Meet Paul O’Sullivan.
Paul is non-verbal autistic. He spent 36 years of his life looking at four walls in a State care unit. On November 28, 2013, Paul, aged 49, finally got out thanks to the determination of himself and his sister Marcella. He now lives in Ennis in a home he can call his own, in a supported independent living situation. Where 10 years ago he suffered with dramatic fluctuating weight and fear of the outside world, now he has freedom — a quality of life. He’s even twice taken part in the Clare People 10k. Meanwhile, the institution he was in is in the process of being shut after a HIQA report found it was ‘no longer fit for purpose’. This report came about after a battle spearheaded by Marcella.
To get to where he is today Paul borrowed his youngest sister’s voice — guiding her in what he needed to do to help him without words.
To get to this point, the struggle has been tough and the road has been long.
Paul was born with anoxia — a lack of oxygen to the brain — at home on the north side of Cork city in a family of seven children. At eight years of age, he ended up in ‘the system’, being placed in a five-day residential facility.
His sister Marcella takes up the story, “They started him on medication at that point.
“He stayed there until he was 16 and they slowly transitioned him to adult care, and at the age of 18 he went into adult psychiatric care.”
Marcella explains that at this stage in his life, Paul’s diagnosis was ‘challenging behaviour’ and ‘self-injuring behaviour’. “Full stop. Nothing to do with the autism.” This is when he was moved to a lock-in high dependency unit where the only intervention was medication. Marcella explains that the staff were not trained appropriately to care for Paul, failing to provide him with the tools to write, sign or communicate with ‘picture exchange’. “Can you imagine how frustrating and frightening that could be for anyone in his shoes,” she says.
In 1990 at the age of 23 Paul was moved to Grove House, a smaller unit of 32 residents.
Marcella tells The Clare People, “He was in a lock-in high dependency unit. He had nothing in his room. Nothing. The first time I was allowed into his room was 2010. I literally would go to a locked door and I wasn’t allowed past it.”
He was basically trapped for 36 years and it had huge impacts on him. But at the same time looking at him today, he has a choice to go out of his own house, he is now being recognised for who he is and for his ways of communication. He doesn’t have outbursts anymore, he doesn’t self injure.
In 2001 Marcella began highlighting her concerns over the living conditions and care afforded to her brother at Grove House, taking her battle to the media and HIQA. She strongly believed that he never belonged in a unit like that, explaining, “Because they’re deemed challenging they’re put in there.” He was in there for 36 years, developing a crippling fear of daylight, noise and the outside world.
“He went down to five stone and then he went up to 15 and a half stone. It was the medication. He was looking at blank walls — he wasn’t getting out much.”
In 2007 Marcella moved to Ennis where she opened a dance school, constantly driving between Ennis and Cork when she would take him out for day trips and overnight stays at her new home in Clare. This was a huge turning point in her relationship with Paul.
Marcella says that Paul had to begin rebuilding his life, having regressed from the eight-year-old who went into the system.
“I would be up all night with him, trying to get to know him. I remembered the eight-year-old brother I had, that’s where I took it from. Over time he started to trust me and I could see the change in him, starting to embrace the outside world and enjoying it.”
In 2012 Marcella made a decision to close her dance school to focus on Paul. She was on a one-woman crusade and finally, on November 28, 2013, Paul got the move that they had dreamed of for so long ahead of a HIQA report which justified Marcella’s long-running concerns — more than 30 years after Paul was moved into the unit. Paul was finally recognised as non verbal autistic.
In 2014, the HSE released a statement welcoming the HIQA inspection report on Grove House, located on St Mary’s Health Campus in Cork city.
“The HSE has acknowledged that the service at Grove House is no longer fit for purpose and has been working collaboratively with HIQA to close Grove House on a phased basis,” said a spokesperson on the report, which resulted in a “comprehensive action plan” being implemented to address immediate improvements.
Paul, for his part, now has his own home with 24-hour one-on-one care. As Marcella explains, it’s ‘just the simple things’. Getting a cup of coffee, going out for a walk, going for his shopping, buying his own clothes, washing his own clothes. “Just everyday things, but to him it’s freedom.”
Marcella admits that it’s been a difficult process however she refuses to regret lost time, instead looking at the present and future of Paul’s life. And for herself, Marcella can start rebuilding her own life.
“He was basically trapped for 36 years and it had huge impacts on him. But at the same time looking at him today, he has a choice to go out of his own house, he is now being recognised for who he is and for his ways of communication. He doesn’t have outbursts anymore, he doesn’t self injure.” This is down to the fact that he is now being listened to and is being heard, explains Marcella.
“As much as there is a negative of the journey, there’s a huge positive because he has proven the fact that he was hurt and he’s been listened to. There’s huge changes in him alone.”
Marcella explains that her brother understands everything around him and communicates through his hands and facial expressions. Once given the time to learn this ‘communication passport’, Marcella says, people will understand Paul.
In the words of his sister, Paul is a ‘very much his own person’. A real personality full of charm.
She adds, “It doesn’t cost money to listen, observe and hear someone who is non-verbal.
“Paul is very much his own person. He has a fabulous, huge personality, he’s a charmer, a rogue, but at the same time he has huge spirit. He’s a survivor.”
Looking forward, Marcella and Paul want to see education and funding put in place so that nobody ends up like Paul, regressing in a a system which doesn’t cater for their needs.
She adds, “It doesn’t take much to listen, observe and hear when someone needs your help. I’m sorry he suffered all those years but together we challenged to make a true change because he wasn’t a prisoner but a person with specific needs. To Paul, thank you for your strength of character and using my voice to be heard finally.”