Dáil debates

Tuesday, 8 April 2014

Topical Issue Debate

Home Care Packages

4:55 pm

Photo of Gerald NashGerald Nash (Louth, Labour)
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I thank the Leas-Cheann Comhairle for allowing me to raise the very distressing and sad case on behalf of the Garvey family in Dundalk, County Louth. David Garvey is a young man, he is only 33 years of age and he suffers from a very complex condition called locked-in syndrome, which leaves him completely paralysed apart from control of his eye movements. He cannot move or speak and his only form of communication is through blinking or eye gaze. Despite this dreadful affliction, David is fully conscious and able to think and reason normally.

His condition requires a high level of medical attention. He is currently receiving care from the excellent staff in Beaumont Hospital, but his fervent wish is that he be allowed to leave hospital and be nursed in his home in Dundalk. In January, David was delighted to hear that the HSE had approved this request and the required funding of €200,000 to €250,000, which would enable him to go home. However, this was, in effect, overturned and the HSE now claims that the cost would be in the region of €400,000 to €450,000. I am interested to find out how we can have two such wildly varying figures in the space of a few weeks, and which figure is accurate. I believe the Minister of State would acknowledge that David's case is quite a tragic and sensitive one and deserves the most sensitive care and attention we could possibly give it.

Perhaps we should reflect on David's own words to the HSE, which he wrote with the aid of his family, holding up an alphabet chart and which I wish to put on the record. He wrote:

Can you please close your eyes and imagine lying in bed not being able to move a muscle and being hooked up to a life support machine? Imagine when you open your eyes the first thing you see is a ceiling, and you will see that same ceiling for the next few hours until a nurse comes and move your head. When your head gets moved, your next view is a wall with a mirror and sink.

Believe me, this will be the highlight of your day until your family comes at 3 p.m. to visit. Now, imagine you have an itch and you can't move to scratch the itch and you can't tell anybody because you can't talk!

You can't even wipe your eyes if they get sore or dry, you can't move your legs if you get a cramp.

Your family will try to keep your spirits up and try to make you laugh. They will read the paper and tell jokes and tell you about their day. That's the hardest part. Knowing that you are not part of the family any more.

When they leave, you try and not let them see how upset and miserable you are. That's when your tears will come. You can't even wipe your eyes until a nurse comes and does that for you.

I JUST WANT TO GO HOME.

Please let me go back to my family for somewhat of a normal life. Let me plan my wedding. Let me have happiness.
It took David one week to write this letter that has taken me one minute to read aloud to the Chamber.

I believe that David Garvey, his family and his fiancee are entitled to some happiness. Surely it is not beyond the ken of the system for this matter to be brought to some kind of a satisfactory conclusion whereby he can allowed to go home.

I know the family are very appreciate of the support they have received from the HSE and from Beaumont Hospital, which I also want to put on the record. I ask for this to be brought to some kind of a satisfactory conclusion where commitments that were previously made can be honoured and David can be allowed to come home to be cared for by his family and by the staff of the HSE.

Photo of Alex WhiteAlex White (Dublin South, Labour)
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I thank Deputy Nash for raising this issue this afternoon. The individual at the centre of this case raised by the Deputy has displayed tremendous tenacity and bravery in dealing with his condition. I must also acknowledge the devastation of his family and of his fiancee at his diagnosis and their incredible commitment to him on a daily basis.

Locked-in syndrome is a challenging condition in which a patient generally retains cognitive function but requires constant clinical care, treatment and supports, such as ventilation. It must be acknowledged that in this case the individual's needs are particularly complex and patients with such needs are generally cared for in an intensive care setting.

His post-discharge care would involve the provision of appropriate medical devices, such as a ventilator, which are essential to his survival, and 24-hour specialised intensive care unit nursing care. Given the complexity of his care needs, to be cared for at home, he would need an extensive home care package, including 24-hour specialist nursing care with clinical governance by an appropriate consultant.

