Support needs – What We Need

We’re Still Disabled in an Emergency: Support During Bereavement

“it is often precisely in an emergency, when we have no option but to engage with services, and no opportunity to pause and recover, that those services provide the fewest support needs by default.”

Welcome Back to WhatWeNeed

It’s been a couple of months since the last blog. I am delighted that we are now returning from summer and normal, regular service will be resumed. But I want to use this edition to explain a little about what has been occupying me over the summer. Because it is so relevant to the work we do at WhatWeNeed, and illustrative of the importance of making sure that support needs are provided as standard.

One of the things I find myself saying most frequently to those who run services is that we don’t stop being disabled in an emergency. And yet it is often precisely in an emergency, when we have no option but to engage with services, and no opportunity to pause and recover, that those services provide the fewest support needs by default.

My father died towards the end of June, and since then I have felt as though I have been living through a demonstration of that principle. I want to use this piece to reflect on which services I have dealt with, and the ways in which they have, and have not, provided the support I need. And what the consequences of that have been.

It will, I hope, provide food for thought for each area. But also for us to think about this kind of “emergency” scenario more generally. We need to think about those situations where interactions between a cluster of sectors and industries all happen together and around the same event or cause. And consider how we might not just help each sector to provide support by default but work across those sectors to minimise the number of times people have to ask for essential help.

I won’t go into overshare too much, but my father’s last decade was probably more complicated than many. After my mother died, he lived with his new partner though they didn’t marry. Sadly, she died a few years ago but he was able to carry on living in the house they shared. Though not for long, as he subsequently went into dementia care.

More Communications With More Providers, Most of Them Unfamiliar

I mention that only because it explains that I have had to deal with not one but two sets of lawyers, the first service provider I will mention. My spouse and I have had to pack and clear his things, but were only able to do so when his late partner’s lawyers were present in the house his late partner owned, meaning we had many 300 mile round trips for only a couple of hours of sorting at a time. As the final step was to remove his belongings, we also had to contact van hire companies, which has very specific complications best left for another day.

Lawyers operate under very strict regulation. That includes money laundering regulation which means they need to be absolutely certain with whom they are dealing. That does mean an element of visual contact (a Teams call) in many cases. It also means I had to provide a lot of documentation to prove who I am. I am lucky I am able to do so. A few years ago I wouldn’t have been. Many can’t. That aside, I was able to deal by email, and make appointments at times that worked. I think the legal profession is still unaware that many of the people it interacts with have support needs, but I was not negatively affected in general.

Second, in respect to those same circumstances, I had to deal with the care home in which he died. I have been dealing with them for a year, so this is easier than it might have been. But during that year they still took a lot of training. It was a long time before we initially had contact because they tried calling and calling a telephone number we just don’t use, and wouldn’t email. Even when I made contact by emailing them and explaining, they still notified me of incidents around my Dad’s care primarily by phone for a long time, until eventually they learned that calling simply meant I would send an email asking them to email me. Much like one’s GP, this felt like a case of having to train people in one’s needs rather than having them by default. But they were at least trainable.

Companies Whose Business Is Empathy Did Best At Accommodating Support

Funeral and associated care was the best to deal with. There was only one negative point, when they sent me a chivvying email to set a funeral date quickly. At that point I was at my absolute limit, the spoon drawer empty and my executive function through the floor. Having to compose a response that was polite but firm explaining I was exhausted, and reminding them I also care for a disabled spouse, added to the exhaustion. And I could sense their judgement. I wasn’t being respectful enough to the dead to do it “properly.” It was a small blot. But a blot nonetheless.

Local government was hard. Specifically, registering the death. The law requires this to be done in person. Again, I understand there are very good reasons for this. But for many, especially when a loved one lives hundreds of miles away, as in this case, that could be almost impossible. At the least it means the clock ticks away.

Dealing with financial institutions was interesting. This obviously is where I have most experience. And it is a sector that promotes itself as progressive in this area. Indeed, compared to many, it is.

Fortunately, my Dad banked with the same institution I do. Had he not done so, I think things would have been a lot harder. As it was, it turns out that, as I have witnessed across many banks, the support that can be provided for general banking is often not available in specific departments. This turned out to be true for the bereavement department. The only two options were for telephone and post. When I asked about alternatives and explained I was disabled and the phone was very difficult, I was told that I could use their (they are not with Support Hub – yet) super whizzy support system to nominate someone to speak for me.

