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National Disability Strategy: Statements

Thursday, 9 February 2012

Dáil Éireann Debate
Vol. 755 No. 1

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Minister of State at the Department of Health (Deputy Kathleen Lynch): Information on Kathleen Lynch Zoom on Kathleen Lynch I am delighted this opportunity has been provided in the Dáil to have a debate on this issue. We had a debate on this issue in the Seanad recently and the debate there, while not coming down on one or other side of the issue, was quite exceptional. It was wide-ranging, inspirational to a great extent, and showed the value of having a structure that allows for a more free-flowing debate. In terms of statements on specific areas, perhaps on Dáil reform, we should examine how debates work there because it most definitely was a better type of debate; it was more interventionist and I found it far more satisfactory.

I will inform the House on the areas in which we will develop the national disability strategy and ultimately strive to improve the quality of life of people with disabilities in the coming years, even in the face of the financial restrictions in which we find ourselves. I can also assure everyone, however, that I see this session as an important sounding board, as I know that Deputies will reflect issues which have been raised with them by constituents all over the country. I can assure all speakers on the matter that I will be take on board the salient points they make and consider them in the context of the development of the implementation plan for the national disability strategy, which was committed to in the programme for Government. [36] I intend to take every opportunity that arises to raise both parliamentary and public awareness of disability and its effects on those with a disability and on their families.

This is particularly important in light of the findings of the report of the National Disability Authority on a survey of attitudes to disability which it carried out on behalf of the Government and which I launched recently. The survey was taken by the NDA in 2011 and, unfortunately, it showed that since the previous survey carried out in 2006, overall the public’s attitude to people with disabilities has hardened across a range of settings, including the workplace, schools and the community. To give one brief example, the percentage of people who said they would object if a child with intellectual disability or autism was in the same class as their child went up from 8% in 2006 to 21% in 2011. Overall, 40% of respondents in the latest survey stated that they were opposed to educating children with intellectual disabilities in mainstream settings. These findings are a concern when Government policy stresses the importance of educating children with disabilities in mainstream settings, unless it is harmful to the child or to other children. I will examine further the full set of results from the NDA’s survey and how we might address them in the overall context of developing the national disability strategy.

The strategy was launched as far back as September 2004 and there is no doubt much has been achieved arising both from legislation such as the Education for Persons with Special Educational Needs, EPSEN, and Citizens Information Acts and from the sectoral plans which were produced and progressed around the six functions of health, social protection, employment, transport, environment and communications. It is also true to say that considerable resources have been expended in the intervening years. Rather than looking back and simply listing achievements to date, I want to put greater emphasis in this session on progressing the strategy in the immediate future and on getting the maximum return on the resources we have at our disposal.

When the Government came into office, we felt the strategy needed to be revitalised and refocused. That is why I established a new implementation group for the strategy to develop an implementation plan and to carry it out over the lifetime of this Government. I am chairing the group and it has representatives from the relevant Departments, the NDA and from organisations, many of which are service providers, which are key players in the sector, namely, Inclusion Ireland, Mental Health Reform, the National Federation of Voluntary Bodies, the National Service Users Executive, the Not for Profit Business Association and the Disability Federation of Ireland. In addition to these, I have added new members to the group which I believe are crucial to development of the strategy. We have included for the first time the County and City Managers’ Association because local authorities are vital at community level and they are the decision makers. For example, it is they who make decisions on necessities such as public lighting, footpaths, public seating, which bus routes will be used and so on. Second, I appointed a number of individuals to the group to represent the actual experience of living with disabilities. They will lay out the issues with which they have to deal and stress the practicalities which should be addressed by the strategy to improve their everyday lives. Their input will be crucial to the plan. Internationally, there is a widely used disability motto, “Nothing about us, without us”. It is not used here so much but it is a great motto and one to which we should keep returning. In this approach we need to ask people with disabilities how they want to spend their day and we need to do as much as possible to ensure they can do so as independently as they wish. In achieving this and in developing our national disability strategy, we must strive to achieve the maximum possible with the level of resources available, and those resources are considerable.

A crucial initiative in this regard is the Review of the Efficiency and Effectiveness of Disability Services in Ireland, more commonly known as the value for money review, which is being [37]undertaken. This in-depth review of disability services will assess how well current services for people with disabilities meet their objectives and support the future planning and development of services. A steering group is overseeing the review. It is chaired by an independent chairperson, Mr. Laurence Crowley, and has two other independent members as well as members drawn from the disability sector, the Department of Health, the Department of Finance and the HSE. The disability services were selected for review in consideration of the significant annual expenditure on the programme We should not forget that those resources have been put in place by successive Governments. This is not something we are now suddenly addressing, but a continuum. The people who were in this job before me were as concerned about how the services were delivered and were extraordinarily effective in securing resources and putting in place services. Other considerations in the section of disability services for review are the size of the population directly affected by the services and the scope and nature of services provided. Disability services infrastructure has developed in an ad hoc way over many years and systems of allocation of resources and accountability have evolved differently in the former health board regions. Different organisation types have also followed different development paths. Sometimes when I say that, and say it in different ways, I think the organisations, the service providers, take it as a form of criticism, which it is not. These organisations, the service providers, whether small or large, provided a service to people with disabilities at a time when the State did not; although they were funded by the State but for a long time they very much depended on charitable donations as well. We owe a debt of gratitude to those people which should be acknowledged publicly. Concerns were expressed regarding the number of agencies providing disability services, the likelihood that inefficiencies had crept into the system, the potential for geographical or sectoral inequities in resource allocation and service provision, and the potential for duplication of costs. Other issues of concern included administrative costs, management structures, and non-pay expenditure on research, advertising, profile-building and infrastructure. All of these concerns are being addressed. The review offered an opportunity to take stock of the entire system and, if warranted, to make recommendations for policy changes or reform, with the aim of ensuring the system would meet the needs of service users into the future in the most efficient and effective way possible. The scope of the review included a commitment to define and describe the objectives of disability services, to consider the extent to which existing policies are consistent with delivery of these objectives, to assess whether current policies and investments arising from those policies are sustainable in the context of the changing economic climate and to propose the policy changes, if any, needed to ensure that overall objectives are delivered.

While the VFM review will concentrate on efficiency and effectiveness, a separate expert reference group on disability policy was established specifically to examine existing disability policy and determine whether it needs to be changed to meet better the expectations and objectives of people with disabilities. As part of this review, a public consultation process on existing disability services was undertaken, which confirmed that people with disabilities and their families, more than anything else, are seeking more choice in the services they receive and more control over how they access them. The expert reference group report proposes a significant reframing of disability services, with a move to individualised supports and the introduction of individualised budgeting for people with disabilities in order to put more choice and control directly in their hands. The proposals in the expert group report and the findings from the public consultation will be considered shortly by the steering group, which will hold its final meeting in the near future to sign off on the report. I expect to publish the review in the first half of the coming year, with the Government’s approval.

HSE-funded service provision is moving towards a community-based and inclusive model rather than one that is institutional and segregated. The focus in the next few years will be less [38]on increasing the level of service delivered by the voluntary sector and more on improving the existing service for people with disabilities through tailoring the service to their needs and supporting them in participating fully in economic and social life, with access to a range of high quality supports and services to enhance their quality of life. At the moment, service users have little choice or control over the service that is supplied to them.

In addition to the individualised budgets proposed by the policy review, a number of other aspects of independent living will be central to the development of the national disability strategy. With regard to accommodation, the HSE published a report in June 2011 proposing a new model of support in the community for those in congregated settings, which are defined as settings in which ten or more people with disabilities live. The report proposes a seven-year phased closure of congregated settings, with individuals actively supported in living full, inclusive lives at the heart of the family, community and society. The broader overall issue of housing will be addressed by the National Housing Strategy for People with a Disability 2011-2016, which sets out a framework for the delivery of housing to people with disabilities through mainstream housing policy. This will be achieved by directing the efforts of housing authorities and the HSE towards supporting people with a disability in living independently in their own homes so they do not have to move into residential care. A suite of inter-agency protocols has been developed to support more efficient co-operation between the HSE and housing authorities. A planning group is working on the housing strategy and will identify sustainable funding mechanisms.

Another issue to do with independence which will be addressed by the national disability strategy is that of employment and training opportunities. There is a wide range of supports for people with disabilities and for employers, including the supported employment programme, the disability allowance disregard, the wage subsidy scheme, the employee retention grant scheme and the workplace equipment adaptation grant. This is an area in which there are many challenges for people with disabilities. One new scheme that will be introduced in the near future by the Department of Social Protection under the national disability strategy will mark a further important development of the range of supports available to people with disabilities. The scheme, which is called the partial capacity benefit scheme, will allow people with disabilities who are assessed as having restricted employment capacity to avail of employment opportunities while continuing to receive an income support payment. The scheme recognises that the current structure of the welfare system, which categorises people as being either fit or unfit to work, does not reflect the reality for many existing welfare customers. The scheme will be open to people who are in receipt of invalidity pension or who have been in receipt of illness benefit for a minimum of six months, and participation will be voluntary.

The ongoing integration of the employment services and community services divisions of FÁS into the Department of Social Protection is an important step away from a passive model of income support and towards a proactive model under which all people of working age, including people with disabilities, are given the support they need to find employment or to develop the skills and aptitudes required to progress towards employment by undertaking appropriate education, training or work experience. People with disabilities may call in to a FÁS employment service office to meet with an employment service officer who will provide them with full information, advice and guidance about training and employment. Such an approach not only makes economic sense but also allows services to be tailored to meet the individual needs of each person and to respect and enhance their dignity as individuals.

Another key area to be addressed with regard to independent living is capacity. The Government’s legislative programme, announced in January, indicates that a mental capacity Bill will be published in this Dáil session. The Bill will reform the law in respect of adults who are [39]vulnerable in the sense that they may lack some or all capacity to make important decisions for themselves. It will modernise the law on capacity, which is currently contained, for the most part, in legislation dating back to the nineteenth century, and will bring Irish capacity legislation into line with current thinking and modern legislative frameworks worldwide. The main proposals in the Bill are to replace the outdated adult ward-of-court system with a new statutory framework governing decision-making on behalf of persons who lack capacity. It will change existing law on capacity, shifting from the current all-or-nothing approach to a flexible, functional one whereby capacity is assessed on an issue and time specific basis.

I will finish there and take up certain issues later if that is what the Chairman wishes.

Acting Chairman (Deputy Robert Troy): Information on Robert Troy Zoom on Robert Troy Yes, as the Minister of State has gone over time.

Deputy Billy Kelleher: Information on Billy Kelleher Zoom on Billy Kelleher I welcome the Minister of State and I also welcome the opportunity to speak on this subject. Disability is something we should discuss on an ongoing basis and we should continually monitor the resources and supports provided by the Government to individuals, agencies and voluntary organisations that are working with people with disabilities. In addition, we should take note of our attitudes to people with disabilities. A recent report from the National Disability Authority contains surveys that show a hardening of attitudes towards people with disabilities, which is of major concern. It is similar to the phenomenon of an immediate deterioration in attitudes towards foreign people when there is a downturn in the broader economy. More people are saying they would prefer that children with autism or Asperger’s syndrome were not educated in mainstream schools. This is an undercurrent that we need to deal with in a vocal way. This type of attitude is insidious and seeps into people’s consciousness, creating dangerous precedents.

There is a number of ways of addressing this, including moral debate. We must encourage society to be outward-looking and supportive of people with disabilities, but there must also be supports from the Government. When supports for people with disabilities are diminished, people begin to feel, for example, that their children are not receiving their educational rights or entitlements. It is an unfortunate argument, but one that is made. Education providers will tell one that parents complain their children are not receiving the full educational opportunities to which they are entitled for various reasons. That must be addressed at Government level and also at societal level. It is for that reason that debates such as the one we are having are important. The National Disability Authority and other organisations are working on a continual basis not only to promote the rights and entitlements of people with disabilities but also to ensure their views are heard in the broader community so people understand the challenges faced by those with disabilities and embrace this as an opportunity to improve society.

