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Dáil
‹ Leaders' Questions

Jacob Dooley respite care

Summary

Deputy O'Reilly raises the Dooley family's struggle to secure respite and autism supports for Jacob, saying Ministers have ignored repeated appeals. Bruton sympathises, points to extra funding and expanded services, but O'Reilly argues the provision is still falling short and that the family has already sought ministerial help.

I want to talk to the Minister about Jacob Dooley. Jacob is the middle child of Edel and Anton Dooley and he has been diagnosed with severe autism. The Dooleys are, in their own words, "a family in crisis." For months they have been appealing to Ministers for help but they have been ignored. I have written and spoken directly to the Minister of State, Deputy Finian McGrath, about this family and their desperate search for respite care for their son.

At a recent case conference where their case was discussed, the Dooleys predicament was laid out in detail. Jacob is eight years of age and engaged in aggressive behaviours toward his parents and siblings causing injury. As Jacob gets older and stronger, he poses a greater risk to his family, other students and staff in Foxfield school, and to the staff working within the family home. Jacob is displaying significant behaviours that challenge, such as biting and scratching. Edel herself has been bitten and scratched on a regular basis and Jacob recently tried to strangle his mother. Previous applications to St. Michael's House for respite, host family and link have all been submitted but to date none of these have been put in place.

This is one case of dozens I have been dealing with. The Minister will be keenly aware that there is not a Deputy in this House who does not receive emails and calls on a daily basis from desperate parents and family members who are seeking nothing more than respite. Anecdotal evidence may not count for much and given the responses to the desperate pleas from the Dooley family, and no doubt the Minister's unwillingness to comment on individual cases, I will look at the facts. Figures released to me by the HSE show that while the number in need of respite is going up, the allocation of respite hours is decreasing. In the first quarter of last year, 44,141 overnight hours were provided. This year the figure had fallen to 40,597. There is no urban-rural divide on this. All counties in this State are being treated equally badly. For example, Dublin North, where Jacob lives, is down 503 hours. If we look at Donegal, there has been a loss of 559 hours from last year. Shockingly, Dublin Central has seen a loss of 1,553 hours of overnight respite care.

Last week the Dooleys told their story on the Sean O'Rourke show. They are a quiet, private family and it pains them to have to do this. However, it appeared to work because immediately following the programme they received all sorts of calls from interested politicians. Indeed, they have now secured a meeting with the Minister of State, Deputy Finian McGrath, a mere seven months after asking for it.

My question is this. Will there be an increase in respite hours to cope with the additional demands that the school holidays place on families? Will Edel Dooley have to watch life pass her and her family by again this summer while she is unable to leave her home? Will the Minister acknowledge that there is a serious problem here? Will he commit here this afternoon to halt the decline in the provision of respite hours and to increase this basic service for struggling families such as the Dooleys?

Comment on this

First, I express my full sympathy with the family. I have dealt with many families who are very distressed in dealing with children of this nature, trying to access services and having a clear understanding of what is available for them. The Minister of State, Deputy Finian McGrath, has been working hard to try to improve the access to both information and service and he has applied additional funds to these purposes. The Minister of State has expanded the number of places, for example, for adults - children who reach the age of 18 and need additional places.

Clearly, this is an area of respite which, from my own experience, is a particularly acute pressure point in that provisions have been made in good faith for respite provision but because of a particular individual who has very challenging behaviour, sometimes it is not possible to continue to provide the planned respite because all attention has to be devoted to one very complex case. We need to have a better planning framework for this.

In my own area in education, we have made very substantial increases in provision for children with special education needs - a 41% increase in the case of resource teachers and 32% in the case of SNAs. We are investing very substantial funds to try to support children like this, staying in the education system and having their caring needs supported through the education system.

I am glad that Deputy Louise O'Reilly is able to report that the Minister of State, Deputy Finian McGrath, is meeting the family in question and I will certainly bring her concern to his attention. In my own area, I have seen pressure on respite in the recent past due specifically to difficulties in dealing with particular individuals and we need to try to plan for that in a better way. That is why we are seeking to develop a ten-year approach to health issues so that we can plan these resources in a consistent way. In the same way, the Minister of State, Deputy Finian McGrath, is developing a disability strategy so that these various elements can be resolved.

I understand that the HSE keeps a certain emergency capacity to try to deal with very special cases in a sympathetic way. Clearly, this is a case that it has sought to respond to.

All I can say is that I will certainly report the Deputy's concern to the Minister of State, Deputy Finian McGrath, who, to be fair to him, is striving continuously to make the case not only for additional resources but for additional understanding of the needs of people with a disability throughout our services. He is making very significant progress in that area.

Comment on this

One need not be a genius to figure out that while demand for this service is going up and the number of hours are going down, the Government is contributing to the problem. I asked the Minister some fairly specific questions and I also pointed out to him that the number of hours is decreasing while the demand is going up. That is not due to one, two or three individuals. That is due to a failure by the Government to treat these people with any sort of decency and respect.

The family got a meeting with the Minister of State, Deputy Finian McGrath, after they had been on the Sean O'Rourke show, just as the Devereaux family had their case dealt with after they had been on Joe Duffy's show. What are we to do? RTE can only provide so much of an outlet. We can only put so much pressure on. These people need action. They should not have to go to RTE.

These people are watching this discussion and are listening to what the Minister is saying. He is not offering them anything other than platitudes and that is an insult to the Dooleys and to the thousands of people who are now facing into a summer of desperation because they cannot access respite care for their loved ones.

Comment on this

I have to say to the Deputy that if she was serious about having the detail of this case dealt with she would not be raising it on Leaders' Questions since she knows I do not have advance notice of the issues. If she wanted to do so, she would have asked the Ceann Comhairle for special notice provision, whereby the Minister responsible could have been here to respond in detail.

Comment on this

That is not true. The Minister was well aware of this.

Comment on this

I am providing Deputy O'Reilly with the sort of response that she can expect from someone who is taking Leaders' Questions.

Comment on this

I have just told the Minister what is going on.

Comment on this

I can tell Deputy O'Reilly that we have massively expanded our provision for caring. A total of €1.2 billion is being spent as we speak on home carers and support for home help hours on respite.

Comment on this

I have before me the Minister's figures; they are not mine.

Comment on this

We have €1.7 billion being spent in the education sphere. All of those provisions are expanding rapidly. As I have outlined, even in the very difficult years, we expanded those provisions by over 40% in the case of support.

I am not pretending that there are not cases where need is not met.

Comment on this

There are thousands of them.

Comment on this

The need in this area is growing rapidly. However, it ill-behoves Deputy O'Reilly to come in and try to pretend that we are not addressing the issue when she does not allow any possibility of the case of that family being addressed by someone who is aware of the circumstances and could have responded.

Comment on this

This is not a problem I have.

Comment on this

I take Deputy O'Reilly's shock and awe with a large grain of salt.

Comment on this

Every one of the Government Deputies has received representations from this family.

Comment on this