Nothing like a pandemic to shine a light on inequalities.
It’s bigger than a spotlight. It’s floodlights.
Unsurprisingly, it’s society’s most vulnerable and marginalised people who are first to fall through the cracks. The elderly, the homeless, the disabled, those with mental health problems, the institutionalised (prisoners, people in care homes).
It is not just a physical disadvantage (age, underlying health conditions) when faced with a virus that can kill.
It is also a social disadvantage. The difficulty (even inability) of some people to maintain social distance – because they live closely with many others, or because they are dependent on carers (who come and go) to provide intimate physical care, or because they rely on carers to speak up for them but are unable to do so now, or because they are already socially isolated in society with little support, or because they simply do not speak the language. That list goes on.
Then there’s the emotional disadvantage. The problem some people have in coping with the need for isolation and social distancing, or in understanding it.
And how about the disadvantage in accessing health and social care services, because the system doesn’t speak your language, meet your needs, understand your needs, or even see that there is a problem?
When it comes to disadvantage in a pandemic, people with intellectual disabilities (or learning disabilities, as we say in the UK) top the charts, as they so often do. Many people with intellectual disabilities fit into so many of the DISADVANTAGE boxes (I know people who fit into all of them), it’s a miracle they keep going.
The good thing about floodlights is that suddenly, the inequalities become visible to everyone. And with it, the need for reasonable adjustments becomes blindingly obvious.
Reasonable adjustments are a legal requirement. It means that health services must make changes in their approach or provision, to ensure that their services are accessible to people with disabilities as well as everybody else.
The absolute need for this is pretty obvious for some kinds of disabilities. You wouldn’t expect people who use a wheelchair to make do with the stairs to your first-floor clinic on the basis that “everyone else uses the stairs, and we treat everyone the same, don’t we?” Equal and equitable service doesn’t mean the same service. For people who cannot manage the stairs, you either put in a lift to ensure that they can use your service – that lift is a reasonable adjustment – or you remove the barrier altogether by moving your clinic to the ground floor.
The need for reasonable adjustments for people with intellectual disabilities has often been less obvious to health care providers. So, we hear stories of carers who are asked to leave hospital at the end of visiting hours, even when those carers are needed to make sure the person stays relaxed enough to cope with hospital, help him to communicate his needs, ensure he doesn’t pull out all his tubes or wander around drinking other patients’ water. But the hospital staff will tell them, “He can’t have visitors all day. Where would it end! Other patients will want it too!” (I haven’t made this up. It happens.)
It is heartening to see that there are so many excellent resources coming out now, shining that all-important light on the need for reasonable adjustments for people with intellectual disabilities. Here is an example, a one-page guide for hospital staff, from Hampshire Hospital NHS Foundation Trust.
It is wonderful, also, to see how quickly NHS England recognised that some people with learning disabilities are unable to be in hospital without a carer or family member present. Their guidance that people in hospital could not have any visitors was updated on 8th April, permitting one visitor (an immediate family member or carer) in exceptional circumstances. You are now allowed to visit if the patient is dying, or a woman in labour (and you are the birthing partner), or a child, or:
You are supporting someone with a mental health issue such as dementia, a learning disability or autism, where not being present would cause the patient to be distressed.
Then there’s the government update (29th March) on what you can and can’t do during the lockdown. On the question Can I exercise more than once a day if I need to? it says (see point 15):
If you (or a person in your care) have a specific health condition that requires you to leave the home to maintain your health – including if that involves travel beyond your local area – then you can do so. This could, for example, include where individuals with learning disabilities or autism require specific exercise in an open space two or three times each day – ideally in line with a care plan agreed with a medical professional.
Take note. This is what reasonable adjustments for people with intellectual disabilities can look like.
Without reasonable adjustments, people with intellectual disabilities are at a very serious disadvantage. You simply cannot use blanket policies, procedures or approaches for everybody. This, too, has become much clearer during the Covid-19 pandemic, when policies and procedures had to be drawn up very quickly.
The guidance for doctors to help them decide who should get an intensive care bed was based on the blanket use of the Clinical Frailty Scale, which (as I explained in my previous blog post) is utterly inappropriate for people with intellectual disabilities. It was quickly updated with the explicit instruction that this point-scoring scale should not be used for people with intellectual disabilities or autism.
The fact that it needed disability rights campaigners to point it out, just goes to show how easily the need for reasonable adjustments is overlooked.(“Pointing it out” is a polite way of saying “There was an outcry”.)
So, the whole nation is learning fast.
We are learning that poorly paid immigrants who work in care homes and hospitals are, in fact, as indispensable to us as their (equally poorly paid, alas) British colleagues. Let’s hope the weekly applause is turned into a pay rise and more welcoming attitudes, lasting well beyond the pandemic.
We are learning that we must look out for the most vulnerable people in society and support them. Let’s hope that the spirit of altruism, volunteering and general kindness lasts beyond this pandemic, too.
We are learning that if we want to make sure that people with intellectual disabilities are not disadvantaged, we have to do things differently sometimes.
I hope there is another thing we will all learn, and it is this:
Getting it right for people with intellectual disabilities will help all of us.
I’ve said it before. You can quote me on this. I think we could all benefit from the highly individualised approaches that people with intellectual disabilities need. I can be pretty confident that hospital staff who get it right for them, will also get it right for me. Making sure that people with intellectual disabilities get the right care and support should be your Gold Standard. It is the litmus test for health and social care providers.
I also think we could all benefit from the straightforward communication and the practical ways that can support people with intellectual disabilities. The excellent new guide from the National Bereavement Alliance, Keeping in touch when you can’t be with someone who is so ill that they might die, includes suggestions that we have found to be useful for people with intellectual disabilities, including those with the most profound disabilities (giving the person a favourite jumper of cushion to hold; using smells, sounds, music).
For more practical ways to support people with intellectual disabilities when someone dies during lockdown, see this guide: When someone dies from coronavirus (one of a couple of resources I wrote with Books Beyond Words to help people with intellectual disabilities during the pandemic, downloadable here, free of charge).
Twelve days ago, I suddenly found myself having to use the guide I had just written myself.
It is called Jack plans ahead for coronavirus . It is a guide for family and carers, to help them think ahead with people with intellectual disabilities about what would happen if they became ill, and what they would need to take to hospital.
Suddenly floored by the virus myself (or I think that’s what it was – difficult to know without testing), and in bed with a sky-high temperature, I was too ill to explain to my husband what to prepare in case I had to go into hospital. He started thinking aloud. Phone. Charger. Toiletries. I knew there was more on the list but couldn’t quite remember what it was. I tried to mutter something about a one-page profile with crucial information about me.
Thankfully, Jack plans ahead had just gone online. “Just look it up,” I said. “It’s all in there.”
(In case you’re worried: This story has a happy ending. My temperature started dropping and after a week in bed, I’m now completely fine. But now we all know what to do, just in case.)
And it just goes to show. When we are ill or old or vulnerable (and that day will come for most of us), we could all do with something straightforward. One day, we too might need the reasonable adjustments that are so often necessary for people wit intellectual disabilities.
Once again, they can teach us how to be our very best.