I welcome the Minister’s appointment, as I have said publicly. I do not wish to praise her too often but I know she is genuinely committed to this issue and has long been a campaigning advocate for people with disabilities. However, we must ensure that we bring the broader community with us and not have a “them and us” situation. We have that in too many areas, such as race and, for many years, creed and nationality on this island. It is not unusual for people to bring a debate down to a simplistic assessment of what is right and wrong or why somebody is less fortunate than others because it is somebody else’s fault.

The area of education, in particular, is one we must address. We must be able to support the education providers in the classroom, that is, principals, assistant principals and teachers, as well as the people with disabilities to ensure they have their basic right to an education. We have had this very contentious debate for many years. Court cases have been taken and there have been Supreme Court challenges. Originally, there was a great deal of support in the broader community for education for people with disabilities, but that seems to have regressed. [40] That is clear from the surveys carried out under the national disability strategy. More than 40% of respondents in the latest survey stated that they were opposed to educating children with intellectual disabilities in mainstream settings. That is exceptionally worrying. When one looks at some of the other issues raised in that survey of attitudes one can see it is something we must take on board in a serious and meaningful way.

The other side of the argument is that there are many people with disabilities who are isolated and do not have the necessary supports to participate in society in a meaningful way. The State has obligations, through its funding systems, the agencies, the education system and through supporting voluntary organisations that work with people with disabilities, to ensure that people with disability have the means to live independently as best they can and as much as they wish. How much they wish to do so is the critical issue.

I do not blame the Minister for the budget announcement but it is an issue that must be addressed quickly. I refer to the announcement that disability allowance was to be cut for people under 18 years of age and slashed from €188 to €100 per week for people from 18 to 21 years of age and from €188 to €144 per week for those aged 22 to 24 years old. That was paused by the Taoiseach and the Government announced there would be a review of the decision with regard to the reduction for new applicants for disability allowance. I am not sure what that review consists of, what the decision is or whether it has been made. Not much would be required to carry out the review. However, we know one thing for sure, that it was a mean cut that hurt many people and caused much disquiet and anger in the broader community.

Clearly, many people are now living in limbo. They are waiting for the review to come to a conclusion and for a decision to be made. In the meantime, they are unsure. They are concerned as to whether they will come under the new scheme announced in the budget, which has subsequently been paused, or whether it will only affect new entrants following the Government’s decision. I appeal to the Minister to hold the review, to move the pause to stop and just stop the cut. In the context of the overall budgetary provision for social welfare, this is the meanest of them all.

Given that she has responsibility for the disability area, the Minister has an obligation to try to encourage the Government and the Minister for Social Protection to cancel the review and allow the payments to continue as they always did previously. Move the pause button to rewind and return to the way things were before the budget. Let people who have challenges, difficulties and uphill battles on an hourly and daily basis have the financial means to at least participate in a meaningful way in society, as best they can, and to maximise their abilities. That is the basic right of any citizen.

When pressure was brought to bear after the budget, the Taoiseach admitted that the Government does not get everything right. I do not expect the Government to get everything right every day, but when it gets something badly wrong, it should at least put admit it and move on. I have sat on the Government benches. We defended unpopular decisions and decisions we did not particularly like personally, but which were made collectively. The Minister’s obligation is to try to argue and advocate for people with disabilities. In the case of the disability allowance, it is a mean cut that should be reversed. The review should be stopped and the situation should be returned to what it was prior to the budget announcement.

Often legislation is the pillar in which the Government and Parliament set out the basic building blocks of rights, entitlements, obligations and support. After that, one hopes society will buy into the general principle in the statute. The key issue is the delivery of services. One can pass the legislation but there must be meaningful support to give it a firm foundation [41]in the delivery of services. Ensuring that people have practical rights and opportunities is critically important.

Special needs assistants and other supports are very important for people with disabilities. There is also the issue of home help. All the elements are intertwined. They are the elements that give people the support and opportunity to maximise their potential. Any cuts in the number of special needs assistants in the education system, cuts in the number of home helps and cuts that affect carers simply undermine and diminish people’s capacity to live in a meaningful way. While we pass and embrace the legislation, that is not worth much unless it is followed up with meaningful support that has an impact on people’s lives. Aspirational legislation is very noble but it does not have a daily impact on people. What impacts is the supports that flow from the legislation in terms of provision of finance and personnel and support of organisations, advocacy groups and State agencies that offer assistance and support to people with disabilities.

I welcome the Minister’s statement that the mental capacity Bill will be published in this session. That is critically important legislation, for a number of reasons. There have been advances in how people are assessed. For many years, one was assessed once and that was it. However, due to treatment and better assessment procedures, people might have a mental capacity that is much diminished at times but at other times they might have full capacity. When that Bill is eventually passed, and I urge the Minister to bring it forward as quickly as possible, the key issue will again be support through whatever body will be prescribed in the legislation for assessing people.

There will have to be enough support in terms of having a critical number of people who can assess and make decisions on an immediate basis, rather than having people waiting for long periods for assessment as to whether they might have a mental capacity diminution or improvement. That will be fundamentally important. When the legislation is passed the supports should flow very quickly afterwards to ensure it will function in the context of assessing people and ensuring they do not wait for a long time, in effect in limbo, given that they might previously have been described as having a diminished capacity and it could now be much improved because of treatment or simply recovery from mental health issues.

There is another matter that we regularly discuss. In Cork recently the Minister of State launched an initiative to highlight the issue of suicide. We talk about and highlight the issue at times, but our society still has not come to terms with it. Suicide is still seen as a taboo and, in many cases, considered a shame on a family. We must move beyond this and see it as a societal issue that needs to be addressed on an individual basis and collectively. The Minister of State has spoken about suicide in a forceful and purposeful way.

Because of the huge financial pressure and all that flows from the downturn in the economy there is an increased incidence of suicide. We know this, but what have we done to address it? I do not expect the Government to address every personal problem that flows from debt or unemployment. However, we should have a conversation about what it is like to feel so isolated and alone in one’s own community that one sees suicide as the only option. When he assumed office, President Higgins spoke about the new republic. He spoke about the need for a conversation among ourselves and an attempt to define what was critically important. He suggested that for too long we might have adjudicated our own success and that of our community and country in purely material terms. While we see material gain as a barometer of success, those who do not have it may feel they have failed. We should have that discussion, but not merely in an abstract way. We must get to the root cause of why people feel so isolated in their own communities or families that they see suicide as the only way out.

[42]I wish the Minister of State well in making sure the disability strategy is continually pursued and monitored. The National Disability Authority will keep us updated in that regard. We must continually monitor the attitude of society to people with disabilities. If we are failing and those attitudes harden, this will become a regressive republic, something I would deeply regret. I urge the Minister of State to promote the disability strategy at every opportunity and to do so in a way that brings everyone in society on the journey to ensure people with disabilities can reach their full potential.

Deputy Jonathan O’Brien: Information on Jonathan O'Brien Zoom on Jonathan O'Brien I also welcome the opportunity to participate in this debate. I followed the debate in the Seanad on the issue which was productive and timely, especially when we consider the survey mentioned and the hardening of attitudes. It is right and proper that Deputies and Senators lead by example in dealing with disability issues. By having these conversations we can help to set out the strategy and, through legislation and our own attitudes, lead the debate in the right direction. We have a big responsibility to do this.

It is interesting that the three Deputies present in the Chamber represent the same constituency. We know each other outside the Chamber. Having served with the Minister of State in local government, I know she has always had and always have a genuine interest in this issue. That is why her appointment will reap benefits. She has mentioned that many of the policy initiatives we want to implement are dependent on receiving the co-operation of other Departments and Ministers. I hope that co-operation is forthcoming, as it is vitally important. We cannot use our economic woes or the recession as an excuse not to fulfil our obligations to people with disabilities.

The Minister of State mentioned the UN Convention on the Rights of Persons with Disabilities which we have not ratified. I have spoken to the Minister for Justice and Equality, Deputy Alan Shatter, and the Minister of State about this. It is the Government’s desire to ratify it as soon as possible. The legislation required to bring us up to the required standard, as well as the administrative work that needs to be done, are being examined. The mental capacity Bill will have a huge role in this regard.

I commend the Minister for Justice and Equality for bringing the Bill to the top of the political agenda. Much legislation is required in the justice area, some of which is troika driven. The Bill is scheduled to be introduced at the end of this month. A number of groups have forwarded submissions to the Joint Committee on Justice, Defence and Equality which they will discuss them with the joint committee and there will be a wide ranging consultation process which will benefit us. I look forward to the being Bill published and passed by both Houses.

We cannot use the current economic environment as an excuse to take our foot off the pedal with regard to the national disability strategy which will encompass many of the provisions that will enable us to ratify the UN convention. Speaking at a conference in Galway last December, a senior UN official said this was not the time for the Government to proceed at half speed in meeting its commitments to the strategy. He went on to say the recession presented no excuse for failing to meet these commitments. It is essential that the Government address the concerns of people with disabilities about the strategy and the manner in which it is being implemented. There needs to be real change in this regard. The programme for Government sets out the commitments to people with disabilities and states disability services will be a priority in the lifetime of the Government.

The Minister of State has cited transport as one of the areas in which there has been significant improvement. While there has been a significant improvement, there is more work to be done, as we saw last year when a case was taken against Bus Éireann which it lost. While we are taking gradual steps, there is more work to be done. I hope other Ministers and their [43]Departments will give as much priority to this issue as the Minister of State has in recent months. If they do not, they will fail her, as the person with special responsibility but, more importantly, they will fail those who are relying on us to implement the policy that will enable them to live full and independent lives and give them every opportunity to participate in life. As politicians, we should fail neither ourselves not the people who depend on us.

Departments were required to publish disability sectoral plans. Are these recommendations being progressed? One of the commitments set out in A Vision for Change tasked the Department of Jobs, Enterprise and Innovation of tailoring its services to meet the needs of those with mental health problems to help them back into employment and help those in employment to retain it. How are these reports progressing?

Other aspects of the national disability strategy need broader dialogue. The allocation of funding in the budget is key to that discussion. We cannot progress without the co-operation of those with the knowledge, as the Minister of State has recognised. The people on the implementation group set up by the Minister of State represent all spheres of life, which is important. We cannot be seen to dictate to people. We have to listen to them and we have to take on board their views. They have to be part of the process and buy into it. It is much more likely to succeed if we do that.

We have mentioned the survey. There is no doubt it is a worrying development. We have to reverse that type of attitude and the only way we can do this is by leading by example. I want to assure the Minister of State that I, and my party, will support any policy on this issue brought forward by this Government. We all have the same view on the issue. People would not disagree that we need to prioritise this area, even in these difficult times. We need to lead by example. The Minister of State has our full support on this and I wish her well.

Deputy Richard Boyd Barrett: Information on Richard Boyd Barrett Zoom on Richard Boyd Barrett I welcome the opportunity to discuss the very important area of disability. I do not doubt the Minister of State’s commitment to deal fairly with people with disabilities and to provide the resources and supports necessary for them. We are all human beings and we all want to see people treated humanely and in a dignified way. However, it is easy to talk about consulting and reviewing legislation. There is often a big gap between aspiration, even in legislation, and the reality on the ground.

I do not claim to be an expert in this area, but when one becomes a TD, one quickly meets people who are experts because they are dealing with situations of disability. Overwhelmingly, I meet people in desperate straits who are continuously frustrated and often driven to despair by the lack of resources and funding and the bureaucracy through which they must wade to get the support they need. I experience this on a constant basis in my office and in my clinics, and it is difficult not to conclude that all the pious aspirations in the world really mean nothing against a background of brutal cuts being imposed in health, social protection and other areas which are making the situation worse for people with disabilities. That is what we must address.

