Ciara Skelly, 21, was born with epilepsy, autism, and cerebral palsy.
Confined to a wheelchair, she has the mental age of a two-year-old, according to psychological assessments.
Ciara requires 24-hour care in her home in Walkinstown, Dublin, from her mother who is responsible for washing, dressing, and feeding her as well as changing her.
“I have been caring for her for 21 years, and I will probably care for her for the rest of my life,” said Moira Skelly.
Yesterday, she was one of three women who spoke outside Leinster House about the importance of home care in their lives.
Seventeen support organisations gathered to represent families who say they are struggling because of the lack of home help and home care services.
The family has four hours of respite care a week during which a care worker visits their home and helps with bathing Ciara.
It also allows Moira to run errands and catch up on housework while knowing her daughter is safe.
“If I even had an extra hour, it would be so much easier,” she said.
Representatives from Family Carers Ireland, Care Alliance, MS Ireland, and Age Action, as well as 13 other organisations, called for increased investment in home care in Budget 2017.
“As a society, we are failing to provide these people with the support they need,” said the group.
Home care is vital in allowing 200,000 family carers deliver nearly €4bn worth of care annually.
“We need a statutory right to home care that takes away this fear, and supports family carers to care with dignity and confidence in their own homes,” said Moira.
Shirley Thornton also spoke at Leinster house. She acts as a full-time carer for her mother Eva, while also raising her own 10-year-old son.
She took on the role of caring for both of her parents but when her father passed away recently, her family’s care time was reduced from 20 hours a week to 10 hours.
When she tried to get her mother’s hours increased, she was told the budget in her area was exhausted. Shirley said she is grateful for the time, but it is not enough.
Recent research shows more than half of older people could remain in their own homes instead of going into long-term care if more home support services were available, the group said.
Meanwhile, Sinéad McArdle from Louth was diagnosed with relapse and remittance MS in 2005. Her condition has become worse, since her initial diagnosis. She called for home care to become available to everyone who needs it. She also called for more time to be allocated to those affected by cuts in previous years.
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