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JOINT COMMITTEE ON SOCIAL AND FAMILY AFFAIRS díospóireacht -
Tuesday, 10 Jan 2006

Inclusion Ireland: Presentation.

On behalf of the joint committee, I welcome the delegation from Inclusion Ireland, comprising Ms Deirdre Carroll, chief executive officer, Ms Finnula Garrahy, vice-chairperson and incoming chairperson, and Ms Jean Spain, a member of the board. Both Ms Garrahy and Ms Spain are parents of young women with intellectual disabilities.

Members are reminded of the parliamentary practice that they should not comment on, criticise or make charges against any person outside the House or an official either by name or in such a way as to make him or her identifiable. Members who wish to make a declaration relating to any matter being discussed may do so now or at the beginning of their contributions. Members are also reminded that if there is a possibility of there being a conflict of interest, they should make a declaration of interest either now or at the start of their contribution.

I draw witnesses' attention to the fact that members of the committee have absolute privilege but that the same privilege does not apply to witnesses appearing before it. While it is generally accepted that witnesses would have qualified privilege, the committee is not in a position to guarantee any level of privilege to witnesses appearing before it. The delegates will have heard this admonition on previous occasions. It generally does not have any application but it must be given, particularly when groups appear before the committee. Perhaps Ms Carroll will commence the presentation.

Ms Deirdre Carroll

Before commencing, I wish to apologise to members for being unable to take up the invitation to address the committee before Christmas but we are delighted to have been given another opportunity to come before it today. We have changed the name of our organisation. It was formerly known as NAMHI but we agreed, at an extraordinary general meeting on 10 December last, that it would henceforth be known as Inclusion Ireland, which we believe is a more appropriate title for the philosophy and human rights ethos of our organisation.

Inclusion Ireland is a national voluntary organisation working to promote the rights of people in Ireland with intellectual disabilities. It encompasses 170 organisations, including parents' and friends' groups, professional bodies and so forth. It is probably one of the most widely representative disability groups in the country. Members of the committee will have received our pre-budget submission, which outlines our policy on income maintenance payments for carers and people with disabilities. We do not propose to discuss them in great detail but will concentrate on a few areas of concern to our members.

The issue of carers is most important for the parents of people with disabilities. While the needs of all carers are similar, it is important to recognise that there are often significant additional needs, demands and pressures facing carers of people with disabilities in respect of which specific supports and assistance from the State are required. The 2005 report of the national intellectual disability database shows that over 60% of people with intellectual disabilities live at home, an increase of 3% on the previous year. This is the group we are discussing — the people who are living at home and receiving full-time care and attention, usually from their parents. Many of these parents are elderly. The census shows there is a growing population of people with intellectual disabilities who are living longer. We are told the average cost of a residential place is a minimum of €50,000 a year and can be up to nearly €250,000 depending on the needs of the person with intellectual disability.

We are pleased that the budget this year recognised carers most significantly for the first time. We welcome the increase in the carer's allowance and the other changes to and benefits from the budget, but we see this only as a first step. We would like to see a national strategy for carers which would look at all aspects — not just income support but also at tax-based provision and cost of care as well as encouraging and supporting home care. The joint committee has endorsed this view as well, recommending the provision of a payment of 50% to carers in receipt of the widow's or widower's pension, which has always been a contentious issues for our members. We have many members who are widows and they are also carers, but they must give up their widow's pension if they want to get the carer's allowance. They do not like being put in that position because they often have an insurance-based widow's pension. The carer's allowance is not insurance-based but it does recognise the commitment to caring, so we fully endorse that recommendation of the joint committee.

I draw the attention of the joint committee to the most recent report from the Equality Authority, published just before Christmas, entitled Implementing Equality for Carers. It is an important document and makes many excellent recommendations which we fully endorse. The report's recommendation on the employment needs of carers is relevant to many young parents of younger children with disabilities, particularly women who have no choice but to withdraw from employment outside the home because of caring needs.

We have also had complaints from older women who never had the opportunity to participate in the workforce owing to their caring responsibilities. They feel this disadvantages them greatly in qualifying for any form of contributory pension.

I also wish to refer to disability payments, a major area of concern for us. We were disappointed that there was no cost of disability payment in this year's budget. All groups have asked for this payment since 1996. It would be an important change to make in the next budget.

We welcome the changes in the budget which allow people in receipt of the disability allowance to work much more. It is our view that if one allows people to work for so long in rehabilitative employment, one will always have this dual system where they will be half in the workplace and half on benefits. A cost of disability payment would encourage people to take that step and move totally into the workforce. It is an historical matter. In the past, it was difficult to get back on a disability allowance once one came off it, but that has now changed greatly.

I also wish to draw the joint committee's attention to the issue of charges, a matter the committee probably does not hear much about. The issue relates mainly to older people in nursing homes but it also has an impact for people with disabilities living in residential centres. In the past, people with disabilities who had a disability allowance, living in a community home or in a residential facility, were charged for their care. Since the introduction of new regulations which allow the HSE to impose charges for in-patient services for older people and people with disabilities, a certain anomaly has arisen. That relates to the fact that the classes of charges are for people who receive full-time nursing care or part-time nursing care. Many people with disabilities are living in residential facilities where there is no nursing care. The legality of charging those people has yet to be resolved. Legal advice has been taken by many of these groups but we have still have not received clarification on it. The legality of charging people with disability living in HSE-funded community homes where there is no nursing care provided remains to be clarified. The regulations, as they stand, do not appear to cover this group. Most of the residential care bodies for people with intellectual disabilities are voluntary and it is not clear that they ever had, or continue to have, a legal right to levy charges. It is an issue that has yet to be resolved and it is causing many problems for people with disabilities who are living in the community in residential houses, perhaps run by voluntary organisations. There has been a considerable variety of practice over the years in this area. Some people may be charged as little as €25 a week where others have been charged over €100.

The other area to which I would draw the committee's attention and which relates to social welfare is that of capacity. Many people with an intellectual disability do not have the capacity to manage their financial affairs. In these cases the social welfare legislation allows for the appointment of an agent "to receive and deal with any sum payable by way of benefit on behalf of the claimant or beneficiary" The appointed agents are usually either family members or service providers.

The money remains the property of the person and must be used for the person's benefit. There is no system of monitoring or supervising how agents deal with this money. If the person is not living in residential care the money clearly must be used for basic requirements such as food, clothing and shelter. If the person is in residential care the basics are provided and if there are long-stay charges levied, the remainder belongs to the person and must be used for his or her benefit.

At present it is not clear to Inclusion Ireland how this money is being used. In some cases it is retained by a family member who acts as agent. It is probably more difficult to monitor these individual situations but where the service provider is the agent, it is not always clearly earmarked as the individual's property or that it is being used for the benefit of the individual. The Department of Social and Family Affairs is investigating agency arrangements which we welcome.

