IAs a national conversation, our social care crisis tends to be reduced to a small number of factors, so familiar that it now feels like a cliché. Almost all of these are centered around older people, with an aging population putting pressure on bankrupt local councils and people having to sell their homes to pay for residential care. Of course, all of this is urgent and extremely important, but it excludes large parts of society whose care is just as important. It's not difficult to figure out why this is the case. It reflects deep-seated, almost Victorian prejudices, and, without wanting to sound too melodramatic, it is also the final frontier in the struggle for human rights.
just below 50% of nursing care expenditures In the UK, more than two-thirds of funding for working-age adults with disabilities goes to people with learning disabilities. The parallels between this part of the social care picture and support for older people are very clear. Years of austerity, recruitment issues related to low-wage jobs (made worse by Brexit) and the endless failures of successive governments to address a long list of systemic problems. However, failures in care for people with disabilities each have their own unique characteristics. The absence of community planning for the transition from childhood to adult life, the absence of a concept of a successful adult life without paid work, and the completely harmful national habit of keeping one's mouth shut. be. Too many people with disabilities are so far away that they are unable to participate in society.
Let's consider some simple questions. If you are not disabled and you regularly go to yoga classes, choir practice, book club, or just to the pub, when was the last time you were accompanied by at least one disabled adult? ?I felt that it highlighted both the great urgency of the special educational needs crisis and the complete avoidance of the children involved with the adult issues that inevitably become theirs. I wonder if there isn't. And when it comes to people with learning disabilities in particular, even self-consciously progressive people have little understanding of who they are, what they need, and how poorly they tend to be treated. Why isn't there?
Early this month, Insightful report Titled 'What Comes After Education?', the book was co-published by two care and schooling charities, the Together Trust and the National Star. It's about young adults with disabilities, and it looks at the thousands of twenty-somethings who are often unable to live where they want and who regularly “experience loneliness and isolation, waiting too long for appropriate support.” I was drawing. This boils down to a chronic lack of services, housing, and opportunity, leaving people “confined to their homes with little or no access to their communities, creating an incredible burden on young people and their loved ones.” It's causing stress and anxiety.”
When the report was announced at the Capitol, the assembled crowd heard voices such as: speech Elliott Caswell, a 25-year-old from Newcastle with cerebral palsy and hearing loss, is full of ambition. He talked about the basic things that were inexplicably missing from his life: wheelchair-accessible housing and supported employment, and about people who were “not interested in sorting things out.” He also frankly described the reality of his daily experience: We all spend 66 hours a week with one support worker and we have nothing in common. [and] Without my family, I wouldn't have been able to go out more than twice a week. ”
After reading this report, I had a long conversation with the mother of a 23-year-old disabled woman who was beginning to plan for her daughter's entry into assisted living in 2020. We knew that it would require a lot of preparation. . Promising job offers disappeared one after another, and her daughter ended up living in a former vacation property in a coastal town. The organization in charge of her care soon refused to accompany her to any activities other than a few standard excursions, and as a result they were unable to accompany her to daily shopping, let alone sessions at her boxing gym or theater group. Even travel and medical appointments have been canceled.
“She was incredibly withdrawn,” her mother told me. “We suddenly noticed that she was spending more and more time in her room with just her tablet.” Finally, she was able to live with three other young people and with proper support. She's about to start, but her mother says, “I feel like I'm waiting for my life to start.''
Job cuts are a big part of the story here, but there are fundamental failings of the government that predate austerity. Every council needs to know exactly how many young people with disabilities leave education in a given year and plan accordingly. In most cases this will not happen. On the other hand, the cultural gaps and biases behind these shortcomings are even worse. There is no official concept of how people with learning disabilities can live fulfilling lives beyond early adulthood, say in their 40s or 50s. Cases of abuse, neglect and imprisonment in care homes and so-called assessment and treatment facilities are on the rise. Similar tough government attitudes can be seen in other areas of equally important policy. Witness the fact that while pensions remain sacrosanct, the government is embarking on new cuts to disability benefits.
I recently spoke with Lizzie Asher, another mother who has fought fiercely for one of her children's basic rights. David is currently 28 years old. He is one of triplets and was born with cerebral palsy. She explained that some young people with special needs manage to continue their education into their early or even mid-20s, but in David's case, he was sent to a care home at the local authority's expense. The breaking point came when he entered the institution at the age of 18.
“The people there were incompetent,” she said. The pads needed for his incontinence weren't changed often enough, and it took two years for his skin to heal. He needed to be lifted from his wheelchair to his bed, but not enough staff knew how to do it. He currently lives at Foundation House, a well-known residential care facility in Gloucester. “He goes for a walk every day. They go into town a lot. The other day they all went to lunch. They go to a karaoke session.” He recently performed songs by Coldplay and Kings of I go to see bands like Leon. In other words, his life and interaction with the world improved immeasurably.
Towards the end of our conversation, Asher said some very solemn words. It's just scary. ” As the father of a young man with autism who attends a specialist school, I know exactly what that means and the magnitude of the problem it describes. The fundamental problem is not just our failure to act on this persistent crisis. The thing is, most of us don't realize it.
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John Harris is a columnist for the Guardian. Maybe I'm Amazed, a memoir about his autistic son James and how music became their common language, will be published in March. For more information, please visit: Maybe imamazed.substack.com
