As a resident of Ballyhea in North Cork, Brenda O'Connell Barry is used to the word 'no'. For years, the 'Ballyhea says no' marches against government repayments to bondholders occupied locals, and as a full-time carer to her son Fionn, Brenda hears the word all too often.
Last week, it was 'no' to a request for additional home nursing hours. Now, it seems it is 'no' to the idea of a waste waiver, something that would have put a small but welcome dent in the family's monthly outgoings.
Fionn, six, is the only child in Ireland with the rare genetic NACC1 condition. It can cause epilepsy and extreme cerebral agitation.
"He can cry, scream, kick, tear at his face and hair up to nine days at a time," says Brenda. "We get little or no sleep during that time; he is literally 24-hour care."
Fionn is unable to sit up or stand and requires constant monitoring. He can take meds and fluids on board through a stomach tube, and in one fantastic development can now take pureed food through his mouth — "which we were told he would never do", says Brenda.
Brenda, a former Cork CarePlus Carer of the Year, and her electrician husband, Trevor, have already had to fundraise for essential equipment such as Fionn's wheelchair (€6,000), a special seat (€2,000), and a specially altered buggy (€2,000).
"Everything is thousands and thousands of euros," she says. "If you want something from the HSE you have to wait years and years and years."
While an increase of €150 in the annual carer's support grant announced in the budget is welcome, Brenda believes it is effectively wiped out by the carbon tax, while the family's domestic bills are considerable.
"The house is going 24 hours a day. Someone is up here all the time, the heating is on, we have double the amount of electricity and heating."
The bin bill is €45 a month, much more than that of other families due to Fionn's pads and medical packaging and syringes. Brenda echoes the refrain from Carers Ireland regarding the amount of money saved by the State through the work of family carers. A waste waiver would have been a small show of solidarity, she believes.
"Any little thing we get we are grateful for it," she says. "The majority of family carers are put to the brink financially, most of us only have one person in the house working, so any of us would welcome it with open arms."
Some waste providers around the country do have special arrangements in place, but not all — it is, in effect, a postcode lottery.
"We should all get it," says Brenda, adding that, for carers, "we are all in so much debt now, we are living week to week."