I welcome Mr. Robin Webster, chief executive officer, Mr. Eamon Timmins and Ms Lorna Roe, members of Age Action Ireland. I draw attention to the fact that while members of the committee have absolute privilege, the same privilege does not apply to witnesses. 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 Houses or an official by name or in such a way as to make him or her identifiable. I welcome the delegation and look forward to the presentation, following which members will ask questions. We apologise for being late in starting but our housekeeping session ran over time.
Nursing Homes Support Scheme Bill 2008: Discussion with Age Action Ireland.
Mr. Robin Webster
On behalf of Age Action Ireland, I thank the joint committee for the invitation to address it. I introduce Mr. Eamon Timmins, head of advocacy and communications, and Ms Lorna Roe, social policy officer, who will help me and the committee in the discussion and the question and answer session.
When we addressed the committee last July, we outlined our concerns that the Bill introduced, for the first time in Irish health services, a charge beyond the grave for essential health care services and that some older people would be treated unfavourably, for example, those with conditions such as dementia and stroke, compared with those who had a heart attack and cancer. We will not repeat these concerns, but I stress that we and many older people remain deeply worried about the Bill and its implications for the development of long-term care services in our ageing society. Since the publication of the Bill in October we have circulated a detailed brief on our concerns to Deputies and Senators. Today we are circulating to committee members a further briefing document and some proposed amendments to the Bill. Many of these issues can be addressed on Committee Stage to prevent unintended and damaging consequences of the Bill. A draft of this address has already been provided for members, so I will highlight the main points to allow more time for questions and discussion.
There is protection for couples, as defined in the Bill, but this does not cover siblings living together. We wish to stress that this might result in considerable financial hardship.
The care needs assessment is critical to the effective operation of the fair deal scheme. We need more clarity on how the care needs assessment will work in practice and give examples of several situations. We ask how older people gain access to assessment, how family support, which is critical, will be assessed? Under section 7 of the Bill, the care needs assessment requires the input of trained professionals to review and assess the social variables as part of the assessment of family and community supports. We believe that social workers should be added to the membership of such multidisciplinary teams carrying out assessments.
It is critical that we do not divorce residential care from community and home care. Both are critical paths and are interdependent. We referred to research carried out by the Irish Association of Social Workers and Age Action Ireland which shows how patchy the provision of home care packages is across the country. In some places, they were inadequate but in others they were hardly available. The Government argues this Bill will end geographical inequity as all people will have equal access to nursing homes. However, this serious geographical inequity will remain if entry to a nursing home is determined by different levels of community care, which vary across the country. If the absence of community care is a factor in determining that a person needs residential care, we suggest the case be re-assessed every 12 months, so that should community care become available, the person could have the opportunity to return to live in his or her own home, which is the wish of most older people.
Section 21 of the Bill deals with assisted decision making. Age Action Ireland has always campaigned on behalf of the most vulnerable of older people. We are concerned about the Bill's provision for those who are found not to have the mental capacity to consent to the charge on the home, in particular people with dementia, but this applies to other conditions. It is essential that the person being assessed is fully informed about the process and the consequences of being diagnosed with a mental incapacity. To that end it is crucial to provide assisted or supported decision making, similar to provisions provided in the Disability Act and the developed thinking under the scheme for mental capacity.
On the question of consent to contracting services, we question whether the Bill protects the individual in the process of accepting to buy residential care services from the HSE. In making a financial contract, a key element is consent to purchase. In the Bill, the care representative is empowered to make financial arrangements relating to the HSE charges but it does not represent the wishes of the individual in consenting to the service in question, nor to advocate that person's wishes when it comes to his or her care arrangements. The person's consent in requesting care services is flawed as we understand it may be a "specified person" who submits an application requesting care services and not the older person. Second, the court may make the decision based on the principle of "best interests" without having to consider the personal wishes of the individual. It is the view of Age Action Ireland that "best interests" must be based on the expressed wishes of the person concerned. The review process is critically important but there is a major conflict of interest, as the people brought in to carry out reviews are employed by the HSE, one of the interested parties. We call for independence in this process in order that both parties will be properly and separately represented.
On financial issues, we are concerned about resource capping, as opposed to a demand-led service. If long-term care services are to develop, there must be proper, earmarked funding in order that there will be no unpredictable, insecure funding; the latter type of funding would result in greater insecurity for old people and longer waiting lists. The lack of State funding could undermine the provision of long-term care. What will happen to people who have been assessed as needing long-term care if no beds or funds are available? We do not know what plan B is; this is a critical question.
