Laois child with genetic condition forced to travel outside county for pre-school

A 2-year-old child with a rare genetic condition in Laois is being refused a nurse's aid if she attends her local pre-school for children with additional needs.

Cllr Tommy Mulligan has requested that Laois County Council write to the HSE and the Minister for Health, Jennifer Carroll MacNeill, to find a resolution to the situation. 

The Portlaoise councillor told the council that a young girl from Ballybrittas, who he said he would not name for privacy reasons, suffers from CHARGE Syndrome which is a rare genetic disorder that affects multiple parts of the body and leads to a wide range of developmental and mental challenges. 

He added that the girl is also deaf and communicates primarily through sign language. She is also peg fed and has a tracheostomy tube to help her breathe. 

Cllr Mulligan explained that the HSE currently provides a nurse's aid for the girl for 18 hours a day from Monday to Friday and then 20 hours a day on Saturday and Sunday.

The girl recently received a place in Kolbe Pre-school in Portlaoise which is managed by the Muiríosa Foundation and funded by the HSE. The preschool offers specialised support for children with a global developmental delay which may include additional neurodivergent, physical and/or complex needs. 

However, the HSE have told the parents that they will only provide a nurse's aide if she attends a special school under the Early Childhood Care and Education Scheme. 

Cllr Mulligan said: "The issue is that the HSE are refusing to provide a nurse's aid for this young girl if she attends Kolbe Pre-school. What the HSE are saying is that they will provide help for this young girl if she attends a special school under the Early Childhood Care and Education Scheme.

"The closest two schools under this scheme are Roscrea and Kilkenny which would be roughly an hour or hour and a half from where this girl is living with her parents."

He told the council that the parents of the child, who spent almost her entire first year in hospital, want her to attend Kolbe Pre-school in Portlaoise and to not have to travel over an hour outside of the county.

"You can just imagine the anger and the frustration that the parents are feeling with this whole situation because the HSE are already paying for a nurse's aide. If this girl is at home, the HSE pays for the nurse's aide for all those hours as I said. They're paying for the care at home and if the girl goes to Roscrea or Kilkenny. If this girl goes to mainstream, which she will when she's 4 or 5, they will pay for a nurse's aid then too."

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However, they will not pay for a nurse's aide at Kolbe Pre-school as Cllr Mulligan said it's run by the Muiríosa Foundation.

Cllr Mulligan told the council: "In my view, and in the view of the parents, all they're doing is taking a nurse's aide from one premises and putting them in the same working role in another premises."

He appealed to Laois County Council to write to the HSE and to the Minister for Health requesting that any child attending Kolbe Pre-school in Portlaoise who has been assessed as needing the support of a nurse’s aide on a daily basis be granted that support without delay.

Funded by the Local Democracy Reporting Scheme