The Law Reform Commission has recommended that a person associated with a care facility should not be appointed an agent under social welfare legislation. The commission also recommended that agency agreements be subject to the scrutiny of the public guardian system which it proposed for all substitute decision makers. We fully support this recommendation and ask that the Department of Social and Family Affairs closely supervise and monitor all agreements.

According to Irish law, once one is aged 18 one is an adult and has full capacity to have complete control of one's own affairs, and that is the way it should be. However, for people who have an intellectual disability or who lack capacity, the situation is difficult because either one can be treated as a completely independent adult or one must be made a ward of court. The Law Reform Commission has recommended two reports recently on the need to establish a public guardian system in this country, which not only would affect people with disability but would also be important for elderly people such as those with Alzheimer's disease because the current system makes it every difficult, not just in social welfare decisions, but also in daily care decisions.

The last point I wish to draw to the attention of the committee is an anomaly on which Inclusion Ireland has been campaigning for many years. Up until last year's budget there were over 2,000 people living in residential institutions who had no income of their own and had to live on grace and favour of getting pocket money. The introduction of the disability allowances expense payment of €35 per week to those in residential services not receiving a social welfare allowance in the budget previous to this year's budget was welcomed by us as an important first step for this forgotten group of citizens. At present 2,721 people are receiving this payment. We were disappointed that this small group of forgotten people was not considered this year for a full disability allowance. We would urge that in next year's budget these people be brought into this category and have a full income maintenance payment in their own right. We further urge that the Department ensure that this new payment be made directly to the person and not be paid to the service provider who then pays the person.

I will conclude there. Ms Jean Spain, as a parent of a person with an intellectual disability, will speak on the carer's allowance. She was also requested last year by the Department of Health and Children to chair one of its working groups on family carers and, therefore, has a great deal of experience, both personal and otherwise. I thank the committee for its attention.

Ms Jean Spain

I thank the committee for inviting us to make a presentation.

Ms Carroll referred to our position on social welfare issues and changes that should be made. My daughter is aged 30 and she attends St. Michael's House, while she is also in supported employment. I have been a carer for that time but this is where carers of people with intellectual disabilities differ. The elderly and people with physical disabilities need care for a finite period, while we must provide a lifetime of caring. That is why we are the forgotten carers. I am getting older and caring for my daughter is becoming more difficult but members should spare a thought for the many elderly parents and carers who look after 40 year old and 50 year old children with intellectual disabilities. In many cases, they are not in receipt of allowances because of the means test, although progress has been made in this area.

The respite grant should be paid to all carers. We, as carers, should, like everybody else, be entitled to a break. People take holidays and many were away at Christmas but carers of people with intellectual disabilities must mind them no matter what. We all have other children whom we mind but it is only when one gets a break that one realises how much time one spends with a child with an intellectual disability and how different it is to caring for one's other children. If my daughter is not available to mind Deirdre, I must stay at home or bring her with me. However, Deirdre is very independent and this can cause problems because she does not always want to come with me. Many parents experience the same problem.

The Minister for Social and Family Affairs went some way in raising the limits for the means test for the carer's allowance in the budget. The respite grant was increased from €1,000 to €1,200. The hours one works to be eligible for the grant will increase from June this year. This change will go a long way to helping many carers but thousands of carers will still be left out in the cold. The Department should be urged to publicise the new improvements from June onwards. Inclusion Ireland holds meeting that representatives of the Department are invited to attend. Parents are sometimes gobsmacked when they realise they are entitled to the respite grant and the carer's allowance. This means that the Department is somehow not getting the message across to those who are eligible for these payments. We encourage parents, through our newsletter and other means, to apply for the respite grant.

The carer's allowance should be payable in respect of all carers of persons requiring full-time care. Like others in a similar position, I feel we are ignored by the State because we do valuable work. The majority of those for whom we care are at home with us but we feel that our work is not recognised. The care we provide saves the State considerable money. For example, the cost of a residential place is more than €40,000 and that contribution should be considered.

I thank the joint committee for its report on the position of carers launched in 2003 which had cross-party agreement. I attended the launch of that report which provided us with much hope and which, while it may be only chipping away at the mortar at present, may result in the abolition of the means test. It also highlights the Government's thinking in this area. Carers are happy that at last someone is listening to what is being said. I again congratulate the joint committee in that regard.

Being the carer of a person with an intellectual disability is not a negative experience. My daughter gives me great enjoyment. She is very outspoken in an innocent way, as Kathleen and Séan know well, and that can be embarrassing. She often turns around one's thinking on a certain issue. I thank the joint committee for allowing me to share my experience with them.

Ms Finnula Garrahy

I thank the joint committee for the opportunity to address it. My daughter who celebrated her 30th birthday last October is the only young woman I know who from the age of 26 years could not wait to be 30 years old because she knew it would be celebrated with a party. She is now looking forward to her 40th birthday.

I acknowledge the unexpected recognition in this year's budget of the work done by carers by way of the increase in benefit. Carers are not used to getting recognition for their work. As pointed out by Mr. Tony Campbell from the Department of Social and Family Affairs, much work now needs to be done, by way of advertising and so on, to ensure people are aware of the increase in grant which is not means-tested. It has been acknowledged that the improvements will make a difference.

My daughter, Susan, was born in 1975 and was eligible for the domiciliary care allowance, an issue about which I constantly threaten to write a book, one which might, perhaps, become a bestseller like many of those written by politicians. Inclusion Ireland is anxious to ensure that the domiciliary care allowance be transferred from the Department of Health and Children to the Department of Social and Family Affairs which has made things a great deal easier for families. It appears to be making a genuine effort in working with Inclusion Ireland. Currently, a person with Down's syndrome, like my daughter, is assessed for the allowance. Down's syndrome does not go away; it is with the person for life. When I applied for the allowance, there was much toing and froing in terms of interpreting and analysing the word "severe" as it applied to physical or intellectual disability. I have forgotten much of the detail of what happened at the time.

I applied for the allowance in 1977 when my daughter was two years old. I fought and ballyragged many people until 1982 to get what I now know my daughter was entitled to. Perhaps if I had the will I would seek payment of the allowance retrospectively. That it should take a person five years to get what he or she is entitled to is unacceptable. Payment of the allowance was at that time at the discretion of the medical profession. Also, much depended on the geographical location in which one lived. That is not acceptable. I hope that the new Health Service Executive will ensure that regardless of where a person resides, be it Letterkenny, Malin Head or Kerry, he or she will be aware of his or her entitlements. It is something about which all families should be aware.

