I welcome a new member of the committee, Deputy O'Connor, who has been appointed to replace the new Minister of State, Deputy Batt O'Keeffe.
Report of the Post Polio Support Group: Presentation.
I also welcome the Deputy, on condition that we will not hear about Tallaght Hospital only.
I take this opportunity to welcome Mr. Michael Kelly, Secretary General of the Department of Health and Children, Mr. Tom Rooney, Deputy Secretary General, Mr. Brendan Ingoldsby, principal officer, and Dr. Eileen Connolly, deputy chief medical officer. I invite Mr. Kelly to outline the Department's response to the recommendations contained in the report by the Post Polio Support Group.
Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the House or an official by name or in any way so as to make him or her identifiable.
I take this opportunity to also welcome to the Visitors Gallery representatives of the Post Polio Support Group.
I welcome this opportunity to address the Joint Committee on Health and Children on the subject of poliomyelitis and its long-term effects. I do not need to detail the history of this illness in Ireland because the committee has already been addressed by Mr. Jim Costello and Ms Joan Bradley, who outlined the results of research into late-effect polio and their personal knowledge of how this illness crept up on them again. For those who battled so hard as young children against this illness, it is a cruel blow to be faced again with the debilitating effects of polio.
I note that the Post Polio Support Group has tried to estimate the number of polio survivors who have developed LEP, otherwise known as post polio syndrome. As the committee may be aware, the Department of Health and Children, with the Health Research Board, is currently developing a database of people with physical and sensory disabilities. While this database is not yet complete, almost 20,000 people with physical and sensory disabilities are currently identified as requiring a specialised health service arising from their disability. Some 219 of these people with disabilities have identified polio as the diagnosis that has led to their need for a health service.
I note that the committee has been informed that the current membership of the PPSG stands at around 500. However, it should be noted that the National Physical and Sensory Disability Database includes people with disabilities who are between 18 and 65 and, therefore, would not include members over that age. Furthermore, the diagnosis of the syndrome is only now becoming prevalent, possibly due to the support group's success in raising awareness of the issue, especially for GPs. While the count in terms of numbers may be somewhat different, it does not detract from the significance of the needs of this particular group. We are measuring this in a formal way, just as we are trying to do with other forms of physical and sensory disability.
Information received from the National Physical and Sensory Disability Database indicates that more than 50 individuals with post polio syndrome are currently receiving physiotherapy services, more than 50 are receiving occupational therapy, a similar figure are receiving a chiropody service and more than 60 are getting the use of an orthotist-prosthesist. Other services that are currently provided to post polio sufferers include the use of nutritionists, public health nurses, social workers, complementary therapy, counsellors and community resource workers. However, I acknowledge that the database indicates a volume of unmet need in all the above-mentioned headings. I can also confirm that there is a specialist clinic at present in operation in Beaumont Hospital, led by a consultant neurologist who has undertaken a specialist course in the topic.
I would like to refer to funding for the disability services. Since 1997, the Department has invested an additional sum of approximately €600 million, including capital and revenue for services for people with disabilities. Approximately €200 million of this extra funding has gone towards physical and sensory disability services. While this investment has been very significant, the Department is acutely aware that there are many unmet needs remaining.
The committee will be aware of the Government's recent announcement of a major disability strategy, in association with the publication of the disability Bill. The Department has published an outline sectoral plan. The philosophy which underpins the planning and delivery of services for people with disabilities is to give people with disabilities the opportunity to live as full a life as possible and to live with their families and as part of their local communities for as long as possible. In line with this philosophy, one objective of the sectoral plan is to provide access to appropriate health and personal social services for people with disabilities.
In a recent announcement, members of the Government reiterated their commitment to people with disabilities. The Minister for Finance indicated in recent days that he will come forward in the budget with a full picture on the multi-annual programme to improve the position of people with disabilities. In the more immediate future, it is likely that the Tánaiste will be in a position to make an announcement as early as tomorrow regarding a funding package for disability services in the Department's Estimates.
In recognition of the particular difficulties associated with the post polio syndrome, the Post Polio Support Group is in receipt of some statutory funding from the health boards, and since 2001 the group has received €422,000. At a national level, the Department has been conscious of the particular difficulties associated with the condition and has attempted to assist where it can, taking due account of the many competing demands for resources in the disability area. Recently, the Department of Health and Children made ongoing funding of €300,000 available to the Post Polio Support Group through the Eastern Regional Health Authority to address particularly the aids and appliances and therapy needs of their members. I understand the group already has arrangements in place to provide therapy services, aids and appliances and psychological support to its members. This additional funding should make a significant difference to the level of service provided. The group has expressed its appreciation for this assistance.
I have already referred to the physical and sensory disability database. Once this database has been completed, it should provide us with hard information on the gap in provision and an overall quantification of need for various services. The existing database for intellectual disability has proved to be an exceptional planning tool in terms of identifying the factual situation regarding waiting lists and numbers in need of services. Because of its acknowledged accuracy and reliability, it has been a significant influence on the rapid acceleration of extra funding for the intellectual disability services. On the physical and sensory side, the database has not yet reached a stage where a full national picture can be provided. It is estimated that the database should capture approximately 32,000 people in need of services, once they have been registered. To date, the figure registered is approaching 20,000. Even with this limited information, the Health Research Board is now preparing to publish an initial report which, I am assured, will be useful in estimating requirements for planning and funding purposes. We should have this report early in the new year, so that it can be a useful input to the planning and funding process.