It is important that nobody should pay more than 15% of the value of his or her home towards the cost of nursing home care. This issue was raised throughout the discussion of the Bill and in earlier proposals.
Clarity is also needed as to what the fair deal charge will cover. Long-term residential care is defined in the Bill as maintenance, health or personal care services, or any combination thereof, provided for a person. Section 7(8) stipulates needs for services will be identified in the care needs assessment. However, section 7(11) states that when a care needs assessment is carried out, it shall not be construed as meaning that the executive will provide or will arrange for the provision of any service identified in the assessment as being appropriate to the people concerned. Therefore, the executive has no obligation to provide for these services, which could completely undermine the provision. In practice, the HSE is not obliged to provide the goods and services identified. Implementation of the Bill will mean individuals' contributions will only pay for basic care services. How is an individual to pay for the additional services he or she needs if 80% of his or her disposable income is being used to pay for basic services? The Bill should define the range of services to be provided in long-term care and impose a duty on the HSE and private nursing homes to provide these services. This would be in line with the national quality standards for residential care published by HIQA yesterday.
Old people in acute care beds have been labelled "bed-blockers" but, using the Department of Health and Children's methodology for assessing the appropriate use of acute beds, for clients for whom there is no alternative to admission to an acute hospital with high technology facilities this is seen as appropriate. We can therefore conclude that the problem is not the inappropriate use of acute beds but an inappropriate supply of viable alternatives to acute care. There is also a lack of discharge routes for older people with proven needs for after-care services. The last time I appeared before the committee we all agreed that the notion of bed-blockers was entirely inappropriate as it turned victims into culprits. Why are we proposing to charge elderly persons for acute care when they have no other option? How is this reasonable? This measure will disproportionately affect vulnerable, low income elderly clients and may further motivate hospital physicians to refer their clients to nursing home care on the basis that there are no family and community supports to look after them or the person concerned would otherwise be charged for care, regardless of ability to pay.
I thank committee members for the invitation to address them. I will be glad to answer questions.
I thank the delegates for the presentation and commend them on the work they do in this area. I thank them for proposing their amendments, many of which make a great deal of sense. The case for the inclusion of siblings as couples was very well made, as was the call for independence in the review process because it is of critical importance that the same people do not carry out both the assessment and the review.
Mr. Webster said that if this legislation was passed it would mean those who had conditions such as dementia and stroke would be treated differently from those who had heart attacks and cancer. Can he elaborate on that point? What are his fears for such an eventuality? Since the last time Age Action Ireland was before the joint committee, what have its experiences been of step-down places, residential places and home care packages?
I welcome the delegates and thank them for their brief. The matter has been dealt with in the Dáil but there will be another opportunity to table amendments when the Bill comes before the Seanad. The amendments which have been proposed are very reasonable and well researched and I would be happy to meet the delegates for further discussion.
In the present circumstances we must look at how to proceed in the most efficient way possible. We all accept that the ideal situation for the elderly is to live independently in their own homes. The next best option is to live at home with family support. After that comes support in the community from the Health Service Executive. I agree that equity across the country is important but services are better in some areas than in others. Another group of elderly people move into sheltered accommodation in the community, in special dwellings provided by local authorities. In this area we need a more integrated approach between the HSE and local authorities. There is a view that if people have a roof over their heads they are doing well in being prioritised over others who need a roof over their head but do not get one. It is important to look at each situation and ensure all the elderly are accommodated in the most appropriate way.
I agree with the proposed amendments to the provisions relating to residential accommodation but must enter a caveat. At a time when resources are scarce we can only spend the money we have and, unfortunately, we do not have the money we used to have. That causes a problem for everybody. Fortunately, 75% of the budget is spent on social welfare, health and education but when a Government needs to save money it cannot avoid looking for savings in these areas.
I was Minister for Health at a time when circumstances were similar to today's and tried to find the bulk of the necessary savings with greater efficiency. Against that background, does Age Action Ireland see any opportunities for improving the efficiency in the services currently provided, particularly in the area of costs related to residential accommodation?