My daughter Susan was my fourth born. I had three other children at the time who were four, six and eight years old and I worked outside the home. Coping with the trauma of becoming the parent of a child with an intellectual disability is not easy. The thought of having to cope with this is overwhelming. However, as Jean Spain said, when the parent comes to terms with the situation, it can be a wonderful experience for the family. We describe our child as the light of our life and when she goes away it is as if there is a power cut. At the same time, when she has gone we realise the amount of time we give her. We do not notice it when she is there, but when she is gone we do not have to rush home at ten to five to ensure we are there when she comes home on the bus from her sheltered employment. Her care is all-consuming and is for life.

This is particularly true for parents — the vast majority — who choose to rear their children at home and keep them as long as they can. However, at this stage of life, with both my husband and I retired and my daughter in her 30s, one is overcome with the thought of what will happen in the future. This thought occupies us quite a bit. It is easier for people whose children went into institutional care when they were babies to deal with this emotional trauma. Our daughter does not want to go, nor do we want her to go, but we know she will have to go.

Matters have improved with regard to the domiciliary care allowance, but it is not all plain sailing for everybody. If the entitlement is there, should someone with a specific condition have to go through the hoops for people to make a decision? The entitlement should be automatic for people with a condition that does not go away. Mr. Campbell envisages the Department can do this with regard to the respite care grant next year. He has our name and intends writing to me next year to check that our circumstances are still the same, as I expect they will be, and we will be given the €1,200 automatically. This will save us much hassle and will save us the cost of another medical assessment for a person whose condition will not have changed. The procedure should be straightforward.

We have included in our submission the issue of disability and marriage. A few disabled people will enter a relationship that will lead to marriage. I know of just one young woman with a mild learning disability whose parents have worked with her for 35 years to make her as independent as possible, something they have achieved. However, when she marries, she will lose her entitlements because her husband to be will have an income. Therefore, she will be dependent on somebody once again. For the few disabled people who achieve this level of independence, this loss is unfortunate.

In its submission NAMHI raised the position of people in receipt of disability allowance who get married. NAMHI states that if a person receiving disability allowance marries a person who is working, he or she "may" risk losing their allowance and associated benefits. However, I believe they "will" lose them. Inclusion Ireland believes the allowance should be paid to the disabled person in his or her own right.

The main suggestion of our submission is that the administration of the domiciliary care allowance should be transferred to the Department of Social and Family Affairs. We work well with that Department and I would like to see this happen.

Thank you. Ms Garrahy is one of the first to suggest administration of the payment should be transferred to the Department of Social and Family Affairs. I am sure Deputy Ring will be delighted with that suggestion.

I welcome the delegation from Inclusion Ireland and thank it for its presentation and the work it has been doing over the past number of years under NAMHI and now under its new name. I wish the organisation well with its new name in the future.

The issue of disability payment, which is available in other countries, was raised. On a recent visit to Denmark we found that such a payment is made, which is very progressive. I ask the witnesses to elaborate on what it would mean to people, especially to those with intellectual disability.

I am concerned about a matter raised which smacks of the nursing home charges debacle, the issue of charges and money which people with intellectual disability get in their own right. The witness seemed to imply that much of that money may not go to the benefit of the person for whom it is intended. She maintained that certain issues need to be clarified regarding the legality of charging by voluntary bodies for residential places. We should ask the Minister to follow up on this as a matter of urgency. How long has this been going on? How many people are involved and how much money is involved? We do not want another issue like the nursing homes one. However, if it exists it must be dealt with and resolved sooner rather than later. The committee should follow up this matter in its work and also through subsequent parliamentary questions.

One of the witnesses said considerable problems are caused to people with intellectual disabilities living in residences administered by the various bodies. I ask for elaboration as to the problems. What are they charging? She maintained that no system exists for monitoring or supervision of how agents deal with the money they get on behalf of people with disabilities. How many people are involved? I received a response from the HSE dated 22 December which stated that the number of full-time residential places in 2005 was 8,363. Is that the kind of scale involved? The national intellectual database stated that in 2004, 1,893 people with intellectual disability required full-time residential places but did not have one. I do not have figures for 2005. Perhaps Inclusion Ireland has an up-to-date figure from its own resources. What impact is this having and what are the views of Inclusion Ireland on the matter?

I ask the witnesses to tell us more about the public guardian system. How is it working and how should it work? While I have some knowledge of the system the witnesses may have more.

One of the witnesses rightly stated that an anomaly exists regarding the full disability allowance. People get the disability allowance expenses payment. Almost 3,000 people are getting €35 per week. It is strange that they did not get the full disability allowance. Why were they left with just €35? When this matter first arose, I explored it with the Minister in the Dáil. I was not satisfied with the response I finally got as to why a group of people seem to be discriminated against to that extent. I am sure the full disability allowance would be a great benefit to these people. I ask the witnesses to elaborate as to what difference this would make.

I thank Jean Spain for her honesty and openness in outlining her own situation. All carers need support, including all the support we can give. She said that parents are getting older and it is getting harder. I take it that as parents get older it gets harder for them to look after their children with disability. They also have the worry of what will happen when they are no longer around. Deirdre sounds lovely — I must meet her. There are people who have inappropriately been placed in psychiatric hospitals and who require to be transferred to intellectual disability services. In 2004, I am told there were 286 such persons on the national disabilities database. Has any progress been made and what is the current situation? I am also told there are 1,025 people who do not avail of a respite service but require one, including regular part-time care. I am not sure why that is the case, but the witnesses may know.

Ms Garrahy's proposal on the transfer of the domiciliary care payment is a very interesting one and it should be followed up.

Ms Carroll

The cost-of-disability payment was first mooted in 1996 by the Commission on the Status of People with Disabilities to make allowance for the extra costs surrounding disability in terms of heating, foodstuffs etc. Other European countries have it. A fair amount of work has been done, including a document produced by NDA. Many people with different disabilities are reluctant to give up their disability allowance which is a great shame. When one is 16 years old, one is eligible for a disability allowance and many children in special schools take up that entitlement. Once a person receives the allowance, the impetus to move into employment is restricted by the fear that he or she will lose out on the benefits associated with the disability allowance. A cost-of-disability payment would take away some of that fear. There are now back-to-work allowances which allow people to retain secondary benefits, but they tend to be taken up by the long-term unemployed. There is little take up of them among people with disabilities which is related to their fear of losing their medical cards and other benefits. When the disability allowance was the responsibility of the health boards, it was very difficult to get it back once one had lost it. Since it moved to the Department of Social, Community and Family Affairs, one simply reapplies and is granted the allowance automatically after four weeks. As the allowance is a statutory right, like domiciliary care allowance, it should be taken over by a national statutory body applying national standards.

There have been many changes in charges for people with disabilities in residential settings and they have affected approximately 7,000 people. When the debacle of nursing home charges for the elderly was publicised, people were not aware that there was also an issue for people with disabilities in residential care. Over the past ten years, most people with disability have become entitled to a disability allowance and it became accepted that they could continue to claim it while living in a residential facility rather than in the home. Some services began to make charges on those allowances to contribute to the cost of the upkeep of disabled persons. While we have no problem with charges per se, they varied from service to service. Some charged only €50 while others charged well in excess of €100. The questions of how charges were made, consent and who were the agents must all be looked into as the Department of Social and Family Affairs is doing.

