Maria Byrne (Fine Gael)
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I welcome the Minister of State at the Department of Health to the House and thank him for coming here to discuss this important issue. I tabled my Commencement matter because I want to know how many children with severe disabilities await placement in residential care. Some of the children have reached a certain age and they no longer quality for some of the services that are provided by the Jack and Jill Foundation, etc. Let me give an example where both parents work and they have a six-year old daughter with multiple disabilities. She is brain damaged so cannot walk, talk or communicate and must be PEG fed. Even though both parents work, they have more or less been advised that the girl's father should give up as the family would be in a better position to qualify for a lot more services. The parents care a great deal for their daughter. They provide care 24-7 but do not receive any assistance because they both work. There are two more children in the family. The parents were given medical cards for those children but, unfortunately, the medical cards have been taken away. The medical cards allowed the parents to receive some money to pay crèche fees. The family has a lot of expenses and outgoings. Their daughter is also getting older and is so severely disabled that they are on a HSE waiting list for permanent residential care. Their daughter now suffers multiple seizures. Her parents have been trained to cope with her seizures as, unfortunately, they cannot always have a nurse with her at such times. As the seizures have become more frequent, her parents have been advised to get their daughter into full-time residential care. Unfortunately, there are no residential places available and no indication when the issue will be resolved.

I tabled my Commencement matter to highlight the plight of this family and they gave me their permission to do so. There are more cases of people in need. Children should be prioritised in terms of residential care, especially when they suffer multiple disabilities.

Jim Daly (Cork South West, Fine Gael)
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I thank Senator Byrne for raising this important issue. I also thank her for giving me the opportunity to outline the position in terms of the provision of residential services for children in the Limerick and Tipperary area. I am informed by the HSE mid-west community health care that seven children await to be placed in full-time residential care - five in Limerick and two in north Tipperary.

Disability service provision is moving towards a community-based and inclusive model rather than being institutional and segregated. The Government's objective is to deliver disability services that are person centred. Being person centred is about putting those who use our service at the centre of all our activities. It is about listening to people or their advocates and transferring our focus from the service to the people who use same. Our policy is for people with disabilities to be supported to achieve their full potential so that, where possible, they can live ordinary lives in ordinary places doing ordinary things.

The HSE has recognised that first class early intervention services and services for school aged children with disability are paramount and need to be improved and organised more effectively. This process is well under way nationwide.

The HSE is currently engaged in the reconfiguration of existing therapy resources under the national programme on progressing disability services for children and young people. The aims of this programme are to bring about equity of access to disability services and consistency of service delivery, with a clear pathway for children and their families to disability services, regardless of where they live, what school the child attends or the nature of the child's difficulties.

Increased demand for residential places is acknowledged by the HSE as a challenge for all service providers arising from the lack of availability of development funding during the economic downturn. It should also be noted that given the introduction of the national standards for residential services for children and adults with disabilities, every new residential centre must now be approved by the Health Information and Quality Authority, HIQA. All centres providing residential services, including respite services, to children and adults with disabilities now need to be registered with HIQA by law. Each centre will be visited by HIQA inspectors to ensure that they provide an appropriate standard of care.

The need for increased residential facilities is acknowledged. The HSE continues to work with agencies to explore various ways to respond to this need in line with the budget available.

We want to ensure that people with disabilities are safe and empowered to maximise their potential through respect and understanding. This means that services will be delivered through a range of options in line with those available to the wider population.

Maria Byrne (Fine Gael)
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I thank the Minister of State for his response but it does not resolve the issues faced by the family I mentioned. Their daughter is progressing very quickly and suffers seizures. I also highlighted the fact that the family lost the medical cards for two other children. Families in these situations feel vulnerable and need support, particularly when they await placement. An exception should be made for the seven families I mentioned in my Commencement matter. I am sure that there are many more families located around the country who are in similar position. The family I mentioned are finding life tough because they must provide care 24-7. They are delighted to provide care but they are approaching the stage where they will no longer be able to carry on and will have to bring in support. The parents must pay for such support because they do not quality for any services due to both of them working. However, they work because they must pay their mortgage and send their other children to school, etc.They are going to have to pay for that support because they do not qualify for anything. Both parents are working but the reason they are doing so is that they have a mortgage to pay and have to send the other children to school, etc. Cases such as this need to be considered on their own merit. Families' circumstances need to be examined while they are waiting for long-term residential care. It does not look like there will be any provision in the short term to resolve this issue. There have been meetings with the HSE but nowhere suited to meeting the needs of the child in question has been highlighted or selected.

Denis O'Donovan (Fianna Fail)
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Perhaps the Senator could speak privately with the Minister of State and his staff to determine whether progress could be made on this. It is difficult to respond when raising a specific case on Commencement matters. Perhaps communication between the Senator and the Minister of State might result in progress of some kind. It is a difficult question for the Minister of State to respond to.

Jim Daly (Cork South West, Fine Gael)
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I thank the Cathaoirleach for that guidance and assistance. I will certainly work with the Senator and the HSE. I will connect with the latter and ask it to review the case the Senator is talking about. I stress that the difficulty is felt. While we can read scripts or whatever, we, as parents, politicians and leaders in our community, acknowledge the contribution of parents in cases such as this. It is extraordinarily difficult to do what they do seven days per week, 24 hours per day, with a scarcity of respite and a lack of residential places. Therefore, I will ask the HSE in the area in question to review the case and redouble its efforts to determine what we can do in the interim to provide as much support as we can to the family.

Maria Byrne (Fine Gael)
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I would appreciate that. I thank the Minister of State.

Denis O'Donovan (Fianna Fail)
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As somebody with a close connection to somebody with a child with special needs, I believe the facilities available in west Cork and many parts of rural Ireland are far better than those available in Dublin. That is what I have learned in recent years. We have our disadvantages in west Cork but we have many good systems there also. We will move on. I thank the Minister of State and the Senator.