The last time Age Action Ireland made a presentation to the committee, on the fair deal scheme, I made my views very clear. I felt people had been backed into a corner and that nothing else was available. It staggers me to hear people saying that, in these times of stringency, we do not have sufficient resources to provide for the elderly. The last time we heard about the fair deal scheme we had plenty but we were still talking about a shoddy scheme and service for the elderly. Therefore, Age Action Ireland should not take much notice of that argument. The Government may not have them now but when it did have resources, it did not provide a great service.
I have serious worries about the submission on informed consent and how the private sector will react to the Bill. Will private hospitals spring up all over the place, as they did when private health insurers entered the market? Will there be the same grab for this business, because that is how it will be perceived? Can one buy the inpatient care service? That will happen, regardless of our reservations. Would it be a good idea to buy a service under the same arrangement as community care service?
It is outrageous that we treat people differently because they are over a certain age. This will cause problems in the future.
Mr. Eamon Timmins
To some degree, the argument about treating people differently has passed because the Bill has been published and we are trying to concentrate on correcting some of the problems in it. A geriatrician in Cork, Cillian Twomey, gave a conference a good example of how people were treated differently under the Bill. He described two cousins, one aged 75 years and the other 45. The younger man has a massive heart attack and is rushed to the university hospital to undergo expensive heart surgery. When he is on the table, his liver fails and he is given a new one. He is checked afterwards and it is found that he is riddled with cancer. He undergoes chemotherapy. A year later he walks out of the hospital and faces the standard charge of €600 or €700 as a public patient or there is no charge if he dies. During the year he is sick he does not realise his 75 year old cousin has a massive stroke and is hospitalised, stabilised and transferred to a nursing home. Under the fair deal, he will pay 80% of his disposable income towards the cost of his bed, 5% each year of his non-cash assets and up to 15% of the value of his home after his death. Both men receive essential health services but are treated in very different ways.
The scheme does not treat older people equally, although it is called the fair deal. For example, Mr. A and Mr. B live adjacent to one another in local authority houses. Mr. A, due to poor health, has never worked a day in his life, while Mr. B has worked hard in a menial job and managed to save enough to buy back his home under the tenant purchase scheme. At the age of 80 years they both develop dementia and are in adjacent beds in the same nursing home. Under the fair deal, Mr. A will pay 80% of his non-contributory pension, while Mr. B will pay 80% of his contributory pension. They pay more or less the same while they are still alive. The exception is that when Mr. B dies, he will lose 15% of the value of his home. There is a different approach to treating what are deemed to be older people's illnesses, about which we are concerned.
Mr. Robin Webster
We are concerned about ageism in policy and practice and want to challenge this. We are also concerned about the piecemeal approach to the provision of stepdown facilities. The fair deal should fit in beside a range of other measures, particularly community care. The mental capacity scheme is much sounder than the provisions for dealing with people lacking capacity in this scheme. We need to bring together a range of measures to provide a plan, strategy and programme for an ageing population. A point was made about increasing pressure but we are an increasingly aging population for which we need to make provision.
Much greater co-ordination is one of the issues and we strongly support Deputy O'Hanlon's view on the co-ordination of the health, local authority and educational services. So often it is a combination of appropriate accommodation and care and one without the other is inappropriate. We must think much more carefully about that. There are many other models where care and accommodation are provided, such as retirement villages, and we should explore that approach. It is critical that behind the fair deal Bill people have the same access to services. We cannot dispute that this is critically important but we need another fairer funding arrangement for everybody which does not distinguish between groups of older people, as Mr. Timmins said, or people of different ages. We have a long way to go but this is the time to begin planning for those developments over a longer term.
Deputy O'Hanlon mentioned greater co-operation. We need to work much more closely together and provide more services. Part of our job would be to encourage every Department and agency to think about the implications of an ageing population on its services, and not to leave it to the Department of Health and Children or the HSE. It is an issue for all of us, and it is very important. The other important matter is to encourage families, as we often do, to care much more positively and with much more support for older people. That is why we very much regret the non-publication of the carers' strategy. That is another critically important plank in the larger scheme.
Deputy Kathleen Lynch mentioned the private sector. We have no clear views on the interrelationship between the public and private mix in a range of services. The base document for the fair deal referred much more to community care rather than residential care, so if another range of charges of different levels is introduced we would be concerned that they are fair across the board and do not discriminate against the most vulnerable people.