The facts which confirm this view are manifold. As was mentioned already, the implementation of recommendations in the document, A Vision for Change, has not taken place. This document was commissioned in 2006 and it is a very good document that sets out to develop a framework for delivering mental health services in a holistic way. It is precisely what is needed. However, there has been no implementation of that policy. The new Government committed, at the beginning of the year, to delivering on A Vision for Change, but has come up short. A Vision for Change promised community care, minimising hospitalisation, more occupational therapists, more social workers and more advocates. However, due to the public sector recruitment embargo and the public sector retirement scheme, the reality is that we do not have enough of these staff and we are actually losing them. How many such staff will [44]we lose as a result of the public sector retirement scheme? How many have we lost due to the embargo?

While A Vision for Change promises precisely the right things, in reality, mental health is still being dealt with in terms of hospitalisation, medicalisation and a lack of autonomy for the patients. This was highlighted yet again before Christmas with the Louise Bayliss affair at St. Brendan’s Hospital. This shows the woeful failure to implement A Vision for Change.

The Government has promised that €35 million will be ring fenced for mental health, but Amnesty International has pointed out that unless that money is ring fenced for community mental health services, it is simply plugging the gaps left as a result of the general cuts in funding across the health service, as well as the recruitment embargo and the loss of staff across the HSE and the mental health services.

I have a friend whose 80 year old aunt had severe mental health problems. She was coping relatively well at home with a community mental health nurse who came to visit her at least once — sometimes twice — a week. As a result of the embargo, those visits were reduced to every fortnight or less and consequently she had to go into hospital for a year. That is just one example of the failure to move in any serious way in the direction of delivering A Vision for Change. It can be delivered only if we have the adequate staff and resources, but all of the cuts and reductions in funding are moving us in precisely the opposite direction.

I would also like to make particular reference to the domiciliary care allowance. This is a monthly payment to the carer of a child with a disability. The criteria for the allowance are so severe that the child requires care and attention and supervision substantially in excess of another child of the same age. The allowance was administered by the HSE until 2009 and since then it has been administered by the Department of Social Protection. The problems really began from that point, coinciding with the economic crash here. I have a constant stream of people complaining about this to me. Even though they get diagnoses from medical professionals clearly stating that their children meet the criteria and require care and attention or supervision substantially in excess of another child of the same age, they are refused the domiciliary care allowance. I am getting a constant stream of complaints in this regard. It is difficult not to conclude that this is an austerity measure, a tightening of the austerity screw and that a directive has been issued that people should be refused if any excuse can be found, even if they meet the criteria laid down. If they appeal the decision and can wade their way through the bureaucracy, bang their heads of the wall for long enough, some of the applications may be granted on appeal. The families in question are suffering as a result. It amounts to unfair treatment of the most vulnerable sectors of society. It seems to be nothing more than a cost-cutting exercise, presumably following the logic that if people are refused over a period of many months, they will eventually give up and decide not to appeal or if they do and succeed in their appeal, the State will have saved itself a number of months of payments while the appeal was being processed.

I have some examples to illustrate and reinforce the point. John from Ballybrack is in the Visitors Gallery. Last August his son, Harry, aged nine years, was diagnosed with autism spectrum disorder. He was refused domiciliary care allowance in October, even though he had psychiatric and GP assessments stating clearly that he needed care and supervision substantially in excess of that required by another child of the same age. He needs constant care and attention by his parents. His mother has had to take time off work and is suffering from depression as a result. He needs help eating and dressing and can only be brought to school or collected by one or other of his parents. Recently he has had to attend a special school for children with autism because his condition prevents him from continuing in mainstream school.

[45]I refer to the opinion of the medical professionals on Harry’s qualification for domiciliary care allowance. The medical certificate states he has been diagnosed with autistic spectrum disorder by Dr. Anne O’Donovan, consultant child psychiatrist at the Lucena Clinic. It states he has a severe disability and needs full-time care and attention far beyond what is normally required by a child of his age. The response of the Department of Social Protection to this medical opinion states:

It is clear from your application that your child requires additional support. However, while the diagnosis of your child’s disability is not in question, the medical evidence provided does not indicate that the extra care and attention required is substantially in excess of that required for a child of the same age.

The medical professional’s opinion is that he requires full-time care and attention far beyond what a normal child would require. The word “far” is stronger than “substantially”. However, the application for the allowance has been refused at the stroke of a pen. I ask the Minister for an explanation. This is but one instance; I have had a great number of cases coming to my clinic and know that other Deputies have encountered the same problem. How is it that officials are making these decisions when the medical evidence and all of the circumstances surrounding the applications make it clear that such cases should be entitled to domiciliary care allowance, but they are still being refused? It is difficult not to conclude that the simple reason is austerity, that there is a directive that people should be refused if at all possible in the first instance in the hope they will go away, or else the hope is to make some savings if applicants are frustrated for a few months. The result is extreme suffering for vulnerable children and their families who need this money. For example, Harry cannot do what children want to do, including playing football, going to a local club or attending swimming classes. Such activities cost approximately €150 a year, but in his case the one activity he likes to do — playing in a centre which caters particularly for children with autism which is located in County Kildare — costs €60 for each trip. His parents need the money they are being denied to care for a child who, self-evidently and based on the clinical evidence available, needs this support, but the State or the Government or both are refusing to give it to him. This situation has to change, otherwise all the pious aspirations mean nothing.

I refer to another example involving a woman with a five year old son who has autism and speech difficulties, is not toilet-trained, cannot feed himself and attends a special needs school. She received domiciliary care allowance for two years but suddenly last November the Department of Social Protection informed her that the allowance was being reviewed. A GP had certified that the young boy needed care and attention in excess of that required by a child of the same age. In a letter dated 12 January the Department indicated that the allowance was being withdrawn from 31 December. One must question what the Government has got against children with special needs. This is unacceptable treatment.

I appeal to the Minister. I have no doubt about her sincerity, but the policies of austerity being pursued by the Government and the budgetary decisions hitting the most vulnerable and disadvantaged in society mean human suffering for persons who need more support than most of us. It is simply obscene to deny families and vulnerable children that support.

As the Minister well knows, there are many other instances and examples of problems in the disability sector. I refer to the situation in St. Michael’s House, the budget cuts, the number of families in crisis, the number of new families looking for services every month, services not having adequate resources or staff, the number of people on waiting lists for occupational therapy and speech and language assessments. The list goes on. The most vulnerable persons, about whom we are always talking about protecting, are the victims of the austerity measures, a Government policy to prioritise the paying-off of bankers and bondholders, instead of looking [46]after the vulnerable sections of society. I appeal to the entire Government, not just the Minister, to change its priorities in order that people like Harry among the tens of thousands of young vulnerable children who are being treated abominably will be given the support and help they need.

Deputy Robert Dowds: Information on Robert Dowds Zoom on Robert Dowds It is difficult to estimate exactly the number of people with disabilities. However, the figure seems to range between 10% and 18% of the population. One set of figures for 2006 indicated that there were approximately 36,000 people in the age group to 17 years; 172,000 in the age group 18 to 64 years, and 117,500 in the age group over 65 years. It is very difficult to define disability; however, one looks at it as a continuum. Because people are living longer, a growing proportion of the population will have a disability which could affect their sight, hearing, speech, mobility, intellectual or mental capacity. One size does not fit all in this regard, which presents a real problem for the Government. For instance, some people with a physical disability need significant support, while others will have multiple disabilities.

Some people with physical disability have a mild disability and therefore do not have much need for extra supports. That presents a problem for the Government in the sense that it is difficult to assess how to treat people in the round. For that reason, to the greatest extent possible, people need to be treated on the basis of their individual circumstances.

I say that in particular from my personal involvement, as I was a teacher of children with physical disability for more than ten years before I got elected to the House in February 2011. That experience demonstrates the fact that people with disability ought to have a direct say in anything that affects them. If possible, I would like to enshrine that in law to the greatest extent possible. From my conversations with the Minister of State, Deputy Kathleen Lynch, she accepts that.

  2 o’clock

Often, interventions for people with disability are well intentioned but often wrong headed. I will give two examples to illustrate the point. When I was elected councillor, a new swimming pool was built in my area in Clondalkin. As soon as it was mooted, I immediately asked that the pool would be made fully accessible to people with a physical disability. I was assured at all times that this would be the case. Towards the end of the construction period, however, it became apparent that the changing rooms were not suitable for people with a physical disability. While the council made some effort to adjust the facilities, it was not ideal. The seat to take a person with a disability out of the swimming pool was inadequate in that one could not wheel the chair into the changing rooms and one had to move from the chair into an ordinary wheelchair which made the process more complicated. South Dublin County Council has a good record of trying to provide for people with disability. I know that no harm was intended but it should have been possible to have delivered the swimming pool in a way that really suited people with disability and probably at no greater cost.

I hope the Dublin Airport Authority hears of my next example which relates to Terminal One. There are several toilets for people with a physical disability. However, all of them are designed in such a way that people with a good left-hand grab can use them easily but if one has a good right-hand grab, one cannot. It would have been preferable if half of the toilets were designed for one lot of people and the other half were designed for the other. When that was pointed out, the point was accepted but, again, there was insufficient consultation with people who knew the problems people encounter.

Another problem that concerns me in respect of people with a disability is the area of work. Sadly, the majority of young adults with disability suffer from unemployment. While it is clear that a blind person cannot drive a truck and someone with a severe physical disability cannot [47]work on a building site, that does not mean that those people are unfit for work. Many areas of work could suit people with a wide range of disabilities. In that regard I pay tribute to South Dublin County Council which has made a real effort to employ people with a variety of disabilities. It has people on its staff with disabilities ranging from severe sight loss to severe mobility problems. That model needs to be followed on a more widespread basis. Obviously, it must be done in conjunction with the design of buildings being suited to people with disability.

Another important area is personal assistance, which is a difficult matter to discuss in the current economic woes. For adults in particular, however, it is important that we strive to allow people with disability to live as independently as possible and not to continue to depend on their parents well into adulthood. I appreciate that it is a costly objective but that is an important area of concern if we are serious about tackling disability and giving people equal rights.

I wish to deal briefly with the tricky issue of disability payments. The fact that people with disability vary so much in the extent of their disability means, in a sense, that there needs to be flexibility in terms of the allowances paid to people with disability. Again, I appreciate that this would probably require more administrative work, but by doing so it would be possible to target people with greater material needs with more resources and to provide less resources for those with less disability. It is a difficult area but that must be done if the issue is to be tackled fairly. From conversations with the Department of Social Protection, I am given to understand that an announcement will be made soon in respect of new measures to help disabled people gain meaningful employment. I look forward to that with interest.

Many people say that everyone with a disability should be mainstreamed in schools. That is true in many cases but it is not always the right approach. For a certain section of people with disability there needs to be some specialised schooling. It is a case of one size not fitting all. For example, where possible, the school I worked in encouraged every child who came in at junior level to transfer to a mainstream school as soon as possible. The reality is that it was not possible for all of the children but it was for some. That type of flexibility is required throughout the services.

Deputy John Browne: Information on John Browne Zoom on John Browne I wish to share time with Deputy Robert Troy and, possibly, Deputy Charlie McConalogue.

An Leas-Cheann Comhairle: Information on Michael Kitt Zoom on Michael Kitt Is that agreed? Agreed.