I referred earlier to the forthcoming multi-annual funding package. I am confident that this will provide additional relief for individuals with post polio syndrome in relevant areas of service, such as therapy services and aids and appliances. The recent report of the Post Polio Support Group on LEP, and the website it operates, has given the organisation a worldwide platform to highlight the issue of LEP. The Department of Health and Children wishes to acknowledge the efforts of the organisation in this regard and the task it has taken on in supporting its members over so many years.
I reiterate that the Department of Health and Children is committed to acting in partnership with the voluntary sector in the continued development and enhancement of services for people with disabilities. In a recent letter to the Department, and in the recommendations of their report on LEP, the PPSG raised specific concerns which I wish to address. The first concern relates to medical cards. I will not restate the current guidelines for the issuing of medical cards as I am sure members of the committee are well aware of them. However, the Government is fully committed to the extension of medical card coverage as set out in the health strategy. This will focus on people on low incomes. The timing of the introduction of the extension will be decided having regard to the prevailing budgetary position.
Furthermore the health strategy includes a whole series of initiatives to clarify and expand the existing arrangements for eligibility for health services, including recommendations arising from the review of the medical card scheme carried out by the health board CEOs under the Programme for Prosperity and Fairness. These include streamlining applications and improving the standardisation of the medical card process, providing clearer information to people about how and where to apply for medical cards and pro-actively seeking out those who should have medical cards to ensure they have access to the services available. The Tánaiste and Minister for Health and Children is committed to the preparation of new legislation to update and codify the whole legal framework for eligibility and entitlements in regard to health services.
The second issue relates to the long-term illness scheme. The long-term illness listing has not been amended since 1975. It is a matter of record and a position succeeding Ministers have taken that there are no plans to add any further illnesses to the list. The imminent introduction of additional targeted funding for disability services should reduce the significance of post polio's inclusion or exclusion from the long-term illness list. The thrust of what we are endeavouring to do here is to improve generally access to the services identified as being relevant to this particular group, rather than making it depend on the possession of one or other type of card. However, the Department of Health and Children is aware of the difficulties for people with disabilities who are ineligible for a medical card on the basis of income but are faced with expenses that relate to their disability.
The Department is particularly conscious of the difficulties for people with disabilities vis-à-vis employment and the loss of eligibility for a medical card. The working group on the feasibility of introducing a cost of disability payment, which is operating under the aegis of the Department of Health and Children, in its position paper of March 2004 stated:
In line with the recommendations contained in the Indecon report and the report of the Commission on the Status of People with Disabilities, the working group considers that there are a number of existing supports which go some way towards meeting the additional costs of disability. The group considers that there is considerable scope for rationalising and streamlining these existing support measures, particularly in terms of mitigating the additional costs of disability for a greater number of people with disabilities and removing disincentives to move from welfare dependency to employment.
The report further stated:
The working group acknowledges that a number of Government Departments and agencies have previously carried out reviews of the various supports/payments for people with disabilities. However, these reviews have tended to focus solely on the operation of individual schemes, without taking a broader overview of how these measures fit into the overall system of disability supports. The working group proposes to examine the scope for rationalising and streamlining the various disability support measures, with a particular focus on mitigating the additional costs of disability for a greater number of people with disabilities, particularly in the case of those who wish to move from a position of total welfare dependence to one of greater economic independence.
The working group has commenced this examination and the first topic it is looking at is that of the medical card and the benefits trap. However, in recent discussions with the Department, the Post Polio Support Group has highlighted the fact that a major benefit of the medical card for its members is access to aids and appliances. I can assure the committee that the Department of Health and Children is acutely aware of the currently unmet needs for aids and appliances of people with disabilities. Since 1998 the Department of Health and Children has allocated over €38 million to tackle this problem. We will continue to address this issue as resources permit and, as I mentioned earlier, the recent provision of additional funds to the group should help to make considerable inroads into the particular needs of their members in this respect.
The Department is currently conducting a strategic review of services and the aids and appliances system will be examined in the course of this review. There have been some innovative developments in the operation of the aids and appliances service in various health boards, with the Mid-Western Health Board successfully piloting an aids and appliances tracking and recycling project in County Clare which led to a 20% saving — or efficiency gain — on aids and appliances in its first year of operation. The Mid-Western Health Board is currently rolling out this project across the health board area and the Department will monitor this system's effectiveness as it progresses in the urban setting.
I hope that the strategic review will assist in highlighting best practice in the health boards for aids and appliances, particularly in the area of access to the service, tracking and recycling, responsiveness of the system and opportunities for savings through bulk purchasing. The survey carried out by the Post Polio Support Group will be examined as part of the Department's strategic review. The point of improving efficiency of spending is that greater impact can be achieved with a given level of funding.
In its submission to the committee the Post Polio Support Group has called for the establishment of multidisciplinary centres for the diagnosis, management, and treatment of late effect polio at various hospitals. The Department recognises the need to augment the professional medical expertise available to the people with post polio syndrome. The Department will pursue a resolution of this issue as resources permit and in the context of the development of services in the acute hospitals.
The Post Polio Support Group report also asks that such centres of excellence should contain an adviser from the support group, funded by the statutory authorities, to advise on the rights and entitlements to benefits or allowances. While recognising the role of the Post Polio Support Group in providing advice for its members I believe that Comhairle, the national agency responsible for supporting the provision of information, advice and advocacy on social services, also has a role to play here.
