Looking out for Liam

LIAM Brunskill likes making things. In his bedroom at the residential school where he has lived for seven years, the 19-year-old proudly shows us a cup, the colours bright, cheerful and eye-catching.

“Did you make that, Liam?” his mum, Mandy, asks.

Liam turns the cup over in his hands. “Yes!” he says.

“Did you paint it?” Mandy asks. “Yes!” says Liam. “Red, blue, green, yes!” He shows us his name painted on the bottom. “Liam Brunskill, yes!”

Liam, whose family live in Clifton Moor, York, has severe autism, obsessive compulsive disorder and a learning difficulty.

His condition was so severe that, seven years ago, Mandy and her husband Rod decided to send Liam to live here, at Wilsic Hall School, in quiet countryside near Doncaster.

It was heartbreaking, but Mandy has no doubt it was the right decision. Liam was 12, getting bigger and stronger and the family were increasingly unable to cope.

His life revolved around rituals. He compulsively stroked his mum’s hair; he would only cross the road when the red man lit up, pulling whoever was with him into traffic; his toiletries had to be set out in a certain order; he would only eat some foods if they were arranged in a particular way; and he wouldn’t let his sister Amy eat noodles.

If any of the rituals were broken, he would become hugely distressed, screaming for hours.

Seven years on, Liam is calm and cheerful as he poses for a photo hand-in-hand with Mandy and Amy. He is proud of his room – happily showing strangers around – and is clearly at home at Wilsic Hall. The grounds are extensive and quiet; he seems to get on well with staff; he has friends; and above all, he has “activities”.

At nearby Hesley Village – a purpose-built supported community for people with learning disabilities run by the Hesley Group, which runs Wilsic Hall – he can make jewellery and pottery, join an IT club, visit the cinema, go dancing, and even canoeing.

“Dancing with Hilary, yes!” he says, when his mum mentions activities. His face lights with a smile. “Café there, yes! Cinema, yes! Canoeing at River Don, yes!”

However, Liam’s life is about to change. Now he has turned 19, he has to leave Wilsic Hall. But where should he go?

His family want him to live in supported accommodation near Hesley Village. It’s an option the Hesley Group has offered them, and he could continue to be cared for by staff he knows, see his friends, and carry on with his activities.

City of York Council disagrees, however. Since Liam became 19 the council, not Liam’s family, is legally responsible for him. And it wants Liam in supported living in a purpose-built bungalow for young adults with autism in York.

Mandy is distraught.

It might seem a good thing for him to be nearer his family, she admits.

But he would be uprooted from everything he knows, taken away from his friends and activities, and forced to share a house with other adults with autism that he doesn’t know.

Worse, she says, the accommodation is near a busy main road, in a city, when Liam is used to rural peace and quiet.

Liam still finds it difficult to cope with change, and reverts to repetitive behaviour if distressed.

“If somebody doesn’t understand how to deal with him, and he is forced to live with someone he doesn’t know or trust, then he would regress back into his rituals,” Mandy says, on the verge of tears. “We don’t want him to go back to how he was before.”

More than 1,000 people have signed a petition supporting the family. And while The Hesley Group, which runs Wilsic Hall, is unable to comment in detail, a member of staff who knows Liam says: “He’s been here for seven years. He’s got connections here. He’s in a rowing club and there was even talk of putting him in the Doncaster Regatta. Pull him away from all of this, and he may never get back again.”

Liam himself has made it as clear as he can that he wants to live near Hesley Village.

With his mum beside him, he goes through a set of prepared questions, reading them out and then giving the answer himself before writing it down.

“Does Liam want to live … in York? No!” he says. “Does Liam want to live in a house near Hesley Village? Yes!”

The problem is, Liam is legally held incapable of making an informed decision. As he goes through the prepared questions, he peeks at his mum to see if he is saying the right thing.

Nevertheless, he does seem perfectly capable of expressing a preference. He starts listing the people he knows at Hesley Village. “I like Michael, Shaun, Chris,” he says. And the way his face lights up when he talks about dancing with Hilary is unanswerable. It matters to him.

Even if the council believes Liam is incapable of making a fully informed decision, they should at least listen to his preferences, Mandy says. “Just because he lacks capacity doesn’t mean he shouldn’t have a choice. York council have not listened to him.”

So why, in the face of such a clearly expressed preference, is the council so determined to bring Liam back to York?

The authority says it is not able to comment in detail for reasons of confidentiality. The authority’s director of adults, children and education, Pete Dwyer, would only say that the case had been investigated by the Local Government Ombudsman and no maladministration had been found. “Further, the council financed the instruction of an assessment by an independent social worker,” he said. “The terms of the instruction were agreed with the family. The assessment concluded that the council’s recommendations for Liam’s future care were entirely appropriate.”

The ombudsman was called in when Mandy complained about the council’s handling of the case.

Her complaint was not upheld. And the ombudsman’s report sheds some light on the council’s reasoning.

It was not, or not mainly, because of cost. Hesley Village had been rated only “adequate” by the Care Quality Commission (CQC), the council argued, and it was also worried about “safeguarding concerns” there.

Both Mandy and the Hesley Group, however, insist that these concerns are out of date. Hesley Village is now “fully compliant” with CQC standards, a Hesley Group spokesman said.

At the heart of the case is the question of who is best placed to decide the future of people like Liam: his family, who love him; or the local authority, legally responsible for his care, with a team of professional care staff and assessors to help.

The dispute has now dragged on for more than a year, through a series of assessments, a “best interest” meeting and that referral to the ombudsman.

Now the authority says it will go to the Court of Protection for a final decision.

Mandy, an administrator at Joseph Rowntree School in York, fears the upshot will be a stranger forcing Liam to live somewhere he doesn’t want to.

“Had we been bad parents or abusive or using drugs, then we would consider this justice,” she says. “But to be taken to the Court of Protection because of loving and caring and wanting what is best for your child… how can strangers come in and take decisions away from close family, those who know him well, and would never harm him?

“Some days I am numb, sometimes I feel physically sick, sometimes I wonder if it is really happening to us. He is our son!”

Growing problem of autism care

Polly Tommy, of the Autism Trust, says the question of what to do with autistic teenagers reaching adulthood is a growing one.

“I speak to parents daily at breaking point over where their adult son or daughter will go, what will happen to them when parents are no longer around,” she says. “Our government is simply not prepared for the huge generation of children that will shortly be adults.”

Too often, she says, parents who know their children best are being denied a proper say in their future.

Above all, she believes autistic teenagers should be listened to when they state an opinion or a preference.

It is easy to say they don’t really understand, she says. “Nothing could be further from the truth. People with autism don’t have the ability to lie. We should be listening to them.”

York Outer MP Julian Sturdy, who has been following Liam’s case, agrees.

If Hesley Village are able to offer Liam supported accommodation that costs no more than it would in York, then the Brunskills and Liam should be given the choice for him to live there, Mr Sturdy said.

“Liam is very happy at Hesley Village and he’s making good progress. If he is taken away from an environment where he is happy and secure and he is brought back to York, there is a potential danger that he could regress,” he said.

What is the Court Of Protection?

The Court of Protection rules on behalf of people who cannot make decisions for themselves, in financial or welfare matters.

It can also appoint a deputy for someone unable to make their own decisions.

A young adult like Liam would have his own independent representation at a hearing, and his family and the local authority would also be represented.

Each party would put their case, and a judge would then make a decision about what is in Liam’s best interests.