Joint Committee on Education and Social Protection debate -
Wednesday, 7 May 2014

Support for Young People with Disabilities: WALK and Carers Association

Chairman

I welcome our guests. I draw their attention to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the committee to cease giving evidence in regard to a particular matter and they continue to do so, they are entitled thereafter only to qualified privilege in respect of their evidence. They are also directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise nor make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. The opening statements witnesses make will be published on our website after the meeting. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the House or an official either by name or in such a way as to make him or her identifiable.

I ask everyone, including our guests, to make sure their mobile phones are turned off completely or are on airplane, safe or flight mode depending on the device. It is important they are not left on silent as it interferes with the broadcasting equipment.

The first item on the agenda is a presentation by the WALK organisation. The organisation addresses issues of access by young people with disabilities to education, training and activation. I welcome Mr. Joe Mason, Ms Gráinne Berrill and Mr. Des Henry. I invite Mr. Mason to make his presentation.

Mr. Joe Mason

I thank the committee for inviting us here to discuss the issues of access and progression for young people with disabilities in regard to further education, training and employment. I am the CEO of WALK. WALK is an innovative, forward-thinking organisation that is renowned for leading change within the community and voluntary sector and is highly recognised for its commitment to the provision of superior quality services. I am joined by Mr. Des Henry, our walkways co-ordinator, and Ms Gráinne Berrill, our Louth PEER co-ordinator.

To begin, I would like to read an article by Noelin Fox, who is a PhD candidate at the Centre for Disability Law and Policy in NUI Galway. Her article states:

This month, my daughter, like thousands of her peers across the country, is moving away from home for the first time. She is 18 years old and is taking up her place in college, embarking on her journey to independence. Over the coming months she will have to learn a whole array of new skills which she has no previous experience of. She will have to manage her (limited) budget, feed herself ... learn to live with [other] people ... manage the academic work ... deal with the bank, figure out bus time-tables, forge new friendships ... she may well make mistakes. She may submit work late ... spend too much money ... and get involved in unwise relationships ... Hopefully she will learn from ... mistakes and manage better the next time. Throughout this process she will have plenty of support [...]

How different all this would all be if she had a disability, especially if she had an intellectual disability. Would she be leaving home at all at this stage of her life? Probably not ... On a practical level she may not be allowed to open a bank account or sign a lease ... If she were deemed by a ... doctor to be unable to manage her money, [her disability allowance or any benefit would] ... be paid directly to us.

And where would she go anyway? There are so few mainstream third level education options open to people with intellectual [disabilities] [...]

Our systems and structures are designed to support my daughter’s progress from home to college and on to employment. The pathways are clear and open. ... For people with intellectual [disabilities] ... the opposite is the case. Quite apart from the worries of parents about the ability of their ... sons or daughters [with disabilities] to manage [and maintain an independent life] ... the lack of clear pathways is an enormous [task] ... For young adults with intellectual disabilities the most likely route after school is some form of training or day [activation programme] ... provided by a disability service provider and funded by the health services – not education. Although FÁS or SOLAS funds some training programmes for people with disabilities, the vast bulk of day services and training for people with intellectual [disabilities] ... is funded from the health budget. So, while our educational obligations to most young adults continues into their twenties, it seems to end at eighteen for those with intellectual [disabilities] ... This means that if a young adult with [an] intellectual disability does not want to attend a specialist ... post-school education or training programme, they will in general have to forge a path largely unassisted by our state systems – which in the main only provides recognised pathways to specialist/segregated services for them.

A number of years ago we asked the service users of WALK what they wanted out of life. Having a job was at the top of dream list for most. Therefore, WALK needed to support them to make employment a real and tangible goal. However, we were not set up to meet those needs at that time. Many of the people we were supporting had come from institutions, or had problems with challenging behaviour or very complex needs. Employment had never been an option for them up to this point. We set about finding ways to support them to achieve their employment goals and our research found that the generic and disability-focused employment supports that exist in Ireland were, first, unavailable to them and, second, did not meet needs of this group.

We successfully obtained the Ireland Wales Programme funding which enabled us to advance and pilot a PEER methodology of providing supported progression routes for people with disabilities, which has proven to be very successful. Through the work of the INTERREG-funded project, it became largely clear that the majority of young people with disabilities are far removed from the employment market at a very early stage, whether they are transitioning out of mainstream schools, special education or rehabilitative training programmes. It is also clear that we need to catch people at a young age and prevent their need for expensive interventions and intensive services later in life. It is like the old Irish saying: "Tús maith, leath na hoibre" – "A good start is half the work". If we believe that to be true, then no start means no work.

As noted in our submission document, it is difficult to obtain data on progression rates for young people with disabilities but what we do know is that despite the vast amount of legislation, policies and investment in place, people with disabilities have much lower rates of labour market participation than their non-disabled peers. We also see evidence on the ground of the limited options and opportunities for young people leaving our education system.

In 2012 the Department of Social Protection secured funding from the European Social Fund for the disability activation project, DACT. We successfully applied for funding under strand two of DACT, progression programmes for young people, to deliver the WALK PEER model to 16 to 24 year olds in County Louth. This funding enables us to roll out the PEER methodology of developing routes to employment for young people with a broader spectrum of disability. Designing our employment programmes has sharpened our focus on the gaps in provision of support for young people with disabilities. Almost 20% of people with disabilities finish school with primary education or less and one third fail to complete their secondary education. The majority of young people with intellectual disabilities progress to HSE-funded services.