The Post Polio Support Group also raised the topic of the age limit on mobility allowance. The Department is aware of the concern surrounding the inequity of the age limit on mobility allowance. However, it is felt that it is not in the best interest of the client group to give entitlement to mobility allowance to all over 65 when it is obvious that the transport infrastructure, especially in rural areas, does not exist to facilitate "the occasional taxi journey" as referred to in the current circular. The working group on the feasibility of introducing a cost of disability payment, as I previously referred to, "proposes to examine the scope for rationalising and streamlining the various disability support measures, with a particular focus on mitigating the additional costs of disability for a greater number of people with disabilities". The working group highlighted that the Commission on the Status of People with Disabilities in its 1996 report, A Strategy for Equality, stated that people with disabilities have "significant extra costs". The commission grouped these additional costs under five headings: equipment; mobility and communications; living costs; medical expenses; and care and assistance.
The working group intends to examine rationalisation of benefits and allowances under the above headings. Under transport, this interdepartmental working group will examine schemes such as the motorised transport grant, mobility allowance, the disabled driver's and disabled passenger's scheme and the free travel scheme, with a view to producing an equitable transport policy for all people with disabilities.
In summary, the Department acknowledges the work being conducted by the Post Polio Support Group. We are anxious to ensure that its efforts are funded where possible and this is evidenced by the funding package which was recently provided to assist the group in its work. Overall, I think there are grounds for optimism given the Government's commitment to significant additional investment in services for people with a disability.
I welcome the delegation and I thank Mr. Kelly and his team.
Does Mr. Kelly accept that what he says about the medical card is a fudge? The medical card could quite easily be made available to these people, who are very deserving and whose presentation we have heard. It is not necessary to go around the houses as he seems to do in his presentation. Does he agree that the funding they require, amounting to €4.8 million over five years, is quite a modest proposal in the overall scheme of things? We should grant the money and not fudge the issue.
Polio should be included in the Department's long-term illness list. The evidence for this is incontrovertible. Can Mr. Kelly say this will happen?
Those are the three points the Post Polio Support Group has made to Members. I would like Mr. Kelly to clarify the medical card question in particular. He has spoken about aids and appliance and about the recycling scheme in County Clare. These are all very laudable but they do not address the central issue.
I welcome the delegation. I was not present at the last meeting. The problems raised today appear to stem from under-resourcing and the piecemeal delivery of services we have seen until this point. I hope that philosophy will change tomorrow.
Opposition Deputies are often asked if they have costed their proposals. Mr. Kelly says the cost of providing medical cards is being reviewed by the CEOs of the health boards. For a number of years there has been no movement whatsoever on the issue of entitlement to medical cards. Where does the Department of Health and Children stand on this issue? We may be informed tomorrow. Medical cards are a vital part of providing medical cover and many appliances and services become available to medical card holders. A medical card is vital to a person on a low income. I am surprised the Department has not fast-tracked this.
The presentation mentioned neurological services and how they would deliver. Unfortunately, our meeting with the Tánaiste and Minister for Health, Deputy Harney, was postponed. However, the Department must have a fair idea of what is happening in the case of neurological services because it would have drawn up a report for the previous Minister, Deputy Martin, who was to have come to this committee to discuss those services.
Neurological services in Ireland are disastrous. There is no service in the south-east and the availability of the service in Beaumont Hospital is extremely poor. Patients can have to wait three years to be seen, yet the Secretary General is talking about the establishment of a specialised clinic and trained consultant. What is the timescale before we see this consultant? This is a serious issue. It is all very well to wrap these proposals in the right terminology and language and present them here. However, it is extremely difficult for the public to access neurological services. How dedicated and how accessible will the service be when it is up and running?
The proposals regarding long-term illness are aspirational but low on delivery. The Department says that the long-term disability illness list does not need to be extended because of the significant multi-annual budget to be announced tomorrow. We have heard this too often. In the short term the long-term illness scheme is vital. It reduces costs for those who cannot get a medical card or access the treatment they may need. Why can the list not be extended? I would not like to be depending on a significantly increased budget for disability services.
The Secretary General has already pointed out the significant numbers involved, perhaps up to 30,000. He says that until we get the final figure there will not be an improvement in the services. Again we can see the prospect of improvement move too far into the future to make a difference. Many of the issues discussed at this committee have already been carried over from last year and before.
A spend of €38 million was mentioned for aids and appliances. This works out at approximately €6 million per year since 1998. What and whom does this money cover? Does it cover everything? Does it cover health boards? What aids and appliances are we talking about? Does the money cover disability grants through local authorities, etc.? How specific is the €38 million?
Allowances for motorised transport and similar issues were mentioned. The Joint Committee on Finance and the Public Service, on which I sat before joining this committee, asked for a report on disabled driver's allowance for cars. The Department held that report for five years before the Minister was forced to publish it. The then Minister of Finance, Deputy McCreevy, made it clear that he had no intention of expanding the scheme. People are looking forward to a better quality of life because of what they have been told, but there is not necessarily a follow through on the promises when they seek the services.
Much has been said here today that gives the impression things are going well, but they are not. I see no change in disabled driver's allowance, in the long-term illness scheme or in neurological services, despite what may be announced tomorrow. Matters may be different tomorrow in the case of medical cards. It is about time the Minister responded on the medical card issue as 100,000 were taken away from people.
The grant of €300,000 for psychological and other services to the Post Polio Support Group is not particularly satisfactory, no matter how we look at it. Will the Department clarify that this money will be spent specifically on these services and that it will not get sucked into the budget of the Eastern Regional Health Authority where its spending will disappear in a fog of reports?
I welcome the Secretary General and the other members of the delegation. That they are here underlines the importance the committee places on this issue. Following the presentation made by the Post Polio Support Group, every member of the committee felt the issue must be prioritised. That is why we are here today.