Deputy John Browne: Information on John Browne Zoom on John Browne I welcome the Minister of State, Deputy Kathleen Lynch. I wish to say a few brief words on the national disability strategy. It is important that we would continue with a strategy for people with disabilities. It is not all about money either; it is about having a proper strategy in place to recognise the different strands of disability and also to give people with disability a say. Everyone has a solution for people with disabilities and too often the person with a disability is not involved in the implementation of the policies.

I must declare a vested interest in that I have a daughter with a disability — spina bifida. I have been very involved with Spina Bifida Hydrocephalus Ireland, the Irish Wheelchair Association and many other associations in my county through the years. We have come a long way from 25 years ago. When my daughter went to St. Aidan’s primary school, there was no personal assistant, PA. She then went to Enniscorthy vocational school where there was one PA between five students. A former Deputy in this House, Mr. Tony Dempsey, was then principal. He made the case for a PA for five students at that time. Dr. Michael Woods was then Minister. It was the first PA approved in County Wexford. Now every student attending Enniscorthy vocational school, and every other school has a PA, and rightly so. I hope that situation will continue. Despite the State’s austerity measures and financial difficulties, I hope we will con[48]tinue to support people in education. Irrespective of whether people have disabilities, it is important that they be given an opportunity to enhance their education and, if possible, get jobs.

The question of jobs raises issues. When I ask a company for €1,000 or €5,000 to pay for a function for people with disabilities, I get it more often than not, but if one asks the company to provide such a person with a job, the result is different. This is despite the fact that many people with disabilities are highly skilled, highly trained and highly educated and can probably do a job as well as any able-bodied person. However, some people are not prepared to give them a chance.

My county of Wexford had the legendary late Fr. Anthony Scallon. His approach was to develop strategies for people with disabilities and to let someone else worry about paying for them. The County Wexford Community Workshop, St. Michael’s day care in Gorey, St. Clare’s day care in Enniscorthy, the Ard Aoibhinn Centre in Wexford and St. John of God in Enniscorthy exist because of Fr. Scallon and a group of people recognised the need to provide services for people with disabilities. In whatever cutbacks are made, it is important that we not reduce the funding available to these and similar community groups across the country.

The cutbacks in respect of people with disabilities created many problems during the budget. The Minister of State, Deputy Kathleen Lynch, was involved in pausing the cutbacks. I hope the delay will become permanent, so that people in receipt of €188 per week will continue to receive it. The amount is not large. Most people with disabilities are not able to drive and must avail of public transport or taxis. Nearly everywhere my daughter and her friends go, they travel by taxi. It is not because their parents will not drive them, but because they like to be independent, do what they want and go to and from community centres or discos under their own steam.

I will take a further minute of Deputy Troy’s time to discuss the issue of informing families about disabilities. A number of organisations in Cork are doing this worthwhile work. There is a great deal of trauma and soul searching on the part of parents when they are informed that their child has a disability. It causes problems within families. Support and help are required. The Minister of State should consider the matter. The Cork template could be developed for the rest of the country. From my family’s situation and what I know of other families, people’s outlook on how they will cope changes when a consultant, doctor or nurse informs them that a child has spina bifida or another long-term illness. Since one always wonders what will happen to the person with the disability when one passes on, families must be supported in this regard as well. It is important that the Minister of State include this matter in the national disability strategy.

I thank the Minister of State for her interest in this field. From speaking with her, I know she has a genuine interest in it and that she will fight her corner at the Cabinet table to ensure that people with disabilities are protected. I hope we will be able to enhance their supports in the years ahead.

Deputy Robert Troy: Information on Robert Troy Zoom on Robert Troy I thank Deputy Browne for sharing his time with me. This is an important and proper debate, given that 18.5% of our population experiences some level of difficulty.

An alarming statistic stood out from the national survey of public attitudes to disability, in that only 44% of people believed that people with disabilities were treated fairly. While this is a small increase on the 2006 figure, it remains a matter of concern and must be addressed urgently.

[49]I welcome the Minister of State’s statement that this session would be a sounding board. I hope that she will take on board some of our suggestions. She also stated that the “percentage of people who said they would object if a child with intellectual disability or autism was in the same class as their child went up from 8% in 2006 to 21%”. The level of support in the school system and the number of special needs assistants, SNAs, must be reviewed to ensure a sufficient level of SNAs in mainstream education. The provision of these supports in recent years was of major benefit. People would be concerned if people with special needs were not given the level of support they needed to stay in mainstream education.

I am glad the Minister of State acknowledged the great deal of good work done in recent years in terms of disability awareness. It is only proper that we learn from what we did right as well as from our mistakes.

Deputy Jerry Buttimer: Information on Jerry Buttimer Zoom on Jerry Buttimer The good work was done by the voluntary organisations in Cork.

Deputy Robert Troy: Information on Robert Troy Zoom on Robert Troy The Minister of State mentioned that she would include the County and City Managers Association, CCMA, for the first time, but it is local authority members in towns and counties who decide where money should be spent at Estimates time. A great deal of good work has been done by a former independent member of Mullingar Town Council to create awareness and to ensure that a safety audit was conducted. The audit called for additional footpaths, tactile paving and so on. Perhaps it would be more appropriate to include elected members via the county and city mayors association. In light of last week’s paper, I am concerned that the Government seems to be diminishing the role of local authorities in local democracy.

If the cuts to allowances for people with disabilities participating in community employment, CE, schemes proceed, people with disabilities will not opt to join CE schemes. An extra €20 per week and 18 hours of work would provide invaluable training for those people and might allow them to find full-time employment.

Deputy Boyd Barrett articulated the discrepancies in the domiciliary care allowance. I would like to speak on the matter further, but time does not permit. It is an issue of concern to the many families of people with special needs.

Deputy Jerry Buttimer: Information on Jerry Buttimer Zoom on Jerry Buttimer I welcome the Minister of State, Deputy Kathleen Lynch for this important debate. Deputy Boyd Barrett is no longer present, but I wish to clarify that there are excellent services, that disability and mental health are differentiated, that “A Vision for Change” is separate from the disability strategy and that €35 million has been ring-fenced by the Minister of State. I compliment her in respect of that.

One would imagine from Deputy Troy’s comments that Fianna Fáil had done nothing but good for the past 14 years. The reality is that, only for the voluntary organisations to which Deputy Browne referred, we would have no services in many cases because they were competing against the Department of Health and Children and the HSE.

Deputy Robert Troy: Information on Robert Troy Zoom on Robert Troy It was not all bad.

Deputy Jerry Buttimer: Information on Jerry Buttimer Zoom on Jerry Buttimer This important debate is about the delivery of specialist disability services. Those services are provided by a diverse range of groups in a variety of community and residential settings. Disability services operate effectively because of the integration and co-operation of non-statutory, voluntary and community groups. I take this opportunity to pay tribute to groups such as the COPE Foundation in Cork which do Trojan work through the efforts not only of staff but of the family of friends of the people availing of their services.

[50]The significance of these groups is clear when we consider that the Health Service Executive’s service plan for 2012 includes 9,100 residential places and 18,600 day service places. That is a substantial provision no matter what way one looks at it. The Minister of State, Deputy Kathleen Lynch, indicated in her opening statement today that the Government’s objective is an enhanced quality of life for people with disabilities. The national disability strategy must be focused on the people it will benefit by way of the services it provides to them and their families.

Deputies opposite will undoubtedly refer to the expenditure reductions introduced in the budget. That is to be expected, but what we must focus on is our objectives in all of this. There are two points to make in this regard. First, we must mitigate the impact of adjustments on individuals and families. Second, as Deputy Billy Kelleher will know from his time in government, many service providers have already begun achieving efficiency within their own organisations. I hope those organisations which have delivered savings while maintaining the highest standards of care will be duly recognised. I must declare an interest in this as a member of the COPE Foundation in Cork. On the other hand, organisations which have not achieved the same levels of savings and efficiency must do so now. They must work with the HSE to reform their management structures and implement the necessary changes. The HSE itself has a critical role to play in offering flexibility and co-operation in its dealings with these groups.

There is a huge variance in the disability services available across the State. Some have developed in an ad hoc way, being mainly provided by voluntary bodies. Traditionally, there has been no global overview and no uniform model of service provision. Instead, different health board regions and voluntary bodies developed services based on local need and demand. This has worked very well in many instances, offering local control and allowing families to feel personally involved in the service being provided. Moreover, it has minimised the need to deal with cumbersome State bureaucracy. However, the drawback is that models of best practice were not utilised across the country and not every organisation operates at the same level of efficiency.

If we are to reform the provision of disability support, we must ensure that we deliver high-quality, efficient services uniformly across the country. We must plan for the provision of disability services on a regional and national level. Whether in terms of resource allocation, service provision or the duplication of costs, we must strive to eliminate geographical or sectoral inequity. The Minister of State referred to the expert reference group on disability policy. Public consultation carried out by the group shows that people with disabilities and their families would like more choice in the services they receive and more control over how they access them. To facilitate these preferences, the group proposes moving towards individualised supports and individualised budgeting. This is, in effect, a model of direct payments or brokerage.

It is important to ensure that there is independent support and advocacy for individuals within such a system. It will fundamentally change the way in which services are delivered and the power relationship between people with disabilities and service providers. We must safeguard against the provision of services on the cheap and maintain professional standards and quality provision focused on best practice. There will be a need for significant training and investment in mainstream services. We must also be aware that individualised supports will be dependent on the voluntary and local community to sustain them. At present the capacity is simply not there.

Last June the HSE published a report, Time to Move on from Congregated Settings — A Strategy for Community Inclusion. Implementing the recommendations of that report will [51]result in dramatic changes for people with disabilities, their families and service providers. The report proposed moving the 3,600 people currently living in congregated settings to dispersed forms of housing in ordinary communities, to be provided mainly by housing authorities. Congregated settings are defined in the report as “living arrangements where ten or more people share a single living unit or where the living arrangements are campus-based”. A cluster of three or four houses, each with three or four residents, could come within this definition. The report proposes a move away from this model within seven years.

This is a cause of concern to parents whose children are living in clustered accommodation. The reality is that there is insufficient capacity in many areas of the country outside of these congregated settings. While proposing a seven-year programme of change, the report does not provide a plan for that transition. Nor does it provide estimates of the costs involved. We must consider whether it is appropriate to do away with all congregated settings. People have different levels of disability and different care needs, and we must ensure we cater for everyone. As people with disability age and become more dependent, the appropriate facilities must be available to cater for them. If we abandon all congregated settings, are we to expect nursing homes to cater for older people with disabilities? If so, there are significant implications for how nursing homes and community hospitals operate and for service provision within the community. Moving on from congregated settings is a complex transition. Should we choose this as our model of service provision, we must ensure all persons with disabilities, at all stages of life, are catered for.

I commend the Minister of State on her lifelong involvement with disability and her close working relationship with many organisations across the country long before her appointment. Several challenges lie ahead in regard to the delivery of adult disability services in the next ten to 15 years. Significant advances were made in recent years in the provision of childhood disability services. The next logical development is in respect of the transition from childhood to adulthood. As people leave the school system we must ensure there are sufficient services in place to cater for their needs, be it sheltered employment, housing and so on. We must replicate the current child services model to cater for adults. Ensuring that these provisions are in place will have cost implications for public finances and service providers.

My father used to say, when he worked in the COPE Foundation, that we have a responsibility to look after people from the cradle to the grave. That is what we should work from and toward. I compliment the Minister of State on her speech today. She did not shirk her responsibility and was clear in her objectives. I very much welcome the reference to a mental capacity Bill and to the UN Convention on the Rights of Persons with Disabilities. We have obligations we must meet. It is not all about pounds, shillings and pence. Rather, it is about looking after the needs of those who are, according to the old Irish saying, duine le Dia. During a recent visit to the COPE Foundation, I saw the joy and contentment of the individuals who are looked after there. It is a testament to the staff and the quality of care. I hope we never lose sight of the imperative to provide quality care as our main priority.

