‘DO I HAVE TO DIE FOR US TO GET RESPITE CARE?’
A CASTLEISLAND mother believes the only way her family might get the respite care they vitally need for their beloved son with profound special needs would be if she were to die.
Nicola Lawless makes the alarming claim after the HSE rejected her appeal for respite care for son Ben.
It’s not a macabre claim simply plucked out of thin air by the dedicated motherof-three, however. Just two months ago, Nicola was fighting for her life after succumbing to organ failure following complications relating to Swine Flu and Pneumonia.
“I shouldn’t be here. I ended up on life support in Tralee and had to be transferred to Cork.” With the help of the team in Cork and her own determination, Nicola stabilised.
It was recommended she spend up to three months recovering in CUH, but after nine days in recover Nicola had no choice but to return home to help husband Gareth look after Ben in the absence of emergency respite.
Still drained of energy and with a greatly reduced lung capacity after her life-threatening ordeal, Nicola is struggling with the job of constantly caring for Ben, and its taking its toll on Gareth too.
“It would seem that I will need to die to receive ‘emergency help’,” she said this week.
“Ben requires 24/7 care. He’s a fabulous young man, but he doesn’t sleep the night and often has to be attended to while going to the toilet and we just don’t have the physical energy to cope with it all week long.”
As many parents of children with special needs in this country have reported, circumstances were much better before Ben reached adulthoos.
“He had respite nearly weekly until the day he turned 18. Then it was gone,” Nicola explained. She and Gareth had spent two years trying to prepare for the ‘ transition’ in talks with the HSE on Ben’s future.
Last December, Nicola wrote to the local Children’s Disability office outlining the stress the lack of respite was causing her family. “Two months later I was on life support.”
“Things are very difficult now. I’m not working yet after the illness and my husband has to keep working to make the money...if I had died instead of surviving we would probably have received some help,” the desperate mum told The Kerryman. ONLY 12 beds are available in Kerry to provide respite services for adults with an intellectual disability, the HSE revealed this week. THE HSE is meanwhile blaming health watchdog HIQA in part for the current strain on the provision of residential respite services for adults with intellectual disabilities nationally.
In a response to a Kerryman request as to why the Lawless family’s appeal was rejected, the HSE pointed towards difficulties in complying with HIQA (Health Information and Quality Authority) criteria. Care homes and other facilities under the auspices of the HSE cannot be operated without HIQA clearance.
While the HSE said it ‘cannot comment on individual cases’, it said that due to HIQA inspections some houses that were previously used for respite can no longer be used among other concerns.