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.