Deputy Caoimhghín Ó Caoláin: Information on Caoimhghín Ó Caoláin Zoom on Caoimhghín Ó Caoláin An opportunity to address the issue of disability on the floor of the Dáil is always welcome, even in the limited form of statements. The heading for this debate, namely, Development of the National Disability Strategy is deeply ironic. How is any real development of that strategy possible when the very services and supports that assist people with disabilities are under continual attack from this Government? As I stated recently at a rally in Ardee, it is not that the Members of the Government parties are bad, rather it is that they are pursuing bad policies. This needs to change immediately. I appeal to Government members to ensure that this is done. If I believed Government Members were bad there would be no point in my appealing to them.

[52]Yesterday, the Psychiatric Nurses Association revealed the shocking truth in regard to the loss of front line staff in our mental health services and the terrible effects of this for people with mental illness. The point was well made by the PNA that while strategies to increase awareness of the reality and danger of suicide, to address the need for prevention and to reach out to those in danger are necessary, if there are not in place services to help people when they seek it, we are cruelly leading people up a blind alley. The same applies to disability. We can talk until the cows come home about developing the national disability strategy but if the State is failing in its duty to vindicate the basic rights and entitlements of disabled people then we are talking in a vacuum. If the services are being cut back then the strategy remains but a piece of paper which has no meaning in the lives of real people, which, sadly, is the situation presenting today.

This Government and its predecessor have talked much of moving from institutional-based care to community care across a range of sectors, including disability and mental health. However, the reality is that community-based services across the board are also under attack. Ms Deirdre Carroll of Inclusion Ireland, whom the Minister of State, Deputy Lynch knows, stated in the wake of Budget 2012:

The situation for people using services is growing increasingly bleak, as services continue to be cut, and charges are introduced in areas such as respite and transport. Given the economic situation, it unfortunately looks like this will continue, which causes massive worry and stress.

We must ask what strategy is guiding a Government that would propose savage cuts to disability payments to young people and then withdraw them following the justifiable anger and protests of people across this country, including its own backbenchers? It is certainly not a strategy based on fairness, proper planning or the rights of people with disabilities. The HSE National Service Plan 2012 imposes a 3.7% cut on disability services. The impact of this is not yet clear as the HSE and disability organisations are still assessing how it will be implemented across the complex range of services and supports throughout the State. However, the HSE has admitted that there will be reductions in day, residential and respite services, which is evident in my constituency. I am sure other Deputies have had similar situations brought to their attention.

The Disability Federation of Ireland stated in the wake of Budget 2012 that for Government to be penny wise and pound foolish is not a sustainable way to proceed.. It also stated:

Supports and services that keep people well and able to continue to operate in the community, and with their families, are the best way to reduce demand on high cost hospital and institutional provision. Investing in this area where there are many voluntary organisations that are close to families and that are continually promoting community participation and engagement is the way to maximise outcomes for people while dampening the need for hospital and institutional interventions.....

There was a concern expressed in some quarters that the reduced cut to disability this year necessitated greater cuts to hospital services. People with disabilities also strongly rely on services provided by hospitals and don’t see the issue as one against the other. In fact by maximising supports for people in the community there will be reduced demand on hospital services. The best way to assist hospitals is to work to ensure that there is less demand for their services.

We all recognise that commonsense approach. However, it appears that these basic lessons are lost on this Government. Account must also be taken of the other cuts that directly affect [53]people with disabilities but do not come under the heading of disability, including health care, social protection, education, transport and local government services. All of these are targeting the most vulnerable in Irish society, among them people with disabilities.

I am reminded of the response some 12 months ago of the Minister of State’s colleague, Deputy Burton, to Budget 2011:

There is pain for the poor, money for the rich, particularly for the bankers, and the rolling back of the State . . . There is no modern example of a developed economy deflating to this extraordinary degree but claiming it can grow . . .

There certainly is pain for the poor and money for the rich. The Finance Bill 2012 published yesterday reveals the Government’s plan to give tax breaks to wealthy executives in what can only be described as the true tradition of the Leas-Cheann Comhairle’s colleague, the infamous — or famous depending on one’s point of view — former Minister Mr. Charlie McCreevy. Meanwhile, people with disabilities are anxious and uncertain about the future of their services and supports.

Sinn Féin has called for a review of the disability Act, with a view to the introduction of a new rights-based disability Act alongside a robust enforcement mechanism and the establishment of a disability ombudsman. The Minister of State, Deputy Lynch, will recall the work she, I and many other Members did on the disability Act and our strong contention that it had to be rights-based in times of economic distress, such as we are now experiencing, to protect the most vulnerable who cannot protect themselves, which certainly includes those in the disability sector.

Sinn Féin has called for over-arching responsibility for the national disability strategy to rest with the Department of the Taoiseach and for annual targets to be set for delivery by 2016. This makes eminent sense. It has also called for a major pilot study on direct payments to include individuals from across the disability spectrum. We need to define people’s qualifications for personal assistance services, supporting independent living for disabled people and to regulate in law the provision of these services to ensure proper standards. These are the type of practical measures needed to make a disability strategy meaningful. I believe the Minister of State concurs with this. Implementation of the strategy thus far has been disappointing. The Disability Federation of Ireland, DFI, has also stated:

On the one hand, there is no coherent picture of how Ireland is progressing towards the agreed goals; information about what outcomes have been achieved is very sketchy. On the other hand, it has been far too easy to use the economic and fiscal crises to sidestep the NDS instead of factoring it into crisis planning.

This is what is happening in so many areas, allegedly under the umbrella of current fiscal challenges. Cuts and changes are being introduced across all sectors. One would have to question the real motivation and intention behind much of it.

There are choices to be made. As I stated earlier, this Government is following bad policies and making the wrong choices. Austerity is not and will not work. It is trampling on the rights of people, targeting the most vulnerable and storing up more pain and inequality for the future. People with disabilities have had to fight for what they have gained in recent years. I am confident that people in this sector, many of whom I have met and know, will not cave in now. As Members of this House, we have a responsibility to give expression to their anger and dismay and to echo their appeal to the Minister of State and her colleagues in Government to re-examine their approach to this sector. A fundamental change in direction is required.

[54]Deputy Simon Harris: Information on Simon Harris Zoom on Simon Harris I thank the Minister of State, Deputy Kathleen Lynch, and the Government for making time available in this House to discuss disability issues in the context of the implementation of the national disability strategy. It is important that Members have interactions across the House on such issues regularly. In the past, there have been highly successful debates on the issue of mental health, in which Members have shared and exchanged ideas on reform and the ways forward and this also is true in respect of the area of disability.

This debate is timely and comes in a week in which parents of autistic children rightly have been outraged, hurt, upset and insulted by ignorant and ill-informed comments in an article that appeared in the national media, of which I am sure many Members are aware, and which effectively attempted to blame parents for making their children autistic. I have never heard such nonsense. Everyone is entitled to his or her opinion but this sort of sensational comment, made in an effort to engage in self-promotion and nothing else, does irrefutable damage to the years of work undertaken by parents, carers and advocacy groups to try to achieve recognition in the first instance and, second, support and resources for their children with conditions on the autistic spectrum. I hope Members on all sides of the House will join with me in echoing these comments to enable the Oireachtas to send out a strong message that Members stand firmly behind the families of autistic children in distancing themselves from those sensational and ill-informed comments.

This debate comes at a time in which many people with disabilities are under severe pressure due to the economic situation of the country, and many Members have commented in this regard. I have absolutely no doubt but that money can be saved in the disability sector, just as it can be saved in all other sectors. There is, however, an onus on the Oireachtas and on the Government to find such savings in a way that does not affect the person with the disability. The present Government, its predecessors and the State as a whole have been lacking in this regard. In other words, Members must advance the reform agenda, that is, an agenda which empowers people with disabilities, which directs money to those who actually need it and that reduces and removes the costly bureaucratic challenges that people with disabilities face.

The programme for Government espouses in clear terms this reforming agenda, as I am sure did the manifesto of each political party and of each individual Member of the House. The Dáil is no doubt united in its desire to bring about positive reforms in this area but to be frank, for far too long people with a disability have heard such platitudes in promise after promise and in words not matched by actions. This is not a political point but simply is a reality for many people living with a disability and is something for which everyone who has been involved in political life must accept a degree of responsibility.

In any debate on disability services, it also is important to note that funding and hard cash are not a solution in themselves for disability services in Ireland. That is not to state they are not very important but without proper reforms, such funding is failing to make the impact it could. More crucially, issues regarding the rights of people with disability and their dignity as full citizens of this State require cultural and policy changes, as opposed simply to money. If funding alone was the problem, surely the years of economic boom would have addressed the many challenges that remain for people with a disability in Ireland. I saw this in my constituency of Wicklow, where I established a support and lobby group for families living with autism during the boom years. Although there was no shortage of money, the queues for the access to services still existed, the problem with diagnosis still existed and the lack of educational supports continued. While it is absolutely valid for all Members to point out problems arising from any cutbacks introduced by the present Government or any other, it is important to conduct the debate on disability in the context of being aware and informed that the issue is not simply about funding and that a greater shift must also occur.

[55]I acknowledge some positive developments that have been undertaken by the Minister of State, Deputy Kathleen Lynch, and by the Government to date. For example, the Minister of State’s commitment to dusting down and re-engaging with the national disability strategy is most welcome. The programme was launched in 2004 and given both the lack of progress in implementing it to date and the changed times in which we live, a revised and realistic plan for its implementation is most welcome. In particular, the direct involvement of people with disabilities in working on this plan is an extremely positive development, for which the Minister of State deserves much praise. I am glad the Minister of State is taking steps to ensure the service users themselves are involved in discussions on disability policy. For too long, representatives of groups and organisations working in the sector have been accepted as speaking for all people with disabilities. Such people have a voice themselves that must be heard and I thank the Minister of State, Deputy Kathleen Lynch, for bringing that voice to the table. The publication of the new mental capacity Bill, which is expected in this Dáil session, will be widely welcomed. It is deeply insulting that the interactions between vulnerable people and the judicial system still are governed by the appallingly titled Lunacy Act dating back to 1798. All Members are aware that not only is the terminology used by the current legislation highly insulting to those who fall under its remit but it is wholly unfit for purpose. The enactment of this legislation is also one of the key outstanding requirements before the State can ratify the UN Convention on the Rights of Persons with Disabilities. I am sure the Minister will do everything possible to expedite this as it must happen as quickly as possible. There is, however, no point in me focusing on the positives because many challenges exist that I wish to highlight in the time available to me and of which the Minister of State is aware.

Almost 75% of money spent on disabilities is paid directly to service providers instead of to the end-users of the service. This is insulting and I ask Members to consider what other group of people would be told that while money was being allocated to them, they would not be allowed to decide how to spend it and that it would be given to a third party. People with disabilities still are consumers and still are citizens and must be able to choose which services they want to avail of, what training best suits their needs or what residential accommodation they prefer. Giving service users control over the way their money is spent also would ensure the State supports programmes for which there is a demand among people with disabilities and would make a huge difference in this area. Equally important is the need to ensure appropriate standards are followed in all areas of this sector. Deputy Buttimer referred to the 9,000 people with disabilities who live in residential care but the Minister of State is aware that at present, no statutory independent inspection of these services is in place. I acknowledge the Minister of State has prioritised this issue, which is a matter of huge concern to many. The programme for Government includes a specific commitment to put these standards on a statutory footing and to ensure such inspections take place and this cannot happen soon enough.

