An exhausted mother who is not getting home-care support for her son who is living with a rare genetic condition says her family is being failed by the HSE.
16-year-old Kielan Kenny suffers from 22q Deletion Syndrome which can involve heart, immune, learning, speech, and behavioural difficulties.
He also has autism, dyspraxia, kidney issues and has had three major surgeries for scoliosis.
The HSE has failed to source the family any homecare support for Kielan and the family has been placed on a minimum nine-month waiting list for respite services.
On Newstalk Breakfast this morning, Kielan’s mother Karin said the HSE failed to offer her son the care he needed when his condition started to deteriorate in his early teens.
She said children with 22q can often function well enough to “get part-time jobs and live a comfortably normal life.”
“With Kielan’s condition he didn’t get the proper help in time and now he has regressed,” she said.
“You know, his cognisance has declined and because he didn’t get proper mental health support at the time …
“He was pushed between the disability team and CAMHS (Child and Adult Mental Health Services) with no one taking responsibility for him because he was too complex.
“So, five years down the line, we don’t have the child we had a few years ago.”
Homecare
Karin said she had to give up work to become a full-time carer and the stress of the situation is having a huge impact on her family.
“To tell you the truth we don’t have a family life,” she said. “We can’t go out together as family. One of us always has to be at home with Kielan.
“My husband and I never get to go out together. My son Aaron has to sit the Leaving Cert with all that’s going on. There is no support.
“It’s such a stressful time to go through a Leaving Cert. Aaron just doesn’t get a look-in because we are always continuously busy with Kielan.
“It is a 24-hour job. He is always in the shower. He leaves the emersion on. He gets frustrated if the water isn’t hot. He wants to go for drives all the time. He paces around. He doesn’t sleep at night. He is on the go 24/7, seven days a week.”
Treatment
Karin said the health service has not admitted to any failure to treat Kielan on time.
“No, they won’t,” she said. “Even though, in my opinion, his regression has been caused by their lack of intervention on time and it is the opinion of paediatricians in Crumlin Hospital who have said that in a letter to CAMHS agreeing with my opinion.
“But they haven’t ever acknowledged their delay in getting the help in time.”
Support
Karin said she can’t ask family of friends for support.
“To bring a family member into the house … If he doesn’t get his way, he could get unsettled and you know, have a meltdown,” she said.
“Nobody can help us at the moment. It is just myself and my husband and that is it. There is no one else.
“We need some help so we can try and put our family back together. Try and put the pieces back together.”
HSE
In a statement the HSE said it has “contacted all approved home support agencies” seeking support of Kielan but “unfortunately to date no provider has the capacity to fill the approved hours”.
It said it will continue to engage with service providers to find home care support for the family.
It said it is “liaising with the family and other agencies regarding alternative outreach and home support options”.
You can donate to a charity fundraiser for the family here.
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