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After a year in secure care 105 miles from home, Jack Cavanagh, 17, who has autism, a learning disability and epilepsy, desperately misses his family. They used to see him every weekend, but with Covid restrictions have been unable to visit. As a result, they say, Jack has become more anxious and isolated and recently begged staff to “be” his mum or dad.
His mother Dawn says: “He told me ‘you don’t get kisses, Mummy, you don’t get hugs’.” She says that staff at Ludlow Street Healthcare, which runs the secure placement in south Wales, have told her that Jack is not alone in asking to see his family. “This is happening with other people with learning disabilities due to the separation from loved ones”, she says.
Separation has always been an issue for those placed in secure care a long way from family and friends. But parents who are fighting during Covid to visit their loved ones say this is being made worse, with more restraint, seclusion and segregation being used to deal with their children’s increasing anxiety.
Jack was moved from a special school in west Wales to the residential secure facility after his seizures increased and he began running away.
Lack of affection makes Jack, who also has ADHD, become aggressive. This has led to staff increasingly restraining him, as is legally permitted and a common practice in secure care. His mother has seen the incident logs and staff have told her that some restraints involve seven adults holding him down for 10 minutes. She says she is aware the floor restraints are used as a last resort to stop Jack harming himself but she has asked for them to end because Jack finds them so distressing. Jack told her: “I hate the floor holds, Mummy. Make them stop.” In response to her requests, she says that staff are instead trying to use sitting holds.
Apart from the odd supervised walk in the grounds, Jack has been locked in a single bedroom, bathroom and living area. He started self-harming and became selectively mute after his parents weren’t able to visit for more than 15 weeks due to measures to stop the spread of coronavirus.
National guidelines at the time did not make it clear that relatives could meet their loved ones in a care provider’s grounds. With the help of a solicitor’s advice, Jack’s parents were finally able to visit their son from late summer. Wearing gloves and masks, they have met up to a dozen times for an hour in a cordoned-off outdoor area, overseen by two staff.
Before Covid, Cavanagh would discuss with staff to arrange visits home, for example monthly. But since March, Jack has been home only three times, she says.
Cavanagh, who is an autistic academic specialising in learning disability, believes that during the pandemic the authorities have forgotten about people like Jack “because they’re already locked away”. She says: “Institutionalisation has never gone away and Covid’s allowed it to grow.”
For Chris Hatton, professor of social care and social work at Manchester Metropolitan University, Covid seems to have led to a general closing of services to the outside world and people becoming more isolated. “With high stress, continuing uncertainty, worries about people’s safety, and high staff turnover, these are the conditions that breed institutional cultures,” he says.
Despite repeated government promises to shut down institutions for learning disabled and autistic people with complex needs in the wake of the 2011 Winterbourne View scandal, inpatient units alone are still home to 2,060 learning disabled or autistic adults and children. This includes 610 people aged between 25 and 34, and 200 under-18s. That’s 940 fewer incarcerated than five years ago, when there were 3,000 inpatients.
John Mulligan’s 27-year-old son Liam, is in an NHS-funded private care home on the south coast. He believes the lack of focus on younger people is “a mini-epidemic in the making”.
Mulligan, who visited Liam several times a week before Covid, has had contact during the second lockdown limited to Skype or phone calls, even though Liam – who is quadriplegic and has cerebral palsy, learning disabilities and complex health issues – is also visually impaired and non-verbal.
Covid has deprived Liam of family contact and familiar activities, leaving him apathetic, listless, confused, bored “and with no sense of why this is happening to him”, says Mulligan.
Susan Bevis’s 33-year-old daughter Elizabeth (not her real name) has complex needs and autistic traits and has been in an acute mental health ward for six months in south-east England. It follows a decade of being in and out of different secure placements. Bevis says Covid has made visits more impersonal due to the constant supervision of staff and the fact they meet in a separate visiting room away from the ward. It feels, she says, that her daughter “is treated like an object”
In May, Andrea Attree gave evidence to the parliamentary human rights committee about how Covid had increased her daughter, Dannielle’s self-harming, as well as leading to more restraint, seclusion and over-medication.
Six month on, Attree says: “The second lockdown increased Dannielle’s anxiety, and we’re talking less as a result as she isn’t able to speak during periods of heightened anxiety … Her self-harm has increased again. She has been doing prolonged headbanging, pulling out her hair and eyelashes and punching hard surfaces.”
Dannielle, 23, is due to move to a flat in an inpatient unit specialising in autism later this year, but her mother fears the second lockdown will delay the transfer.
Kamran Mallick, chief executive of Disability Rights UK, says: “If this was going on in other countries we’d talk about it as a breach of human rights.”
Mallick believes one answer to get people out of inappropriate care settings is to divert budgets from institutional to community care. “Budgets are looked at in silos and local authorities [which fund community-based support] would rather not take that on, but as taxpayer-funded money, it’s all coming from the same source,” he explains.
In response, the Department of Health and Social Care insists that in England it is “putting the right community-based support in place to reduce the need for specialist inpatient care,” says a DHSC spokesman. He adds: “We want to ensure people with a learning disability and autistic people receive safe and high-quality care, and they are treated with dignity and respect.” He made no specific comment on inpatient care and Covid.
In Wales, the government is “focusing on actions to support people with a learning disability and their families in response to the pandemic,” says a Welsh government spokesman.
She explains that people in supported living can form an extended household, care home visits are permitted under the new post-firebreak regulations and NHS inpatient units are covered by hospital visiting guidance. But she had no information for people in residential secure placements.
A spokesman for Ludlow Street Healthcare says that it has been “constantly balancing” the need to protect the safety of students, parents and staff against the emotional needs of individual students.
“There have only been limited occasions where we have had to limit family visits and parents have been very supportive of the imaginative approach we have taken to ensure that families maintain constant contact via Zoom, SeeSaw, Facebook, and other mediums,” he says.
“Anticipating that students might be anxious during this time, our education team developed a range of fun educational activities, which reinforced the virus control and social distancing messages. Our therapies team have also ensured that students have all the essential information they need in a variety of formats that everyone can access.
“Although changes have had to be made to some aspects of the college provision, we have been dedicated to offering as much consistency as we can to ensure that students remain positively engaged in activities at all times and that they continue to progress on their own individual education and development pathways.”
This is of little comfort to Jack’s mother.
“There are some decent people working there [with Jack] who are trying their best but … how can you support people if your training’s based on how to carry out restrictive practices and not how to prevent them? You should understand things like human rights and know what people are trying to tell you when you see behaviour deemed as ‘challenging’.”
Cavanagh worries Jack will never return home: “His world’s got smaller. My biggest fear is when his time’s finished at this place, he’ll end up in another secure setting and we’ll never get him back.”
She says: “He’s a human being and he needs to live a human life.”
Source: The Guardian
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