Suffering, in particular that resulting from late effects of polio, is such that I hope every effort will be made to meet the simple and basic requirements set out by the support group. I am somewhat disappointed by the response of the Secretary General, although I welcome the money allocated. Were costings made with regard to the requests re medical cards and long-term illness for this small group of people? Compared to our population the number is small. If costings were made, what are they? I suspect the amount of money involved would be small relative to the billions spent on health.
I appreciate the difficulty involved in extending the medical card scheme, having seen the experience of the extension to the over 70 year olds, where a particular group was targeted. However, would it not be possible, considering the small numbers involved, for a guideline, regulation or instruction on the matter to be given to the people with discretion within the health board structure? Is it not possible to issue a directive saying that post polio is such a condition that they should, within the area of discretion, ensure it is met with a medical card? This would be a practical and convenient way to deal with the issue. I find it difficult to believe that post polio cannot be included on the long-term illness scheme. This is incomprehensible. I would like to hear more on the costs.
The group asked for a multi-annual budget. It makes a lot of sense to use that approach. The sum requested — €4.8 million — is hardly large. Surely the Department should encourage this kind of planned approach, in particular when aids and appliances are required. I note that recycling has been suggested and that seems eminently sensible.
It would be helpful for people to be able to plan services and requirements rather than have to depend on money being provided as if by magic, just as it was before the Department presentation. I am sure there is no connection, but the lack of certainty of funding does seem to make it difficult for the group to operate.
The group made the point that the cost of aids and appliances is higher here than in Britain. Will the Department comment on that? Again and again in the health sector we come across issues of cost that are not easily explained, in particular in the area of drugs and medication. Aids and appliances are straightforward requirements, not services, yet there is a significant disparity in costs. Why is there such a disparity?
I shall ask my colleagues to come in on the responses, but I will make the initial response.
It would be a mistake to underestimate the significance of the change that is coming through in terms of services for people with a disability right across the board. Members of the committee may say they heard this before. I certainly have not witnessed the rigour which is supposed to exist in the proposed disability legislation. The extent of its commitment has already been expressed by Government in respect of following through on that legislation.
In the case of health and personal social services, we put huge store on objective assessment of the needs of individuals with a disability. Various processes are set out in the legislation for ensuring that those needs are addressed in a concrete way. I have had personal experience in a previous role of leading in the section in the Department dealing with services for people with a disability. I worked with a multi-annual commitment which delivered measured improvements in service in respect of people both with an intellectual disability and physical and sensory disability. I know this process can work and can be made to deliver identifiable results. My own understanding of what is intended is that there will be seen to be a very significant powering up of the level of investment. In the case of services, there will need to be significant powering up in the organisation in terms of responding to the measurement of need and the provision of services to address those needs.
My point is that this disability package is a watershed in terms of Government commitment. I cannot say what the extent will be in 2005 and what will emerge from the budget but the Department is planning for very significant enhancement in that regard. Taken in a multi-annual context, it will change the landscape in terms of the capability of the health system. The Department of Health and Children, and others involved, earnestly desire to be in a position to concretely address the genuine needs of all people with a disability and all sorts of other groups which come to the service with their needs. That is the business of the Department and that is what it wants to do. We believe the legislation and the investment package that goes with it will put the Department in a better position. It will enable the Department to change the landscape over a period of years. I am not trying to lose this issue in the overall landscape but the opportunities for addressing the needs of particular groups are greatly improved because there is such focus in the whole approach being adopted on the objective identification of the needs of individuals and then addressing them.
A general point was made about reluctance to move in any radical way on overall medical card coverage. I can only repeat the Government's own commitment and in particular the Tánaiste's very direct interest in moving on the issue of medical card coverage. I will not pre-empt developments that may or may not materialise in the near short term other than to say that extension of coverage is one of the ways in which groups who are currently at the margin can be accommodated within medical card coverage.
As a matter of consistent policy going back to 1975, successive Ministers for Health have been reluctant to reopen the list for the long-term illness scheme. While I would empathise totally with the Post Polio Support Group and with many other groups in respect of their particular needs in this context, those of us involved in public policy on this issue cannot single out one particular group and say that group has a call above and beyond anything else, in the context where one does not need to consider the interests of any other groups. I can understand totally the argument made by members of the committee in support of that point but I cannot isolate one particular group and argue that one group pre-eminently, above and beyond any other group, deserves this particular attention and there is no need to worry about what the consequences are for anybody else.
My position as the accountable person in the Department of Health and Children is to achieve the best distribution of moneys voted by the Oireachtas over all the demands for service and the genuine needs of people. The Department does its best to do that. It is dependent on local assessment of need. Sitting in my ivory tower in Hawkins House I cannot be the person to determine which group has a better case than all the other groups. The process through which we work depends on objective assessment of need at local level. We aim for the best possible spread within the budgets assigned and the best spread of decent services for people with a genuine need. I acknowledge that there are identified weaknesses, to which the Department has referred in the response. These relate not just to people with a physical and sensory disability and not just to this group, but I acknowledge that I have been influenced by the case made by the group to the committee. I have read the documentation. In the short term the Department has tried to make some gesture. While Deputy McManus may question my motives, nonetheless——
I am sure they are always wonderful. I would never do that.
——the Department has managed to make a gesture within a tight financial position. This is an indication that the Department has learnt a lot from the earlier session at the committee and from reading the reports. We will try to improve the response as we go along.
I will ask Mr. Tom Rooney to comment on the question of singling out particular groups for medical card eligibility and I will ask Mr. Brendan Ingoldsby to talk about the cost issue concerning drugs and appliances.
Will the Department also include the question raised by Deputy McManus about the cost of providing long-term illness or medical card cover for each of the groups, particularly this group?