The current provision whereby people can be charged up to €90 or €120 leaves people with a very small amount for personal expenditure. The position may be different for those who are totally incapacitated and need total nursing care, in which case keeping €35 would allow one to buy cigarettes or small toiletries. However, if one is active and living in a community house, it is excessive to have to pay up to €90 as one is left with €40 of one's own money to pay for holidays and all other expenses. Such charges are not in keeping with the dignity of the person.

Inclusion Ireland is not opposed to charging. Those living in social housing must all pay a charge which, I understand, amounts to around €60 per week. This is legitimate and fair and the individuals in question have a tenancy arrangement with the social housing provider.

The Health Service Executive is investigating the charges and has sought legal advice. It has, however, taken six months to reach a conclusion on what the executive is to do about charging people who, rather than receiving full-time or part-time nursing care, are receiving a residential care service funded through the HSE and provided, for instance, by means of a service contract with a voluntary organisation. Some organisations have stopped charging people, until the matter is clarified, while others have continued to charge people. This issue, which also impacts on people with mental health problems living in community housing, needs to be sorted out. I do not know what will be the legal advice.

As regards the question on the guardian system, the Law Reform Commission raised this issue in two reports, one on law reform and the elderly and another on capacity and vulnerable people. It has put forward a strong case for the introduction of a public guardianship system, which would involve appointing a guardian for people who lack capacity. This person would deal, for example, with the financial affairs of a person if he or she was not in a position to do so. The current position is that even though the daughters of Ms Garrahy and Ms Spain have limited capacity in some respects — they may not be able to manage their financial affairs — but good capacity in others, in law Ms Garrahy and Ms Spain are not their daughters' guardians because their daughters are aged over 18 years and, therefore, adults. This leads to particular problems around medical treatment and money. Ireland operates the wards of court system which dates back to the 19th century. The law needs to be updated in this respect. The matter is being examined and Inclusion Ireland fully supports the Law Reform Commission's recommendations in this regard. When it produces a third report, which I believe will relate to draft legislation, Inclusion Ireland will urge the Government not to wait 15 years before implementing it and addressing the practicalities facing people on the ground.

A figure of 286 people was given for those still inappropriately housed in psychiatric hospitals. The majority of this group is probably in St. Ita's in Portrane. Inclusion Ireland believes the true figure to be higher because some of those cared for in inappropriate settings are not in psychiatric hospitals but large designated units. For example, in Youghal, in the Deputy's part of the world, several hundred people are housed in former psychiatric institutions, albeit not strictly psychiatric hospitals. Inclusion Ireland wants the individuals in question to be removed to appropriate housing. Our concern is that many patients of large institutions such as Portrane which, we are informed, will be closed down in the next few years, are being placed in nursing homes in an effort to clear them out. The problem arises with regard to where they will be placed. It is fine to move them out of these institutions but it is not a solution to move them into nursing homes as these are not always appropriate to the needs of people with intellectual disabilities, as the events in Leas Cross last year highlighted. I hope I answered all the questions.

I welcome the delegation. This is one of the most valuable meetings I have attended on this subject. Ball park issues relating to increases come up in the context of the budget and Estimates and there is hype about people getting an increase of €15 or €17. The issues Inclusion Ireland raised here relate to the nitty gritty improvements, the associated problems and other groups providing a service to loved ones and issues that relate to the quality of life for young people. I have no doubt committee members across all party lines will be impressed by the issues raised here today. It gives us an opportunity to pressurise the Minister and take up these issues with him at committee meetings.

Inclusion Ireland acknowledged the role played by the committee under the chairmanship of Deputy Penrose which put the issue of carers on the agenda. We can link into other issues and apply continuing pressure. I compliment the group on that.

One issue raised related to charges and there was reference to patients from St. Ita's Hospital living in housing units within the community and what they have to pay for board and lodgings etc. I previously raised this matter and tried to get the report on it. A resident told me she gets €30. The only outlet for her and many of the residents is smoking and going to bingo once a week. After that, she has nothing left for cosmetics, clothes and so on. This is another example of ripping off the most vulnerable people in society. The delegates have outlined the position for us today which I hope will put this matter on the agenda. The long-overdue report will provide a legal interpretation of the matter. Apart from the legal aspect, there is a moral responsibility to look after people who are institutionalised who are among the most vulnerable in society.

What is happening at St. Ita's is an utter scandal. Promises that were made as far back as the mid-1990s on alternative housing units on the St. Ita's campus have not yet been honoured. I do not know if people are aware that there is a great deal of concern, both within the community and the health service, about residents who are accustomed to the homely environment of St. Ita's who are being put into nursing homes because St. Ita's is being closed down. Many were in Leas Cross when it was closed. Is Inclusion Ireland satisfied that the consultation taking place will ensure that when decisions are taken to move people from their usual environment they will be able to avail of a similar service in another community or nursing home?

Two other aspects of the matter also concern me. There is a lack of suitable transport for people living in the community, especially in rural areas. This is an issue I have come across as spokesperson on issues relating to older people and it is also relevant in this context. For people living in rural areas where there is a lack of suitable transport services, travel passes are of no benefit. Does the delegation have any proposals to deal with this? We have been banging our heads together about private taxi or bus services.

I read with interest the group's budget submission on the impact of income from discretionary trust funds on the payment of disability allowance. The group has stated many parents have set up discretionary trust funds on behalf of children with a disability and that families are concerned that such incomes may affect benefit later. Has this happened? The group also recommended an income disregard similar to that for those in rehabilitative employment, stating it should be investigated and recommended.

It was worth our while hearing the submission and I thank the group for appearing before us.

I thank the delegation for its presentation. It made a good case, particularly when Ms Spain mentioned a lifetime of caring. This is not like caring for an elderly person for a year or two; these carers will be caring all their lives and this must be taken into consideration. The Minister has acknowledged that carers should be looked after and all of us on this committee support the group and will do what we can to make life easier for those who care for people with disabilities.

Some people with disabilities are able to do certain work. Is it hard to find employment? How do employers react? Are they well intentioned towards the disabled or do they not want to know?

We have repeatedly mentioned the widow's allowance versus the carer's allowance. It is an unfair argument. The Minister has gone a certain way — it was one of the reasons he increased the carer's allowance — but we still feel he should pursue the issue of a half rate, which we recommend in our report. It is unfair if two people live together and one is a widow to say she is not entitled to receive the pension.

I compliment the group on the case it has presented and assure it of our support.