I wish to make a conceptual contribution to this debate, which is that people must desist from using the broad term, “disability”, as something into which one fits and which is one’s label in that one is a disabled person or a person with a disability. One must begin to consider the individuals behind this label and, with this in mind, I note statistics show that two thirds of young adults with a disability want to work. The Government must act on this desire and give such people the tools and supports they need to enter the workforce. This needs to be a life-long commitment and requires a two-fold approach. First, one must ensure children with disabilities are able to avail of all the early-interventional services and educational supports they need to fulfil their potential. I do not have the time and this is not the appropriate place to enter the debate on special needs assistants but their role and the criteria behind them must be examined to ensure this resource is being put to work effectively for children with special needs. Second, the additional range of supports that people with disabilities require to enter [56]the workforce must be put in place. I refer to supports such as appropriate training, incentives and job support mechanisms.

In my experience, people with disabilities do not want a social welfare cheque thrown at them. During my short time in this House, however, all the debates appear to have centred on questions such as what level of disability allowance is being paid or what is the level of the domiciliary care allowance. Members must consider how to empower people and must move beyond this. The recent budget demonstrated a lack of understanding on the part of the entire House, as a political institution, in this regard and this must be addressed. Consideration must be given to supporting those with a disability who cannot work. However, as for those with a disability who yearn to work, I note the State is not allowing them or facilitating them to so do. The reality is many people with disabilities are caught in a poverty trap, which cannot be addressed simply by increasing or reducing social welfare levels. In Ireland, people with disabilities are two and a half times more likely than the general population to live in poverty. This makes workplace supports to help people with disabilities access the jobs market all the more important.

I will revert to an issue I raised last week with the Minister for Social Protection regarding domiciliary care allowance. I believe the Minister of State was in the Chamber at the time. While the Minister responded to me with a comprehensive reply, I must reiterate there is a real issue in this regard. Something is going on at official level or otherwise within the Department of Social Protection. Somewhere in some office, someone has decided to make it more difficult for families of children living on the autistic spectrum to access a domiciliary care allowance. Literally hundreds of people have contacted my office since I raise this issue. They are not making it up and are not imagining it. Autism is a neurodevelopmental condition, not a medical one, and it is quite difficult to fit that criterion of the domiciliary care allowance application form. I ask the Minister of State to examine this issue because this level of support for families of young children with autism is of huge importance.

I will conclude by voicing my deep concern that there is a growing hardening towards, and a lack of understanding of, the complex issues faced by people with disabilities and their families. I referred earlier to a recent article about autism. What was outlined therein is not the only indication of the shift in attitudes that has occurred. A survey on people’s attitudes to disability which was carried out by the National Disability Authority contains some extremely worrying responses. For example, 20% of respondents indicated that they would object if a child with an intellectual disability was placed in their child’s class. The figure in this regard in 2006 was just 8%. We could ask whether this attitude relates to the scarcity of resources and the impact of the recession, and the answer is that it could quite possibly be the case. However, concerns regarding monetary issues have nothing to do with the fact that two out of three people are of the view that those with intellectual disabilities should not be allowed to have children. The latter has nothing to do with cutbacks, SNAs, resources, etc., but is, rather, a cultural attitude which obtains. The numbers in this regard are rising and we must inquire as to what is going on. That is what I mean when I say that this matter relates to much more than funding. There is a need to engage in a cultural debate.

The numbers to which I refer are truly shocking. They highlight the pressing need for the Government to encourage informed debate in respect of disability issues. I hope this debate — to which the Minister of State referred as a sounding board — will not be a one-off event and will instead mark the beginning of an ongoing engagement. I again thank the Chair for the opportunity to contribute.

[57]An Leas-Cheann Comhairle: Information on Michael Kitt Zoom on Michael Kitt I call Deputy Maureen O’Sullivan who is sharing time with Deputy Pringle.

Deputy Maureen O’Sullivan: Information on Maureen O'Sullivan Zoom on Maureen O'Sullivan People with disabilities face additional challenges in their lives. Those challenges extend to their families and loved ones. We are contemplating a range of disabilities which include the physical, mental, intellectual, environmental, social and medical. Disability is an umbrella term for impairments, activity limitations and participation restrictions. I agree with Deputy Harris that sometimes when we use terms, they become labels and we then lose sight of the people behind them. We must stress that it is the person at whom we are looking rather than his or her disability. In our civilised, humane society we can rise to meet the challenges to which I refer in order that no one with a disability will be precluded from taking a full and active role in that society. I accept that we must strike a balance in the context of the reality that exists and adopt a common-sense approach.

Reference was made to those environmental barriers which hinder full and effective participation in society. In fairness, great efforts have been made to make transport and venues such as cinemas, theatres and heritage sites more accessible to those with disabilities. The Dáil has also been reasonably proactive in the context of providing access. Former Deputy Seán Connick had a great deal to do with making the House much more disability friendly.

The legislation in this area, namely, the Disability Act 2005, the Citizens Information Act 2007, the Education for Persons with Special Educational Needs Act 2004 and the Towards 2016 strategy try to bring together aspects of the national disability strategy. I accept that there are sectoral plans in this regard which were reviewed in December 2009 but there is not enough publicity or public awareness in respect of this entire area. It appears that the most recent meeting of the stakeholder monitoring group — about which I have heard a great deal — occurred on 18 October 2010. While there has been a change of Government, the issue has not changed. One is obliged to wonder, therefore, how long it takes to deal with matters of this nature. The Minister of State established a new implementation group to deal with the national disability strategy. I welcome the additions to the membership of that group, particularly because individuals sometimes get lost within the overall entity that is the service provider. We must remember that implementation can be extremely slow and that matters can be delayed by bureaucracy.

The Minister of State has included representation from local authorities on the implementation group to which I refer. There is a real need to speed up the process relating to people who acquire disabilities after they acquire local authority housing. I refer, for example, to those who suffer strokes, have accidents or, as is the case with some individuals in my constituency, are obliged to have limbs amputated. These people live in local authority housing, their bathroom facilities might be located on the second or third floor and their stairways may be too narrow to accommodate chair lifts. I know individuals in situations such as that which I have just outlined who have been left waiting for far too long for assistance. As already stated, the process must be speeded up and to a considerable degree.

I wish to place on record the phenomenal work being done by those at St. Michael’s House in providing services to people with intellectual disabilities. Despite the moratorium on recruitment, the budget cuts and the reduction in staff numbers — all of which have had a considerable impact — those at St. Michael’s House have continued to expand and develop the services provided there. The staff to whom I refer are coping with an increase in the number of people who use their day services and who receive residential services. Enormous credit is due to the staff at this facility in respect of the way in which they continue to deliver high-quality services. The most significant challenge which the staff must face up to relates to the fact that St. Michael’s has the largest waiting list for residential care in the country. The statistic they pro[58]vided with regard to the number of parents who have sons and daughters with intellectual disabilities who live at home is frightening. Some 240 of the parents in question are over 70 years of age. The staff at St. Michael’s recognise that more than half of these 240 individuals are encountering serious difficulties. Those who run St. Michael’s have been phenomenal with regard to the way in which they have managed the cuts to date and in the context of how they continue to respond to the increased demand. The area of mental health is referred to as the Cinderella of the health service. Within that, however, there is another Cinderella which is the area of intellectual disability.

There are three specific matters to which I wish to refer. The first of these relates to the thalidomide survivors. These are people who, through no fault of their own, were left with disabilities. Discussions have taken place with successive Governments in respect of this matter. It is time to stop talking and to give serious consideration to what these people are seeking and what they require in order that their needs will be met in an appropriate fashion.

The second matter relates to a forgotten category of people, namely, post-polio survivors, some of whom I have met. Great strides were made in this country in the context of the elimination of polio. However, the members of the group to which I refer are all much older individuals. There is limited funding available for the Post Polio Support Group Ireland, which is doing great work.

The third matter relates to St. Joseph’s School for the Visually Impaired, which is not located in my constituency but with which I am familiar. Some of the visually impaired children who attend this school have multiple disabilities. The school already has the necessary facilities and staff available to it. All that it requires is a minuscule amount of funding to develop a centre of excellence for young people with multiple disabilities.

We are aware that there is a link between disability and inequality and that the former disproportionately affects poorer people. The risk of inequality increases significantly when disability occurs in Third World countries.

An Leas-Cheann Comhairle: Information on Michael Kitt Zoom on Michael Kitt I thank the Deputy.

Deputy Maureen O’Sullivan: Information on Maureen O'Sullivan Zoom on Maureen O'Sullivan How much time is left?

An Leas-Cheann Comhairle: Information on Michael Kitt Zoom on Michael Kitt I am afraid I must call Deputy Pringle.

Deputy Maureen O’Sullivan: Information on Maureen O'Sullivan Zoom on Maureen O'Sullivan I apologise. I thought there was more time available.

Deputy Thomas Pringle: Information on Thomas Pringle Zoom on Thomas Pringle I welcome the opportunity to contribute to the debate on the national disability strategy. I have no doubt that the Minister of State is fully committed to her role and I am aware of both her passion for her job and her commitment to help people with disabilities. She knows what needs to be done but I am just afraid that hers might be a lone voice in the context of trying to implement the national disability strategy. My concerns in this regard were highlighted by the proposal in the budget that the allowance for young people with disabilities be cut. These young people are already excluded due to their disabilities and they cannot avail of labour activation measures operated by the Department of Social Protection. It will be very difficult for the Minister of State to challenge a mindset which would facilitate a reduction in a benefit aimed at the most vulnerable.

The 2011 survey on public attitudes to people with disabilities contains some interesting and also worrying findings. Some 44% of individuals believe that people with disabilities are treated fairly in society. However, 61% also believe that these people are not able to participate fully in society because of their disabilities. There certainly seems to be an element of confusion in [59]this regard. There is a high rate of people — 21% to 24% — who are opposed to children with disabilities being taught in mainstream classrooms. This may reflect concern about the cuts in the number of SNAs that were taking place when the survey was being compiled. However, I am of the view that it may also reflect a deeper problem in society. Between 2006 and 2011, the figure for those who answered that it is society which disables people by creating barriers for them fell from 62% to 57%. In my view, this is an alarming answer to the question posed. The main task we must undertake — which is almost as important as that which relates to the provision of services — is to change societal attitudes to disability. The attitudes which have emerged from the survey to which I refer are the result of the individualisation programme that was pursued during the Celtic tiger years and the neoliberal orthodoxy to the effect that the individual is the key in society and that there is no more community. We need to change that mindset and build a sense of solidarity in all our communities. If we do this we will achieve change and improve the lives of people with disabilities.

Reducing services under the austerity campaign sponsored by the Government and the troika only lessens the status of people with disabilities and underpins the attitudes that are clear in the survey results. Since 2008, disability services funding has been cut by 15%. I have already referred to the proposed cut in disability allowances for young people. Disability support groups have also been informed by the HSE that their funding will be cut by 5% this year. This is despite the fact that a cut of only 2% was announced in the budget.

Another issue to which I wish to refer is that which relates to domiciliary care allowance. In 2010 and 2011, over 80% of applications for this allowance in respect of children with autism spectrum disorder were refused. I am aware of children who cannot speak, who are completely withdrawn and who need constant care from their parents who have been refused the allowance. How does this reflect on our society and the Government?

I want to speak about the Disability Act, Part 2 of which provides for care plans to be provided for all people with disabilities, yet it has been implemented only for children under the age of five years. What message does this send to families and disabled people? Part 2 should be implemented fully without delay.

Part 5 sets a target of 3% for the employment of people with disabilities, which one would think was a very modest aspiration. However, in the review of the Act in 2010 submissions were made by public bodies which argued that the target was self-limiting. In this context, it is interesting that the number of people with disabilities employed in the public sector has declined from 2.9% to 2.7%. Does this reflect a lack of will to try to achieve the target? If it is removed, one can always say one is doing well because there is nothing to aspire to.