This is what leads to low engagement with the labour market. People with disabilities are half as likely to be in employment as their non-disabled peers. Some 85% of people with an intellectual disability are unemployed. If we do not give people a start early in life, then they will not get a start at all. Rather than creating a climate of inclusiveness and expectation we have created one of segregation and low expectations. We must make a variety of options available to young people with disabilities which will ensure that they have genuinely equal employment routes that facilitate them in becoming fully involved as contributing members of our society. As evidenced by the case studies in our submission, individualised interventions, which have proven to be very successful, often are not complex or costly. The long-term benefits and savings resulting from the provision of appropriate supports are significant. There will, at the very least, be an identifiable return on the €1.3 billion per year that we are currently investing in special educational needs supports. We ask members to ensure that the need for suitable opportunities for these young people does not slip off the agenda. As requested by the Minister of State at the Department of Health, Deputy Kathleen Lynch, the National Disability Authority is developing a comprehensive employment strategy for people with disabilities. This is not solely an issue for the Department of Health, however, because these young people are not sick. They require extra individualised supports to progress successfully from education to adulthood, with a view to having a full, meaningful and contributing life.

The DACT project concludes in early 2015. Section 5 of the Government’s Action Plan for Jobs 2014, on Pathways to Work and the youth guarantee, commits to having a comprehensive strategy on employment for people with disabilities signed off by the end of 2014. There is, therefore, a challenge for the Departments of Social Protection and Education and Skills to ensure that activation delivers tangible options for our young citizens from 2015 onwards.

Chairman

I welcome Mr. John Dunne and Ms Clare Duffy from the Carers Association and invite Mr. Dunne to make his presentation.

Mr. John Dunne

We appreciate the opportunity to address the committee. I will take a hop, skip and jump through the committee's agenda by raising issues of concern to us and which we consider are part of the committee's brief. I will begin by dealing with the issue of income supports for family carers. I acknowledge the significant achievements made in this regard in recent years. I am sure people tend to come before this committee to give out about things but two particularly significant developments from our point of view are the reduction in the average processing time for carer's allowance to eight weeks - we would like it to be shorter but it is none the less a massive improvement - and the revised application, review and feedback process for the domiciliary care allowance.

I draw the committee's attention to a conclusion in 2012 by the Joint Committee on Jobs, Social Protection and Education that carers are in a unique category. In the context of the proposed single payment to people of working age, the only group of welfare recipients to be excluded from that payment were carers. It is worth reflecting on this when designing future income support strategies. The concept of a core social welfare payment has become significant in recent years in the context of the programme for Government, but there is studied ambiguity regarding whether the half-rate carer's allowance is designated a core social welfare payment. We would like clarification that it is such a payment.

From a carer's point of view, one of the most unfortunate things that happened in recent years was budget 2015 and the cut to the respite care grant. We would like that to be restored. Currently the grant is paid if the recipient is caring on a certain date in June. A carer would receive nothing if he or she cared for the entire year and ceased caring because the care recipient died or went into long-term care on the day before the grant was due. This seems an arbitrary way of providing financial support. Even if the payment were made twice a year based on a half year's accrual, it might be an improvement. During the question and answer session, I will address the question of a contributory State pension for long-term family carers, if members wish.

As I noted earlier, we regard the review of the domiciliary care allowance as a positive initiative. Many of the improvements made to the application process for that allowance could be extended to carer's allowance and carer's benefit. The review group has also made proposals on the transition period when an individual reaches the end of his or her caring duties. Due to circumstances outside the carer's control, such as due to the death of the person being cared for, he or she is no longer a carer. A carer will get six weeks if the care recipient dies but if he or she is taken into hospital, the carer will in principle lose the carer's benefit on the following day. That is a drastic adjustment and some sort of transition arrangement would be a good idea.

We have no argument with the control and fraud initiative but we draw to the committee's attention the Comptroller and Auditor General's conclusion that error was a bigger cause than fraud when it came to issues of control in income supports. The biggest issue is that we still do not have automatic notification from the Department of Social Protection to the Revenue Commissioners when somebody is awarded the carer's allowance. The carer is made responsible for the fact that two agents of the State cannot communicate with each other. That is relatively easy to fix and it deserves to be addressed.

I accept this is controversial but we support the proposal by the Minister for Social Protection to increase the upper age of entitlement to domiciliary care allowance to 18 years. The proposal has implications for eligibility to disability allowance and benefit.

I want to suggest a useful innovation for the longer term. Currently medical assessors are employed in the Departments of Social Protection and Education and Skills, and in the health system, all of whom plead they do not have the resources to do the job as they would wish. We cannot understand why consideration is not given to merging the three systems to provide a single medical assessment unit. Three times as many resources would be available to carry out a single review of everybody instead of three reviews of some individuals and no review of others.

I draw the committee's attention to a crossover between health and social protection. We believe there is a widespread policy whereby the HSE withdraws supports from families, in some cases all supports and in others anything over five hours per week, where they are receiving the carer's allowance. We believe that is frustrating the statutory basis for the carer's allowance as an income support, aside from being highly undesirable in terms of health and social policy.

In regard to special education and family carers, cutbacks to supports for children with disabilities who attend mainstream schools are forcing parents to reappraise their circumstances. Policy in this area aims to encourage people to live as normal an existence as possible. If by taking the constructive and positive route one is effectively excluded from supports and services, why would one take that route? While €4 million in additional resources has been allocated this year to help people who are coming out of school to transition into an alternative environment in the HSE, parents often spend the summer, or indeed the following year, worrying about whether a place will be made available. We suggest, as a simple solution that would not cost too much, guaranteeing a student the right to repeat in the education system if he or she does not get a place. That is far from ideal but at least it offers a measure of security or safety blanket. It is possibly an inexpensive but worthwhile innovation.

We suggest there needs to be more focus in the education system on young family carers.

