Mary Ann O'Brien (Independent)

I move:

That Seanad Éireann:

- recognises the need to protect and maintain disability supports and services in order to enhance the participation and inclusion of people with disabilities in Ireland;

- recognises the need to protect those with a disability in our society, ensuring that people with a disability can continue to lead a fruitful and active life, despite essential cutbacks required in the current economic climate;

- calls for the immediate publication of the value for money and policy review of disability services;

- acknowledges that €1.5 billion is spent on disability services, yet people using these services have no say over the services they receive, where they receive them or who provides them [Department of Health (2011)] and notes the need for a move towards international best practice involving individualised funding to give people with a disability and their families greater control over the services they receive from the State or the manner in which disability allowances are used;

- expresses our regret that the labour activation measure announced by the Department of Social Protection to date prevents people in receipt of disability allowance availing of the programmes, despite research showing that two thirds of people with disabilities were willing to work with the correct supports [ESRI and OSI (2011)];

- calls for the Government to immediately commit to bringing a legal capacity Bill before the Oireachtas to repeal and replace the Lunacy (Regulations) Act 1871, which takes away decision-making rights from people with an intellectual disability and results in Ireland being decades behind Europe and North America in the area of capacity legislation;

- calls on the Government to outline its plans to put the national standards for residential services for people with disabilities on a statutory footing and ensure that services are inspected by the Health Information and Quality Authority [Programme for Government 2011-2016] given that there are over 8,000 adults and over 400 children with an intellectual disability in full-time residential care paid for by the State, but which are not inspected by any Government agency [National Intellectual Database HRB (2011)]; and

- proposes that the Government under the stewardship of the Minister for Social Protection acts to develop effective and appropriate legislative and policy responses, across all relevant Departments and agencies, to create a structure, including a welfare system, which recognises the individual needs and circumstances of people with disabilities.

I am sure all 59 other Senators would agree wholeheartedly with the title of this evening's motion, and would aspire that it would be reflective of Ireland in the not so distant future. However, we are no different from any of the politicians who have gone before us. Every last one of them would have pledged something similar throughout their political careers. Therefore, one has got to ask why this shared application has not been recognised. It has not been from lack of will, time, effort and financial investment in the disability arena. To my mind, the answer lies within the motion document before us. I am sure Members will agree the motion covers a vast number of hugely expansive and highly complex issues pertaining to disability, although it is by no means a conclusive list.

Before I continue, to focus and centre our minds, I will repeat the first sentence of the motion, which seeks to recognise the need to protect and maintain disability supports and services in order to enhance the participation and inclusion of people with disabilities in Ireland. In my own plain language, I would like us to ensure that all 750,000 people who have disabilities in this country are treated like citizens.

My aim while formulating this motion was to be as far-reaching as possible and to expose issues which hamper the daily life of people with a disability and their families. Deputy Simon Harris encapsulated perfectly the problem which arises on the rare occasion that disability issues are discussed in the wider public domain in a recent opinion in the Sunday Independent. His article was entitled "Anger without action changes nothing for the disabled" and detailed the emotive debate which erupted following the changes that were going to be made to the payment of disability allowance to young people in December's budget. This led to the eventual pausing of the measure. Deputy Harris' central point, which I share, was that great outrage without reform never gives a great result. That is exactly what happened in December.

I am not a politician by nature or definition but I am someone who has worked to promote the rights and care for some of the most disabled children in the State through the Jack and Jill Children's Foundation. Therefore, it is my hope that this debate in the Seanad will be both informative and productive. I want it to be free from political point-scoring by all sides. I would use this evening in a small way to raise the topic of disability closer to the top of the political and public agenda given 18.5% of Ireland's total population is disabled, according to studies.

Given the broad nature and complexity of issues contained within the motion, it is my intention to deal briefly with each, outlining the current situation, identifying the problem and putting forward a possible solution. My colleague, Senator O'Donnell, will then deal with the outstanding matters during her contribution.

In order to bring about constructive reform to areas like disability services, it is imperative that the reforms introduced are as a result of research which is in the public domain to facilitate meaningful debate. Therefore, it puzzles me greatly why the Government has introduced reforms and plans further changes in the coming months in areas relating to disability without publication of a value for money and policy review of disability services, commissioned originally in 2008. It appears as if the Government is operating in a bubble - flying blind, so to speak. We are told we have to wait until at least April for publication, despite the public consultation phase closing in early November last year. Why is this the case? I would doubt that it will grab as many headlines as other pending reports. Perhaps the Minister of State present, Deputy Kathleen Lynch, will explain the delay and go as far as giving us a publication date.

Let me give the House one simple reason that this report must be fast-tracked, namely, every day it is not published, the State is spending thousands of euro ineffectively and certainly not to the best benefit of disabled people. Currently, almost 75% of all public moneys spent on disability go to service providers and not disabled people directly. Before I continue, as I will be saying some fairly harsh things about service providers, I will acknowledge, without naming anyone, that there are some magnificent service providers in this country. Let me get that on the table. Nonetheless, it is truly shocking that 75% of the €1.5 billion spent goes to services and not to disabled people. The waste of precious resources must be endless and the services being provided are far from perfect.