I don’t have someone.

But that’s not the point. I don’t lack capacity. I am not unable to communicate. And I shouldn;’t have to divulge private details about my Dad’s finances to someone else in order to discuss them with his bank in my capacity as executor. This “get someone to do it for you as default” approach is exactly the kind of thing that erodes the autonomy and self-confidence of disabled people. It is the reason I no longer put myself forward for many opportunities. It is the reason I feel uncomfortable talking myself up. Because if you don’t even give me the chance to communicate for myself what does that say about your opinion of the ideas I have to communicate.

Local government and utilities proved easier to deal with. I had my Dad’s bills, and the customer reference number plus the notification of death was enough to initiate email communication in each case.

HMRC proved the hardest of all. My Dad’s latest letter was a large fine for not filing a tax return. Fortunately, the “tell us once” that I had signed when I picked up the death certificate eventually filtered through and the next penalty notice was sent to me. Whereas most institutions, even the DWP who want overpayment of payment pension repaid, at least start with “we are sorry to hear of your loss” HMRC launched straight in with telling me how serious it was and demanding a large fine in 30 days if the tax return wasn’t filed.

Of course, my Dad had a good reason not to file a tax return, what with being dead. But even before that, I figured being in dementia care probably counted as one of the reasons on their legitimate excuse list. The problem was how to tell them that. Again, just a phone number. Which meant I eventually dealt with it 5 weeks after I would have liked to have done. Because that is the first time I had the spoons accumulated to make a fully scripted outgoing call (assuming nothing veered off script).

Improving Telephone Queues

Which brings me to a key support need. I can make some calls. Outgoing only. I can do it once in a day. First thing in the morning only. And about once a week. I need to take a day of annual leave to do so. This, of course, in itself, is a tangible foreseeable harm that companies simply don’t acknowledge. But waiting in a queue, especially an indeterminate length queue, drains the spoon jar at pace. I waited 34 minutes. I was almost non-verbal by the time I got through as a result. So I struggled to say what I needed in a way I wouldn’t have done had I got through straightaway.

I have three points on this.

Interrupting the jingle for a recorded message is a nightmare. Every time it happens my first thought is that this might be the person I’ve been waiting for. Which is disruptive. And it means I can’t put the phone down and know that I need to wait for the faint music to stop as my cue. Support need: either don’t use pre-recorded messages while waiting, or give an option at the start to opt out of hearing them
Support need: if I am required to make a telephone call, provide a means for me to be connected straightaway or when the first operator is available. It’s not queue-jumping. It can often make the difference between being verbal and non-verbal
Inclusive design: tell people what number they are in the queue

Some general conclusions to follow those specifics. I don’t have family or friends who are able to assist in many circumstances I find myself facing. Others are fortunate enough that they do. But when it comes to the death of someone whose next of kin you are, that is little help.

There are many things that only I could do, and many organizations that would only communicate with me. It is therefore imperative that these organizations provide multiple communication channels. Again, an exercise I run in workshops is to ask people “How do you think this will play out?” when they fail to do so.

I think the answer is, there are some situations in which firms expect to find people who are vulnerable (problem debt, utility provision in an emergency, handling benefits claims); and some in which they don’t (wealth management is one I often cite, and I would include being executor for someone’s estate).

In part this is because people just don’t think about disabled people as anything other than potential victims. But, of course, we are everywhere. And second, there is still a lot of general confusion between needing support, especially around communication, and lacking capacity. The moment you say you can’t receive phone calls, people’s tone of voice changes. It was very telling that when I said this to my bank as I discussed accessing my Dad’s accounts, their response was to say, “You can nominate someone to talk for you” rather than to provide a means by which I could communicate for myself.

We Don’t All Communicate in Conventional Ways

Inaccessible is more than inconvenient

“perhaps we can expand our concept of what is normal and apply less judgement in situations where someone communicates differently to others, as for people who stammer, it’s just how we talk.”
Frances, STAMMA

Frances volunteers for the STAMMA Employment Service, which supports organisations and individuals who have issues relating to stammering. Find out more about STAMMA’s Employment Support Service For Stammering.

About Our Blog Series

Welcome to the sixth in our monthly series of blogs looking at the support that would enable people with accessibility needs to use everyday services with as little disruption to their lives as others do (or at least, as little disruption as possible).