The last area is labour market training and activation. We welcome the moves to reinvent or reshape community employment into a traineeship approach and to focus on health care as one part of the pilot phase. We think that is very worthwhile. We would like to lend our voice to the number of calls that long-term unemployment start at six months rather than 12 months. I do not know if there are EU problems with that but certainly from a human point of view, 12 months is a long time to have to wait to access some of these things. By the time it comes around, it may be too late for some.

We support the vision and aspirations behind Intreo, SOLAS and QQI, but we have encountered a number of practical difficulties in working through some of the schemes they offer. The quality of referrals through Intreo has been extremely poor. What is more, the new rules are obstructing some older ways of recruiting which had been effective. I do not think that will be news to the Department but we had to put it on the record and say we hope there will be more on it. I noticed Deputy Ó Caoláin asked a question about the review of the last MOMENTUM programme and he was told there was a report in hand with SOLAS on the recruitment phase but it has not yet been published, so that needs to be kept under review.

There have been significant failures of co-ordination between the new agencies, in particular in the inaugural MOMENTUM programme. We support the move to have the people delivering these services for a fee to be paid by results, but if the State system is not delivering on its part of the equation, what one is doing is shifting the risk to the private or the voluntary sector, although one is tipping the dice against the voluntary or private sector and when it does not work, one says that is tough and that it did not do its job. This was a case where the State was clearly falling down on its end of the deal.

We are concerned about inconsistencies in entitlements for participants. This is very demotivating if one is trying to get somebody to participate in a programme and he or she knows that if they do a different programme, he or she will get an extra benefit. There is no reason for different standards.

We would like to flag a constant problem. There is an inherent conflict of interest where State agencies provide some services directly while, at the same time, commission the same services from third parties. It is generally not a good model from which to operate.

Deputy Jonathan O'Brien

I thank both groups for coming in and making their presentations and apologise for delaying them at the start of the meeting.

WALK's written submission mentioned the youth guarantee, but that was not touched on. The youth guarantee is an area where we can address some of the issues raised in its submission because if one looks at the creation of it at a European level, it was designed to include all young people. If one looks at it from its birth to where it is now in terms our national implementation plan, there have been significant changes to what was first conceived at European level and what will be implemented at a national level. At European level, it does not make any distinction between people with disabilities and people without disabilities. At EU level, it specifically states that it is for all people and it does not state ages, capabilities or abilities, and yet the national implementation plan states that it will be targeted, in the main, at people between 18 and 24 years of age and people in receipt of jobseeker's payments. That is a mistake which needs to be addressed. Do the witnesses have any views on that and on how the youth guarantee has the potential to help people with disabilities to access further education or even get into situations where they are able to access the labour market? Do they have any particular idea on that and on how the Government should implement it as opposed to what it proposes in the national implementation plan?

I have a couple of points to make in regard to carers. I agree completely with making the half-rate carer's allowance a core payment. I presume one of the reasons the Carers Association is looking to make it a core payment is because of the Government commitment to protect core social welfare payments. While that is in the programme for Government - I am not playing politics or anything - just stating that the half-rate carer's allowance will be a core payment will not protect it from potential cuts because we have seen how changes in calculation rates and criteria have already affected core social welfare payments. Everyone in this room would support reversing the decision in regard to the respite care grant, regardless of his or her political background. We will all put pressure on the Government to try to reverse that.

At the end of his contribution, Mr. Dunne spoke about the inherent conflict of interest in State agencies providing services. Will he elaborate on that and give us some examples of how that affects people? I refer to the State contributory pension. My colleague, Deputy Ó Snodaigh, our spokesperson on social protection, recently raised this in the Dáil with the Minister for Social Protection, Deputy Burton. We spoke about the possibility of introducing a home-makers credit scheme. Does Mr. Dunne have any thoughts on that particular proposal?

Senator Mary Moran

I welcome the representatives of WALK and the Carers Association. I found both of their presentations very interesting, true and up to date. I have a personal connection with WALK peer programme in that I shadowed one of the girls, Emer, who is here today. It was an excellent day and an excellent eye opener to the work that is done to give young people with disabilities an equal opportunity. WALK certainly does what it says on the tin and provides that opportunity.

It was very enlightening to see young people with disabilities, some of whom I had taught in a mainstream school, come to the fore, achieve their full potential and be able to do things which perhaps people would not have expected them to do. I say that as somebody who saw that happen and as a parent. As was said, all these young people want is to have a job and to be able to say they are the same as everybody else. It is fantastic that this is going on. The example in Louth is fantastic and I would love to see it rolled out all over the country. I hope that by raising it at this committee, it will enlighten other people and that we can work together to try to roll it out nationwide.

I concur with Deputy O'Brien's comments on the youth guarantee. It is one thing that has stuck out. When one talks about the opportunities there, we need to look at the youth guarantee because there is a huge gap in terms of the provisions for people with disabilities in the youth guarantee currently. There is a huge need to include and provide training and education opportunities for people with a disability. What do the witnesses see as the gaps and the challenges? How can we, as politicians, help WALK's work to improve it and to bring it to fruition?

Funding was mentioned. Rather than coming from the Department of Health or the Department of Education and Skills, it needs to be cross-departmental. Everybody should be working together. It is not just in this area but in every area of disability. As somebody said, it comes under the remit of the Department of Health but these people are not sick; they need an education. It is like sport and disability in that everything comes under this banner and yet it affects every Department. That is something on which we need to work.

On carers, I agree that the cut to the respite care grant was a very tough blow and is something that all parties would like to see reversed.

On school leavers, it is a terrible dilemma for people when they leave in June or July and do not know where they will be in August. It is a good idea to let people know in advance but I understood that a directive was issued to the effect that all school leavers must be placed or must know before they leave exactly where they will be in September. I was under the impression that this was the case and I ask the witnesses to clarify that.

