Mary Ann O'Brien (Independent)
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I thank the Minister of State for attending to take this Adjournment matter, which is about a young girl who has a profound intellectual disability and intractable epilepsy. Her family's health has completely broken down. She is 5 ft. 7 in. and weighs 65 kg. After a desperate appeal by her family in 2013 for their daughter to be cared for by the State, assessed and taken into respite care, they were very grateful to get a place for her in a residential care unit in Nurney, County Kildare, which involves a 120 km round trip for the family. This young girl has daily seizures which are life threatening because they lower her blood pressure and oxygen levels. Her parents have fought long and hard to get their little girl back to school. She spends up to three hours in a car every day, depending on traffic, to attend school in Cheeverstown. All the family want is for their little girl to be taken into care in Dublin, somewhere near home. They are spending over €4,500 on petrol and driving every day to see their child.
HIQA, an arm of government, has set out in the national standards for residential services for children and adults with disabilities some features of care settings, including that the positive attachments children make before admission are promoted and maintained and that children are encouraged to develop relationships with their peers and keep their relationships with their families and friends. This child cannot speak; all she has is the visual love of and communication with her family. Her only quality of life is when she sees her father, mother and siblings who drive to Nurney every day to see her. Given that she is with adults in the house there, the family would accept residential care in Dublin with adults as long as it was close to home, within a few miles of Cheeverstown.
This little girl has sustained injuries since she has been taken into care. I visited her last night. While I do not blame anybody, she has broken her toe, has ligament damage in her ankle and can no longer walk. She has hurt her neck and split her lip. She had to go to hospital and her lip will never be the same again because she did not have plastic surgery. Given her seizures, she needs to be cared for near a hospital. From Nurney, it takes at least one hour to bring her to hospital when she has a seizure, which is unsuitable. On 8 July the HSE officer who is head of disability services in the Leinster region had a meeting with the family following a meeting they had had with the girl's new consultant in St James’s Hospital, a public consultant who happens to be an expert in her rare condition, severe epilepsy. The consultant said:

In my opinion, Clíona's current living situation needs to be reviewed from a safety perspective. She is living with a very serious medical condition in a social model of care without nursing care. She needs to be in nursing care.

Seán Sherlock (Cork East, Labour)
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I thank the Senator for raising this issue and apologise on behalf of the Minister of State, Deputy Kathleen Lynch, who is in the other Chamber. It is on that basis that I am taking this Adjournment debate. When the Senator replies, she might clarify whether it is the family's wish to have the person cared for in their home or a residential setting. According to the Minister of State's reply, she has been advised by the HSE that it very aware of the family's wishes to care for the young person in question in their own home. We might obtain some clarification, not necessarily in the Senator's reply today. I acknowledge her points on the potential to seek residential care.

For obvious reasons, we all want to protect the identity of the person concerned and I will not give the official answer, except to say the HSE's disability service in the local area has arranged a case review meeting in early December with her family and the relevant service provider.

I understand a previous meeting with the family was postponed as the HSE disability services manager had not had an opportunity to discuss her circumstances with the consultant neurologist. Every effort is being made in her best interests to meet the complex needs articulated by her advocate, the Senator. I hope the meeting which will take place in early December will provide clarity.

Mary Ann O'Brien (Independent)
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I thank the Minister of State for his reply, but I wished I shared his hope that there will be clarity. Last Friday the family heard from the residential care facility in Nurney that a meeting had been granted. They did not hear from the HSE and the person concerned has not contacted them yet. I am very glad that the HSE manager of disability services in area four, the Leinster region, is not working for me in Lilly O'Brien's because we would have gone out of business long ago. It was on 9 July that the family met the expert consultant who said that, in his opinion, the safety of the child was a problem. Now, golly gosh, it is proposed to hold a meeting on 4 December. Please, do not get my hopes up.

Let me clarify the family's wishes. They wish to save the State some money; they seek shared care in order that the little girl can live in residential accommodation somewhere in Dublin and they do not have a round trip of 120 km. They propose to take her on a Saturday and that she stay with them overnight and return on a Sunday. It is important that this little girl who has seizures that are life threatening be in a caring environment with a nurse and that is located near a hospital. This is urgent. I ask the Minister of State to convey my wish to the Minister of State, Deputy Kathleen Lynch, that I meet her in person to discuss the case.

Seán Sherlock (Cork East, Labour)
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Absolutely. The Senator can be assured that I will be talking to the Minister of State, Deputy Kathleen Lynch, this evening. I will ensure the concerns raised by the Senator are transferred directly to the persons in question in order that they can pick up on the points made. Please be assured that I will meet the Minister of State and convey to her the request made by the Senator, as the advocate for the girl in question, to meet her to discuss the case.

Mary Ann O'Brien (Independent)
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It is not just the little girl but also the entire family. Her mother, father and four siblings are distraught; their lives have been destroyed.

Seán Sherlock (Cork East, Labour)
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I acknowledge the point. That is a given.