Michael McGrath (Cork South Central, Fianna Fail)
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I want to raise the lack of residential placements for adults with severe disabilities, in particular where they are cared for by one or both elderly parents. I would imagine this is an issue of which the Minister of State, Deputy Finian McGrath, is acutely conscious. There are families in such circumstances who are existing day by day beyond crisis point.

I recently put down a parliamentary question asking the HSE for data on the overall number of people with disabilities on a waiting list for a residential placement. The HSE stated in the reply there is no centrally maintained list of people waiting for residential services. However, the need for more residential facilities was acknowledged and the HSE continues to explore the issue. The HSE is not even aware of the number of people with severe disabilities who are currently on a waiting list for a residential placement.

Last year, I was informed by the COPE Foundation in Cork that it has 168 people on a waiting list for residential supports. It has divided these into three categories. Priority level No. 1 involves 27 cases where two parents are deceased or the one sole carer is incapacitated in some way. For priority level No. 2, it had 20 cases which involved the person living with elderly parents and with significant issues of concern for the family coping. The remainder, 121, were priority level No. 3. That is one service provider alone. Has the Minister of State the overall data? If he does not, will he get it because we need to know the extent of this problem?

What really brought it home to me was one individual case on which I have been working for some time. Unfortunately, it is ongoing. This case involves elderly parents in their mid-70s providing full-time care for a profoundly disabled daughter in her early 40s. She is non-verbal and wheelchair-bound. They have to do absolutely everything for her. They can be woken up several times during the night when she gets upset. They have to do their very best to care for her. I have taken them through the process. They have raised their case with the service provider and the HSE. Their daughter is on a waiting list but there is absolutely no light at the end of the tunnel for her. According to the COPE Foundation’s categorisation, she is not even priority level No. 1 because both her parents are alive. They are elderly and have their own health issues but they are alive.

A senior manager with the HSE said the problem is that it is not getting the funding from the Government to provide these residential places. The parents in question literally have no hope. They go to bed every night with one worry, namely, what happens when they die, whether it is one or both of them. Their daughter will then be elevated to priority level No. 1 within the HSE’s categorisation. Even with that, there is no guarantee, however, that she will get a residential placement. Presumably, some emergency support will kick in. It is an appalling situation. The fact the HSE does not even know how many people are on this waiting list beggars belief.

I hope the Minister of State will shed some light on it today and give some hope to families like the one in question who encouraged me to bring this issue to his attention.

Finian McGrath (Dublin Bay North, Independent)
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I thank Deputy Michael McGrath for raising this important issue. I am familiar with the issue of elderly parents looking after adults with intellectual disabilities. It is an issue to which we must all give priority.

The Government’s ongoing priority is the safeguarding of vulnerable people in the care of the health service. We are committed to providing services and supports for people with disabilities which will empower them to live independent lives.

As part of ongoing service provision, this year the HSE will provide over 8,300 residential places for families in need throughout the country. Residential services make up the largest part of the disability budget. Our policy on people with disabilities is to support them to achieve their full potential in order that, where possible, they can live ordinary lives in ordinary places doing ordinary things. The need for increased residential facilities is acknowledged and I fully accept the point made by the Deputy on the issue. The HSE will continue to work with agencies to explore various ways to respond to this need in line with the budget available. Residential placements for adults with disabilities are considered following detailed clinical assessment by HSE services. Access to places for those with the most complex needs is allocated on a priority basis and on the basis of the availability of appropriate services.

A significant underlying challenge relates to the unmet need for residential and respite care in services as a result of the absence of investment during the economic downturn. Part of the problem is the lack of investment in services for many years. The HSE national database figures indicate an annual requirement of 400 residential places per year to meet identified needs. That is the figure I have encountered as a Minister of State. What we are really talking about is the need for 400 extra and new residential places per year. The services are experiencing a high annual demand for emergency residential places and must respond to the most urgent cases on the waiting list.

This year the HSE disability budget is over €1.7 billion, an increase of €92 million on the figure for last year. We are particularly committed to providing a range of accessible respite supports for people with disabilities and their families. This year the HSE will provide over 182,000 respite care nights and 42,500 day respite care sessions for families in need throughout the country. We acknowledge the need for increased respite care services throughout the country. That is why we secured an additional €10 million to specifically enhance respite care services. This funding will provide extra facilities. We are also planning to provide a range of alternative respite care options for families.

This is the core issue in the debate. We need 400 new residential places every year to catch up and invest in the services. Last year in the region of 235 places were provided and a further 170 were taken out of institutional care services. The figure on which I will be focused in the coming weeks in negotiations on the Estimates is the need for 400 places. The Deputy mentioned 27 on a priority 1 waiting list for Cope Foundation services. I have come across this figure in St. Michael's House and other services. The ballpark figure for which I will be pushing is 400 new residential places.

Michael McGrath (Cork South Central, Fianna Fail)
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I thank the Minister of State for his reply. That is a new figure. Certainly, I was unable to extract such a figure by way of parliamentary questions. It informs us that there is some level of co-ordination between the HSE and service providers. The Minister of State should get an answer to the question of how many are on waiting lists if he does not already have the figure. He has said there is an annual requirement for 400 places. The HSE should contact each service provider. It appears that waiting lists are administered at the level of the service provider. Therefore, the HSE should contact all service providers and pull together the data for the numbers on waiting lists. The Minister of State referred to 8,300 residential places. That is the current number of places and they are taken. The figure does not erode in any way the waiting lists. Given that the waiting list is almost 170 for one service provider alone in Cork, the figure nationally must be in the thousands.

I wish to bring it back to the example I gave. The family in question have been trying for two years. The parents are in their mid-70s and struggling. I acknowledge that they receive a respite care service when they most need it, which is appreciated. However, when it comes to a residential placement, they have been told by the service provider and the HSE that there is no hope because their daughter is not at priority level 1. Priority level 1 status is afforded to drastic cases where both parents are deceased or where a sole carer is incapacitated in some way. Essentially, they are cases where the HSE has no option but to step in and provide care.

I call on the Minister of State to do more digging on this issue. He will receive support from my party when it comes to the budget negotiations on it. I have a personal interest in it and I am keen to see more progress being made. We will support the Minister of State, but he needs to get more information from the HSE through the service providers.

Finian McGrath (Dublin Bay North, Independent)
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I again thank the Deputy. I agree absolutely that we have to receive accurate data and up-to-date information, as I know from visiting the services. I visited the Cope Foundation where I had a two-hour session with the people there to discuss their particular needs. We have increased the funding for the foundation in 2018. Is it enough? The answer is absolutely not.

Let us go back to the core issue of focusing on the need for more residential places. We need to focus on a particular cohort of families where the parents are in their 70s and 80s and the adults being cared for are in the 40s and 50s. These are the people who need places. The Deputy referred to the waiting list of 170 at the Cope Foundation. That is an accurate figure based of my experience in talking to staff and parents in Cork.

I will appreciate the support of the Deputy coming up to the negotiations on the Estimates. We need to ensure we will receive 400 new places this year to try to deal with the issue. My plan and objective as Minister of State is to try to have services from the cradle to the grave for all children with disabilities. We have come through a big debate in recent weeks on the rights of women. I am also pushing on the rights of people with disabilities. We need to ensure services are in place for them. We need to build a new system that will respect people and look after senior citizens who are doing a fantastic job. In the meantime, I see respite care, the carer's grant and other supports as stop-gap measures. They do not address the real issue. We have to face the reality. We need to focus on providing in the Estimates for 400 new places at a minimum. I would appreciate any support in that regard. It will be among my priorities in the coming weeks.