Senator Marie-Louise O'Donnell

I welcome the witnesses. What they do and who they are is at the core of what we are supposed to be as a society, in protecting our young, less well-off and less able. I wish to ask a question about the WALK PEER programme, which is a brilliant idea on which I congratulate the witnesses. The witnesses said that almost 20% of those with intellectual disabilities finish school with primary education or less. That does not seem to be a very bad figure, or is it? I would have thought that it might be even higher.

The Carers Association annual report refers to the fact that the State is saving €4.7 billion through carers, who provide 900,000 hours of care. It also refers to 2,000 11 year old carers and 4,000 15 to 18 year old carers. Are they paid? How are they compensated? What happens to their educational structure? Are there any supports provided to them in this regard?

I congratulate Mr. Dunne on an extremely brilliant executive summary. I did a piece on carers on radio yesterday and I had read the annual report in advance of that. I lived with two families for two days in different caring situations. It really opened my eyes to the reality. The HSE really needs to walk the walk instead of talking the talk in that context. Everything Mr. Dunne said is so relevant. The witnesses have an awful lot to offer this committee and there is much we can do to help them in terms of the youth guarantee programme, educational gaps, grants and so forth. I ask the witnesses to address the question of the 11 to 18 year old carers and the aforementioned 20% figure.

Senator Marie Moloney

I also welcome the two groups to our meeting. I have not dealt with WALK before but I have read its presentation which I found to be very impressive. It would be great if its programmes could be rolled out nationwide in the future. I have worked with Mr. Dunne from the Carers Association on various issues. On the cut to the respite care grant, Mr. Dunne knows that I moved very quickly to try to counteract it by asking the Minister to ensure carers got a break through the use of some employment schemes. I know Mr. Dunne has worked very closely with the Department on that. I ask him to fill the committee in on the progress that was made in that regard.

I have spoken to the Minister for Social Protection about the half-rate carer's allowance and she is adamant that it will remain in place. Mr. Dunne also spoke about pension entitlements for carers, as did Deputy O'Brien. Every person on carer's allowance gets a carer's credit which is valid for old age pension purposes. It is as good as a paid contribution once a person has 520 contributions paid from work earlier in life and so forth. I know of a number of people whose carer's benefit has expired and their income is over the threshold for carer's allowance. I have applied for a homemaker's credit for those people and they have been awarded it. Credits are available to people and it is important they are made aware of that.

A suggestion was made that the respite care grant could be split in two, which seems like a good idea in the context of, for example, a caree who dies in May. However, someone who only started caring at the end of May would get the payment immediately. It is as broad as it is long in that sense but perhaps breaking it up into two payments would cancel out the anomaly that exists. Reference was made to situations where a carer goes into hospital and loses his or her payment, but that is not quite the case. The carer can hold on to the carer's allowance or benefit for 13 weeks. The payment does not automatically cease as soon as the carer goes into hospital.

The witnesses spoke about the importance of Departments speaking to one another but I know that is happening. In the case of third level grants, for example, there is no longer any need for applicants to provide information to the Department of Education and Skills from the Department of Social Protection or from the Revenue Commissioners because their records are all interlinked through PPS numbers. Reference was also made to a single medical assessment unit, and I wish that was the case. If such a system operated in the context of medical card applications, it would solve many of the problems currently being experienced by those with discretionary cards. Unfortunately, however, as we have been advised, medical cards are not awarded on the basis of medical conditions but on the basis of means.

On several occasions I have called for a single means testing centre for applicants for all State payments, whether that be housing payments, third level grants, medical cards, social welfare payments and so forth. If a person has been means-tested once, that information should be shared between Departments. In that way, individuals would not have to be means-tested on multiple occasions. When a person applies for a social welfare allowance, for example, he or she is means-tested. While that person is awaiting approval, he or she can apply for a supplementary welfare payment but is means-tested again. That is a complete waste of resources and involves a doubling or trebling of the work. A single means test centre should be considered.

I undertook the shadowing programme and had a gentleman in here who shadowed me for the day. I can certainly say that he could teach me a thing or two, especially about politics. He knew his politics inside out.

I ask the witnesses to comment on some of the issues I have raised. I could raise several more but I wish to be fair to my colleagues.

Senator Marie-Louise O'Donnell

I thank the Chair for allowing me back in. There is one question that I meant to ask earlier which is somewhat sensitive. Those who are born intellectually disabled live in a different world and look at the world in a different way. When does it become clear that an individual is not capable of getting a job? Is that a family decision? I know that many are capable but when does it become apparent that some are not able to operate in the world in which we operate?

Deputy Derek Keating

I do not want to hold up the meeting but I wish to thank the witnesses from both organisations for coming here today. I have had some interaction with the Carers Association in my constituency. Some of the issues that I had intended to raise have been raised by my colleagues, but I wish I thank the witnesses for their presentations.

Chairman

On behalf of the committee, I welcome Deputy Keating back after his recent illness.

Deputy Derek Keating

Thank you. That is very kind.

Mr. Joe Mason

I will ask Mr. Henry to deal with the questions on the youth guarantee scheme and I will deal with the questions on age and levels of disability.

Mr. Des Henry

Deputy O'Brien asked a good question, which goes to the heart of our presentation and submission which is really about implementation. We freely admit that there are any number of policies, any amount of legislation and a massive amount of funding in this area, but our questions centre on value for money.

Members will see in our submission a diagram which shows the amount of money being spent per year in respect of a person in mainstream education and how when a person with a disability reaches 15 or 16 years of age he or she moves in another direction. We would question who is making the decisions in this regard.