I understand several multidisciplinary meetings have already taken place at local level between the family, the HSE and Resilience Ireland, a company which specialises in specialist advanced home care management. I have also been assured that there has been significant engagement between Beaumont Hospital and the local community care services in an effort to find a solution appropriate to this patient's needs.

While it may be possible to provide such a solution, the equipment, staffing and resources required are likely to be very substantial and would have to be accommodated within the overall resources available to the HSE for disability services. This case must also be considered in that context.

The Department of Health has discussed this case with the Health Service Executive and a meeting between the family and senior officials in the HSE has been scheduled for early next week to discuss and consider the patient's request to transfer home from Beaumont and the significant complex issues associated with such a transfer. The HSE will continue to explore with the family all options for future care, including alternative community service providers or the individual's possible move to a hospital closer to home and family.

Photo of Gerald NashGerald Nash (Louth, Labour)
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I thank the Minister of State sincerely for his reply, which was enlightening. I am glad to hear the HSE has committed to meeting the family next week, and I want to record at the outset the family's thanks for the support it has received to date from the HSE. Local HSE officials are on record as stating that "there is a national fund for emergency cases", which I understand the national director of social care will utilise over the next 12 months. That is a direct quote from a letter received by the family from a local official. To give the Minister a timeline in terms of the way things have changed, the same local official went on to say that "the process to access the funding has not yet been agreed". He further insisted that he will continue to advocate for David and for the family at national level. However, in a subsequent note to me from another official, who is acting in the same capacity as the official to whom I referred previously, it appears the cost of bringing David home and having an appropriate home care package to fulfil his needs seems to be oscillating between €400,000 and €450,000. Notwithstanding the reference made in letters from the HSE to the family about the existence of a national emergency care package or that funding stream, I recall the Minister of State stating in his contribution that the budget for the care of David would need to be met through the disability service budget available to the HSE.

That official also made the point that David's care at home would have to be led essentially by a respiratory care consultant attached to Our Lady of Lourdes Hospital in Drogheda. As I understand it to be the case, that respiratory consultant is no longer in that position. That further complicates matters from the HSE's point of view.

Responses are needed to two fundamental questions, and I appreciate the Minister of State may not be in a position to respond to those today. First, will the HSE locally and nationally commit to providing the funding necessary under the emergency care scheme to David and, second, if it is the case that there is not a respiratory consultant in place currently to deal with his care needs, will that respiratory consultant be appointed shortly to meet David's needs, and the needs of others in the Louth-Meath area? I understand and appreciate that he may not have the answers to those questions today. I appreciate also that I am sure he will be as moved as I was by David's story and the challenges involved. If the Minister of State is not in a position to answer those questions today, I accept and appreciate that, but I ask him to commit to having the HSE correspond with me and the family in the coming days to outline the process regarding the emergency care fund, and the position on the appointment of a respiratory consultant who could potentially look after David's needs.

Photo of Alex WhiteAlex White (Dublin South, Labour)
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As the Deputy acknowledged, I am not in a position to respond to the specifics of the two questions the Deputy posed. They are not unreasonable questions but I am not able to respond to him at this point in the kind of detail he would wish, particularly in regard to the various personnel involved. I repeat the Department of Health has discussed Mr. Garvey's case with the HSE with a view to senior officials having an early meeting, as I mentioned, with the family to develop a plan for their son's future care. A commitment has been made for such a meeting to take place next Tuesday, 15 April, and it is intended that it would be attended by Mr. Pat Healy, the relevant national director of the HSE, a very senior official in this area. It seems that would be an appropriate opportunity for the family, Mr. Garvey and perhaps the Deputy on their behalf to seek perhaps more specific responses on the questions the Deputy raised. There is no doubt there is a significant resource commitment associated with the proposed move.

I am not aware of the existence of the two different estimates the Deputy outlined. This is also something which could be pursued. As has been acknowledged, the needs are complex and generally in circumstances such as this a person is cared for in an intensive care setting. Therefore, what is proposed here needs to be pursued in detail with the HSE, and next Tuesday's meeting is the right place to do this.