Mr. Tom Rooney
The Secretary General has dealt with the medical card issue in a broad sense so I will not repeat it. Deputies McManus, Twomey and Gormley asked specific questions about medical cards which I will address. Deputy McManus asked why we could not just write to chief executive officers of the health boards and tell them to give medical cards to people with the late polio syndrome. The Department cannot do so because the legislation does not allow it. The only category of people covered by a medical card as of right are the over 70s and an amendment to the Act was required in order to include them. Unless there were to be an amendment to the Health Act 1970 the Department could not do what the Deputy has suggested.
The general hardship provision is for use at the discretion of CEOs. I do not know to what extent that has been used. From what Deputy Twomey said, it seems it has not been used as much as one would like. I do not know to what extent it is utilised. The Department can only operate within the law and the statutory framework as we find it and governed by the financial constraints.
There is quite a substantial discrepancy among the various health boards in the amount of medical cards being allocated at the discretion of chief executive officers.
Mr. Rooney
Yes. That is true, anecdotally, but the Department has not been able to pin it down when it has tried to examine the matter. For obvious reasons, the number of discretionary medical cards being allocated is greatest in areas in which the general allocation of medical cards is tightest. It may well relate to the policies being pursued by CEOs, local management teams or whoever does the assessments. It also relates to location, age and economic factors such as employment levels, however.
The Secretary General has spoken about the long-term illness scheme. I will outline the basic history of the scheme, based on my examination of some of the Department's files on it. It was introduced in the late 1960s, specifically to deal with a diabetes problem at the time. Under the scheme, people are entitled to drugs and medicines which are specific to their long-term condition. If a person who is benefiting from the scheme gets the flu, for example, he or she is not entitled to antibiotics and instead has to pay for the medicine in question in the same way as anybody else.
The general medical service scheme, which was established in the early 1970s, was followed in the mid-1970s by the first of the drugs schemes, the modern version of which is the current drugs payment scheme. The list that is currently in place was also there in the 1970s. I think the first of the drugs schemes was introduced in 1975. I cannot find more information on it, but the long-term illness scheme was stopped at that time. It seems the long-term scheme was scrapped when the drugs scheme was established. A decision must have been taken at the time to allow those who were benefiting from the scheme to continue to benefit from it. They were left untouched.
The scheme does not always do all the things people would like it to do. When the Department's drugs expenditure is examined, it is invariably recommended that it should be abolished because it is something of an anachronism. Currently, everybody is entitled to drugs and medicines with a co-payment of €78 per month. Those on the long-term illness scheme, who may suffer from many conditions, frequently pass the threshold on other drugs anyway. The long-term illness scheme is of no benefit to such people because they would have received the drugs and medicines free of charge in any event.
Did Mr. Rooney say the abolition of the long-term illness scheme has frequently been recommended?
Mr. Rooney
Yes. In 1975, the scheme was overtaken by the introduction of the first of the drugs schemes, which have been through several mutations. We now have the drugs payment scheme. One is entitled, under the long-term illness scheme, to drugs and medicines for the specific treatment of one's specific condition. I understand there are no specific medicines or drugs to treat the condition about which we are speaking. That would probably be a difficulty anyway. The people in question, many of whom suffer from several conditions, may pass the threshold if they have to buy other drugs. The long-term illness scheme would be of no benefit to them in such circumstances. I do not wish to dismiss it on that basis, but to explain the history of the scheme. It was introduced when there were no other schemes to assist people. The medical card scheme, which we have discussed, and the drugs refund scheme have been established since then. It seems that the long-term illness scheme was scrapped almost 30 years ago. That has been the policy position ever since.
Long-term illness has lost a certain amount of importance over the years because 38% of the population was entitled to hold a medical card, on income grounds alone, until 1997. The percentage of people entitled to a medical card on income grounds has dropped to 22%. Perhaps that is why the importance of long-term illness is again a factor. Patients have to pay €78 per month under the drugs scheme to which Mr. Rooney referred and it is possible that the figure will be increased. It is a significant cost to patients. Long-term illness may be reassuming a certain importance now that the percentage of patients who are entitled to medical cards on income grounds alone — I do not refer to all medical card recipients — has decreased to 22%.
Mr. Rooney
I take the Deputy's point.
Mr. Brendan Ingoldsby
Some €38 million has been allocated to the health boards over a number of years for additional aids and appliances for people with physical and sensory disabilities. The fund is separate from the scheme of assistance under the local authorities and the Department of the Environment, Heritage and Local Government. It is a separate scheme. The Post Polio Support Group has explained clearly to the Department of Health and Children the problems relating to the provision of aids and appliances. A substantial proportion of the €38 million fund was allocated on a one-off basis. It would be preferable if we could find some way of ensuring that there is an ongoing base. The Department is conscious that many aids and appliances need to be renewed quite frequently. The recent ongoing grant, which was distributed through the Eastern Regional Health Authority and the Post Polio Support Group, is part of a deliberate attempt to ensure the funding that is made available to members of the group for aids and appliances has an ongoing character.
I also asked about comparative costs.
Mr. Ingoldsby
The Post Polio Support Group mentioned the issue of pricing during its recent discussions with the Department. The Secretary General has mentioned that the Department is conducting a detailed strategic review of disability services under the health banner. We are anxious to explore the issue of pricing in conjunction with the health boards and their successors. The information we will receive from the Post Polio Support Group will be very helpful in that regard.
I cannot speak at length because I have to go to the Seanad to discuss a Bill.
