‘We are getting no support and Joseph has regressed, he knows everything has stopped’

The frustrated father of a teenager with special needs from Duleek says he feels his son has been deserted by the HSE after losing his "lifeline" services after turning 18.

Joseph Darling who suffers with autism and needs 24/7 care has "fallen through the cracks" after being discharged from children disability services to adult services in July according to distraught dad, Raymond, who says despite repeated calls to Meath Disability Services he and his wife Carmel who is his full time carer have received no date of when he can access supports again.

Raymond says Joseph, who had been a student in St Mary's Special School in Navan has lost home care support and respite services and has regressed in recent weeks.

"He had 15 hours a week home support and twice a month guaranteed respite. More was available if cancellations arose as they recognised the need," says Raymond.

"We were told months ago that everything would be seamless in the transition and that home support wouldn't change. The first thing that happened was that home support couldn't find anybody for us because they said they had a shortage of people. So we said fine at least he was still going to get his respite and his day schooling. Then everything went quiet and nothing happened."

The drastic change in routine has had an negative impact on the teen as the dad of three explains:

"We are getting no support and he has regressed because he has recognised that everything has stopped. He's a creature of habit with a lot of kids with autism are and he doesn't understand what's happening, it's leaving him very frustrated."

Raymond says he would just like clarification on what supports are available to Joseph who was diagnosed with Autism at six years old.

"I'm not looking for miracles," he said. "The HSE are telling us that these services should be there and all I want is to get them. If they tell me they are not there and there is nothing they can do I will accept that."

The youngster's behaviour is regressing due to frustration at losing his vital structure according to the Duleek dad and it is having an effect on the whole family.

"My wife has to get three discs in her back fused together and is awaiting spinal surgery and is struggling to manage Joe who is now 6ft tall.

"My two other children who are thirteen and eight and worried and always asking what they can do to help. I tell them go and play with your friends, that's how you can help. They should not have to worry about things like this, it's heartbreaking."

It has been a challenging road for Raymond and Carmel who struggled to get a diagnosis for their son in the early years.

"Joseph's development was slow but we put it down to medication he was prescribed for epilepsy. Eventually he was assessed.

"They said at two, he was nine months behind. So I said that's fine at 20 he will be 18," said Raymond, adding "They said no, at 20 he might only be two years of age mentally.

"That killed me and Carmel. We were devastated. But at the end of the day he was still our son. Over the years we never got a diagnosis for Joseph's delay which meant most assistance came unplanned. The HSE seems to need a label to diagnose a child. Without this they don't need to help."

Raymond said that Joseph fell between two stools as his diagnosis was not straightforward.

"In Ireland you don't apply for anything, you appeal everything. It's a given that we don't get supports. You are denied everything to which you have to appeal adding on more time to the process.

"Originally we got nothing because strictly speaking he does not meet the three tests of autism but every specialist used to give us emergency help knowing he was autistic.

“One of the best agencies was Enable Ireland. They actually cradled and looked after him better than anyone.

“A speech and language specialist in Temple Street told us he did not meet the full diagnoses and told us from that day we would always have trouble.

"We finally got a diagnoses and everything changed overnight. Now since reaching adulthood we are regressing to the dark ages.

“I once asked a priest why God was so bad to Joseph.

"He actually told me I had it all wrong. God gave me my very own angel. He will never worry about mortgages, money, bills, getting dressed, getting washed.

"Joseph is beautiful and catches everyone's attention and he has come on leaps and bounds but I fear for the future."

The HSE has been contacted for comment.