There is a weary familiarity to families of learning disabled people in this current crisis as we see that yet again their loved ones have been sidelined, ignored or plain discriminated against.
Steve Broach, one of the leading lawyers in the field, has pointed out that this is the first time in decades that children with special educational needs have no clear right to the level of provision they require.
Under new emergency powers, local authorities are now only required to use ‘reasonable endeavours,’ and such softening of the statutory obligations offers cover for any local authority trying to reduce such costs. What’s more, there has been continuing confusion about the position of the learning disabled in triage and the use of Do Not Resuscitate orders; indeed, according to the learning disability academic, Chris Hatton, it’s been impossible to get clear figures on the impact of COVID-19 on learning disabled people, be it rates of infection, tests, hospital admissions or deaths.
This for me is personal. I’ve not been able to visit my severely learning-disabled son, Joey (23), who lives in supported living in Hertfordshire; I wrote about it for Byline Times a few weeks ago and I’ve been very touched by the response. But the truth is that in many ways what we’re going through—like so many other families with learning-disabled children—is yet another in a long list of challenges.
The fact is that since Joey was born we’ve been involved in an endless battle to secure for him what any non-disabled child would be given as standard. We had to fight to ensure that he received the right level of SEN support at his primary school and to make sure that he was transferred to a special school when his disabilities made inclusion impossible; then we had to identify the right residential education and medical placement when the epilepsy became too dangerous, and insist that our local authority didn’t put him in a deeply unsuitable (if cheaper) setting nearer home. And it never stops.
Ihave box files of letters stacked up in my study and once calculated that his mother or I spent an average of ten hours a week for about fifteen years involved in this struggle. We’ve bawled down the phone trying to get the message across, spent hours worrying about the wording of a letter, and attended dozens of meetings at the local authority which only made real progress when we were prepared to put everything on the line, including our very darkest fears, so as to make the case. Each one of these battles is exhausting: physically, intellectually and emotionally.
And, of course, we’ve researched and accessed all the free support available, instructed expensive lawyers, threatened to contact the press and practiced all the dark arts that being a middle class professional allows you. For the truth is that, despite some good reforms in 2014, the system for providing support to learning-disabled children and young adults is not fit for purpose, and many of the local authorities have been struggling desperately to deliver on their statutory duties.
While it’s true that ten years of austerity have cut their budgets to shreds, the challenges that families like ours face are cultural as much as economic, especially in the vertigo-inducing gap between the positive, aspirational language that is used to anaesthetise our rage, and the all too often shabby, grudging and evasive reality.
If the local authorities are now required only to use ‘reasonable endeavours’, the outcomes for our children are likely to get worse.
Each battle is unique but what every parent of a learning-disabled child shares are the scars on our backs from fighting for their basic rights. We’re sometimes accused of acting like a cabal, but we have to do everything we can to help each other, with parents of older children passing on their bitterly earned insights to new generations. We’re hard-bitten, frequently sceptical and, I’m afraid, grimace drily when we hear parents of neurotypical 11 year olds ‘desperately worried’ about getting them into a decent secondary school. They don’t know how lucky they are.
But I do know how lucky we are: at the moment, Joey is happy, safe and well looked after in supported living, and long may he stay so. The same, I’m afraid, can’t be said for the many children and young people bullied and abused in care homes and specialist institutions up and down the country, or the more than 600 autistic and neuro-divergent children sectioned, locked up, secluded and physically restrained in NHS Assessment and Treatment Units (ATUs).
There are dozens of dreadful examples, including the autistic Bethany, locked away in an ATU for years despite wanting to live in the community; the remarkable Ella Chapple, who lost her sight as a result of the traumatic impact of restrictive interventions; or poor Connor Sparrowhawk, the strikingly charismatic learning-disabled young man with epilepsy who drowned unattended in an NHS bath in 2015.
Yes, let’s clap loudly for the NHS and the brilliant care professionals who do so much, but while these gut-wrenching failings continue we must keep asking questions and never console ourselves that all will be well once this ghastly virus has passed. And if you don’t believe me, read Ian Birrell whose brilliant journalism has unearthed a whole universe of pain.
Some people have asked me about my deepest fears for Joey at the moment. My biggest worry is not so much about him catching the virus, it’s about him having to go into hospital if he did. And that’s not just because of what that would indicate about the seriousness of his condition, let alone the concerns that he would be further down the triage list than other healthy 23 year olds or even subjected to a Do Not Resuscitate order. No, it’s because the health outcomes for learning-disabled people in hospitals are so shockingly bad at the best of times.
It’s been grimly observed that learning disabilities (which have never killed anyone) are a life-threatening condition in our society, and the idea of Joey being alone in hospital is more than I can bear. And I say that as someone who’s hugely grateful to the NHS for all it’s done for me and my family, not least getting Joey’s epilepsy under control and, no doubt, saving his life on several occasions.
We’re often told that nothing will be the same after this crisis. But for families of learning-disabled people this feels like yet another set of hoops for us to jump through to ensure that those we love are given what the rest of the population expects by right.
There are so many decent people committed to helping the learning disabled and their families—in social care, local authorities, law, the charity sector, the NHS, the arts, politics even. But if this crisis is to have a real positive impact, can we at least ensure that our oft-stated commitment to universal human rights extends to the most vulnerable among us, some of whom—like my darling Joey—have no capacity to speak for themselves?
It’s surely not too much to ask.
Stephen Unwin