An interesting and informative meeting was held last week between ÁT and The National Applied Social Research Institute in Israel (Myers-JDC-Brookdale Institute). The Institute leads some of the most important national social initiatives, using cutting-edge research to contribute to many significant social policy and program reforms in Israel.
The Israeli government is now seriously exploring the introduction of personalised budgets and the delegation were delighted to have the opportunity to discuss with ÁT some of the important issues in developing this program and also to hear firsthand from Gordon Ryan, one of ÁT’s founding members, about his lived experience of how personalised budgets can facilitate independent living.
Pictured are members of the Israeli delegation led by Professor Jack Habib, Director, Myers-JDC-Brookdale Institute who were hosted at the ÁT offices by Gordon Ryan, Paul McBride CEO of ÁT, and Aisling Whelan ÁT Member Services Manager.
The Board is delighted to announce the appointment of Paul McBride as Chief Executive Officer of Áiseanna Tacaíochta. Paul has over 20 years’ experience in senior management positions in both the commercial and not-for-profit sector. He is a qualified Chartered Accountant with exceptional financial, commercial and governance experience, and a proven track in effective organisational management.
A graduate of NUIG and UCD Paul qualified as a chartered accountant whilst with PWC in Dublin. Following PWC he worked for many years in the food sector both in Ireland and the UK gaining extensive experience in all aspects of organisational management.
In recent years Paul held the position of Chief Executive Officer with Cycle Against Suicide, an organisation focused on raising awareness of suicide and challenging stigma in the area of mental health.
During his tenure with Cycle Against Suicide Paul led multiple teams and hundreds of volunteers towards meeting the goals of the organisation. He oversaw the growth and development of many awareness raising events, including the organisation’s annual signature event which involved up to 10,000 cyclists taking to the roads over a two week period; the growth of the annual schools’ congress to a 6,000 student event over a two day period. He also developed/secured several formal partnership arrangements with related agencies; and a new pilot programme in the area of sustained community engagement in the area of mental health awareness.
Under Paul’s direction, ÁT is committed in continuing to deliver Martin’s vision of empowering people with disabilities to lead independent lives.
A demonstration to highlight the Government’s failure to ratify the UN convention for People with Disabilities. The 30th of March 2017 will mark 10 years since Ireland signed up to the convention but failed to sign it into Irish. This is truly shocking and we need to make sure that the voice of people with disabilities is heard.
For more information go to:
Catherine manages her own services through AT. Recently, she kindly agreed to answer some questions about her experience of Direct Payments and about life in general.
Tell me something about yourself.
My name is Catherine Shortt. I live in Cork but I’m originally from Tipperary. I came to Cork to go to college and 15 years later I’m still here. I have my own house and apart from my Personal Assistants, I live alone. I work part time for the Citizens Information Phone Service as an Information Officer.
Would you describe yourself as an activist?
I don’t know if I would call myself an activist. I have never been involved in any political campaigns or protests. However, as a disabled person I have always fought for equality, independence, self-determination and over-all improved living conditions. As part of this I am on the boards of two separate disability organisations, in addition to my own company which I established as part of AT / Direct Payments.
I have always wanted to be independent and to make a contribution to society like any other person, and I constantly battle towards that. So if that makes me an activist then I am!
Was the decision to transfer to ÁT / Direct Payments a difficult one?
The actual decision was an easy one. I first heard of Direct Payments about 6 years ago when it was literally a pipe dream and from that day I knew it’s what I wanted. I saw what AT were doing and I immediately wanted to be a part of it. Whilst I have always had a PA and Home Help service, support was quite restrictive and did not allow me much freedom.
For example, Home Help workers could not accompany me outside of the home and the PA service did not allow flexibility with regards to how I utilised my hours. I also had no control over recruitment and who I could have in my house. Any decisions I wanted to make concerning my own life had to be approved by somebody else.
I always knew Direct Payments would take away those restrictions and allow me to be fully independent. So there was no question but that I wanted to transfer to Direct Payments.
What practical difference has receiving a Direct Payments made?
I now have a service structured around my life rather than the other way around and there is a level of flexibility that I did not have before. The Personal Assistants that work with me have all been personally chosen by me. They know my needs and my lifestyle and help me to live a full and independent life in line with what I want.