5:05 pm

Photo of Robert TroyRobert Troy (Longford-Westmeath, Fianna Fail)
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I am grateful for this opportunity and I thank the Minister for coming to the House. I welcome and compliment the Minister on the announcement of €2.5 million for community groups, albeit a reduction on what was announced in 2013 and 2012. I wish to speak about the unfairness, inequity and inequality of the scheme announced for the child care system that is in place. We must be realistic about the model that exists. A total of 70% of all services are privately operated and the State depends on these services. If we introduce policies that are inequitable towards the largest part of the sector we run the risk of these becoming unsustainable and closing down. If this happens, who will pick up the shortfall? Will the Department explore the trend over the past four or five years regarding the number of community not-for-profit operators and private operators that have commenced and ceased trading? It would be interesting to note the figures. I am not speaking about large chain operators. I am speaking about small service providers such as Waddlers and Toddlers in Rathowen in County Westmeath or On Cloud 9 in Mullingar, where the owner operator is in charge. I could give a range of other examples from my constituency and I am sure such services also exist in the Minister's constituency. Private operators are essential in the communities where they operate because no community facilities exist. These small private operators are expected to adhere to the same standards as community operators, and rightly so, with regard to the adult-to-child ratio, environmental issues and health and safety issues. All regulations must be adhered to and rightly so. However, these operators cannot avail of community employment schemes or the community child care subvention scheme and they cannot fundraise to make up the shortfall. They compete with non-regulated private services such as childminders, and it seems the Minister has no intention of regulating these, so they are at a disadvantage.

We must remember that when the State made significant investment in the services it did so proportionately. Is it the case, despite the fact the State depends on these services, that they make up 70% of all services nationally and that the State has already significantly invested in them, that we will no longer support them? This policy runs the risk of driving up the cost of child care at a time when we speak about what policies we can implement to reduce its cost. Is it empty rhetoric on the Government's part about supporting parents who wish to return to work and reducing the cost of child care? This policy flies in the face of it.

I do not suggest private operators should qualify for the same level of funding as community operators, but they should be eligible for a proportionate amount of funding based on the size of the service they provide. The State depends on the services they provide.

Photo of Frances FitzgeraldFrances Fitzgerald (Dublin Mid West, Fine Gael)
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I thank Deputy Troy. I wish to put the facts on the table. All capital funding for child care services was cut in 2008 and no new child care capital funding was made available in that year, 2009, 2010 or 2011. It was not made available until 2012 and 2013 when I reopened the child care capital funding schemes. Absolutely no capital went into child care in recent years. Fortunately I was able to reverse this situation two years ago.

Given the extensive infrastructure that existed, it was absolutely clear there would be a need to provide capital support to public and private child care providers, which is what I have done. In 2012 I provided €6 million in capital grant funding to 290 private and community not-for-profit child care services. The 2012 funding provided support to child care settings to address remedial maintenance, renovation work on buildings, and equipment for early education and child care services. It was very much welcomed by public and private providers. In 2013 I provided €2.75 million in capital grant funding to 671 private and community not-for-profit child care services. This covered small grants for accessibility, maintenance work, natural outdoor spaces and critical works to ensure buildings are fit for purpose under the child care regulations.

Having operated different schemes in 2012 and 2013 addressing different areas of need, and having learned from each scheme, I decided that for 2014 we would focus on another area in need of help, namely, the repair, maintenance and upgrade of community and not-for-profit child care services, which clearly needed support. On 12 February Deputy Troy tabled a parliamentary question asking me to introduce large-scale capital grants for child care, particularly for the community sector. The Deputy recognised that the community sector needs capital funding, and there is no question about this.

In introducing various capital programmes I had a range of different criteria for each year. This year I am focusing on community child care services, which play a major role in ensuring that disadvantaged and low-income families have access to high-quality and affordable child care as they provide access to the community child care subvention scheme, for which the Department provides approximately €45 million. We need to invest in these facilities to ensure they can be maintained in the necessary way.