Mr. Kelly mentioned that the working group will "examine the scope for rationalising and streamlining the various disability support measures" with a particular focus. He said "the working group has commenced this examination and the first topic it is looking at is that of the medical card and the benefits trap". I am aware, having been on a health board for a long time, that medical cards are related to income and that the chief executive officers of the health boards have a certain discretion in that regard. As far as I know, a sympathetic view has always been taken of the cases of those with long-term illnesses, such as polio. I refer to illnesses which lead to an ongoing need for medical treatment and other forms of care.
Although I worked in the health service for many years, I do not know of anybody who has recovered from polio. Does anybody at this meeting know of such a recovery? I do not think there has been such a case, although perhaps I am wrong. I would love to think that it is possible. That it is not possible to recover suggests that members of the Post Polio Support Group should qualify for medical cards on the grounds of long-term illness. It is axiomatic that they should qualify — it is as simple as that. There should not be any more argument about it.
I am familiar with the various rules and regulations in this regard. Those represented by the Post Polio Support Group have been assailed by a particular malaise that they have to endure for the rest of their natural lives. We can talk until the crows come home about what is being done and what is not being done — I accept that a great deal has been done. Is there a deadline by which the working group has to report on its deliberations?
Mr. Kelly has told the committee that the Department of Health and Children "recognises the need to augment the professional medical expertise available to the people with post-polio syndrome" and that it "will pursue a resolution to this issue". How much progress has been made in that regard?
I will conclude because all the other points I wanted to make have been made. Has a set of measures been put in place to assist members of the group who suffer from social isolation?
I thank Mr. Kelly and his group for attending the committee. In the course of his presentation, Mr. Kelly referred to the physical and sensory disability database which is being compiled. While I welcome the creation of the database, as with all databases it will take time before it is fully operational. The Post Polio Support Group has already done a great deal of the donkey work in the preparation of the excellent report, The Late Effects Reality. The group must be congratulated for taking the initiative to produce the report.
The committee is fully committed, having already met the group, to supporting it in achieving its three objectives of the supply of medical cards to those who suffer from late-effects polio, long-term disability benefit for all who have suffered from polio and the modest application of funding of €4.8 million over five years, which is less than €1 million per annum. The work has been done. Hopefully, the supporters group will not have to expand as the condition of polio should never again be experienced by an Irish person. The group is small, defined and has documented very well in its report the reasons for having its modest requests met.
The long-term disability scheme applies to people who have a listed disability or any disease which results from a disability covered by the scheme. When I was working as a medical practitioner, a very lenient view was taken of what conditions might have resulted from a disability. A considerable number of people on long-term disability benefit were able to access drugs for conditions for which they would otherwise have had to fork out €78 per month before qualifying under any other scheme. The sum of €78 per month is considerable for people who do not have a medical card.
I welcome the delegation whose members will, I hope, become regular visitors to the committee like the Tánaiste. It is a pity the witnesses will not be here on the day after tomorrow. They have the luxury of being able to cover themselves with hope in that the Estimates will be published tomorrow. As the Estimates must be confidential, we are holding this discussion in nebulous circumstances.
The committee asked the delegation to attend as the Post Polio Support Group had a strong impact on members. As other members have said, we are united in our determination and commitment to helping post polio sufferers. As the group of sufferers is small and the finances required are limited, we will remain determined to ensure they are looked after.
Page 8 of the script of Mr. Kelly's presentation says the Tánaiste and Minister for Health and Children is committed to the preparation of new legislation to update and codify the legal framework for eligibility and entitlements to health services. Mr. Kelly went on to say there are no plans to add further illnesses to the list for the long-term scheme which has not been amended since 1975. The Minister does not operate in isolation and I would like to think the collective wisdom of Mr. Kelly's Department and this committee would inform the office holder in making any decision on long-term illness. Certainly, the message on the long-term effects for post-polio sufferers was conveyed clearly to the committee. By any criteria, sufferers should be included in the long-term scheme.
Deputy Twomey made a fine point on the increasing importance of the long-term illness scheme, which is something we must consider. Will Mr. Kelly tell the committee how one qualifies and describe the conditions from which one must suffer to be included under the long-term scheme? From what Mr. Kelly has said, it appears the Minister will take this opportunity to include post-polio syndrome as a listed condition. By any stretch of the imagination, the long-term effects of polio should qualify one to benefit from the scheme.
Mr. Ingoldsby discussed the €38 million aids and appliances budget. Is this a limitless budget in the sense that one can apply for funds time and again? Mr. Ingoldsby said frequent renewal of aids and appliances is required. Does that mean someone who needs to replace equipment can reapply on an ongoing basis or is a limit imposed?
The committee has agreed that this matter is a priority and we must write before tomorrow to the Minister to ensure it is treated separately. The pity is that we are not dealing with the matter after tomorrow. To discuss it now provides Mr. Kelly with the cover of speaking about the generalisation of medical cards. While we all know the thresholds will change tomorrow, Mr. Kelly is not in a position to tell us anything about that today. While we respect that, the committee must drive home to the Minister the need to deal with the matter.
Deputy Flynn
I have some questions on Mr. Rooney's statement on medical cards. According to Mr. Rooney, the only group with an automatic entitlement to medical cards under legislation are those aged over 70. When Deputy McManus asked Mr. Rooney if one could write to the chief executive officer of a health board about a card she was told the legislation made no provision to allow one to do so. Surely, chief executive officers have guidelines on how to exercise discretion in allocating medical cards on other than income grounds. If they did not, there could be no equality across the boards whereby certain medical conditions would guarantee the issue of a discretionary medical card. Is it the case that inequality exists? If so, we must address it. If the Department issues guidelines to health board chief executive officers, it must be possible to include post-polio sufferers.