My quality of life has greatly improved. To provide practical examples, I can now go shopping when I want instead of opting for home deliveries which was an extra cost. I can now go to physiotherapy, swimming, the doctor and other appointments whenever it suits because I can arrange for a Personal Assistant to accompany me. I can be more spontaneous; I have more freedom in what I do day to day. I now socialise and meet friends more freely since I can organise my own hours without looking for permission.
I feel 100 times more independent than I ever did. I can now make plans and do whatever suits me. I have a level of control over my life that I never thought possible. I am more sociable and outgoing because now I can make plans and become more involved in society. I am more motivated because I have the ability to achieve more than I could have done prior to Direct Payments.
Where do you see yourself in 3 years and how will Direct Payments help you to get there?
Living a full and independent life, free of external controls and other people deciding what I should do. There will always be limitations with a disability, but they should not prevent me from having the same opportunities as any other person.
I want to be permanent in my current job. I want to still be in my own home, living in the community. I want to have friends and a social life. I want to make a contribution by helping others to experience the independence I have been so fortunate to enjoy.
This can only be achieved through the continuing provision of Direct Payments. Without the ability to direct my own life, I wouldn’t be able to hold down a job and I couldn’t participate in society to the extent I am now.
If Direct Payments were more widely available, (how) would Ireland be a different place?
Ireland would be a country where disabled people are treated as equal citizens. There is a view out there that people with disabilities are unable to work or contribute to society because of their disability. But more often than not, their ability to work is based on the supports available. Lack of adequate supports prevent disabled people from participating in society.
For example, I am more than capable of living in the community; I am more than capable of working; I am more than capable of leading a full and active life. But without PAs I would not be capable at all. And I know of many more people for whom this is the case.
If Direct Payments were to become more widely available, disabled people would be better equipped to demonstrate their true capabilities and to offer a meaningful contribution to society.
As a result, attitudes towards disabled people might change for the better and rather than be regarded as burdens or a drain on resources, we could be regarded as fully functioning members of society.
What would you say to others thinking about going the Direct Payments route?
I have only two words: Do It!
It is challenging, it is daunting and there is, at the start, a lot of work; but that is what your Circle of Support is for. You can have as little or as much help as you feel you need, and the AT Network are with you every step of the way.
If I am honest, there were times when I felt a bit overwhelmed and slightly scared. But I only have to see the difference in my life to know it is absolutely the best thing I have ever done.
Apparently, I was the first person in Cork to undertake this venture, but I hope I am not the last. If I have one wish it is to see Direct Payments become mainstreamed nationwide so that it will be a standard support available to those who need it.
But this can only happen if more people come on board. So again, do it! You absolutely will not regret it.
A huge thank you to Catherine for taking part. An edited version of this interview will appear in our upcoming 2015 Annual Report.
A New Government – A New Disability Reform Agenda.
Reflections from the Centre for Disability Law & Policy
At NUI Galway.
9 February, 2016
The hard-won economic recovery is now well underway. The Government deserves credit for this. But we now need a social recovery to match it – one based on the equal citizenship as well as productive capacity of persons with disabilities.
All political parties need to address these reform challenges and show the voters they mean it. Otherwise they cannot claim the support of citizens with disabilities who have had to put up with a lack of innovation, bad services and low expectations. We – at the Centre for Disability Law & Policy at NUI Galway – contend that those who contend for high office have to provide convincing plans to meet the following challenges.
First of all, our service model needs a drastic overhaul. It is still premised on a medical model of allocating resources to meet specific needs. These needs are important. But they should be put alongside the higher importance of enabling people to get a life and live independently and in the community.When the present Government came into office it promised a radical shake-up of the way the public service functions. Nothing of the sort has happened. We are left with the same unfit-for-purpose service model – the only difference being that it now has a static or shrunken budget. The stated goal of successive Governments has been in favour of the personalization of supports with budgets devolved to the person (and freedom to shop beyond traditional service providers). While we pour money in to an old and discredited model the world has moved on. Australia’s National Disability Insurance Scheme is particularly impressive. Some services are innovating. But isolated pockets of excellence simply aggravate people’s frustration. Someone, somewhere in public office has to grasp the public interest and enforce it throughout the country. All parties should declare now their intention to forcefully re-engineer our existing service model and transform it to meet best international practice.