Under the youth guarantee, which is an initiative from Europe, four countries will, because more than 30% of their populations over 25 years of age are unemployed receive funding. Ireland is included in this group and will receive €6 million. While the youth guarantee relates to all EU citizens, in terms of implementation in Ireland it now appears only people in receipt of jobseeker's allowance will benefit. I cannot explain why or where that change occurred. Europe has provided the money and requested that it be told only how it is proposed to spend it but the response from Ireland is to include particular people and exclude others who also need help. I do not understand how or why that decision was made. I cannot explain it.

Deputy Jonathan O'Brien

How would people with disabilities benefit if that decision had not been made?

Mr. Des Henry

Hugely.

Deputy Jonathan O'Brien

Would the result be increased progression rates?

Mr. Des Henry

Absolutely.

Deputy Jonathan O'Brien

Perhaps Mr. Henry would elaborate.

Mr. Des Henry

When we first heard about the youth guarantee, it appeared great things were going to happen. Unfortunately, when the implementation plan around it was published we noted people with disabilities were not included. I could not understand it.

What we expected was funding that would allow us to do something different. We expected some innovation or calls for tenders for something different that might help these groups of young people. All of the people involved are young people. The group we represent only want to be treated the same as everybody else. That is all they want. If they are treated the same as everybody else, in terms of being given a little extra support, they will progress. They can and do want to work. They are well able to work, pay their taxes and contribute. However, for some reason our system has chosen to deny them that opportunity. This is evident from what has been happening in terms of implementation of the youth guarantee and, unfortunately, the Pathways scheme, which is also disregarding people on disability allowance. These two opportunities have been provided to help people who want to work but a decision has been made to help only the people who it is believed can work, leaving others aside. We would have expected something innovative to happen.

On Youthreach, while 50% of the people who go through it do not graduate from it, it is proposed to put more money into it in any event. It does not make sense. We do not know who made this decision but we believe it is a mistake.

Senator Marie-Louise O'Donnell

Did WALK make a submission under the youth guarantee?

Mr. Des Henry

Yes.

Senator Marie-Louise O'Donnell

Has the organisation challenged the decision?

Mr. Des Henry

Yes. I challenged it at a meeting in Tallaght at which the Minister, Deputy Rabbitte, made a presentation. The response I got was that the plan would be reviewed in the future and if it is working consideration can then be given to including other people.

Deputy Jonathan O'Brien

The official position is that consideration is now to be given to how other groups can be included but no indication of how the decision will be made has been given.

Mr. Des Henry

Or by whom it will be made.

Deputy Jonathan O'Brien

Yes. There is an aspiration to do it.

Mr. Des Henry

Everybody should be included. That was the original plan. However, when it came to implementation the decision was made to exclude some people.

Deputy Jonathan O'Brien

Children of 16 or 17 years of age, whether or not they have a disability, have hopes and aspirations. The hopes and aspirations of some people are, because of policy decisions, being discriminated against, which is scandalous. That this is being done, despite the fact that money has been made available to fulfil those hopes and aspirations, is hard to stomach. This is a decision which all political parties in the Oireachtas must challenge.

Chairman

Perhaps members would allow the witnesses to continue with their replies.

Mr. Des Henry

It is a case of short-term thinking. The cost to the Exchequer of excluding people because they are in receipt of a disability allowance, thus allowing them to remain in that position for the remainder of their lives, is enormous. If people with disabilities were, for as long as possible, treated the same as their peers the difference in terms of benefits and costs would be huge.

Chairman

Would Mr. Mason like to comment?

Mr. Joe Mason

With regard to whether the level of disability with which a person presents should preclude them from employment, in our view there is no level of disability which should preclude them. We believe that people with severe and profound disabilities have the same aspirations as everybody else. However, they might express them in a different way. For example, as well as being the chief executive of an organisation for people with disabilities, I am the sibling of a young man of 41 years of age who has a severe and profound intellectual disability. He is my foster brother. He was fostered by my parents in 1980, at which time he was ten years old and had previously resided at St. Ita's psychiatric hospital in Portrane. He got a job through our programme 18 months ago, which means he was almost 40 years old when he got his first experience of employment. Thankfully, my parents, although elderly, are still alive. My brother tends to go to bed on a Friday and not want to get up until Monday because he is tired after his week of work and entertainment. He works on a Tuesday morning and a Friday afternoon in Domino's, the pizza establishment. They are the only two days of the week he is guaranteed to get out of bed. On these days he gets up, puts on his uniform and heads off to work. Work is an extremely important part of his life. He is somebody who we would suggest, and the reports would indicate, is in the severe profound range of intellectual disability. WALK would never make a distinction between people's different levels of ability.

Senator Marie-Louise O'Donnell

Mr. Mason makes a very good point. From where does the 20% figure come?

Mr. Joe Mason

It comes from the Department of Education and Skills, and includes people with disabilities. The figure for people with disabilities is 20%. The figure for people with intellectual disability is far lower.

Senator Marie-Louise O'Donnell

My question was whether people with physical or intellectual disabilities, or both, were excluded.

Ms Gráinne Berrill

Before we came here today I canvassed various special schools with which we interact on this issue. The primary point made is that the primary curriculum is being delivered in the special schools, whether or not a person is capable of more. On an individual school basis, people can achieve FETAC levels 1, 2 and 3. Some people can achieve the junior certificate. However, the point was made that there are people with intellectual disability who can achieve more than primary level education, which is true. There are other people who cannot achieve more than primary level education but can be prepared for life. Currently, the special education system is not necessarily preparing a person for life. This means a young person of 16 years of age, who is effectively an adult, continues to do primary level mathematics which may be beyond him or her, which leads to their dropping out of school and so on. People with disabilities who leave school early are not entitled to adult services. There are very few transition options for young people who do not want to go into a day service setting, which is the main progression route for young people with disabilities, particularly those with intellectual disability. While, as there should be, there are a suite of options available to every young person in this country, there is no suite of options available to the people about which we speaking today. Whether or not a person takes up these options is another story. Having a variety of options is important.

