The parents of a young man with complex additional needs say they have been forced to ‘abandon’ him in order to access care supports from the HSE.

Ger was among the many listeners who contacted Lunchtime Live after Gayle Murphy yesterday told the show about the ‘inhumane’ lack of supports she has experienced with her own son.

She told Andrea she was forced to miss her own mother’s funeral because the HSE was unable to offer her respite support with her 21-year-old son Luca.

Opening the show this morning, Andrea said there was something about her story that really affected listeners – noting that many other people fear being in the same position.

She spoke to Ger who has two sons with additional needs because of a “very rare genetic condition”.

One is 23 and the other is 19-year-old; Ger says her older son is “doing okay” and “ploughing his own field” but they have struggled to look after their younger son, Jack.

“He was harming himself and his behaviour was extremely challenging,” she told Lunchtime Live.

“We flagged this about a decade ago, so we reached the point in August when he did significant damage to himself that we just did the unthinkable and, in the eyes of the State, we abandoned our son.”

The family had asked for respite care and when none was available, they had to leave him in an emergency respite facility - a situation she said is “breaking our hearts”.

“In the eyes of the State, if you don’t collect your child from a facility… you’ve essentially abandoned your son, your child,” she said.

“We never, ever in our wildest dreams imagined that we would be pushed to this point, that we wouldn’t see our son for 30 days.”

Safety

The family would love to take him home but they are so concerned for his safety that they feel the respite facility is the only place he will be properly cared for.

“We can’t take him home, we simply cannot take him home because things had escalated so badly over the last few years that we were afraid - and we did flag this - that he would die right in front of our eyes,” Ger said.

“Any night he would have a challenging behaviour, the next morning, we would stand outside his door for about five seconds before we’d open the door to greet him in the morning [because we were] afraid to find him dead in his bed.”

When Jack was living at home full-time, the family found it extremely difficult to cope and in a meeting with an HSE caseworker, Ger’s husband was upfront that the situation had badly affected his own mental health.

“My husband just looked at the caseworker straight in the face and said, ‘I can’t go back to the way things were… or I will take my own life.’ That’s what my husband said.”

Cost of care

Previously, officials have told them there is no money to pay for respite care - but Ger said the current situation is more expensive.

“All we want to do, is have a situation where we can care for our son in some way, in his own home and also have the respite as well - because that’s the only way to do it,” she said.

“He’s actually in a full-time facility now, which is costing more money… than we were looking for.”

In a statement to Newstalk, the HSE said acknowledged the "very difficult circumstances and challenges" that carers and their families face.

They said they were trying to "increase and maximise the availability of respite for all Disability Service Users" and there are times when it is not possible to provide respite care.

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Main image: Jack