The survey on the late effects of polio shows that half of the respondents have a medical card anyway whether based on income or on the basis of another illness. The indicative number I was quoted of people suffering from post-polio syndrome was approximately 4,200. If we were to quantify the number of people with the syndrome but without a medical card, we might find the number was only approximately 2,000 nationally. It is a tiny number given that in the last five years in Mayo alone 8,500 fewer people were provided with a medical card this year than in 1997. Nationally, 100,000 fewer people have medical cards.
It is a terrible Government.
It is all about a change.
Deputy Flynn
It is a very scary figure. When I asked how people were being removed from the medical card system, the answer I received was even more alarming. I will not go into it just now.
We learned a great deal from Mr. Rooney about the long-term illness list. It appears the list is dormant. As it is not operational, whether post-polio sufferers meet the long-term illness criteria is absolutely irrelevant. They will not be added to the list anyway, nor will sufferers of any other unlisted illness. The list has gone because of the introduction of the drug scheme. It is a pity that was not explained to people with post-polio syndrome. According to page 28 of the Post Polio Support Group's report, polio is not recognised as a long-term illness as it is perceived as being a stable condition after the initial incidence. The truth is that the syndrome would not have been included on the list anyway. Although I disagree with the suspension of the long-term illness list, that clarifies matters in terms of dealing with the group.
The Post Polio Support Group seeks the provision of €4.8 million over a five year period. While we welcome the provision of an additional €300,000 as announced last week, I note the money has been made available to the Eastern Regional Health Authority. What money is being provided for people suffering from the syndrome in other health board areas?
The first question was on the timeframe for the working group. I will ask Mr. Ingoldsby to pick up on this point when I conclude, as he is involved with the working group.
I apologise for not responding to the point about neurological services. I cannot give a definite timeframe regarding improvements in hospital-based services generally. That is the position. There is an acknowledged weakness in neurological services in the hospital system. The pace at which we will be able to catch up with that particular weakness, other specialty weaknesses throughout the acute hospital system and the increase in bed capacity which is also part of the commitment in the health strategy, will depend on the rate at which additional investment can be applied to this in the coming years. I cannot predict that.
In more recent years the opportunities in regard to acute hospital services have centred on the expansion of bed capacity and we have achieved that. A series of recommendations exists in regard to neurology and other speciality areas and these remain to be addressed. I cannot give an accurate answer about the timeframe for doing that.
What we can do, in the context of funding for services for people with disabilities in 2005, is look to see if we can strengthen the service that already exists in Beaumont and see if we can do more with it in the short term.
On the issue of funding, I take the points made about the absolute determination of the committee and its commitment to support the needs of this group. My commitment to support the needs of this and other groups who are also in need of services is equally strong. My ability to do that year-on-year is determined by decisions made by Government and the Oireachtas in terms of funds voted for health, with which we do our best.
Our overall capacity to address services for people with disabilities will be enhanced in 2005 and the coming years, although I cannot yet say to what extent this will be the case. We could be more definitive if the meeting had taken place the day after tomorrow. I agree with Deputy Fiona O'Malley that this is the case, but the timing of the meeting was not determined by me. I am not trying to play games with the committee. I want to indicate to it the general thrust of what we seek to do. Our motivation is to address genuine need. That is the business we are in. In the near future I hope we will be able to do more than is currently the case in regard to medical card coverage and strengthening services for people with disabilities.
I take the point regarding qualification under the long-term illness scheme, LTI. In terms of the eligibility framework, obviously one tries to ensure access to services for those people who need it. That is what the whole dusting down of the eligibility legislation will be about. Quite honestly, there is a great deal of ambiguity in the current framework. The whole point of the commitment to a review of the legislation is to make clear what people are entitled to and, equally, to make clear what people are not entitled to and who is entitled to what. The aim is to produce a simpler and more streamlined framework. The current picture is not very satisfactory. We are anxious to get on with that once the reform programme legislation has gone through. It is a question of resources and time. I accept the point about the need for people with disabilities to be part of that.
A point was made about increases and decreases in the number of people covered by medical cards. If I can paraphrase, it was said that this particular group would not break the budget in terms of the reduction in numbers that has been achieved. That is a fair point to make, however the argument rests on the basis to which entitlement to a medical card is determined. On foot of the experience with the over-70s there has already been an extension of medical card coverage. There has been quite a great deal of public critical comment about the notion that particular groups would be awarded medical cards other than on a means tested basis. While I take the point and understand the motivation behind it, there are tricky issues around it. I would have thought the discretion that is currently available to CEOs, and is also available to authorised individuals within the new Health Services Executive should lead to more sympathetic treatment for a condition like post-polio syndrome. Under the legislation, that is strictly a matter for CEOs and those authorised by them to undertake assessments and make determinations on that.
Deputy Flynn
Did the Secretary General issue a specific guideline on that or is it left completely to the discretion of those involved?
The guidelines were developed by CEOs because statutorily it is a matter for them under the legislation to determine eligibility.
Deputy Flynn
Is it applied differently in different health board areas?
The area of individual discretion by its nature is not one that can be absolutely nailed down but in recent years attempts have been made by the CEOs as a group to bring greater uniformity to the process. There will always be an element of discretion which is rationally determined by individual CEOs because it is meant to address individual need and individual hardship in particular circumstances.
Deputy Flynn
An additional sum of €300,000 was made available to the Eastern Regional Health Authority but nothing was given to other health boards.
The sum of €300,000 was made available to the support group as a national grant. The Eastern Regional Health Authority was the channel for communication, but the use of the money was not confined to the eastern region.
Deputy Flynn
That is scary.
