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'Unfair' 'By penalising us, they’re penalising her'- Mum to three-year-old with special needs calls for carer's allowance means testing to be scrapped

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Tracy Carroll is among the many full-time carers set to benefit from an annual increase of €150 to the carer’s allowance announced in today’s budget.

But the disappointed mum to three-year-old Willow, who has profound special needs and needs round-the-clock care, was hoping that means testing of the allowance would be scrapped.

Because her husband John is working, means testing means that the family receives just €72 per week out of the total allowance of €219.

Tracy firmly believes that a carer to an incapacitated child should automatically qualify for the full allowance.

“What we were hoping for was that family carers would be seen as working from the home. We’re saving the state billions a year. We’d like to see a stamp for all carers, that they would be recognised as working and be eligible for a pension.

“By penalising us, they’re penalising her. By not giving me the full carer’s allowance they’re penalising my daughter. I worked from the age of 16 to 41 and paid my taxes, John has worked his whole life as well, never relied on the state, and now that we need support it’s not there.”

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Tracy, also mum to Willow’s brother Noah, gave up work to look after her little girl full time.

“My main focus is on children who are incapacitated like Willow. If I left Willow on her own for 24 hours, she wouldn’t live, it’s as simple as that.

“My argument is that the parents of an incapacitated child shouldn’t be subjected to a means test. They should automatically qualify based on the needs of the child.

“Our children are individuals, they have their own needs. She’s is being penalised by us being penalised as subject to a means test.”

Tracy has long been campaigning for changes to the assessment system for carers, which she believes is unfair. She feels that outgoings should also be taken into account.

The three year old needs round-the-clock care to manage the many issues she was born with.

Doctors told parents Tracy and John, from Kells in Co Meath, that their daughter had no hope of survival, such was the profound nature of the multiple issues she was born with.

She has level five cerebral palsy which effects all of her limbs, she has epilepsy and is fed through a peg. She also has global developmental delay.

In fact, she was so ill in the first days of her life that doctors did not expect her to survive. She was taken off life support when she was two days old and was not expected to live.

Her mum says the last year has been very difficult as she and her family noticed the missed milestones that other children would reach as they become toddlers. She described that time as “a grieving process”.

Tracy says Irish children’s charity Jack & Jill has helped them to cope through some very challenging times.

The nationwide charity offers support, advocacy and an in-home nursing service to help children and their families under the age of five years who have a severe neurodevelopmental delay.

“We wouldn’t have survived our first year without them. We were terrified when we brought her home. I didn’t know whether I was coming or going. That’s the difference with Jack & Jill, they’re there for your family and they become part of your family. They’re there for you no matter what.”

Online Editors