Ms Carroll

I shall respond to Deputy Ryan. We are concerned about the position at St. Ita's. We think people will be moved without due discussions with them or their families. We have initiated a small project as part of which we will employ an advocacy officer who will work with people to find out what they want, not what the service or others want. It will not be placed on a statutory basis; we are only doing it as a project.

Moving people from St. Ita's to homes such as Leas Cross raises the issue of standards, an issue dear to the hearts of those involved in Inclusion Ireland. When people are placed in psychiatric hospitals, they are under the care of the Inspector of Mental Health Services. On leaving this care they may move into private nursing homes. While there are standards for and inspections of private homes, these leave much to be desired. It is unacceptable that there are no standards for or inspections of residential services for people with disabilities, outside nursing homes or psychiatric hospitals. The National Disability Authority has drawn up national standards with the Department of Health and Children but we have waited at least two years for these to be implemented. Service providers are not altogether happy with the standards but it is essential to implement them to reassure people that there is some form of inspection. Although people with disabilities living in residential services comprise one of the most vulnerable groups in society, they are not covered by national standards or inspections.

We advise people to set up a trust fund for their children. Some are not aware that unless they protect a sum of money for a child with disabilities, the sum inherited will be deducted from the child's disability payment. For example, one man was in receipt of a small pension from the British Army which he left to a daughter with a disability but the amount was subtracted from her disability allowance. A discretionary trust fund protects such income. The Department of Social and Family Affairs is amenable to this procedure. That is not to say, however, that if one inherits €1 million, one should continue to receive disability allowance. This applies to smaller amounts.

Ms Garrahy

I shall respond to the question on transport. It took several years for the companion pass to be awarded. A little woman from Cork fought for it for years because she said it was no good her husband going to a match if she had to pay for his brother to go with him. The same applies if people bring a child or an adult back to a community house or residence. They must pay the fare home. Inclusion Ireland asks that the companion pass cover the cost of the return journey without the person with a disability.

I live in a village not far from Dublin but only once a week does CIE grace us with public transport, on a Wednesday morning, returning that evening. Many old people — perhaps a few with an intellectual disability — in the village and surrounding areas are stranded. They have the pass but never use it. Something should be done to provide a taxi or hackney service. Many parents ask about the round trip pass in respect of which one journey is taken with the person with a disability and one without.

Many extra expenses are incurred in minding someone with a disability. However, we do not think about income while parents and siblings are alive and earning, and able to provide holidays. If services are not tightened, I cannot be sure that in the future my daughter will be able to have a holiday every year or adequate clothing and not depend on hand-me-downs. I hope we have left such a situation behind and want to ensure that is the case.

Ms Spain

My daughter is in employment supported by St. Michael's House. She works in Jury's Inn, Christchurch, Dublin. Her employer treats her very well but previous employments did not work out. The success of this depends on the employer being very open to the person with an intellectual disability. If an employer is very open to someone with an intellectual disability, he or she will realise such a person cannot do everything. That will happen eventually. The awful thing is that at the end of last year a new manager was put in place — a rather minor issue on the face of it but she did not realise Deirdre had an intellectual disability, since, to anyone who knows her, she looks normal. Naturally, one realises something is wrong when one speaks to her but one cannot put one's finger on it. The manager did not realise she had a disability and caused mayhem in our lives, since Deirdre felt she was being bullied.

At the moment the buzzwords for people with an intellectual disability are "I am being bullied". Deirdre was asked to do very simple tasks but to her she was being bullied, since it was out of synch for her. She is given a list of jobs to do, which she does. If someone says to her she must empty the waste bin and it is not on the list, she does not do it, believing instead someone is bullying her. When she comes home to us, we tell her that if her boss asks her to do something, she must do it and forget about the list for the time being. It is in the nature of those with intellectual disabilities that if they are told to do something, they will do it only in that way.

Thankfully, the manager left and Jury's got around the problem. Staff of St. Michael's House went in and said it should realise the person concerned had a disability. "Inclusive recruitment" is the name for supported employment. It got around the problem by having her write a short piece about what happened in her life outside work. As it was included in the magazine, she was a star for a month or two. Then everyone on the staff realised who and what she was. Now she complains that people are always asking her if she is all right; it has gone from one extreme to the other. The issue arose mainly because the manager did not realise she had a disability and had received no disability training. However, thankfully, it has now all been sorted out and there is a new manager in place.

Deirdre turned 30 in November and instead of a party which Ms Garrahy's daughter had, we are going to Australia, since that is what she wanted. I asked her how she would get three weeks off work and she told me that the new manager was nice. Many have found that, once they have such people working for them, all they know is people telling them that they are great. If they have to do something, they will do it. They will stay on at work to do something, whereas we might say it is 5.30 p.m. and time to go home. If employers take them on, they will realise what good employees they are. I hope I have answered the question.

Regarding Portrane, assets are a major worry. People are still being placed there, as Deirdre knows. Recently more were placed there. As parents, our biggest fear concerns where our child will go when we are gone and whether it might be Portrane. The staff are fantastic and Deirdre and I have visited it perhaps four times. However, it is an awful worry, since the land is extremely valuable. We do not know what will happen down the road and whether they will simply sell it off and once more place residents in inappropriate nursing homes where there is no stimulation. There is not even that much stimulation provided in Portrane but at least they are all together and know one another, the staff and whom they can ask for help. Many walk down to the village to get their bits and pieces. There should be a great deal of thought before doing away with it.

I was very worried by the case of Peter McKenna. If by any chance I am not here, my daughter should be cared for by her other sibling. She could be made a ward of court. How do I know that will not happen? Many parents feel this was a major issue and that we should stop the placement of our children in the likes of Leas Cross.

I compliment the delegation. It is wonderful to see such parents here. They are not experts but they are fully qualified as they are the only ones who know. They are not looking at books; they are talking from the heart. They are the best delegates to appear before the committee in a long time. Ms Carroll also made an excellent presentation but the two people concerned are speaking from the heart. I compliment them and the thousands of parents like them who have looked after their loved ones.

I hope the issue relating to charges will be dealt with quickly by the Minister. It is not fair that there is uncertainty. We do not want another tribunal or investigation lasting five or six years, to be paid for by the taxpayer. Instead, we should be giving the people concerned more resources and more money.

What has been the impact of the Disability Act 2005? Ms Spain spoke about the respite grant. I thought those who did not qualify for carer's allowance would receive that benefit without any problem. That was the one thing for which we all had fought. I hope those who provide care and do not receive payment for it obtain the grant.

There was never as much money in the country as there is now. As politicians, we must get our priorities right. We have the resources and it would be a shame not to allocate resources to those who need them such as people with disabilities and those who incur extra costs in dealing with them. It would not cost the State much to provide that extra help. We had a most enjoyable few months listening to people as they made their case before the committee. We made recommendations to the Minister and, to be fair, he has taken up some of them. I hope he will take up even more, especially the one that those in receipt of a State pension receive an extra 50% for looking after family members with disabilities as such work costs the State a fortune.