  3 o’clock

As I stated, the Minister of State is committed to her work. Much needs to change in society to improve the lives of people with disabilities who need to be protected from further cuts. The Disability Act should be fully implemented. However, providing protection from further cuts is not enough; the Government must develop services and make them available to all those who need them. Perhaps then we will have a society in which when the questions are asked in a survey, the number who do not want to see a disabled child in their child’s class will be zero and the number who believe society limits the ability of people with disabilities will also be zero. A huge amount of work must be done to achieve this. I hope the Minister of State will have the support of her ministerial colleagues, but somehow I doubt it in the current climate.

Deputy Mary Mitchell O’Connor: Information on Mary Mitchell O'Connor Zoom on Mary Mitchell O'Connor Having grown up with a brother with a visual and hearing impairment, the treatment of disabled people is an issue of personal interest to me. In the past decade Irish people acquired more cars, houses and money, but in many cases we failed to develop and nurture values that really mattered such as tolerance and empathy. Adults are the [60]worst culprits, but I am grateful that we are nurturing a younger generation, a majority of whom are more socially aware.

I argued this point recently when I accompanied a disabled but fully functioning adult to a hospital in Galway. During the appointment the doctor addressed all of the dialogue on the diagnosis and medication at me, in the process ignoring the patient, for whom I was embarrassed, but I was more enraged at the ignorance of a highly educated Irish professional. I sincerely ask that medical staff deal with people with disabilities with respect and dignity and that this form part of their medical training. In the interests of fairness, I commend the staff of the Mater Hospital, in particular Professor O’Keeffe, for their professionalism, empathy and medical care in that a patient with a disability has a voice and is listened to.

This is one of the many stories I could recount, but my point is simple. We could devote the entire budget to disability services, but if our attitudes and awareness of the capabilities, strength of character and courage of disabled people do not improve, the money would be wasted as it would be misdirected.

Disabled people face clear disadvantages, as outlined in the ESRI disability and inclusion in Ireland report. Persons with a chronic illness disability aged between 25 and 34 years are four times more likely than others to have no qualifications beyond primary level and only half as likely to reach third level. Those of us involved in the education sector must address this problem. According to the ESRI report, persons with a chronic illness disability are more than twice as likely to be at risk of poverty and to be poor. In 2008 those not at work owing to illness or a disability had a 21.6% risk of poverty compared to a figure of 13.8% nationally. The statistic which stands out most for me relates to housing. The number of disabled people with social housing needs increased in the past decade, rising from 423 in 2002 to 1,155 in 2008. I, therefore, ask that people with a disability be treated with respect and that their voices be heard by politicians, medical staff and society in general.

Deputy Peter Fitzpatrick: Information on Peter Fitzpatrick Zoom on Peter Fitzpatrick The World Health Organization has an interesting and revealing definition of the term “disability”. The word “disabilities” is an umbrella term covering impairments, activity limitations and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in life situations. Thus it is a complex phenomenon, reflecting an interaction between features of a person’s body and the society in which he or she lives. When an organisation of the magnitude of the World Health Organization describes disability as a complex phenomenon, it is worth taking note, as such a complex phenomenon warrants due care and detailed consideration. As a result, it is a subject to which the Government gives special consideration. I will explore some of the major issues involved.

The Health Service Executive national service plan for 2012 was drawn up against the backdrop of significant funding challenges and has been designed to reflect the changed priorities of the new Government and the significant programme of reform to be undertaken. The allocation for disability services will reduce in 2012 by 3.7% as a consequence of the impact of efficiency, procurement and targeted pay reduction savings. However, the level of service reduction will be lower than the level of budget reduction as a result of the efficiencies achieved. All service providers will be expected to achieve some efficiency savings, but the level will vary depending on the profile of the service provider, efficiency savings achieved to date and the scope to make further savings. HSE managers will have scope, within the national figure of 3.7%, to vary the level of reduction applying to individual service providers. The aim [61]of the HSE will be to tailor such reductions in a way which will minimise as much as possible the impact on service users and their families.

Provision has been made for the investment of €1 million in autism services. This is a particularly welcome development as I have witnessed at first hand some of the excellent results achieved. These funds will be used to address the issue of waiting times for specialist therapy services for children diagnosed with autism and for developing early intervention teams. A review of the HSE’s national service plan for 2012 will be undertaken, once the full impact of the reduction in the numbers of staff leaving by the end of February is known.

A review of the efficiency and effectiveness of disability services is being undertaken as part of the Government’s value for money reviews for 2009 to 2011. This in-depth review of disability services will assess how well services for people with disabilities meet their objectives and support the future planning and development of services. These terms of reference should ensure accurate findings. The scope of the review is to define and describe the objectives of disability services; consider the extent to which existing policies are consistent with the delivery of these objectives; assess whether current policies and investments arising from these policies are sustainable in the changing economic climate; and propose the policy changes, if any, needed to ensure overall objectives are achieved.

The review group is chaired by an independent chairperson, Mr. Laurence Crowley, and considering a draft of the final report. Amendments agreed to by the group will be incorporated in the report and the steering group will hold its final meeting in the near future to sign off on the report. On completion, it is the intention of the Minister of State to look at it in conjunction with the Minister for Health, Deputy Reilly, to ensure proposals on the future of disability services will be brought to the Government for its consideration and publication in due course.

Other aspects which warrant particular attention are the standards and inspections of residential services for people with disabilities. Unfortunately, this aspect was neglected by the previous incumbents of the House, leading to much negative press in recent times. Approximately 9,000 people with disabilities live in residential care settings provided by or on behalf of the State, the majority of whom have an intellectual disability. However, there is no independent inspection system in place for these residential services. The legislative framework for regulating the sector is provided by the Health Act 2007 which envisages a role for the Health Information and Quality Authority in this regard. However, the relevant sections of the Act that allow for mandatory registration and inspection of designated centres for people with disabilities have not been commenced to date.

In anticipation of the expansion of its role to include the regulation of this sector, HIQA has prepared and published standards which outline what is expected of a provider of services and what a person with a disability, his or her family, and the public can expect to receive from residential care services. The National Quality Standards: Residential Services for People with Disabilities clearly sets out what a quality, safe residential service for people with disabilities should be and supports the delivery of person-centred care in this sector. The current programme for Government includes a specific commitment to put those standards on a statutory footing and ensure the services are inspected by HIQA.

As announced by the Minister, Deputy Kathleen Lynch, on 16 June last, discussions began between the Department of Health and HIQA to progress the programme for Government commitment to regulate residential service provision for people with disabilities. Given the complex nature of service provision across this sector, careful consideration is being given to designing the most appropriate regulatory model. That work is ongoing.

[62]A target date of January 2013 has been provisionally set for the commencement of the new mandatory scheme of registration and inspection of residential services for people with disabilities.

The lack of regulation of this sector is acknowledged as a matter of concern. Unlike previous Governments, this Government is committed to addressing that issue and ensuring that vulnerable people with disabilities in residential services are safeguarded and protected, and that their quality of life is enhanced.

Regarding congregated settings, the HSE published a report in June 2011 entitled Time to Move on from Congregated Settings — A Strategy for Community Inclusion. A total of 3,600 people currently reside in congregated settings which are defined as settings in which ten or more people with disabilities live. The report proposes a new model of support in the community for those in congregated settings.

In addition, the report proposes a seven year phased closure of congregated settings with individuals actively supported to live full, inclusive lives at the heart of the family, community and society. A national implementation group, chaired by the HSE, was set up in October 2011 to drive and implement the transitioning of this worthy programme.

It is worth noting that a disability may occur at any stage during a person’s lifetime or may be present from birth. It is incumbent upon us to look after those in society who need support, and the measures I have outlined are a firm commitment by this Government to that end.

Deputy Charlie McConalogue: Information on Charlie McConalogue Zoom on Charlie McConalogue At the outset I wish the Minister of State, Deputy Lynch, as the Minister responsible for disability issues, well in her role in the remaining four years of this Government. She has a number of important roles in that brief. I have debated with her on a few occasions and met her in her role as the Minister with responsibility for mental health. The Minister’s brief is an important one for many people who depend on the Government to watch out for them and as an advocate at ministerial level to ensure we continue to progress issues.

The issue of disability is particularly important. The figures indicate that approximately 18.5% of people in our population live with a disability of one type or another, with varying degrees of disablement that other people would not encounter in their daily lives.

It is important that a whole Government approach is taken to deal with the issue of disability to ensure those people who have a disablement of one description or another are properly catered for. This is critical because no one Department can deal with that and ensure we address the inadequacies in our wider society in terms of disabled people. That is the reason the publishing of the national disability strategy in 2004, which covered a wide range of Departments, was so important. Much work emanated from that report. It served as a guidance document for the Government of the day, and subsequent Governments, on the way particular issues for disabled people could be addressed.

I am conscious that we are now almost a year into this Government’s five year term, if it lasts that long. A year is a short time but I am disappointed that we have not as yet seen a coherent and comprehensive approach taken across the different Departments on the way disability issues can be tackled and progress made. That was highlighted in the most recent budget last December by the Government’s approach when it came to funding allocations and addressing the issue of disability benefit payments.

I accept the point Deputy Harris made earlier when he said it is not simply about funding. That is true. It is about wider attitudes among the public and, importantly, attitudes at Government and at organisational level in terms of the way we approach the issue. However, the way the issue of disability benefit payments was handled reflected poorly on the Government in [63]terms of its overall disability strategy. It proposed at the time to cut the disability allowance for those under the age of 18 but for those from 18 to 21 years it was proposed to cut it from €188 to €100 and, for those from 22 to 24, from €188 to €144. The rates for those under the age of 25 cared for by a qualified adult were also facing reductions while the domiciliary care allowance, which was paid to the family of a disabled child under the age of 16, would be extended until their 18th birthday. We are aware of the concern that caused in society for people who are disabled and, subsequently, the Government decided to pause those cuts. As far as I am aware, that remains the position.

I am not saying it was the Minister with responsibility for this area who made the decision to make those cuts. A great deal of consultation was involved in deciding to do that. It was the brief of the Minister for Social Protection and her budget line which was affected but the handling of it and the approach taken was a poor reflection of the Government’s grasp in terms of ensuring it is working to a wider plan regarding disability services and protecting the payments and living standards of those who require those payments but also in terms of wider policy development issues.

I note the recent National Survey of Public Attitudes to Disability in Ireland indicated that 20% of respondents believe people with disabilities receive equal opportunities in terms of employment. That is a slightly increased figure but it is still only 20%, which is an indication of where society sees the opportunities available to people who are disabled. Three out of ten respondents believed the State provided adequate or enough benefits for people with a disability. That survey shows that the public is aware there are serious issues and inadequacies remaining in the services in terms of the opportunities we provide to people who are disabled.

Seán Gallagher, in the recent presidential election, highlighted the issue of disability and spoke about his own sight impairment issues as he grew up. A phrase he used and repeated on a few occasions was that when someone has a disability of one type or another the focus must be on what they can do and not on what they are unable to do. Our focus as a Parliament, and that of Government and wider society, is to ensure we provide services and structure society and communities in a way that people with disabilities will be able to carry out all those things that are within their capacity to do. It is often due to a lack of services that a person’s disability in one area prevents him or her from carrying out many of the things he or she can do. Addressing that must be our objective in what we set about doing. Our failure in this respect was obvious in some small but simple areas. Examples include the way developments were built, pavements were laid down to the simple matter of traffic light crossings. The way such infrastructure was built and developed and its accessibility were not given the consideration required. It was not a cost issue because in many ways with the proper approach and organisation the cost involved would have been the same. By putting the needs of people with various disabilities and thought for their provision at the centre of development and encompassing that in what is done, we could ensure that for the same cost we would have a society, a community and services which would mean everybody could use them. Much progress has been made on this in recent years. We now have a much more ordered and structured approach to ensuring the needs of those with various disabilities are catered for and considered when we go about our daily business.

