A CARER WHOSE teenage son passed away last month is calling on the government to close a gap in the social welfare system upon the death of a disabled child aged 16 or over.

Tracy McGinnis, who lost her son Brendan Bjorn, aged 17, has proposed a reform to prevent family carers of children over 16 from being immediately cut off from supports.

In Ireland, if a child under the age of 16 who is cared for in their family home dies, Carer’s Allowance and Domiciliary Care Allowance are paid for another 12 weeks or three months.

However, when a child turns 16, they are entitled to Disability Allowance that is paid to their name, rather than the Domiciliary Care Allowance that is provided in the case of younger children.

If the child dies aged 16 or over, Carer’s Allowance is paid for another 12 weeks but all other payments stop immediately.

Three weeks after Brendan Bjorn’s death, Tracy McGinnis received a letter from the Department of Social Protection asking her to return a €208 payment that she collected the day after he died, sparking outcry at its treatment of a bereaved parent.

Minister Heather Humphreys apologised for the letter and said it “shouldn’t have happened”.

Now, Tracy is calling for social welfare supports to continue upon the death of a disabled child aged 16 or older being cared for in the family home in the same way as for those under 16. 

“After what has happened to me being cut off instantly of all social welfare supports (bar the half rate Carer’s Allowance for 12 weeks) after the death of my beloved 17-year-old profoundly disabled son, for whom I provided 24/7 nursing level care in our home, I have now examined where there is a gaping hole in the system when it comes to losing the person being cared for in the home,” she said.

“I ask this be changed immediately so other families don’t experience this additional hardship at such a heartbreaking time of bereavement.”

Speaking to The Journal, Care Alliance Ireland’s Senior Policy & Research Officer Zoe Hughes said it would be “very difficult” to argue against the idea of extending the period that allowances continue to be paid.

She described it as a “really difficult transition period” for parents to be both grieving for a child and transitioning out of their role as a carer.

“There’s definitely extra challenges that people face when their caring journey finishes, whether that’s for a good reason in that the person they’re caring for no longer needs care or it’s something like a bereavement or an entry into long-term care,” Hughes said.

Carers who lose a child are “in the middle of a very distressing situation” and may be relying on the income from social welfare payments, she said.

“The argument can be made that well, if a person has passed away, then that money should pass away with them, but I don’t necessarily think in this particular case and in similar cases that’s really that accurate, because there are going to be costs that will keep going even after the person has passed away by the nature of the significant medical costs,” she said.

“That doesn’t immediately end straight away. There are continued costs that will keep going after somebody passes away.

“And even just to make sure that the family themselves don’t have to worry and push themselves really fast to get into a paid working role that they’re not ready for or that’s not appropriate given [for example] that there may be other kids in the house.

“People need time to be a family together after something like that when their circumstances change so quickly.”

The Department of Social Protection did not respond to a query from The Journal asking whether it would consider the proposal.

Minister for Social Protection Heather Humphreys has said that Tracy McGinnis will not be required to repay the €208.

Speaking on Newstalk’s Anton Savage show on Saturday, Humphreys said the situation “shouldn’t have happened”.

“How anybody thought it was appropriate to send a letter to a grieving mother is beyond me,” the minister said.

We have to do better and we have to ensure it doesn’t happen again and all I can do is apologise.

Carer campaigners have long sought reform to the allowances and supports that the government provides.

Under Budget 2022, the government slightly relaxed the weekly earnings threshold to qualify for the means-tested Carer’s Allowance.

The allowance is given to some carers looking after someone who requires support because of age, a disability, or illness and depends on a person’s income and assets.

The weekly income disregard (the earnings that are ‘disregarded’ in an application for the allowance) increased from €332.50 to €350 for a single person and from €665 to €750 for a couple.

The amount of capital and savings disregarded rose from €20,000 to €50,000. 

However, the changes to the income disregard rates were far below the levels that campaigners were calling for back in 2019.

Over the coming days, the Care Alliance is marking National Carer’s Week in honour of the nearly half a million people in Ireland who provide some level of care to a family member.

Hughes encouraged the public to take some time to offer support to any carers they know.

“Maybe take this opportunity this week to say, ‘hey, here’s some cake’, or, ‘I’ll sit with whoever you’re caring for a couple of hours while you go to a meeting or an event or the cinema’ or whatever it is to make sure that people can have a break.”