Take the case of the Tipperary family of which I spoke numerous times in this Chamber in the last session. They are likely to lose their home this year due to cutbacks while struggling to support their severely disabled five-year old boy. The HSE, in its wisdom, cannot find a paltry €300 a week to care for and support this child in its budget, leaving the Jack and Jill Children's Foundation to do the HSE's work for it.

Let me put it on the record again for the Minister of State. The Jack and Jill model of care would save the State millions of euro per year if it were adopted as Government policy. The reason is that it is efficient and client-led. That is only one small example of many where the State is not getting value for money in the disability arena.

Last week a mother told me about her intellectually disabled 38 year old daughter who was offered a day care placement five years ago, provided and paid for by the State. The only problem was that the young lady in question did not want to go to the particular day care programme as she finds the subjects offered there completely boring. They did not meet any of her needs or interests. She has chosen to stay at home although the State has continued to pay the provider for her day care placement for the past five years. The idea of a model, or of client-focused services, does not appear to be a culture which the State agencies seem willing to embrace. Recently, a senior HSE official confirmed in writing that the HSE was not demand-led. Please allow that statement to sink in. The HSE is not demand-led.

It is this attitude that leaves Ireland lagging behind when it comes to the provision of individualised services for disabled people. If this country is to catch up with international best practice it is necessary for the Government to introduce a welfare system of individualised funding to give people with a disability and their families greater control of the services and allowances they receive from the State. Given that according to the Department of Health, some €1.5 billion is spent on this area, nonetheless people using services have no say over what services they receive, where they receive them or who provides them. Ultimately, disabled people are consumers like us all and they deserve the power of choice.

Individualised funding is a vision where the focus is on getting the person the right support to live the life he or she wants to live. I do not believe this vision is unrealistic. We should not stop until people with disabilities have the power of choice afforded to them. The current system provides no meaningful choice for people with a disability and their families. They are presented with a number of options - or should I say boxes? - which they must fit into and tick, with no appreciation of personal needs or individual circumstances.

Consider again the little boy from Tipperary, to whom I referred. The HSE will offer him a place in a day or weekend respite service which he is not well enough to attend. It refuses to offer him a home care package, in spite of medical evidence that shows he performs better in his home setting. Under an individualised funding, this would be radically different. The person would be placed at the centre of the plan. In addition, he or she and the family would be invited to help in the drawing up of any service in which he or she was expected to participate. In the case of this little boy, the family would be given the same level of funding by the HSE and would be tasked with sourcing the best service for their child that met his exact needs, thus allowing him to stay at home. Imagine the sense of relief this would provide for that family. Importantly, plans do not focus solely on what is already available. Person-centred planning is about creating a life for a person, not merely a plan and a service. It focuses on what could exist and how to make it happen. Simply because something does not exist at present does not mean it could not exist in the future.

Recently, a person with a disability told me that a move towards individualised funding would allow those concerned to take control and provide a sense of freedom and excitement about their life, if they were to obtain the services that would allow them to participate fully in everything that interests them. The words were, "At present I have no real say in my life and I must do what is prescribed by someone in an office who does not understand my individual needs and interests". Nobody in this country should be made to feel like this.

The value for money and policy review of disability services in the public consultation phase seems to appreciate the need to adopt an individualised funding model. Tonight I would like to hear from the Minister of State what the Government's views are on such a model, given that in its report on disability, published in 2011, the World Health Organisation cited individualised funding was the approach to adopt when it came to disability funding. Such a model has been introduced with great success in Northern Ireland, Britain, Canada and the United States, to name a few.

Participation and inclusiveness for all should be at the forefront of all Government policies and initiatives. It was to my dismay, therefore, that I discovered that anybody who is in receipt of disability allowance is excluded from participating in the much heralded JobBridge labour activation measure, in spite of research published by the ESRI and the Office of Social Inclusion, which shows that two thirds of those surveyed were willing to work, given the correct supports. I have yet to hear any Government representative satisfactorily explain the reason for this. To the best of my knowledge, the defence is that it is acknowledged that a person in receipt of disability allowance may not be able to work and that is why it was not deemed an eligible payment. It is certainly the case that some people receiving the allowance are unable to work. However, it is also the case that the Government already accepts that some of those in receipt of the payment are able to work as the disability allowance scheme allows a person in its receipt to earn up to €120 per week before it impacts on their payment. There are a number of earning thresholds beyond that before a person becomes ineligible for the payment. As Senators can see, the current defence does not hold water. It borders on discrimination. Legally, the Government will probably escape sanction as it will find a loophole in the terms and conditions drawn up for JobBridge.

We are all familiar with the concept of poverty traps and why we should strive to prevent them. I wish to bring a piece of research by the Central Statistics Office to the attention of Senators. It shows that the number of people with disabilities living in consistent poverty has risen dramatically in recent years, from 8.8% in 2009 to 13% in 2010. There are endless examples to which I could have pointed today that show how people with disabilities are getting a raw deal. My colleague, Senator O'Donnell, will highlight the other issues contained in our motion.

There are 750,000 people in Ireland with a disability or a mental health need. Broken down, this amounts to 10.5% of adults and 8% of children. This means that as we get older we are more likely to become disabled. In other words, this is about protecting people from the cradle to the grave.