Secondly, the endemic poverty of persons with disabilities has to be tackled. Everyone knows that employment is a key to independence as well as social integration. The recently announced Employment Strategy is a good start. But we also know that employment for many people with disabilities will not necessarily generate the resources needed to get a life. And our social welfare system on its own will not do. It needs to be complemented by positive wealth accumulation strategies particularly in favour of persons with disabilities and especially those with intellectual disabilities. There is a lot of fiscal innovation throughout the world now which enables trust and other funds to grow in favour of persons with disabilities without impacting their social entitlements (e.g., Canada). Often this requires Government to incentivize third parties to invest (with appropriate tax breaks). There is no reason why the Department of Finance cannot innovate beyond the well-known limits of our social welfare model. There is no reason why we cannot break beyond the assumption that people with disabilities will either remain resource-poor or dependent on social welfare (more or less the same thing). Our political parties need to commit to innovative with new fiscal models to grow the assets of persons with disabilities to ensure they have choices and do not fall into steep poverty traps.
Thirdly, any new Government needs to accelerate the implementation of the long-standing plan to end institutionalization. The main scandal about Aras Attracta was that it still exists. Its continued existence is not merely an affront to the right to live in the community but is also against longstanding Government policy (‘Ending Congregated Settings”, HSE, 2011) . It is time to get serious about community living which means connecting housing strategy with services and support strategy. It means, for example, getting beyond a reactionary or response–led service model that cannot plan for inevitable lifecourse events. What is the point in being allocated housing if one doesn’t have the support to take advantage of it? No one can rationally plan their lives if they cannot predict how the system will respond in advance. And carers have a right to live independently too instead if being used as a permanent form of support regardless of the opportunity costs to them – and to the larger economy.
This Government managed to turn around a backward looking Bill it inherited from the last Government on mental capacity. Minister Kathleen Lynch deserves the lion’s share of credit for converting this Bill into Europe’s first Assisted Decision-Making Act (December 2015). The Act is far from perfect but at least we now have something to build on. This Act has yet to be commenced. This has to be a priority of the incoming Government. And even when commenced it will remain symbolic unless people are also enabled to get their own lives. That is another reason why action on closing own institutions is long over-due.
The next Government could start by ratifying the UN Convention on the Rights of Persons with Disabilities. Rather shamefully, we are among only a handful of countries that have not ratified. We have to ratify with an attitude that we can contribute to positive strategies for change throughout the world – and not just defend ourselves every four years before the UN. The imagination shown by this Government to produce landmark legislation on Assisted Decision-Making shows what is possible. The next Government has to show similar imagination in changing our service model, tackling poverty through innovation and ensuring community living for all. Indeed, strong legislation on the right to live in the community would be an ambitious but also an achievable goal.
Otherwise, given the Poor Law mentality behind so much of our model, one is left wondering what 1916 was all about and whether it was worth it.
Professor Gerard Quinn, Director
Professor Martin Naughton, adjunct chair
Dr Eilionoir Flynn, assistant Director
Centre for Disability Law & Policy
2016 is a year that promises much by way of societal change and reflection – a year in which the political consciousness and deliberations of a people will be upfront like never before. It is a historical centenary year in which concepts of equality and citizenship are up for scrutiny and re-consideration. Yet for most people with disabilities in Ireland real substantive change remains elusive, despite the promises and assurances of the State.
The time to act is now – a General Election, a new Programme for Government and the impending ratification of the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities) offers the opportunity for people with disabilities, their families and friends to engage in public and political discourse and to become effective agents of change.
We’re very excited here in Áiseanna Tacaíochta (ÁT) to announce the winners of our Annual Raffle 2015.
The draw took place at 3pm today, and we’d like to wish a huge congratulations to:
Paul Toomy (Lusk)
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Every year, 3rd December marks the International Day of Persons with Disabilities (IDPWD).
The theme for 2015 is “Inclusion Matters: Access and Empowerment for People of All Abilities”.
Here at Áiseanna Tacaíochta (ÁT), we celebrated the day by hosting a coffee morning with the staff of all the companies and organisations based in our building in Chase House; it was a great opportunity to raise disability awareness and discuss the importance of inclusion with the community around us.
IDPWD got a lot of coverage across the media in Ireland and, here, we take a look at some of that; just click on the titles to find out more!
“Joanne O’Riordan on challenging the Taoiseach” | Alison Nulty | UTV Ireland
Here, disability campaigner, Joanne O’Riordan, recalls how she questioned Taoiseach Enda Kenny on the inadequacy of disability services and supports in Ireland back in 2011, a moment which lead her on her own journey of activism. Joanne lives with total amelia, which means she was born without limbs; she was named as Outstanding Young Person of the Year by the Junior Chamber International (JCI) earlier this year.