Has the delegation much evidence of geographical inequalities? We all know there are problems in community care services and this is being affected by cutbacks. Is the delegation coming across much geographical difference in numbers of elderly people who go into residential care because the community care services are not there? The committee heard evidence from social workers before on home care packages. Is that still a very significant problem?
Did the delegation examine the impact of planning permission rules in the different local authorities regarding care of the elderly? Local authorities should take a positive approach to ensure families can build homes beside their elderly members. Some local authorities have all sorts of regulations that prevent that. Where children want to build homes beside their elderly parents or relatives, this is probably the best way of supporting the elderly. Has Age Action Ireland ever looked at that or ever made any recommendations on how that might be addressed?
Notwithstanding the reservations in principle you have expressed about the Bill, would you expect this to represent an advance on the position that has been in place for a number of years?
Mr. Robin Webster
Without a doubt. One of the arguments we would say is simply that it is better than what it was before. If one recalls the Minister for Health and Children's description of the present situation, which I will not repeat but which was far from flattering, we need to be more ambitious, certainly because of the increasing number of older people.
If we can be clear about the services, one of the aspects about which we would be particularly concerned if we are speaking about residential care, is that older people and their carers ought to know what that means. One of our concerns is it does not mean different things in different areas, but in different nursing homes.
One of our concerns was the non-inclusion of various therapies and that this would take rehabilitation out of the entire process of long-term care so that it is seen as an extra as opposed to an essential. We argue that if we are to be positive about the aging process, rehabilitation must be part of it. Otherwise we are consigning people to a slow painful death and not suggesting there is any hope. That is not the way to approach general services. This applies to everybody in this room. We all have a vested interest in this. We need more ambition about how we care for older people. We also need more recognition that older people can make decisions for themselves. We need to build that into our procedures and that is the point we are making.
Are you happy you have covered the points made by Senator Fitzgerald and Deputy O'Hanlon?
What about Mr. Webster's experience of the geographical inequity?
Mr. Robin Webster
It is getting worse. We are not impugning people's motives. With reduced resources, if everybody has not reached a standard or acceptable level, then those areas that are below standard will not get additional help to get to a basic level. The Government placed much emphasise on home care packages and we showed, through the Irish Association of Social Workers, that the provision was so patchy. Since then we have heard of withdrawals of home care packages. It is getting more difficult. That would not be surprising, given the economic outlook.
What about Deputy O'Hanlon's point about local planning processes?
Mr. Robin Webster
That is important. We need to look at the range of imaginative ways in which we might help people and at all the flaws and delays in the housing aid schemes, for example. In our field, the notion is one of aging in place, namely, that older people want to age in their own place. We need to provide a range of imaginative ways, some of which are not expensive, certainly to the State, to allow older people to stay in place, not to be forced to go into nursing homes. After all, that has been Government policy since 1969 under the Care of the Aged report, and it is time we implemented that.
I apologise that I had to leave for a radio interview. This is an important issue which is coming before the committee on two days. I listened upstairs to some of the points Mr. Webster made. I refer to the HIQA standards that have been introduced. What is Mr. Webster's view of the €190 charge per bed per annum? Has he had time to consider it?
Mr. Robin Webster
It was announced yesterday without any consultation. Clearly that shocked all private nursing home owners. There was no consultation and no proper explanation. Our concern is about the impact of the cost to older people and their families. We do not know what that would be. I understand why the Government wants to make this a self-financing provision, which is the intention, given the present economic circumstances.
I ask Mr. Webster's forgiveness, but the Minister is on her feet in the Chamber speaking on this very point and I need to be opposite her.
I want to bring up the point as to the possibility of rehabilitation not playing a part any more. It is not clear from the Bill what services are included in the costings. That is a really serious point which I will certainly try to tease out when we have further discussion. The possibility that people in nursing homes will have 15% of the value of their homes taken and contribute 80% of their pensions but not get any of the services they need for quality of life, such as, rehabilitation, physiotherapy, occupational therapy and so on paints an awful scenario. That needs to be teased out further.
We will explore that directly with the Minister on Thursday. I thank Age Action Ireland Limited for its presentation and look forward to meeting again in the future. We will engage with the Minister at length on Committee Stage of the Bill on Thursday and possibly thereafter and take into account the points raised.
The joint committee adjourned at 5.05 p.m. until 2.30 p.m. on Tuesday, 24 March 2009.