More action is needed to further the development of the national disability strategy, to ensure that in the current environment it is put to the forefront again and that there is a coherent approach, strategy and implementation plan across Departments. Following the launch of the disability strategy initially in 2004 several initiatives were taken which progressed disability issues at governmental level, including the Education for Persons with Special Needs Act 2004, the Disability Act 2005 and the Citizens Information Act 2007 and sectoral plans were produced across various Departments, including in the Departments of Health and Children, [64]Enterprise, Trade and Employment, social welfare, transport and environment and communications. It is appropriate that we revisit each of those sectoral plans and that updated plans emanate from the new disability strategy implementation group established by the Minister in November, and that they be at the core of everything the Government, organisations and society does across the country.

I wish the Minister of State well with this important brief over the next number of years.

Deputy John Paul Phelan: Information on John Paul Phelan Zoom on John Paul Phelan I am glad to have the opportunity to contribute to this discussion on disability issues. I wish to raise a number of specific issues. Previous speakers referred to the mental capacity legislation which was promised for years by the previous Government and has been promised by this Government since it came to office. It is included on the A list of Bills to be introduced on the legislative programme. I add my voice to that of others who have urged the Government to introduce this legislation as soon as possible. The current legislation in the area predates the foundation of the State and the Act of Union. It is an area where the laws of the land are antiquated and need to be brought into the 21st century. I hope the Government can introduce that legislation as soon as possible.

I welcome the commitment in the programme for Government to examine the funding of disability issues with particular emphasis on providing a cost of needs payment to the disabled person rather than the position that has pertained up to now where block grants were paid to bodies which provide services. It is important and correct that individuals and families would be in a position to decide for themselves what services best suit their situations. I hope that can be implemented as soon as possible.

The area of autism is one that is close to my heart. My nephew is severely autistic and I am conscious of the roles of special needs assistants in classrooms in particular. I have found it puzzling that their role is very much confined to one of caring and addressing the care needs of the child in question. The role should be broader than that. The Minister of State might outline her position on the role of special needs assistants within our education system.

I wish to raise the issue of domiciliary care allowance and the position that has pertained in recent months where many recipients have had entitlement to it removed in an arbitrary fashion in some cases. I and I am sure many other Deputies have been presented with cases by people who previously had this allowance who have had it withdrawn. There does not seem to be any logic to some decisions that have been made. There have been some abuses of the domiciliary care allowance scheme in that some people who should not have been receiving it were receiving it. It is using a sledge hammer to crack a nut to require a significant number of people, who I believe qualify for the allowance and should be in receipt of it, to have to appeal a decision to refuse them an allowance they had up to now. Furthermore, the appeals process can take up to 12 months. Other ancillary benefits such as the carer’s allowance come in conjunction with the domiciliary care allowance. It is unacceptable that people in those positions are being forced to fight for their rights in an appeals process where there is a logjam and where it may take up to 12 months to complete when ultimately, in many cases, they are entitled to this payment. I have come across several such cases.

I know the difficulty that my brother and his wife have had over many years in trying to receive adequate care and educational provision for their son and the pressure that has been put on them and on other families I know in my area. It is unacceptable that in many cases people who are already stressed to the hilt in trying to get basic educational provision for their children have had their domiciliary care allowance removed. In terms of trying to remove the abuses that exist in the system, we should not end up making victims out of people who are already under pressure, suffering and who have already struggled to get basic rights to which [65]they are genuinely entitled. Some practices in regard to applications for the domiciliary care allowance that have been presented to me in my constituency are unacceptable. I hope there will be much more flexibility and understanding and also a much more evidence-based approach. I am familiar with three cases in Kilkenny in which domiciliary care allowance was withdrawn from families, despite the fact that the requirement for care had been certified by local GPs. That is not acceptable. If a decision is to be made, it must be made on evidence. However, I do not see in many of these cases that there is sufficient evidence to justify removing the allowance from families that have been in receipt of it. I hope an approach that is more flexible but also realistic and evidence-based can be adopted for the future. The appeals mechanisms for various benefits are already in a logjam and waiting times for appeals are far too long. To lob in extra claims for domiciliary care allowance, many of which will be granted, to what is already a delayed process is completely unacceptable.

Deputy Finian McGrath: Information on Finian McGrath Zoom on Finian McGrath I welcome the Minister of State and wish her well in her new portfolio and all the best for the future. The disability sector is an important one and all Members of the Oireachtas, not just the Minister of State, have a role to play in this regard.

I thank the Ceann Comhairle for giving me the opportunity to speak in this debate on the national disability strategy. When talking about disability strategies and other disability issues, we should always listen to and involve as much as possible all people with a disability, particularly when trying to achieve solutions. All discussion should be founded on the rights of, and respect for, those with a disability. Let us drop the condescending talk and claptrap around this issue. One either believes in an inclusive society or one does not. If the Minister cuts or destroys disability services, he cannot look a person in the eye and say he supports inclusion. That needs to be said, and I say it as the parent of a daughter with a disability. We do not do waffle in our house; it is about respect and equality.

It is not all bad news. There are plenty of examples of good practice in disability services, to which I will return. However, I feel strongly that the Government needs to raise its game on the national disability strategy. We have some great services, with great people working in them. As a parent, I have experienced them and some are top-class, at times against the odds. We should not be afraid to say that in this debate. There are people in disability services who are doing an excellent job, very professionally and to an international standard. What the Government and we as Members of the Oireachtas need to do is to support them in a stronger way.

With regard to inclusiveness, I experienced recently an example of good practice when I was invited to a debate in the Central Remedial Clinic in Clontarf for the radio show “Saturday with Charlie Bird”. I was expecting the usual panel of politicians and a few token representatives but, much to my surprise and delight when I arrived, all of the panel were people with disabilities; 90% of the audience were also people with disabilities or their family members. There were only two or three politicians in the room. When we are talking about policies and strategies, let us hear the people with disabilities themselves.

Even today we have heard that many parents are concerned about the cutting of domiciliary care allowance. That is not acceptable. We need to ensure people who are losing their payments are looked after. Also, those parents whose cases are being reviewed, particularly when the reviews last for longer than 12 months, lose their payments while waiting. This causes a lot of grief for families and leads to much unnecessary negativity. I urge the Minister of State to consider the issues raised and support parents and people with disabilities.

Something that has come up in the last couple of days which is related to this debate is autism. I do not know whether the Minister of State saw the article published recently by Dr. [66]Tony Humphreys on this subject. It was absolutely disgraceful and very damaging for the many families containing adults or children with autism. I will quote one section from the article:

After all, the deepest need of every child is to be unconditionally loved and the absence of it results in children shutting down emotionally themselves because to continue to spontaneously reach out for love would be far too painful.

Children’s wellbeing mostly depends on emotional security — a daily diet of nurture, love, affection, patience, warmth, tenderness, kindness and calm responses to their expressed welfare and emergency feelings. To say that these children have a genetic and/or neurobiological disorder called autism . . . only adds further to their misery and condemns them to a relationship history where their every thought and action is interpreted as arising from their autism.

Let us nail the myth. Autism is a recognised disability and I hope the Minister will take that position strongly. One person who commented on the article said:

Printing unscientific and evidence-lacking articles is a very dangerous thing. Free speech aside, we all know what happened when Andrew Wakefield wrote about his supposed linkage of autism and the MMR vaccine. Years later with measles outbreaks on the rise, people are still refusing to vaccinate their kids.

I raise this issue because of the great offence this article has caused to many parents of children with autism. There was one reaction which summed up people’s feelings very well. One mother, Mary, said:

As a mother of an autistic child I find this extremely offensive. I have 3 children one with autism 2 without. I by no means loved her any less than the other 2. I love all my children equally. The only people qualified enough to make such drastic remarks are those who live with autism in their homes everyday. If anything I give her twice the attention because she needs it. My other kids can occupy themselves but she can’t because she needs constant care and attention. He should be struck off ... To all those parents out there who have read this drivel: take no notice, all autistic parents know the real truth [and] this article sure as hell isn’t it.

I am representing the views of many parents of autistic children challenge Tony Humphreys. I often wonder whether people really understand what it is like to have a child with autism. Do they understand the childminding problems when they are young? Do they understand how hard it is for a parent to leave the child if he or she needs to get out of the house for an hour to go for a pint, or even if the telephone rings, because an external noise might trigger a violent reaction and the house might be damaged or destroyed when he or she returns? That is the reality for people who live with disabilities and should also be very much part of the debate.

With regard to the national disability strategy, Departments are required under the Disability Act 2005 to prepare sectoral plans showing that they will address key disability issues. After a period for consultation, the final sectoral plans must be brought to the Oireachtas. The six Departments referenced in the Act — I know the names have changed since — are the Departments of Communications, Marine and Natural Resources, Enterprise, Trade and Employment, Environment and Local Government, Health and Children, Social and Family Affairs and Transport.

These are the particular issues on which I would like to zone in. Earlier it was said there were many people in residential care settings that required inspection. I support my colleagues who have said we need an independent inspectorate to ensure the safety and rights of these [67]children and adults are protected. I have major concerns in this regard. We have had the debate on child abuse, but when it comes to the other part of that debate, on people with intellectual disabilities in institutional care, sometimes there is a great silence. Much of the truth about child abuse among those children has not been revealed. I ask the Minister to be vigilant on that issue because it is something that might be below the radar.

“Mainstreaming” is a current buzzword and a key tenet of the Government’s policy towards people with disabilities. The National Disability Authority considers that it is timely, in the context of the national disability strategy and the lack of progress in delivering on mainstreaming to date, that we examine this issue closely.

A number of my colleagues mentioned the mental capacity Bill which is being discussed at the Oireachtas Joint Committee on Justice and Equality. We will have hearings with groups such as Inclusion Ireland in the next couple of weeks. We have started to deal with the Bill and that work will continue. Members of both Government and Opposition parties will listen closely to the excellent submissions on the agenda.

The previous national disability strategy was endorsed in the social partnership agreement Towards 2016. The key elements of that strategy were as follows: the Disability Act 2005, the Citizens Information Act 2007, the Education for Persons with Special Educational Needs Act 2004 and a multi-annual investment programme of €900 million. The Towards 2016 strategic document pulled together the vision, mission and strategic objectives of the national disability strategy. We have the vision and we have the people in the disability sector. We also have many competent people with disabilities who should be brought into the organisations and the decision making process. Some of them are fantastic people who have made a massive contribution to this country in the past number of years.

There is also the issue of employment for people with disabilities. The 3% target for employment of people with disabilities is provided for in Part 5 of the Disability Act 2005. This is common sense. When I was a councillor in Dublin City Council in 1999, before this was a buzz word, the council was way above that 3% target in hiring staff. There were hundreds of staff with disabilities working in Dublin City Council, when it had between 6,000 and 7,000 staff. The council moved in this way of its own accord. By the time I was elected to the Dáil in 2002, the council was at 4.7% or 4.8%. The point is that there are people with ideas and people in the public sector who will bring these people into their organisations. People might have a physical disability but they have other fantastic and amazing skills.

In fairness, too, in the private sector there are small businesses and shops, including Senator Feargal Quinn, who have done a great deal to include people with disabilities in their staff. My daughter has worked in shops, garages and hairdressing salons. They get a great buzz from working a couple of hours per week. It is very inclusive and is part of inclusion politics.

I wish the Minister of State well with her job, as it is a very important job. My only advice to her is that she should listen to the parents and the people with disabilities. I realise she must also listen to the politicians and the Minister for Finance, which will be a pain over the next four or five years. However, when she is implementing her policies and examining strategies and so forth, she should put the parents and the people with disabilities at the top of her political agenda.

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