Each entry in this series has been written by someone with lived experience of a particular support need. This month we hear from Frances about the ways in which organizations and individuals can jump to conclusions based on people’s atypical communication styles, such as stammering.

Get Involved

We invite any service provider, from retailers to delivery firms; from financial services to utilities and everything in between, to consider how their service meets the needs presented.

We welcome comments, which will be moderated in accordance with our code of conduct. We especially invite insights from people with similar needs, or different needs relating to similar situations. And from organisations who are able to meet these needs (sharing how they do so) or who would like to consider how they might do so.

If you would be interested in contributing to this blog, please email info@whatweneed.support. We pay £150 for a post (or can make alternative arrangements such as donations on your behalf if you are not able to receive payment because of the effect on your benefits).

If you are interested in the work we do at WhatWeNeed.Support, please visit our home page. Or contribute to our request for support needs to add to our cross-sector lists, either through the comments on individual list pages, or by emailing info@whatweneed.support.

We also invite you to sign up to our mailing list by clicking this link so that you can find out about the support needs we are discussing, about events we are holding, about ways of getting involved in what we are doing, and about important developments in helping those with support needs.

Finally, if you would like to get involved in WhatWeNeed.Support’s events, as someone who has support needs, or someone who works for an organization that puts support needs into place, we would love to hear from you through our email info@whatweneed.support

With that, here is our sixth post, from Frances.

“We Don’t All Communicate in Conventional Ways”

Stammering has been a huge part of my life. My Dad has a very pronounced stammer, which often affects his ability to do everyday things, like talk on the telephone, order a coffee or buy a train ticket. I stammered more when I was younger and regularly went to speech therapy, however this never made me feel ‘abnormal’ or that there was something wrong with me, stammering was so familiar to me at home, I quickly accepted that this was also the way that I spoke sometimes too, just like my Dad.

My first experience of being judged for the way that I communicated was in primary school. This was back in the early nineties where it was very common for schools to have mobile teaching units within school grounds. These mobile units were assigned to teach either the ‘naughty kids’ or pupils who had special educational needs and disabilities.

When I started primary school, I have a core memory of being marched out of the classroom into one of these mobile units. I stammered so that automatically reflected my academic ability.

I was taught in the mobile unit for a few days before I went back into the classroom, reflecting on this in conversation with my parents recently, my Mum told me that she had had a conversation with the Headteacher, where she gently encouraged them to understand that how I spoke had no relevance to my ability.

Another experience at primary school, which was far more positive and also a defining moment for me with regards to my speech, was our whole-school play. I was the narrator… “Many years ago in the land of Troy…” I still have the script in the loft somewhere. I learnt that I could speak well in front of a crowd, and that if I did get stuck, that it would be okay, and I would be okay.

As I’ve got older however, sometimes when I stammer I don’t feel okay, and it is very often the reaction from the person or people I’m communicating with that make me feel that way.

Unfortunately, the perception of people who stammer is fuelled by film, television and media. Characters who stammer often play the fool, the victim, they are characters to be ridiculed and laughed at, I don’t think I can ever recall seeing a hero or heroine with a stammer, or a main character who is very smart and confident.

These are just some of the preconceived judgements people who stammer are battling against, before they even open their mouth.

Throughout the years, I grew to realise that the way people react to me, or my Dad, when we stammer is always more ‘their stuff’ than ours. Often it’s embarrassment, either they are embarrassed themselves as they they’re not sure what they should do in the situation, or that they are embarrassed on our behalf, which for me, is always far worse.

It can be a simple lack of understanding, as we rarely talk about stammering or disfluency in everyday life, in education or workplace settings for example. Indeed, when we do our equality, diversity and inclusion training for HR, it often mentions disabilities, but more physical disabilities such as being deaf or needing to use a wheelchair.

Reasonable adjustments may be mentioned for such disabilities, but in over 17 years working in retail, we were never once told how to approach a conversation with a customer who might stammer or have difficulty communicating.

Sadly, there has been, and will always be, those nasty people who genuinely think it’s funny when someone stammers or who struggles to conventionally communicate. I’m very lucky to have had little exposure to this, but I have seen the impact of this behaviour on others and it can be destructive. Hopefully the more that we do in our schools and our workplaces to educate people on disfluency will contribute towards greater understanding and empathy towards people who just talk differently.

