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.
The consultant believes she is not safe. I refer again to her four injuries since she has been in care. At the meeting on 8 July the person in charge of disability services said she would urgently seek a meeting with the consultant. It is nearly Christmas and there has been not a dicky bird since. This is unacceptable. I need to meet the Minister for Health, Deputy Leo Varadkar, or the Minister of State, Deputy Kathleen Lynch, to dicuss this. I am going to get a result for this little girl and her family by Christmas and I am not asking much. There must be a place for her in Dublin.