In about a year's time we should bring someone from the HSE before the committee to inform us how the transfer of patients from those places which have closed to private nursing homes is being monitored. We need to know what is happening. I am very worried. I see people in my own county being moved from a State nursing home and being forced — not asked — into a private nursing home. Whether they like to admit it, private nursing homes aim to make money. They will not provide the same love or care and will not give the same service as the State is expected to provide. I am worried about who will supervise such homes.

In time we should bring before the committee officials from the Department of Social and Family Affairs and the Department of Health and Children, as well as representatives from interest groups, in order that we can monitor these developments. I see disaster after disaster happening. People have to come me who are concerned and upset. They are not being asked to leave institutions, rather they are being forced out into private nursing homes. In my area a number of nursing homes are finding it difficult. The position is different in Dublin. I do not want to see standards slipping. I want to see people being provided with the best care possible but standards must be monitored and supervised.

I thank the delegation for attending and being so frank, open and honest. I congratulate it for its presentation which conveys the prejudice and confusion involved. I congratulate Ms Carroll for displaying political incorrectness — she says what she feels and what she has to say is very interesting.

Most areas of the subject have been covered comprehensively. What follows is a personal view, about which I would like to know the delegation's view. The Disability Bill was intense legislation due to the differences involved. During the hearings conducted before the taking of the Bill, I found it difficult to get my head around the fact that service providers funded by the State, including the heads of such organisations, had made submissions on the Bill. While I accept they should make submissions on any legislation that applies to them, I do not understand why certain people in the area of service provision serve on several boards and with different providers.

Is there accountability with regard to State funding for people with intellectual disabilities in, for example, sheltered workshops and for those who provide services for people with disabilities? A huge amount goes out, yet there is no accountability. Do the organisations involved explain how they use funding and what their plans are for the following year?

Everybody welcomed the roll-over budget of last year. It was welcome because if one had to plan for the development of services, it was necessary to budget on a roll-over basis. What difference has this funding made in the provision of services?

I welcome the delegation and thank it for its excellent presentation. Like Deputy Callanan, I was struck by Ms Spain's reference to a lifetime of caring which caused me to think about my own life. I am a mother of four and my children are all young adults. I look forward to the day when they will leave home, although none of them seems to be moving on. I look forward to having some time for me again — whatever the buzzword is. It struck me that Ms Garrahy and Ms Spain, two mothers, did not think like that and did not look forward to that day which might never come for me because my children are all staying at home but at least I have it as a dream.

Deputy Ryan is correct that across all parties members feel groups such as that represented here are the silent minority and doing the State great service, for which they are not being properly recognised. I do not think any member would say otherwise. Ms Spain noted that the situation was improving and that we were gradually chipping away at the problem. The country has a lot of money and we are making progress on the issue. Congratulations are due to the Chairman and the committee with regard to the praise they have received from Inclusion Ireland. The committee is progressing the issue and the system is working well.

In light of what has been said, there is an onus on everyone to praise the Department of Social and Family Affairs. The delegation from Inclusion Ireland has given considerable praise to the Minister for Social and Family Affairs.

One member of the delegation pointed out that public relations must be improved. I will raise that matter with the Minister. Advertisements informing people about their entitlements should be broadcast on television at prime viewing times in order to reach everyone. The Consumers Association has produced very effective advertisements informing people about their rights.

Ms Garrahy referred to a couple with a daughter who has a mild intellectual disability. This couple worked very hard with her for a number of years to make her independent and it is wonderful that she has now met someone with whom she can share her life. I agree wholeheartedly that it would be wrong for this girl to lose whatever grant or assistance she receives. All able-bodied people know that relationships may not last indefinitely. Relationships can break down and leave disabled people in uncertain situations. I estimate that only a small number of people with disabilities get married or enter into permanent relationships. A solution could be worked out if the number of people in this group could be ascertained. This is a further example of the chipping away of the link between Inclusion Ireland and the Department of Social and Family Affairs. We could possibly raise the issue if the numbers were available to us.

I thank my colleagues for their brevity.

Ms Carroll

Deputies Ring and Lynch stated that the Disability Act has been passed but that no date has been given for its enactment. Inclusion Ireland was very disappointed with the legislation. It made its views known in this regard and made submissions on the legislation before it was enacted. Inclusion Ireland was part of the disability legislation consultative group. The latter was a representative group that included many service providers and people with disabilities. It liaised and consulted with the Government over three years. Inclusion Ireland withdrew from the group because of its disappointment with the Bill that finally emerged. We accept that the Act has been passed and we will examine it because we are anxious to work with the Government and the relevant Departments in respect of it.

A new representative grouping should, however, be established. Such a group would allow us and other groups of people with disabilities to become involved in making submissions on how the Act is working. The disability legislation consultative group remains and is considered by some people to be the main body for negotiating the Act but Inclusion Ireland and other groups that mainly represent people with disabilities are not part of it. While we recognise that the Act has been passed, we wish to become involved and not remain on the margins. It would be much more appropriate if a new consultative representative forum, perhaps under the aegis of the Department of the Taoiseach, was established. As part of such a group, we could monitor progress and work with the Minister and Government of the day on the way the Act is being implemented. If the Act is not working out, we could provide feedback. In addition, the Act affects people throughout the country and we are very well placed to provide feedback to the Government and Departments in that regard.

In response to the query from Deputy Ring about the respite care grant, the non-means tested respite care grant is getting through to people. A number of our members believed that it was too good to be true and did not apply for it. This is where public relations comes into play. The grant is very welcome because it is paid directly to the individual, which is very innovative.

The fact that an all-party committee came out so strongly in its report and made a recommendation about the 50% allowance for widows gave us great support because such a committee includes all parties and independent Members, not just the Opposition parties. We were informed that it was an immutable fact that one could not be paid two social welfare allowances but this is not the case. That the all party committee can recommend a 50% allowance helps us in our campaign. I thank the committee.

Ms Garrahy

Deputy Lynch referred to service providers. Our situation is unique in that, to move matters forward, we must work with service providers because it is they — in consultation with my husband and I — who know what we want for our daughter. If there is a good relationship between a service provider and a family, it improves quality of life for a person with an intellectual disability. It is crucial that they work together.

Senator Feeney referred to the lifetime commitment to rearing. The normal situation used to be that children left home at 18 years of age but now they leave when they are in their late 20s. Perhaps the food at home is too good.

Sometimes children do not leave home at all.

Ms Garrahy

Children leave on a Monday morning and arrive home on Friday with dirty washing. Psychologists have told me that, unknown to them, this eats away at parents.