With reference to my last point, judging people on how they communicate doesn’t just apply to people who stammer. We don’t all communicate in conventional ways. Let’s consider those who are neurodivergent, maybe have a health condition or have had an accident that has affected the way they can communicate.

From my experience there can be an intolerance or impatience towards people who don’t fit nicely into social norms, those with perceived irregularities can make others feel awkward and uncomfortable, eliciting reactions influenced by misunderstanding leading to misjudgement.

The more that we can acknowledge people communicate differently, we can perhaps expand our concept of what is normal and apply less judgement in situations where someone communicates differently to others, as for people who stammer, it’s just how we talk.

Support needs covered in this piece

Do not finish my sentences for me.
Do not make assumptions about me based on the way I communicate.

Not All Inboxes Are Equal: Voicemail is one of many ways an insistence on the telephone can be overwhelming and limit access to services

Inaccessible is more than inconvenient

“an inconvenient process for a non-disabled person can become a huge time and energy drain for a disabled one.”
Cat Mitchell

Cat Mitchell is a Senior Researcher at the University of Derby. She does research on the barriers disabled people face in publishing, and her article in the Bookseller, “We Need to Talk About Disability” was a massive wake up call for the industry.

About Our Blog Series

Welcome to the fifth in our monthly series of blogs looking at the support that would enable people with accessibility needs to use everyday services with as little disruption to their lives as others do (or at least, as little disruption as possible).

Each entry in this series has been written by someone with lived experience of a particular support need.

Get Involved

We invite any service provider, from retailers to delivery firms; from financial services to utilities and everything in between, to consider how their service meets the needs presented.

With that, here is our fifth post, from Cat

Not All Inboxes Are Equal

Let me tell you a long, boring story.

It starts with my phone.

Every time I unlock it, I’m greeted by a sea of menacing red dots; new emails, new WhatsApp messages, new social media notifications. And occasionally, a new voicemail.

The dots haunt me; a never-ending to-do-list, one notification always immediately replaced by another. I feel like a cat, distracted by a laser pointer, always reaching out for one dot of light for it just to appear elsewhere.

Because I’m overwhelmed by the dots, on this particular occasion, it takes me a week to listen to the new voicemail on my phone. And by then it’s too late; a specialist medical appointment I’ve been offered – after six months of waiting for it – has probably gone. I’m already likely being discharged back to my GP for not responding quickly enough. It sends me into a panic and I feel my throat constricting.

I wonder if it’s too late to stop this. Phoning people fills me with dread, but the only contact details they’ve given is a number.

I call it. A woman answers on the third ring, but they tell me I’ve come through to the general line; I need the specific department.

It’s very loud in the background; it’s difficult to hear what she’s saying, and I have to ask her to repeat herself. My head feels full, and I worry I’m saying the wrong thing. The woman is clearly getting irritated with me, but eventually she gives me a new number and I note it down.

I hang up, and now I’m filled with even more anxiety. I run through a script in my head of what I need to say over and over again, fearful of getting the next conversation wrong too.

When I feel calmer, I call the new number. This one takes me straight to an automated message, which informs that this number is now out of service. It lists a new number and then cuts me off.

Already, I’m feeling exhausted.

I take a breath. This time, when I call the new number, the phone just endlessly rings. I hang up and try again five minutes later. No-one answers again. I keep doing this on-and-off for an hour, with no luck.

I decide to just try my GP.

I phone and wait. I have to listen to a long, automated message before I can select the option to talk to a real receptionist. When I get to that point, a robotic voice tells me the line is too busy and I get cut off.

I call again. I listen to the automated message again. I get cut off again.

Eventually when I get through, I’m told I’m 50^th in the queue. I stay on the line for 20 minutes and remain in the same position. There’s an option for them to keep my place in the queue and for them to call me back instead, so I don’t have to wait on hold. I select this, and then return to work.

I anxiously wait to hear from them all day, trying to remember what I need to say in case someone calls and I forget it all. I’m distracted and I can’t fully focus on anything.

They return my call five hours later.

By then, it’s too late for any doctors to talk to me.

To get an appointment I have to call at 8am the next day, though the receptionist advises I come in person and queue at 7.30 instead, because you usually can’t get through on the phones.

Well, I think, at least I don’t have to make another phone call.

The next day, I roll out of bed at 7. Early starts throw out my day because I have insomnia. It’s winter and drizzling unenthusiastically. I don’t drive due to my leg pain so I walk the 15 minutes to my GP surgery wrapped tight in layers. Already at 7.30, the queue is 10-people long. Even though you can see a few women moving around inside, we don’t get invited in.