“Lectures and workshops are taking place across Ireland to mark National Accessibility Week” | RTÉ News
RTÉ News marked both National Accessibility Week and the IDPWD by highlighting accessibility issues and the importance of making buildings and public spaces open to everyone in society. They spoke to Sinéad Burke, who describes herself as a “little person”, and who asks people to think about how they would manage if they had to manage in a world designed for someone else.
“My disability is just a small part of who I am” | Julie O’Leary | Cork Evening Echo
Cork-born disability rights campaigner, Julie O’Leary, lives with cerebral palsy. In this column, she discusses how employment, relationships and choice are basic human rights, and outlines some of the changes needed to ensure that people with disabilities enjoy them equally to everyone else.
“Today is United Nations (UN) International Day of Persons with Disabilities, but where are the voices of the disabled to mark it?” | Steve Daunt | Newstalk FM
Here, Steve Daunt raises his concern that so many voices celebrating the day are coming from people who do have the lived experience of disability themselves. He feels that it’s important to have people with disabilities reminding others of the barriers that are still there.
More than one in five people not at work due to illness or disability were at risk of poverty in Ireland last year.
That’s according to the latest Survey on Income and Living Conditions (SILC) from the Central Statistics Office (CSO), published yesterday, which shows that poverty levels are rising among people with disabilities and carers.
It also revealed that families where the head of the household is not at work due to illness or disability faced the lowest average disposable income of all demographic groups in 2014, standing at €20,546, a 40% drop on the State average of €34,351.
The ‘at risk of poverty’ rate among those not at work due to illness or disability jumped from 18.1% in 2013 to 22.8% in 2014, while 13.2% of the same group were living in consistent poverty in 2014, compared to 10.8% in 2013.
Meanwhile, over half – or 51.3% – of people not at work due to illness or disability were living in deprivation in 2014, a stark and significant difference to the 29% State average. Those living in deprivation experience difficulty in affording basic essentials, such as adequate heating, warm winter clothes and meals with meat or fish every second day, as well as replacing worn-out furniture, affording an afternoon or evening out, and more.
Director of Áiseanna Tacaíochta (ÁT), Martin Naughton, said, “Economic and social recovery must reach everyone, but this is abjectly failing to happen; these latest statistics bear witness to the reality that we, as people and families with disabilities, recognise and are living every day. New approaches which listen to the voices of the disability community and which work to meaningfully improve our living standards and prosperity must, without question, be supported and implemented to turn these figures and our reality in the right direction”.
We’re really excited here in Áiseanna Tacaíochta (ÁT) as our Annual Raffle 2015 draws ever closer – but we need your help to get as much support as possible over the next couple of weeks.
The raffle is a crucial […]
“Rugby’s Wheelchair Challenge”, a documentary exploring disability and accessibility issues in Ireland, is set for a repeat screening on TV3 ahead of the Rugby World Cup final this Saturday.
The documentary sees […]
The Minister for Justice, Frances Fitzgerald TD, and the Minister for Equality, Aodhán O’Ríordáin TD, yesterday published a roadmap to the ratification of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in Ireland, which is now expected in 2017.
The UNCRPD is an international human rights treaty which promotes and protects the rights, dignity and equality of people with disabilities. Ireland signed the Convention when it opened for signature in 2007, but remains one of only three European Union (EU) countries not to have ratified it.
The roadmap outlines changes to be made to legislation in Ireland to enable the ratification of the Convention and the estimated time-frame needed to do so. Along with this, an omnibus bill which aims to pass through assorted legal changes – the Equality/Disability (Miscellaneous Provisions) Bill – will be published by the end of this year, and will be due for enactment by the end of 2016.
The legal changes outlined affect areas such as decision-making capacity, reasonable accommodation, mental health legislation, the administration of electro-convulsive therapy (ECT), criminal law, offensive references to people with disabilities and mental health conditions across existing legislation, and more. These will require the enactment of the Assisted Decision-Making (Capacity) Bill 2013 and the Equality/Disability (Miscellenaeous Provisions) Bill. Amendments to the Equal Status Acts, the Criminal Law (Insanity) Act, the Criminal Law (Sexual Offences) Act 1993, the Mental Health Act 2001, the Companies Act 2014, and the Juries Act 1976 will also be needed.
