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AAfter a year in safe care 105 miles from home, 17-year-old Jack Cavanagh, suffering from autism, learning disabilities and epilepsy, desperately loses his family. They saw it every weekend, but with Covid restrictions they were unable to visit it. As a result, they say, Jack has become more anxious and isolated and recently begged staff to “be” his mother or father.
Her mother Dawn says, “She told me ‘you don’t get kisses, mom, you don’t get hugs.'” She says staff at Ludlow Street Healthcare, which manages the safe placement in South Wales, told her that Jack isn’t the only one asking to see his family. “This is happening with other people with learning difficulties due to separation from loved ones,” she says.
Separation has always been a problem for those who have been placed in safe care far away from family and friends. But parents who are fighting during Covid to visit their loved ones say this has gotten worse, with more restraint, isolation and segregation used to deal with their children’s growing anxiety.
Jack was transferred from a special school in West Wales to a sheltered residential facility after his convulsions escalated and he started running away.
Lack of affection makes Jack, who also has ADHD, become aggressive. This has led staff to keep him more and more, as permitted by law and common practice in safe care. His mother saw the accident logs and the staff told her that some restrictions involve seven adults holding him down for 10 minutes. He says he is aware that floor restraints are used as a last resort to keep Jack from hurting himself, but he has demanded that they stop because Jack finds them so distressing. Jack said to her, “I hate the tightness of the floor, Mom. Make them stop. “In response to his requests, he says that the staff are trying to use the position papers instead.
Aside from the odd supervised walk in the park, Jack was locked up in a single bedroom, bathroom, and living room. He began to self-harm and became selectively mute after his parents were unable to visit them for more than 15 weeks due to measures to stop the spread of the coronavirus.
National guidelines at the time did not make it clear that relatives could meet their loved ones on the grounds of a care provider. With the help of a lawyer’s advice, Jack’s parents were finally able to visit their son by the end of the summer. Wearing gloves and masks, they met up to a dozen times for an hour in a delimited outdoor area manned by two staff.
Before Covid, Cavanagh argued with staff to arrange home visits, such as monthly. But since March, Jack has only been home three times, he says.
Cavanagh, who is an autistic academic specializing in learning disabilities, believes that during the pandemic the authorities forgot about people like Jack “because they are already locked up.” He says: “Institutionalization has never gone away and Covid has allowed it to grow”.
For Chris Hatton, professor of social work and welfare at Manchester Metropolitan University, Covid appears to have led to a general shutdown of services to the outside world and to people who have become more isolated. “With high stress, continuing uncertainty, concerns about people’s safety and high staff turnover, these are the conditions that generate institutional cultures,” he says.
Despite repeated government promises to close learning institutions for disabled and autistic people with complex needs in the wake of the 2011 Winterbourne View scandal, the inpatient units alone still house 2,060 adults and children with cognitive or autistic disabilities. This includes 610 people between the ages of 25 and 34 and 200 minors under 18. They are only 40 fewer incarcerated than they were five years ago, when there were 3,000 hospitalized patients.
John Mulligan’s 27-year-old son, Liam, is in an NHS-funded private nursing home on the South Coast. He believes the lack of attention to young people is “a mini-epidemic in the making”.
Mulligan, who visited Liam several times a week before Covid, had contact during the second block limited to Skype or phone calls, although 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 contacts and family activities, leaving him apathetic, listless, confused, bored “and with no sense of why this is happening to him,” Mulligan says.
Susan Bevis’ 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. A decade of entering and exiting several secure placements follows. Bevis says Covid has made visits more impersonal due to the constant supervision of staff and the fact that they meet in a separate examination room, away from the ward. It seems, he says, that his daughter “is treated like an object”
In May Andrea Attree provided testimony to the parliamentary human rights commission about how Covid had increased her daughter, Dannielle’s self-harm, as well as leading to more restraint, isolation, and excessive medication.
Six months later, Attree says, “The second block has increased Dannielle’s anxiety, and as a result we talk less because she is unable to speak during periods of intense anxiety … Her self-harm has increased again. She did. prolonged headbanging, pulling out hair and lashes and punching hard surfaces. “
Dannielle, 23, is expected to move into an apartment in an autism-specialist inpatient unit by the end of the year, but her mother fears the second block will delay the move.
Kamran Mallick, managing director of Disability Rights UK, says: “If this happened in other countries, we would refer to it as a violation of human rights.”
Mallick believes one response to get people out of inappropriate care settings is to divert budgets from institutional to community care. “Budgets are examined in silos and in local authorities [which fund community-based support] I’d rather not hire it, but as taxpayer-funded money, it all comes from the same source, “he explains.
In response, the Department of Health and Welfare insists that England “is putting in place the right community-based support to reduce the need for specialist hospital care,” says a spokesperson for the DHSC. He adds: “We want to ensure that people with learning disabilities and people with autism receive safe, high-quality care and are treated with dignity and respect.” He did not make specific comments on hospital care and Covid.
In Wales, the government is “focusing on actions to support people with learning disabilities and their families in response to the pandemic,” says a spokesman for the Welsh government.
Explain that people in an assisted life can form an extended family, home visits are allowed under new post-fire regulations, and NHS inpatient units are covered by the hospital visit guide. But he had no information for people in secure residential placements.
A spokesperson for Ludlow Street Healthcare says it has “consistently balanced” the need to protect the safety of students, parents and staff from the emotional needs of individual students.
“There have only been limited occasions where we have had to limit visits to family members and parents have been very supportive of the imaginative approach we have taken to ensure families maintain constant contact through Zoom, SeeSaw, Facebook and other means,” he says. .
“Seeing that students might be anxious during this time, our education team developed a series of fun educational activities, which reinforced virus control and social distancing messages. Our therapy team has also ensured that students have all the essential information they need in a variety of formats that everyone can access.
“While changes have been made to some aspects of the college’s offering, we are committed to offering as much consistency as possible to ensure that students remain positively engaged in activities at all times and continue to advance their education and development paths on their own. “
This is of little comfort to Jack’s mother.
“There are some decent people who work there [with Jack] they are doing their best but… how can you support people if your training is based on how to perform 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 consider behavior that is considered “challenging”. “
Cavanagh fears Jack will never go home: “His world has gotten smaller. My biggest fear is that when his time in this place runs out, he’ll end up in another safe environment and we’ll never get him back. “
He says, “He is a human being and he needs to live a human life.”
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