I wish to return to the point regarding long-term disability. Is it not the case that people who do not qualify for a medical card but who are considered eligible for a long-term disability payment would not be liable for the financial hardship of paying €78 per month for any drugs that might be applicable to their condition or any conditions arising thereof?
I will ask Mr. Tom Rooney to come in on this. I can see the point that the threshold for the drug payment scheme for people who are outside medical card coverage is €78. If we rely on that as the method of providing assistance to people with post-polio syndrome it does involve a payment of €78 where they are outside medical card coverage. That is in a context where their needs are assessed at local level and that is the conclusion to that process.
We envisage an objective assessment, under the new legislation, of all the needs of persons with a disability and a response thereto by the health system. I do not know whether this will shift the old position on drug costs but there is certainly an opportunity to consider the matter differently.
Mr. Rooney
The Deputy hinted at the answer. Effectively the scheme was stopped in 1975 when the drugs refund scheme was introduced. At that time, 15 or 16 conditions were listed. I apologise for not having the list. It seems that a parallel decision was taken at the time that any conditions already listed would stay on the list, that no others would be added to the list and that other conditions would be dealt with through the drugs refund scheme.
The Deputy made a point on drugs and medicines, on which I would prefer not to elaborate because the Secretary General is sometimes at this forum with his Accounting Officer. I suppose discretion is being exercised regarding some issues but this may have been easier when accountability regulations may not have been as absolutely watertight as they are now.
It is a question of drugs and medicines specifically for the condition in question. Very often, the measure is of no use at all to the patient because if he incurs expenditure on certain drugs he will have reached the threshold in any case. He would have got the drugs he is getting under the long-term illness scheme in any event. Hence, we have had various recommendations from various groups that the scheme should be abolished completely. We have retained it for listed conditions.
In case the impression is generated that the scheme is frozen, one should note that those who are currently covered by the scheme value the associated booklet very much. It is a great source of relief to them that they have it and that they can get their drugs. In this regard, consider the example of a polio survivor who is unfortunate enough to develop pneumonia. It could be argued that it is hypostatic pneumonia, for example, thereby allowing for the inclusion of the cost of the relevant drugs under the scheme. I am not suggesting for one minute that people would include drugs that are not directly related to the condition to which the booklet applies. The scheme is very valuable and we should certainly consider having post-polio syndrome included as a condition.
When was the review of the medical card scheme carried out by the health board CEOs?
Mr. Rooney
It was carried out a number of years ago. The report considered streamlining and standardising the different procedures across the board. With the introduction of the HSE, the exercise is redundant. Those compiling the report also tried to analyse various income distributions to determine the effect of shifts in income guidelines on numbers.
Deputy Flynn
That is not correct. Is Mr. Rooney referring to the Deloitte & Touche report into the GMS?
The statement says the health strategy included a series of initiatives that clarified and expanded the existing arrangements for eligibility for health services, including recommendations arising from the review of the medical cards scheme carried out by the health board CEOs under the Programme for Prosperity and Fairness. When was that carried out?
Mr. Rooney
Probably about three years ago. I would have to look up the precise year.
Were those recommendations published?
They were not published.
Mr. Rooney
I do not know but they were certainly widely circulated. The report in question was rather technical on income guidelines and the subject of which Deputy McManus spoke, that is, the numbers covered in different areas. It tried to explain the apparent discrepancies. One will find that medical card coverage is very high in some counties while it is very low in Dublin. The report attempted to ascertain whether there was something systematically wrong in this regard or whether the trend was to be expected given the relative dependency rates and age and income profiles of the different areas.
Can the report be made available to the committee?
Mr. Rooney
I presume that it can as it is a report of the CEOs. The figures in it are probably very much out of date but I am sure there will be no difficulty in making it available.
We ask that the report be made available to the committee.
I support Deputy Fiona O'Malley's suggestion that we send a letter post-haste to the Minister recommending that we support the three objectives.
I thank the delegates for their presentation. It is fair to say that the members of the committee will leave as disappointed as the people in the Visitors Gallery. Some months ago the Post Polio Support Group met this committee and the committee felt its case was quite substantial and unique. Today's deliberations and the questions posed by the members have drawn attention to causes for concern. Consider in this regard the point the delegation made regarding the publication of the Estimates tomorrow and the fact that the Department must consider other groups. We specified at this committee that the Post Polio Support Group involves a finite number and that the funding involved to implement the proposals is quite insubstantial in comparison to that required for other such proposals. We honed in so often on the fact that the group's numbers would not increase but decrease. Senator Glynn made a point that has been referred to at this committee several times, namely, that we have never heard of anyone getting a cure for polio. This point clearly establishes the group's case.
I give an assurance that the committee is not playing to the Visitors Gallery because it has met many groups in recent years. It certainly agrees with the proposal that the Minister for Health and Children should be notified of the specific points made in the presentation of the Post Polio Support Group and that the case for the inclusion of polio in the Department's list of long-term illnesses is incontrovertible. The group advocated the automatic provision of medical cards to those diagnosed with late effects of post-polio syndrome and proposed that funding of €4.8 million be allocated to the group over the next five years to enable it to continue to provide vital services for its members, including funding for aids and appliances. We are agreeing unanimously with the proposals and are certainly not playing politics in regard to this issue, which we feel is quite serious. Is it agreed that the Minister be notified that this committee is fully in support of the case being made? Agreed.
I thank Mr. Kelly and the other officials from the Department. We recognise the overall case they are making but, nevertheless, we want to support the specific case of the Post Polio Support Group.
The joint committee went into private session at 4 p.m. and adjourned at 4.20 p.m. until 9.30 a.m. on Thursday, 25 November 2004.