With these enactments and amendments scheduled for the end of 2016, the ratification of the UNCRPD can be expected for sometime in 2017, ten years after Ireland signed the Convention.
Click here to read the roadmap and a statement from the Department of Justice.
To read the UNCRPD in full, please click here.
Director of Áiseanna Tacaíochta (ÁT), Martin Naughton, recently spoke on the topic of disability policy in Ireland at a University College Dublin (UCD) Disability Studies research seminar.
Responding to the […]
Missed the latest issue of the Áiseanna Tacaíochta (ÁT) newsletter?
Don’t worry – we’ve made it really easy for you to get your hands on it!
Our Budget 2016 Special explores the range of tax cuts and spending […]
Áiseanna Tacaíochta (ÁT) is calling for a new approach to planning and investment which meaningfully improves the quality of life and opportunities open to people and families with disabilities.
This follows disappointment at the concerning lack of measures which support or enhance circumstances for people and families with disabilities unveiled in Budget 2016’s €1.5 billion suite of tax cuts and spending increases, announced by Ministers Noonan and Howlin yesterday.
Director of ÁT, Martin Naughton, remarked, “the Budget revealed yesterday weighs no palpable bearing on the reality of everyday living for the disability community. Alternative ways of planning and reviewing investment which fairly and profoundly support people and progress society must be identified and implemented. What was announced falls far short in compensating for the drastic cuts and complete lack of investment in the rights of people with disabilities over the past seven years. A new approach to planning is absolutely crucial to change this”.
“It would be much more consequential”, he said, “to replace the Budget with a ‘State of Society’ analysis, which examines and compares Government action and spending from a social perspective on a yearly basis. Exploring the balance of society annually in this way would be much more revealing and would create true innovation”.
Martin continued, “Budget 2016 has merely extended the status quo for people and families with disabilities in Ireland, revealing no real innovation or ambition to achieve Government’s own commitments to ensure community inclusion and Independent Living for people with disabilities. Economic and social recovery – much-cited in yesterday’s announcements – must reach everyone, but Budget 2016 failed to accomplish this: it is a significant missed opportunity for the disability community, clearly demonstrating the need for a change of direction”.
While a number of the measures announced yesterday – such as the restoration of the Respite Carer’s Grant and increase to tax credits for home carers; the reintroduction of the 75% Christmas Bonus for social welfare recipients; the allocation of €8 million for child therapy services; and the additional €15 million to fully include children with disabilities in the Early Childhood Care and Education Scheme (ECCE) – will bear a positive impact, “this will be similiar to placing one small plaster on a deep cut”, Martin said. “Either we don’t understand the consequence of this cut, or we we’re too afraid to truly look at the extent of the injury we’re facing”.
“Questions have to be asked. Budget 2015, for example, generated €1.5 billion more than was anticipated, proving that this is an exercise in predictions which, to a considerable extent, we have very little control over. That extra money is not working hard enough for the social good, and is leaving too many people and families untouched. The reality is that the living standards and prosperity of people and families with disabilities will see extremely little development as a result of yesterday’s announcements”.
He pointed out how relatively straightforward decisions which would make a tangible difference in the lives of people with disabilities – such as the reinstatement of the Mobility Allowance and the Motorised Transport Grant, or the restoration of the Housing Adaptation Grant – have been markedly overlooked, while many of the employment and education programmes – such as Momentum – which received additional funding support remain closed to people with disabilities.
More significantly, although the implementation of “improved models for providing care through de-congregation of institutional settings” was named as a key priority for disability services within the Budget, no new substantial funding for community-based care has been announced. A €300 million capital investment has been allocated for Health Service Executive (HSE)-run residential centres, but this serves only to maintain people with disabilities in their current, marginalised situation, rather than realising their rights to independence, freedom and equality or achieving Government policy.
Martin concluded, “Budget 2016 represented a crucial opportunity to provide the resources, supports and funding models that can make Ireland the best place to live as a person with a disability; Government has abjectly failed to seize it. Instead of relying on a system of predictions and estimates, it must replace this with a new approach which listens to the voices of people with disabilities and our families. Proactive solutions to develop support services which empower us to live independently – and with dignity and choice – in our homes and local communities must become the reality”.
For more information, please contact ÁT on 01 525 0707 or email email@example.com, or you can get in touch with Martin Naughton directly on 086 820 7196.
To read the key Budget 2016 measures which will impact on people and families with disabilities, please click here.
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