Denis O'Donovan (Fianna Fail)
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I welcome the Minister of State, Deputy Finian McGrath.

Colm Burke (Fine Gael)
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I thank the Minister of State for coming to the House. I have raised the issue of respite care with him previously, particularly in so far as it relates to Cork. Since the last time I did so, I have been contacted by a number of parents across the country who are having difficulties as a result of what has occurred in the past two or three years in premises where respite care is available and in respect of which HIQA has done inspections and set standards.I have no difficulty with standards being set and making sure we achieve them, but in some cases facilities have been withdrawn. What I am looking for - it is a very reasonable request - is a national respite care strategy. We should identify, first, the number of people with disabilities being cared for by their parents, their brothers or sisters or their relatives in their own homes, in other words, those not reliant on the State or a State facility for their care. Second, we need to identify the demographics of people with disabilities, the age groups about which we are talking, the numbers between the ages of 18 and 30 years, 30 and 40, 40 and 50 and so on and their changing needs.

The third thing we need to identify is extremely important; it an issue that arises every week at my constituency clinics. I refer to ageing parents who are looking after their children. For instance, one man whose case I have dealt with travels 15 miles a day to put his daughter into the care of a Cope Foundation day facility and collect her every evening. He is 79 years of age and has been doing this for the past 45 or 50 years. He will not be able to do it forevermore. There are a huge number of people looking after their children at home who have been doing it for many years and time is catching up with them. We need to find out their age profile.

Once we have this information, we can plan a detailed strategy, not just for one place but for the entire country. We specifically need to identify facilities which cater for people who require respite care. This is extremely important. As I said to the Minister of State previously, one lady I met recently told me that she slept for a full two days when her adult son was in respite care because of the work she had to do in order to look after him. These are the difficulties such carers face. I dealt with another case in which the parents of a child who is now in her early 20s had to lift her out of bed every morning, wash her, clean her and tube-feed her. They provide care for her 24/7. It is important that we give such parents the support they deserve by making sure there is an adequate respite care service available, not just in one place but across the country.

Finian McGrath (Dublin Bay North, Independent)
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I thank the Senator for raising the very important issue of respite care services and giving me the opportunity to outline the position on their provision.

A Programme for a Partnership Government recognises the need for respite care services to be developed further. The Government is committed to the safeguarding of vulnerable persons in the care of the health service by providing services and supports for people with disabilities that will empower them to live independent lives in accessing the services they choose and enhance their ability to tailor the supports required to meet their needs and plan their lives.

The provision of respite care services has come under additional pressure in the past few years. I accept the point the Senator made in that regard. Any available development funding has focused mostly on the provision of day places for pupils graduating from school or rehabilitative training programmes. We have prioritised this area because there were huge gaps in it, particularly when I took over my responsibilities as Minister of State. This has led to increased demand for respite care services for these young adults who would previously have accessed them as children. We accept that there is a problem and that we must do something about it.

More children and adults are seeking access to respite care services. The "changing needs" of people with a disability are also having an impact as they, with the rest of the population, live longer. Respite care is not always centre-based and can be provided in a number of ways, for example, as a holiday residential placement, an occasional respite care placement with a host family, overnight respite care in the home and in summer camps which allow people to continue living with their families and in their local communities.To support these alternative ways of providing respite, funding has been provided to the HSE to provide 185 new emergency residential placements. New home supports and in-home respite care for 210 additional people who require emergency supports has been allocated. This marks a significant change in the way respite services are delivered. The HSE social care operation plan for 2017 aims to provide 182,000 overnight stays in centre-based respite services, in addition to the 41,000 day respite sessions. The HSE acknowledges the difficulty experienced by families in respect of the lack of respite places available and is working with agencies to provide and explore various ways of responding to this need in line with the budget available.

In this regard, an ehealth resource for providers, such as online case management systems that facilitate the effective management and tracking of all residential home support and emergency respite services across the nine community health organisations, is being developed. This will provide a detailed inventory, bed register and map of current service capacity. Each of the CHOs will have in place residential care and executive management committees that will have the overarching responsibility of managing and co-ordinating residential places supports within their respective CHOs

I thank Senator Burke for raising this very important issue. I want to assure him and the House that I will continue to liaise with the HSE regarding the availability of respite care facilities.

Colm Burke (Fine Gael)
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I thank the Minister of State. In fairness, he has dealt with the issues I have raised but there are one or two fundamental issues that we need to identify, such as the demographic profile of parents who are caring for children. It might not be a bad idea to seriously consider asking an educational institution, such as a university, to conduct research in this area and collate all of the figures because that has not been done. We still do not know the total number of people who require respite care, their age profile and the age profile of the parents concerned. That is fundamental information that we need to have in place.

All of the information is in different organisations, but there is no national database. One of our educational institutions could take on such work as a research project. The ESRI could take on such work as a project. Long-term planning is of fundamental importance to this area.

Finian McGrath (Dublin Bay North, Independent)
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I thank Senator Burke for raising these very important issues. I take on board the views he has raised. In regard to the HIQA issues, we all want to improve standards for all services for people with disabilities. We also need some flexibility.

I take on board the Senator's point on demographics and the age profile of parents. It is a fact of life that because young adults with intellectual and physical disabilities live longer than they did 25 years ago we have to plan for that. I will explore the idea of getting a third level institution or some other organisation, such as a group within the disability sector, to conduct research.

I have been in this job for 12 months. My plan was to try to ensure that we have services from the cradle to the grave for families. We have done a lot of work at first and second level, and now we have to put out the fires for the cohort aged 18 years and older. Senior citizens acting as carers is a major issue.

I have travelled around the country and have heard what the Senator has said. I was in Cavan yesterday. I met two families, one of whom had 18.5 hours of respite care a week, which I could not believe because it is the first time I have heard of such a high level of respite care. Another woman only receives six hours a month of respite care. There are inconsistencies, problems and a lack of co-ordination in the system.

We need to determine the facts in order to plan for services. I will bring all of the points discussed back to the HSE. I spoke to a representative as recently as last week about pushing the issue of respite. In terms of the social care disability plan for the next two or three years, we must have accurate information so that we can plan for the services.