Chairman

Would Mr. Dunne like to comment?

Mr. John Dunne

The Minister has fought for and succeeded to date in protecting the half rate allowance. However, there is much uncertainty and anxiety in regard to it in the run up to each budget. I accept there could be technical tweaks to it.

On the State contributory pension and home maker credit scheme, I will ask my colleague, Ms Clare Duffy, to comment on that, following which I will come back in again.

Ms Clare Duffy

I am aware having read some of the Oireachtas reports that the Senator Moloney knows a great deal about the homemakers scheme.

The homemaker's scheme is a safety net for people who have had to take time out of the workforce to care for someone. The system still uses the disregards, although the national pensions framework in 2010 recommended the introduction of credits. One can have up to 20 years during which one has been out of the work force disregarded. Our issue with it is that it excludes lifetime carers, that is, people who have spent more than those 20 years caring and, therefore, do not have the requisite 520 paid contributions they need, or people who, because of their caring responsibilities, cannot return to work before the age of 56 or whatever. It is very specific to those lifetime carers who have dedicated a huge portion of their lives to caring. The national carers' strategy is subtitled "Recognised, Supported, Empowered". We need that recognition of the major contributions they have made in their lifetimes.

Senator Marie Moloney

Does Ms Duffy have any figures on that issue?

Ms Clare Duffy

I can get figures for the Senator.

Mr. John Dunne

Whatever a lifetime carer is at the end of it, he or she is not rich. Therefore there is not much difference between benefit and assistance in terms of a pension. Looking down the road at demographics and all the other challenges, I expect to see the difference between pension benefit and pension assistance begin to open up. In that situation, wherein somebody has spent his or her life saving the State money, apart from anything else, it is difficult to see why the State would not make the gesture to give him or her the higher amount, partly as an acknowledgement and a validation.

Senator Marie Moloney

It might make a significant difference if the spouse were working or received a lump sum from a job at which he or she had worked.

Mr. John Dunne

That is true. I am trying to put the nicest spin on it.

Senator Marie Moloney

We must also consider the potential difficulties for those people.

Mr. John Dunne

On the conflict of interest issue regarding education, it is early days to see them working through. The VECs offer training at costs we could not possibly match because they have built-in subsidies. There are more egregious examples in the HSE, for example, when it sets a standard in a tender, such as the minimum educational qualification of staff working in a certain area of care. A definite standard is defined and an organisation such as ours spends tens of thousands of euro training our staff up to that level. Then the HSE discovers it cannot get its own staff up to that level and the standard suddenly disappears, leaving the standard lower than it was three years previously.

Another example is where the HSE tenders out services. Its staff deliver five hours of services in the middle of the day while any short periods or anti-social hours in the evenings and at weekends are given to the external bodies. Apart from being a bit unfair to us, it is very unfair to those in receipt of the care because all the medical evidence suggests that continuity of care is better for the person. In giving those examples I do not suggest any badness. The issues are inherent to the system. There should be some sort of control and balance. Where somebody is delivering and purchasing services there is unlikely to be a totally level playing field. The person would be superhuman if he or she achieved that.

I thank the members for their comments on the need to restore the respite care grant. I do not know the answer to Senator Mary Moran's question on school leavers. We have not heard that. We listen to carers. I do not mean that in a smart way. If there is a directive everybody must know about, all I can say for certain is that there are carers who do not know. We will check up on it because if they are entitled to it-----

Senator Marie Moloney

I have been pushing to ensure parents are not left in that situation, even in terms of their employment. I will check up on it. We will keep in touch on that.

Mr. John Dunne

Senator O'Donnell asked about the 900,000 hours and €4.7 billion and asked if people were paid. They are not and we do not suggest everybody should be paid. Looking at it internationally, Ireland is particularly generous in its income supports to family carers. The other side of the coin is that we have relatively few other supports to family carers. The third factor is that it is extremely difficult to qualify for carer's allowance. One must be able to show that one is working full-time, more than 40 hours. While this is not the current guideline, because it is applied in practice, one must work full-time to get one's allowance. The difference between carer's allowance and jobseeker's benefit is not enough to justify 40 hours a week of hard work.

Young carers can be broken into three groups. There are young carers for whom their situation is good, normal family living. Every family has challenges and one expects and hopes that everybody would gather around. There are young people who are under an unusual degree of stress in terms of what they are being called on to do in a family situation but it is manageable. In a minority of cases the situation is tantamount to child abuse and we must examine that. We need to view those three categories differently. The normal family life situation is fine. In the other situations we try to provide support, part of which is to ensure the systems in which they operate recognise their particular circumstances and challenges.

The young people who have inappropriate levels of responsibility must be dealt with in a different way. The system is under enormous pressure and if anybody picks up the pieces, the system tends to sit back, take a sigh of relief and say it is fine. In some situations, even if the young carer and the person who is being cared for are both professing satisfaction with the situation, it is possible to examine it objectively and say it is not morally acceptable, probably is not sustainable, and needs intervention before it turns into a crisis.

I completely acknowledge Senator Moloney's work on seeking respite breaks as a way of compensating for the cut in the respite care grant. Although we are still muddling away at that and there has been no major breakthrough, we are engaged constructively in a process and we will see where it goes. The Department floated the idea of the two halves around the time of the respite care grant cut, when trust among the organisations was so low that there was profound suspicion about any idea of change in the system. We are considering it and are ready to say it possibly has merits.

