Ardclough's Aisling McNiffe Calls For More Support For Carers In The Upcoming Budget

"You can't do anything - you can't commit to anything. You have to be ready at the drop of a hat to go and collect your child, bring them to appointments [...] the list goes on and on and on", said Aisling on this morning's Kildare Today

A full-time carer, Ardclough resident and well-known contributor to Kfm is calling for more support in the upcoming Budget.

Aisling McNiffe is a full-time carer for her 19-year-old son Jack, who receives frequent and prolonged hospital care from Children's Health Ireland in Crumlin.

Jack is a wheelchair user with down syndrome and a rare autoimmune disease, and has a severe intellectual disability.

He is tube-fed, and has chronic lung disease, as well as mild scoliosis and hip dysplasia.

Jack has 14 different medical teams at Crumlin, and requires around-the-clock care.

Speaking on this morning's Kildare Today show, Aisling says the carer allowance is nowhere near enough to cover Jack's required care.

"Our children require around-the-clock care at home, and when you're in the hospital with any child - whether they have a disability or not - you need to stay with them 24/7", said Aisling.

Aisling McNiffe (middle), who was named Kildare Family Carer of the Year 2023

Children In Hospital Ireland is a charity that are proposing that the Government introduce financial assistance to support families with the non-medical costs of having a child in hospital.

Aisling is the sole-carer for Jack, and said it's costly to run the household.

Aisling receives carer allowance of €248 a week, but believes a payment of €350 should be made instead and that the carers allowance should not be means tested.

"If you're caring 24/7, you are doing a job. Yes, it is your child and you are your child's parent, but you cannot work outside the home.

"You can't do anything - you can't commit to anything. You have to be ready at the drop of a hat to go and collect your child, bring them to appointments [...] the list goes on and on and on".

She spoke of how she ran into trouble last year as Jack was hospitalised for 8 and a half months, and received help from two charities.

"It's really hard to ask for help, and I just don't think that people should have to do that.

"We rely on a lot of charity and it shouldn't be like that".

Aisling is also advocating for the proposal by Children In Hospital Ireland, explaining that Jack will not be in a children's hospital forever and will require the same level of care in an adult's hospital.

"For us, this problem isn't going to go away, it's going to be this way forever".