In adoring her youngest son, Sam, 67-year-old Mary Marmion is like so many Irish mothers.
"When he is in good form, you wouldn't want to be with anybody else in the world," Mary told Prime Time.
But, when Sam is not in good form, Mary has concerns for her own safety.
Sam O'Sullivan is autistic, has an intellectual disability, and also epilepsy. He is now 27 and still lives at home in Kilcoole, Co Wicklow. Although he has a few words, Sam is non-verbal – and this inability to communicate affects his behaviour.
"He can get very, very frustrated if he's not being understood and how he expresses that is in his behaviour, which can be very aggressive," Mary said.
Since he turned 18, Mary has tried to find Sam long-term housing with full-time supports.
The closure of day services during the pandemic meant Sam's behaviour deteriorated. The lack of a structured programme with appropriate behaviour management increased his day-to-day stress levels and frustrations.
Sometimes, this aggression leads to self-harm: Mary said Sam has put his head through windows, mirrors and plasterboard walls and, on one occasion, even through a plate-glass shop window.
Two years ago, week-on, week-off respite was offered as an interim solution while long-term care was being arranged.
But respite is not the same as a structured programme – it is unstructured and does not provide anything like the range of activities and therapies Sam needs.
"He needs to be in a residential placement with a proper behaviour support programme, and staff who understand," Mary said.
This lack of structured support has led to an increase in Sam's frustration and, therefore, an increase in aggression. In recent times, Mary has even had to call the gardaí because she has been so afraid.
One incident last year led to serious injury. Mary told Prime Time how she was driving with Sam sitting in the back seat as usual and, "for some reason, he just lost it".
He kicked through the gap between the seats and struck Mary in the head.
She hadn’t realised that she had been seriously injured until later that week when she went to have a routine eye test. The optician told her that she could not go anywhere, as she had a detached retina.
In February 2021, Mary reached what felt like a breakthrough when Wicklow County Council offered Sam a house.
After a lot of discussion and countless meetings, the HSE agreed to fund the services Sam needs, while a service provider agreed to take on the running of the house with appropriate support staff. Two other compatible young men were to complete the household.
But over a year later Sam is still at home and the house lies empty. Mary said that promised timelines have come and gone.
"We were told February this year, then we were told April this year, then we were told June," she said.
In a statement to Prime Time, the HSE said that while it could not comment on individual cases, it was aware of the delay in the opening of the house by the service provider, Sunbeam House Services.
It said that it recognised the upset this delay has caused families awaiting a place in the house.
Sunbeam House Services, the HSE said, "has recently reported challenges with the recruitment of necessary staff to facilitate the opening of this house".
"As a result, we are exploring all other options to progress the opening of this house in 2022."
For its part, Sunbeam House Services told Prime Time that it deeply regretted that it had been unable to commence this service and provide accommodation to the clients in need of these services.
"We fully accept the concerns and expressions of dissatisfaction being expressed by the families," it said, noting it had been unable to recruit appropriately skilled staff despite targeted recruitment campaigns.
"We are in ongoing discussions with the HSE and we have met with the three families involved, with a view to finding a resolution to this entirely unacceptable delay as soon as possible in the near future.
In the meantime, Mary told Prime Time that she feels desperate – but also very angry. Sam is home with her every second week and doesn't understand what's happening to him.
"He gets frustrated, and then we get into the spiral again," she said.
"We are so close to it and there seem to be endless, endless obstacles and delays and time is running out."