Ms Spain

In answer to Deputy Ring's question about the respite grant, I am not the person who can take it up as I work full-time. I will hopefully get it further down the road. The Minister has said that, from June, one can work 15 hours, whereas it used to be ten. We attended a seminar in Killarney where the parents were not aware of or did not believe this and, as a result of their interest, we ran out of application forms. Inclusion Ireland — I cannot grow used to that name even after all of the battling — needed to send out additional forms. We were taking notes and I had to tell people that they could access the forms on the website. It is fantastic that we at least have something.

In answer to Deputy Lynch's question on obtaining accounts, a report of the Comptroller and Auditor General was leaked and an article in a newspaper in November mentioned how he felt that all of these places should be audited and that we should know to where exactly the money is going. His report will hopefully be published at some stage and we can peruse it.

Regarding the number of people getting married, my daughter attended Scoil Ciaran in Glasnevin. I returned there, as president and in the company of Deputy Carey, to unveil a plaque relating to the improvements. One of my daughter's teachers told me to visit because the improvements in education could not have been believed. As a parent, I used to sit in to teach children how to read while the teacher could work with someone who needed extra help but she now has three different classroom assistants or teachers, which is such a surprise. This was the first class for five or six year olds, children who would usually be running around the place but who now do not do so as a result of the various changes.

The teacher informed me about another major change, namely, that most of the children at the school are those of the people I would have known. I do not know whether those people are now married, in partnerships or single parents because we could not ask them but all were present and proud of their children for going to the same school they attended. The people we are discussing are becoming parents, which is a matter we should examine.

I would be shocked if many people in County Mayo are not receiving the respite care grant.

I hope, for our guests' benefit, that the Government will do as good a job with our taxes as it indicated in October and that it will be able to inform us that this grant will be available as well, with the same amount of money spent on it.

Indeed it will.

It knows how to take it all in but does not know how to give it out.

It is difficult to get a word in edgeways sometimes. I congratulate the members of delegation on their presentation, on speaking from the heart and on the work they do.

I wish to comment on the name change, with which I agree. Has Inclusion Ireland considered including the words "disability" or "mental disability" in its title? People may consider the word "inclusion" to refer to a broad church and to be a generic term. I hope this is helpful.

The points put forward have given us much food for thought and I hope progress can be made on the issues so eloquently outlined. The disabled person has a special relationship with the parent and no one can replace a parent or love a person in the same way as a parent. The question of what will happen after a parent is gone creates heartache for people. Could the suggested strategy for carers address this matter? There should be some type of progression in preparation for this time because there is nothing more certain than death. For parents of disabled people, there should be some programme or mechanism to ensure that the heartache is eased to some degree.

Home care is best and support must be provided to the person in the home. A person in community housing or sheltered housing has considerable needs. The Government slipped up this year in its funding of the defined revenue funding scheme. This scheme provides support to voluntary organisations or housing organisations supporting those who cared for disabled or older people in the community. The defined revenue funding scheme could be a means of retaining people in this method of care, which is closer to home than an institution. Funding for the scheme amounts to less than €500,000, and was increased by a pittance in this year's budget. Some €2.5 million is necessary to make an impact and this could result in a major investment for Government and the community. The Government has a blind spot in this regard.

I raised the matter of the blue card in debates on the Disability Act. The delegation referred to repeated examinations and I question the need for this. Annual re-evaluations of someone with a profound disability borders on the ludicrous. What does the delegation think of a blue card, which could serve as a passport to services provided for people with disability? It is demoralising for parents and disabled people to seek their entitlements with cap in hand. It is obvious to a blind man that the system I suggest is something people need and deserve. Why must they continually undergo these procedures? Perhaps blue cards could establish both people's disabilities — thereby alleviating the need for ridiculous annual examinations — and the right of those who possess them to access services.

Class 1 charges were mentioned. What amount should constitute a proper charge? How much does such a person need and how would one determine the exact nature of his or her needs? Everybody is different and the point was made that the allowance should depend on the person rather than applying a broad approach. How should one hone in on that?

What is the delegation's experience in respect of the availability of respite places? Such places should be available but people who would like to have access to respite often have difficulties acquiring it. Respite is a lifeline to older carers in particular. Is respite care available when people want it? How does the delegation feel its availability could be improved? I know that a certain amount of nursing home beds are available. Could the Government introduce a scheme to guarantee funding for community-oriented nursing homes or facilities to ensure that when parents need the distinct and necessary lifeline, it will be there for them? That is often the problem.

I welcome the delegation and thank its members for acknowledging the work the committee did in presenting and preparing its report on carers. The Joint Committee on Social and Family Affairs examines the public relations aspect of all schemes and I support that.

I find it disquieting that people with intellectual disabilities are sent to nursing homes. I ask that the delegation keep the Chairman informed on all monitoring it carries out. The Chairman will, in turn, keep the committee informed. This is a serious matter. We must examine it and not allow it to happen.

The delegation suggested that some responsibility in this area be removed from the Department of Health and Children and given to the Department of Social and Family Affairs. The delegation should communicate any recommendations it has on that matter to the Chairman so that we can examine them and perhaps make recommendations to the Minister.

We are deeply concerned about some of the comments and assertions made on charges. I assure the delegation that we will pursue this matter, which might involve an exploitative element whereby people do not have a voice. A person's parents may have moved on and he or she may not have anyone in a position of guardianship. As a barrister, I am deeply concerned about and note the points made on the need to implement a public guardianship system on a significantly wider basis than that anticipated or provided for in the Law Reform Commission's report and also the need to update the ward of court system. The latter can be somewhat unwieldy and too bureaucratic for many people to deal with. We will pursue those matters.

As Deputy Carty stated, the delegation should keep us informed. The committee was established in March 2003. It received approximately 85 submissions on its report on carers and numerous oral hearings were made. Many hours were spent discussing matters down here in the bunker but the media was not interested in covering our deliberations. Its members probably thought we were on holidays when we were, in fact, working. They always report when we are on holidays. We spent much time on the report. No consultants were used. We compiled it ourselves. I am extremely proud of that work. If I leave Dáil Éireann having done nothing else, I will at least know that we brought caring to the top of the political agenda.

Like my colleagues, I have a strong personal interest in this matter. We worked through this issue. We listened to the heart-rending and real life stories of people, some of whom represent organisations and many others who represent ordinary individuals from Cork to Letterkenny and Malin Head. As a politician, I have wondered what good would we be if all we worried about was the level of capital gains tax that should be paid by the really rich while allowing such people to go unnoticed. All they asked for was recognition and they did not care about the level of funding.

This committee takes various views, one of which is that the means test for the carer's allowance should be abolished. Does Inclusion Ireland consider that essential? Deputy Cowley remarked that in this regard, one can be examined inside out. With regard to tests such as the one for the carer's allowance, while I recognise the Minister provided for a substantial increase this year, the maximum payable is €200 for those over 80 years of age. That amounts to €10,000 per annum, whereas the minimum is €40,000 if one is institutionalised. At one quarter of the price, we are getting care on the cheap in this country and, as a nation, have exploited the work of people. If that happened in any other walk of life, we would be almost knocking each other down in a politically correct way to reveal the unfairness of it.

