets and urges the relevant ministers and departmental officials to ensure that the new system is designed to be accessible for all people with disabilities to take part.
Mr. Connolly said “personal budgets are about choice, freedom and control and we are calling on the Minister to make sure that personal budgets are accessible to people, without over-burdensome reporting requirements and with the supports they need. People receiving personal budgets should not be held more accountable than the big service providers receiving millions in public funds every year”
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About Inclusion Ireland
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.
About the Essential Principles of Personal Budgets
These guiding principles for a system of personal budgets were developed and endorsed by Inclusion Ireland, Center for Independent Living, LEAP Ireland and the Centre for Disability Law & Policy at NUIG.
The Principles can be read at this link
About 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.
Task Force Strategy Group membership
Christy Lynch, Chairperson - KARE
Siobhan Barron*, National Disability Authority
John Bohan, Department of Social Protection
Paddy Connolly, Inclusion Ireland
Sarah Craig, Health Research Board
Gráinne Duffy, Disability Services, Department of Health
Eithne Fitzgerald, Economist
Aideen Hartney, National Disability Authority
Tomas Campbell, Department of Public Expenditure and Reform
Gary Lee, Centre for Independent Living
Joanne McCarthy, Disability Federation of Ireland
Gerry Maguire, Minister’s Policy Advisor
Marion Meany, HSE
Barry O’Brien, Department of Public Expenditure and Reform
Clodagh O’Brien, Not for Profit Business Association
Brian O’Donnell, National Federation of Voluntary Bodies
Jennifer O’Farrell, Department of Justice and Equality
Gerard Quinn, Centre for Disability Law and Policy, NUI Galway
Brian Hayes*, National Platform of Self Advocates Nomination
Rachel Cassen*, Leap Ireland