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'I can't take care of autistic son with just two hours help'

THIS single mum, who is facing home repossession because she gave up her job to be a full-time carer for her autistic son, has been awarded just two hours a week home-help by the HSE.

Jocasta Clarke (42), from Navan, Co Meath, recently applied for home support. She has been the sole carer for her son Zenon for the past eight years.

Zenon (8) was born with a rare genetic disorder called Treacher Collins syndrome, which affects about one in every 50,000 people. The condition affects his hearing and bone structure in his face.

He has also been diagnosed with autism, anxiety disorder, hyperactivity and obsessive compulsive disorder. He also has issues with communication and is incontinent.



"Zenon has behavioural issues both at home and at school. He has to have up to three SNAs [Special Needs Assistants] in the autism unit in Trim where he goes to school, to manage his behaviour," Jocasta said.

"I have cared for Zenon mostly by myself. In the past I have had an au pair, but Zenon is now just too big and strong for mainstream care and can bite, scratch, kick and spit."

"I gave up my career as a photographer to look after him, with a carer's allowance of just over €262 a week."

Jocasta also has a 10-year-old daughter, Phaedra, with whom she feels she can't spend enough time because of Zenon's needs. "Her life is being compromised," she said. "It's very hard to help her with homework.

Zenon also has no sleep pattern so could be awake a few times each night."

Last week, Jocasta received a call from the HSE sanctioning two hours a week in half-hourly slots. "I can't get my head around that they think this is acceptable," she said.

"I've been told it's better than nothing. It's not really because my son has issues with strangers coming and going, especially if they are only going to be here for half-an-hour at a time."



To top it all, Jocasta is now also facing repossession of her home at Balreask Manor because she can't keep up mortgage repayments. "I'm not sure how much longer I can do this alone," she added.

In a statement, the HSE said that while it "cannot comment on individual patients and clients, each request for home support hours is individually assessed and HSE seeks to provide the most appropriate level of assistance within the resources available, and given the demand on those resources".