Someone said that hard cases make bad law, but one case illustrates these matters. A woman who, with her husband, cared for her elderly mother was subsequently widowed. As his income was not large, she formerly received a carer's allowance. When the husband died unexpectedly, she was entitled to the survivor's pension on the basis of his contributions. Not only did she lose her husband's income but she was also faced with the problem of losing the carer's allowance upon receipt of the widow's pension. She got, therefore, a triple whammy from the State. That is why we were moved to include that recommendation.

We were contacted by a woman from south Dublin, who, as a widow, spent 30 years caring for a child with Down's syndrome but could not get anything. These cases persuaded us to examine this area in great detail. We decided to exclude consultants so as to hear from the people concerned without any window dressing. We came up with what I consider to be the most comprehensive report on caring compiled to date. The language may not be as precise as some may wish but it got to the core of the issue. In fairness to the Minister, Deputy Brennan, he has provided for some of the 15 recommendations we made, such as the one on carer's benefit, which came directly from this committee. I compliment him on doing so and on listening to us. Some believe that committees are merely talking shops but most of the issues raised here have been worthwhile and have impacted on people. Every politician here interacts with people, whether on Christmas day or any other day of the year.

Inclusion Ireland's presentation has added a further important element to our considerations and we ask the delegates to return in a few months' time to discuss these issues. The cost of disability allowance will be the next vital issue to be addressed in this fight for recognition. If that is achieved, irrespective of the Government in power, the State will have, at long last, recognised that element in caring for people with intellectual or other disabilities. Inclusion Ireland has contributed significantly to our knowledge of the matter and it complements our own work in the area. I hope it will continue to do so. Deputy Cowley is correct that there should be some reference to disability in the new name because "Inclusion" can refer to any aspect of life in Ireland. I ask the delegates to reply.

Ms Carroll

We are called "Inclusion Ireland — National Association for People with an Intellectual Disability in Ireland" and this appears on all our documentation but we did not want to be too long-winded today.

Ms Garrahy

Deputy Cowley suggested preparing for when parents are no longer around. That is a personal matter and each family must decide for itself. The State can help by, for example, the extension of respite care. I have been given €1,200 to buy in respite care but it is not easy to get people to take responsibility for people with an intellectual disability. Families can be daunted by such a task. My daughter Susan is not a particularly difficult case but many are. People who have children with severe disabilities, those who need it most, find it very difficult to get respite care from the HSE or any other source, whereas those with lesser problems are able to avail of it more readily. I would like to see something done in that regard because keeping siblings at home can save a marriage.

Extra respite care away from the home and schemes such as "Share a Break" can help break the links and prepare disabled people for community living, which is inevitable for most of them.

I also raised the issue of a blue card.

Ms Spain

Ms Garrahy talked about changes in domiciliary care allowance. I had to bring my daughter Deirdre back every six months to renew my claim. I had to describe her behaviour but she was becoming independent to a certain degree so I had to tell her to lie to get the allowance. My daughter very rarely tells fibs so it was a degrading thing to have to do.

The blue card sounds a good idea and we might discuss it. It sounds like a passport to be stamped at various stages. It must cost the HSE a lot of money to see people every six months as is the case in Dublin. Fees have to be paid for the doctor, accommodation, etc. There are no overnight miracle cures so the visit just confirms the ongoing position. We will take the idea on board and might put it to our members.

The language in the report was excellent because all of us, widows, people with intellectual disabilities and carers, were able to read and understand it, unlike the Bills we ordinary people find so difficult. It stood out in that respect.

It must soon be time to update it but I will let the next chairperson worry about that.

I thank the delegates for their answers. I also asked about the defined revenue funding scheme.

Ms Carroll

Most people with intellectual disabilities who are housed have tended to be housed through the Department of Health and Children, which would give grants to the voluntary bodies which build community houses. In recent years, more of the voluntary bodies have formed housing associations in order to provide social housing. We welcome this as the process is put on a much stronger statutory basis when people become tenants. The issue of an appropriate charge was mentioned, and there is a charge of approximately €60 for these schemes. The coverage of the charge is well defined. We would like to see this type of process continuing.

The problem for some with disabilities is that there is a health care component in addition to the housing issue. It is a question of getting both the Department of the Environment, Heritage and Local Government and the Health Service Executive or the Department of Health and Children together to discuss who will pay for the health support. Approximately 48% of housing for people with intellectual disabilities comes under the aegis of the Department of the Environment, Heritage and Local Government's grant-aided housing. We are moving in this direction as the other system involved questions of overcharging and the reasons for the charges. If the health boards were paying for housing and maintenance, why were people paying for the services?

I have a point on housing provided by a voluntary housing association, which may be a disability group.

Ms Carroll

Yes.

The capital is there——

Ms Carroll

It is the support.

It is the revenue cost of buying in support. It would allow, for example, caretaker services in health services. These would allow a person to stay in the community rather than having to go into a more hands-on support institution. This may be a good distance from the person's community, away from friends and other supports. These efforts may be an avenue to support such people in the community when they are unable to stay at home because, for example, their parents have passed away. These people would ultimately be able to stay in a more natural setting in this way.

The precedent is now established. A small amount has been allocated but there was disappointment that this has not been increased in any significant way. The amount is still less than €500,000. I thank Ms Carroll. What is her response to this issue?

Ms Carroll

We support that approach. In Ennis, the Deputy's own part of the world, there is an initiative to keep people living within their own communities. Such actions would have our full support. We may find out more about the scheme for our next budget submission.

The Irish Council for Social Housing would have been very supportive in this regard.

Ms Carroll

We are members of that organisation.

This is an issue to be discussed in the future.

I thank Ms Carroll and her colleagues. We have had a valuable meeting with a useful exchange of ideas. Propositions and proposals have come from both sides which will, I hope, be complementary and useful for both sides in advancing the ideas on the disability issue.

Some of the areas we have covered are complementary in the desire to improve significant parts of the overall issue, particularly with regard to inclusion. I look forward to this group appearing before the joint committee again in the near future so we can evaluate progress. It is similar to the carers' issue, where we at certain stages discuss the report and what has been achieved. It is important to have a yardstick to measure progress. We are dealing with people who, without the advocacy of groups such as Inclusion Ireland, may not have seen any progress. This matter may not have been brought to public attention or be on the agenda where it should be.

We will seek to invite this group back in future, and if there are any matters which the witnesses feel should be referred to the joint committee, they should feel free to do so. We will be willing to listen. I thank the witnesses.

The joint committee adjourned at 4.30 p.m. sine die.

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