I thank the Senator for clarifying the issue of the 13 weeks in hospital. If a person goes into long-term care, the carer's allowance stops immediately. If a person goes into hospital for more than 13 weeks and has not been able to move to a step-down bed or some other facility, their carer faces losing the carer's allowance and the travel card. I know carers who are travelling four hours per day to visit people in hospital. From the carer's point of view, the person may yet come home. These are very hard, exceptional cases. I am not saying the Department should give everybody everything but that it should examine more carefully the transition from the carer phase in terms of income support.

While it is great if communication is starting to happen between the Revenue Commissioners and the Department of Social Protection, technically the carer is liable and that is a worry. Having fought, in some cases for two years, to get a carer's allowance, a person receives a piece of paper which on the front says, "Congratulations, you have a carer's allowance," and in small print on the back says, "P.S. You are obliged to tell Revenue you are now in receipt of this allowance". Nobody ever follows it. While we promote it through the organisation, when somebody has fought for two years for the allowance, it is not top of his or her list to inform the Revenue Commissioners. However in three years time, if Revenue has not collected money, technically that carer will be hit with a big bill. This is avoidable and unreasonable and carers have enough to worry about without that.

Senator Marie Moloney

That is a fair point.

Mr. John Dunne

I completely agree with Senator Moloney on single means testing. The difficulty is that there are different means test criteria for so many allowances. One might have to consider standardising the means test in some way.

Senator Marie Moloney

One would know what income, savings and so on a person has and would not have to run around getting all this information.

Mr. John Dunne

One would have all that certified. That is true. The idea of a medical assessment unit could have been a model in the context of the Government's focus on centralising services and achieving economies. There was a recent High Court review of a decision to refuse a domiciliary care allowance under the old regime. The Department is still reviewing it. The core issue on which the judge criticised the Department was that a medical report from the GP had been disregarded without anybody having met the person about whom the report had been written. The officials read the report saying what the person needed, decided they did not believe it and put it away.

If one was to ask the chief medical officer in the Department of Social Protection how that happens, he would say, quite simply, that he just does not have the staff to do it. That is a perfectly legitimate argument. I cannot come in here and ask that another 50 medical examiners be appointed to the Department of Social Protection, but maybe there is another way of looking at it.

Chairman

I will take a few more questions.

Senator Hildegarde Naughton

I apologise for my late arrival. I was in the Seanad. I thank the witnesses for appearing before the committee. Coincidentally this week, my Labour Party colleagues are debating a motion on personal assistance service. Can the witnesses recommend an overarching definition of the function and role of personal assistants? Are there any suggestions as to how we could improve the disability access route to education to have a more suitable model?

Chairman

I have a few questions myself. A point was made about the domiciliary care allowance that the age limit be raised from 16 to 18 years. As that has not happened, it is still just a proposal. I recall it did not happen because of political pressure. Have the witnesses consulted their members on the issue? Is it promoted to make it possible for the Minister to introduce that reform because that is a factor when it comes to budgets? There was much pressure on Government Deputies and Senators in respect of the cut to the respite care grant. The Minister had an enormous challenge to take €1.5 billion out of the social protection budget and still keep the social protection system intact. Compared with other countries that have experienced the same difficulties as Ireland, the Minister has done quite a good job in that area.

Senator Marie Moloney

I wish to raise one issue. I have a number of carers who have a child with a disability. One in particular has a child with leukaemia but the child is attending school. The carer decided to go back to college to retrain while the child was at school, but because her hours exceed 15, she loses the carer's allowance. As the child is in school and does not need to be cared for, she has time to retrain. That is an issue that the witnesses and the committee could take up. While their hours exceed 15, such people are retraining for future life when they will no longer be a carer.

I supported raising the age for domiciliary care allowance from 16 to 18 years when it was mooted. However, I recognise that as soon as we do that, there will be huge objections from the Opposition parties saying that we are attacking the vulnerable again. The reason I supported the proposal is that I know many children who were in receipt of domiciliary care allowance but when they turned 16 found it very difficult to get the disability allowance. When they were younger, they needed more care by a parent, but they became more independent as they approached the age of 16. However, they lose the disability allowance and the carer, who cared for the child, loses the carer's allowance because the child is no longer in receipt of the required payment. If the age limit for receipt of domiciliary care allowance was raised to 18 years, there would be continuity until they became young adults. However, I think there would be huge opposition to that proposal.

Deputy Jonathan O'Brien

I have one final question. We focus on the area of social protection when it comes to carers but there is also an educational focus, particularly when one is transitioning out of the carer phase. For example, a carer who is caring for a person 24/7 for many years may find himself or herself at a loose end when the person passes away. Is there anything the Department can do to help those people get back to education, further education, training or upskilling? My experience from a family situation is that depression is a huge issue for people coming out of caring for a loved one who has passed away. What is the witnesses' experience of people who suddenly find themselves no longer caring for somebody, how do they got back to normal living in terms of working and socialising and what supports are available to them? It is always about the income. After six weeks the income is gone. The issue is much wider than that.

Ms Clare Duffy

Perhaps I can take the question around increasing the age for domiciliary care allowance up to 18 years. I have always been supportive of increasing the age limit because the disability allowance is essentially an adult payment. When a child with a disability reaches the age of 16, one is essentially saying they should apply for an adult payment. The Senator asked earlier at what point we are telling children or young people with a disability they are not suited to employment. The disability allowance is a payment for people who cannot participate in employment because of their disability. That is a critical transition point. As I recall, budget 2012 proposed that the age be raised from 16 to 18 years, but it was done in tandem with a reduction in disability allowance to €100. My understanding is that parents were upset about the reduction in disability allowance and not necessarily the increase in the age limit. I was involved in the national review committee for domiciliary care allowance where we discussed this issue. Many of the parents groups went back and consulted parents. Parents overwhelmingly supported an increase in the age limit. I think it is wrong to give a 16 year old child an adult payment.

