The neurospicies are on the rise. I can’t help feeling that estimates that 15% of the population is neurodiverse is an underestimate. Heads and teaching staff I know put the number of kids presenting with strong neurodiverse traits, diagnoses, and needs recognised on the SEND register in their classrooms as being around a fifth to a quarter of their pupils. Healthcare and school systems are getting much better at noticing neurodiversity in childhood, if not actually providing suitable adaptations and meeting needs once children get diagnosed.
But for adults, many struggle through life having been missed in more ignorant eras. And as general awareness rises, so do the number of adults seeking later life confirmation of neurodiversity. Which leads me to the question – are we playing catch up with diagnoses? Are the population figures actually much, much higher across all age groups, but undiagnosed?
Which makes it incomprehensible that the North Yorkshire and York Health and Care Partnership is removing access to autism and ADHD assessment and diagnoses for adults.
Autism, ADHD and other neurodiversity conditions such as dyslexia, dyscalculia and dyspraxia are disabilities. It is unthinkable that any healthcare trust, group or partnership would remove diagnostic pathways for people with, say, cancers, spinal injuries, or visual or hearing impairments. (Or is it? Is this a slippery slope, or just wilful, neglectful ignorance around one group of disabilities?)
In a pilot starting in March of this year, the partnership has only offered pathways to people at immediate risk of self harm or harm to others; a risk of being unable to have planned life-saving hospital treatment, operations, or care placements; or an imminent risk of family court decisions determined on diagnosis, for example family breakdowns or custody hearings.
People who don’t meet these criteria will be sent away to do a questionnaire. Seriously, is this a credible healthcare provider, or a Take A Break magazine-style quiz? If you answered mostly A, congratulations! You’re autistic! Mostly Bs, you’ve got ADHD!
While online questionnaires are often a first step for many people becoming aware of their neurodiversity, they are not diagnostic tools, and cannot act as evidence for disability benefits or access to medications (people with ADHD often choose to take medication to manage the condition).
Commissioners have said they need to “stem the flow” of referrals because of funding limits. When are politicians and funding bodies going to realise that if the need outguns the funds, the funds need to increase? Disabled people cannot be left to fall off the cliff in this way. Except we are, time after time after time.
No profits? No problem. Shut the care homes down
The fourth largest provider of looked-after children’s care homes in the UK will be closing 28 residencies housing around 60 Disabled children this week. This is the problem when profits are placed above need. People become commodities. Assets to be stripped, discarded, and, in essence, utterly screwed over.
Kids need compassionate, trusted caregivers, stability and routine. This is especially true for children with learning disabilities, mental health distress or neurodiversity – where changes can trigger catastrophic meltdowns and cause long term anguish and further disablement. Switching things up for such children, and especially at short notice, isn’t just a case of reassigning old pegs to new holes. These are people. I would love to know what the word People means to for-profit top brass. Because it feels like it has a whole other definition when they weigh up the place of people in their decision making.
The closure of homes means they lose trusted and loved caregivers. In essence, they are forced to undergo massive amounts of bereavement with the loss of such people. They are expected to transition without these people – the very people who could and do help them navigate life’s curveballs, and be moved further away from family members.
And they may be put in bigger homes, where new and more intense sensory stimulation (bigger, faster, noisier, more are often watchwords with larger settings, be they schools or residential settings) which will undoubtedly overwhelm them. They will also have to change schools, and therapy settings. Basically everything – not an exaggeration – that they depend on for stability, resilience, joy and thriving – will go, or change in a bad way for them. Oh – and some of them are smack bang in the middle of school exam season.
We know as adults that moving house is traumatic and stressful. How much more-so for these kids? The name of this provider? Outcomes First. Note that the name doesn’t state whether the outcomes are good or bad. Funny, that.
An Outcomes First spokesperson said: “We have made the difficult decision to close some homes in light of sector wide recruitment challenges. The homes are being offered for purchase as a priority to Local Authorities and alternatively other parties in the residential care sector.
“Full support has been provided for these children who are all being transitioned smoothly to other homes within the group or alternative Local Authority appointed settings. Exceptional circumstances for young people who, for example, might be sitting exams, are being accommodated on an individual basis.”
Note the strong disjunct between the thoughts of those who work with those kids and the corporate spokesperson. It is ever thus.
Smaller homes deliver smaller profits. Which means private equity firms like Stirling Square, which owns Outcomes First, make less money from them. These kids are literally the means to profit. Not people. Means to profit. And no profit means they have no intrinsic worth. And when Disabled people are seen as having no worth, we eventually end up with T4 programmes. Enough.
Strike a pose
Disabled fashion in the UK is currently having A Moment. More below. But meanwhile, at NYC’s Met Gala, famous dead bigot Karl Lagerfeld was being lauded as a demigod, despite his decadesworth of comments dismissively judging bodies, especially fat (which in my case equates to Disabled) bodies. Oh – and everyone had to march up the infamous red carpet stairs to get in.
Stairs. So many people who shell out around £40,000 for a ticket to this hackneyed glad rags showcase talk the talk on inclusion. But when it comes to walking the walk, here they are, hopping up a staircase without a thought for anyone with impairments who couldn’t, not even noticing the lack of diversity at the gala year after year, let alone challenging the exclusive (as in shutting out Disabled people) nature of the event, and celebrating a dude whose definition of inclusion was choosing between houseboys with lightly ripped or deeply ripped musculature. Vile.
In somewhat happier news, and god knows we need happier news, the lovely Edward Enninful, Vogue’s brilliant and beloved inclusive editor, has chosen this month to put Disabled people front and centre in Vogue.
And as much as I balk at the fact that a single item of clothing in one of the infinite number of glossy ads would pay for a Disabled person on benefits to live for between a month and a year, and that a good slug of toxic attitudes within high fashion actively lead to disablement (eating disorders and poor mental health being primary ones), finally, some of the bright shining stars of our amazing Disabled firmament are getting to represent in a major, highly visible way in the wider world.
There are in fact five covers this month, featuring Selma Blair, Aaron Rose Philip, Ellie Goldstein, Justina Miles, and Sinead Burke – five Disabled cover stars, along with features by and about other brilliant Disabled people and their professional endeavours, including creating accessible fashion lines.
Edward has also gone public on his hidden disabilities – visual and hearing impairments and a blood disorder. While our impairments and the details of them are nobody’s business but ours, I always do a little air punch when somebody with clout wants to go public as an out and proud Disabled person, because it shows the world that Disabled people Can. Too often we are seen as the sum total of our limitations. We are seen as Can’t Do. Which is, so much more often than not, absolute nonsense. There is so much we can do. It’s good to see it written up, full colour, glossy, out loud. More please. And Edward – perhaps a word about the Met Gala in Anna Wintour’s ear for next year?