I have announced that later this year I will launch another scheme for next year. This announcement will include the public and private sectors. I am aware of the difficulties experienced by providers in the private sector, but at present it is vital that this funding is directed towards addressing the immediate issues in the community sector. As I pointed out, there is considerable investment in the sector already and we must protect it so the service is maintained for those who are dependent on it. Later this year I will announce further capital investment, which will be open to both sectors.

I received feedback from the sector following the disbursal of the capital grants last year that amounts were needed to deal with structural issues in the community child care sector and that it would need this type of investment to ensure the facilities were up to the standards we expect.

5:15 pm

Photo of Robert TroyRobert Troy (Longford-Westmeath, Fianna Fail)
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While I thank the Minister for her reply, she failed to acknowledge the huge capital investment made in the period between 2000 and 2008. As she started at the downturn in 2008, she failed to acknowledge the huge capital investment made in both community and private facilities. Moreover, investment in the latter was made on a proportionate basis. I accept and no one questions the need for support for community services. I am well aware that I submitted the parliamentary question in question - I was the person who submitted it - but my question is, why has there been a deliberate change of policy away from supporting the private services that make up 70% of all services providing child care in Ireland? The Minister herself, by virtue of her inclusion of such services for the past two years, has acknowledged clearly the vital role they play in the provision of child care in the State. While I welcome that the Minister is thinking about supporting such services later in the year for next year, if they are not supported in the future, they will become unsustainable. If they become unsustainable, who will take up the shortfall? Where will the State be able to provide services in advance of the closure of such private services? I ask again, what was the rationale for the deliberate exclusion this year of private services from the capital grants? I reiterate the services make up 70% of the overall provision of services within the State. What does the Minister hope to achieve this year by the exclusion of the private sector in this regard?

While I do not expect the Minister to have this information to hand, I seek information on the trend over the past four or five years in respect of the numbers of openings and closures of community not-for-profit groups versus the numbers of openings and closures of private groups. When deliberating on eligibility for the scheme, did the Minister consider the trends over the last number of years by ascertaining which sector has experienced closures and openings in the largest percentage terms?

Photo of Frances FitzgeraldFrances Fitzgerald (Dublin Mid West, Fine Gael)
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I also wish to highlight that in the funding decision announced last week, €250,000 each will be made available to parent and toddler groups and to the childminding development grants scheme, which also are two highly important initiatives. If I may, I will reframe the manner in which the Deputy is describing the scheme by stating the Government is targeting a sector that requires support this year. Clearly, over the past two years, where there was capital investment, the schemes were targeted at particular areas. It has been identified that refurbishment is needed in the community sector in particular and that there should be a targeted scheme for this year. That is what this is. It is not a question of seeking to exclude any particular sector but is about targeting as resources are available. Were unlimited resources available, clearly one would be able to do everything all at once. However, given that this is not the case, the Government has targeted the money available this year to support the refurbishment of the community public sector, based on the needs in that area at present. However, I certainly am not excluding in any way the provision of support at a future date to the private child care providers, as I provided during the first two years as well.

Photo of Michael KittMichael Kitt (Galway East, Fianna Fail)
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The fourth matter is in the name of Deputy Seán Kyne. As no Minister for the relevant Department is available, I ask the Deputy if he wishes-----

Photo of Frances FitzgeraldFrances Fitzgerald (Dublin Mid West, Fine Gael)
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The Minister is not available.

Photo of Michael KittMichael Kitt (Galway East, Fianna Fail)
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Yes. I understand Deputy Kyne has something to say in this regard.

Photo of Seán KyneSeán Kyne (Galway West, Fine Gael)
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The Minister's office has confirmed that a Minister will be available next Tuesday, 15 April 2014 and I will defer it until then.

Photo of Michael KittMichael Kitt (Galway East, Fianna Fail)
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The Deputy wishes to defer debate on the Topical Issue matter.