Chairman

If it happened, the media would immediately announce it as a cut and a change that would have a detrimental effect on people. Therefore, we would then be battling with public opinion. It is important that groups such as the witnesses would be very vocal.

Mr. John Dunne

To be honest that is why we are here. At the time we were drowned out in the protests. The committee knows the true story about Edmund Burke who gave a very inspirational speech to his electors in Bristol. He said: "I owe a duty to you to do what I think is in your best long-term interests, not what you are telling me you want." It is very inspiring until one realises he did not get elected until the next election. I will forward the speech to the committee.

On the issue of the respite care grant, having read Pat Leahy's book relatively recently, I sympathise with the Government in that it had backtracked the year before, and if it was to unravel again, I relate to all of that. However, it was disproportionate but I would be happy to acknowledge that I think the Minister has done a remarkable job given the various pressures that were on her. I have said it to her and I am happy to say it here today. Frankly, that was a miscalculation late in the day. It is interesting that each budget has used a slightly different process. The process in that budget was that everybody was kept in the dark in certain areas until almost the last minute and there was not enough time to assess the final gradations of decisions that were being made and that such an allowance was being taken off the list. They all got wiped out the following year so it did not really matter.

On the question of a child attending school during the day and a person losing his or her carer's allowance, that issue is buried somewhere in the presentation. That is an issue not only for education but for somebody going back to work. The Department says, not unreasonably, that if one is working full-time in the home providing care, how can one do the rest? For many carers, as a lifeline to sanity plus an assurance around their pension contributions, plus keeping in touch with a future where they might need to go back to work, the way they choose to spend the respite is in working. Historically, 19.5 hours was the magic trigger around community employment and there was a feeling on the part of the Department that it did not want to go near that. If the Department does not want to do it for everybody, it is obvious that where a carer is looking after a child who is in an institutional setting for a chunk of most days of the week, of course there is potential for that parent to go out and engage more fully, either in education or in the labour market, and we think that is worth looking at.

I refer to the education focus of carers. There is a limit to what one can do when one is caring but taking bereavements as a trigger, one of the first things one could say to a carer is: "It must be a great relief." If a member goes to a funeral, I would not advise him or her to use that phrase because the carer has willingly built his or her life around a relationship caring for somebody. There are bad days but it is not a great relief when that ends.

The carer gets six weeks grace. The wife of one of our board members died recently. He had to go into a nice new shiny Intreo office rather than the old labour exchange, queue and, when he reached the top of the line, say that his wife had died and he was there to discuss his options. It is a rough way to do it. Carers have six weeks to make the adjustment and we have been asking for a while what it would cost to pay the carer's allowance rather than the jobseeker's allowance for six months rather than six weeks. It would probably cost a few hundred euro per person, which is not a huge amount. The humanity that would bring to the process is worth considering.

On personal assistants, one could argue that family carers are an alternative. I am not being trite when I say that. We do not have much of a view on such assistants. We are certainly not against them but they are not a major feature of the caring relationship. Our position is similar on disability access.

Ms Clare Duffy

Our colleagues would have lots to say about that.

Mr. Joe Mason

With regard to personal assistants, we also would not have much of a view on them in the context of personal care. We do not employ them. The vast majority of people who avail of WALK services do not enjoy the supports and services provided by personal assistants. They are much more readily available in the physical and sensory disability world and we are primarily engaged with intellectual disability.

Ms Gráinne Berrill

With regard to Senator Naughton's question, the disability access route to education, DARE, has improved access to education for a large number of young people but generally not the young people we support. There is a great deal of evidence that there is no progression route into third level education, particularly for people with intellectual disabilities. We are doing work on that at the moment with Tallaght IT in the context of a programme based in the college for people. It is normally called a rehabilitative training programme but it is being reconfigured in order that a person who wishes to access education can do so in the mainstream environment. DARE is very much a CAO-based route. A young person who wants to access DARE has to have done the mainstream leaving certificate. Someone who does the leaving certificate applied is not able to tap into it and that is a big gap as well.

Senator Moran has been a fantastic supporter of our programme in many ways. She asked what are the gaps and challenges we see. They are so many and we do not have time to go into them now. This links to the suite of options we referred to earlier. The progression routes for most young people with disabilities are limited and that is the main challenge. The person has to fit the service rather than the service fitting the person. Much of that is funding directed. New Directions, the Department of Health document, acknowledges that services are not in place to fit the person but to fulfil the needs of the service in respect of tapping into funding. We would like to see tailored, individualised programmes or services which are accessible in a variety of ways by different people.

Senator Moloney kindly proposed the nationwide roll-out of our PEER project, which we would love, but we would like Oireachtas Members to keep the fact that there is a gap in the youth guarantee on the agenda. A comprehensive employment strategy will be published at the end of the year. We do not know what it will contain but it will be a great document. Much of the stuff will have been said previously. We would like Oireachtas Members to drive the recognition that there is a gap affecting young people and to address how we bridge it. One of our suggestions might be a working group of like-minded people who would like to drive something like this through.

Senator Marie Moloney

I am sorry we have to leave but there is a division in the Seanad.

Senator Marie-Louise O'Donnell

It was an important afternoon.

Chairman

It was helpful. I thank members and our guests. This will help inform our ongoing debate on this issue.

The joint committee adjourned at 2.55 p.m. until 4 p.m. on Tuesday, 13 May 2014.