A big worry for Moira Skelly is who will care for her daughter when she falls into bad health or dies.
Ciara, 21, was born with intractable epilepsy and cerebral palsy and was later diagnosed with developmental delay and autism.
“Mentally, Ciara has never developed beyond the age of two so, although she is 21, she is still in nappies and has to be washed, dressed, and fed. Everything has to be done for her,” said Moira.
Moira was at the launch in Dublin yesterday by Family Carers Ireland of their assessment of what the National Carers’ Strategy has achieved for family carers since it was launched four years ago.
When the strategy was introduced, it was cost-neutral and limited in what it could achieve. However, with the economy improving, Family Carers Ireland is now calling for a funded strategy.
Head of communications with Family Carers Ireland, Catherine Cox, said that even if €30m was spent on priority areas over the next three years, it would allow better supports to be provided for carers.
“If we could target funding in the key areas where carers are feeling the most pressure, we believe it could have a positive impact on carers’ lives,” she said.
Moira, from Walkinstown, Dublin, said her other children were a great help when they lived at home.
“Obviously, it is a bit more hands-on for my husband and I and a bit more hectic,” she said.
“Ciara is in good health but does not sleep at night because she gets a lot of seizures. A lot of the time she would wake up in the early hours of the morning and stay awake from then on.”
Moira would love for the Government to ring-fence funding for people like Ciara when they are adults and their parents were too old to look after them.
Ciara is on a waiting list for residential care, but it could be years before she gets a place.
“We are now at a point where one of us could fall into bad health, and the other would not be able to continue caring for Ciara,” said Moira, adding that funding should be made available for people like Ciara so their parents could plan ahead and not worry so much about the future.
“But we are nowhere near getting an agreement on a planned placement. It is not even on the radar,” she said.
“When parents reach their sixties it is usually when their children have grown up, and they have time for themselves. But we don’t have a minute; we don’t even get a night’s sleep.”
She did not want to have to wait for a crisis to arise before Ciara got the care she needed.
The National Carers Strategy Monitoring Committee has stressed that home and community care will remain underfunded and insufficient until it is put on a statutory footing similar to that of the Nursing Homes Support Scheme.
Family carers such as Moira contribute 6.2m hours of unpaid care each week, saving the State €4m a year.
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