I wait for forty minutes in the cold. There is nowhere to sit. The shivering makes my already aching muscles tense, and my spine struggles with all the standing.

Eventually I get inside and I get my appointment for later in the day. A 15 minute walk back home. A few hours of waiting, distracted. A 15 minute walk back to the surgery. And then finally, I get to talk to a person who can help.

This story didn’t have to be quite so long, or quite so boring.

Really, it shouldn’t have been a story at all.

So, how could this have been handled better, particularly for someone with access needs like me?

An option for messages to be sent via text messages or email rather than voicemail; I can quickly glance at my messages, but voicemails take more headspace, especially in a period of overstimulation or executive dysfunction
For the same reason, longer deadlines for responding to requests
Clear, up-to-date contact details being provided
Making sure there are options to have conversations in quiet places, or minimising background noise in phone calls
Staff not getting frustrated if you need something explained again or more clearly
Not relying on phone calls as the only option for communication
If waiting in a queue is required, offering the option of a seat indoors

Sure, part of the problem is that the NHS is overstretched and underfunded. And of course, not all processes will always suit everyone.

But these kinds of issues happen with lots of institutions and businesses. And an inconvenient process for a non-disabled person can become a huge time and energy drain for a disabled one.

We’d prefer not to have to tell these boring stories, let alone live them.

Support needs covered in this piece

Please send messages via SMS
please send messages via email
Please do not leave voicemail messages
Please give me longer deadlines for responding to requests
When you correspond with me, lease provide up-to-date contact information for the communication method I need to use
When we meet, I need a quiet space to meet in
Please minimise background noise when making phone calls to me
I may need things explained again or more clearly. Please do not get frustrated
If waiting in a queue is required, please offer me a seat indoors

New and Improved: how changing your platform or product creates problems for autistic consumers

“Improved” doesn’t mean “better.”

“Improved” doesn’t mean “better.” Improved is change. And change in and of itself is hard for many of us. Even if the new thing is so incredible it does things seamlessly, securely and makes me a cup of tea while it’s at it, it’s still new. I will still need time to get used to it. And I will still feel genuine distress when I realise what I am looking at is not what I am used to looking at.
Chris, teacher and researcher

To coincide with Autism Awareness Month, this month’s blog is from autistic teacher and researcher, Chris, who explains one of the most commonly faced difficulties for autistic consumers: change. Specifically, updates.

Everything we do here is built by lived experience, but if you are reading this representing a company, remember that Autism Awareness Month is a divisive and emotive subject in the autistic community, as awareness days, weeks, and months are in many communities. Be very careful if you are putting events on or using hashtags on your socials. And follow the basic principles. Speak to autistic people. If you are seeking advice, which is always a good idea, make sure you pay people appropriately for their expertise. Read and listen to the community. And don’t talk without acting.

About Our Blog Series

Welcome to the second in our monthly series of blogs looking at the support that would enable people with accessibility needs to use everyday services with as little disruption to their lives as others do (or at least, as little disruption as possible).

Each entry in this series has been written by someone with lived experience of a particular support need.

Get Involved

We invite any service provider, from retailers to delivery firms; from financial services to utilities and everything in between, to consider how their service meets the needs presented.

With that, here is our fourth post, from teacher and researcher, Chris (name changed)

New and Improved

Most of us will know the feeling of looking forward to a favourite food only to experience a sinking feeling when we find out the recipe is “new and improved”, which we all know means “inexplicably made to taste nothing like it used to.”

For most people, this is disappointing, or briefly upsetting. But for many of us who are autistic, change can be incredibly distressing, and disabling to the extent that we become unable to use things that had previously been available to us.

When the thing that changes is the way the screen looks when you log onto your bank account, then the inability to use things that have changed can have catastrophic effects.

I know that the difficulty I face with change is something that’s almost impossible to explain. People who find change awkward or inconvenient will think “but I manage. Why can’t you?” And people who barely notice, or for whom an improved functionality more than makes up for any unfamiliarity, the reaction, even when not expressed as such is clearly, “Stop being such a snowflake.”

So I don’t expect you to understand what I mean. But I can explain how it affects me. And I can tell you that change causes the kind of distress most people would associate with an extreme loss or with physical pain. I can tell you that even change that makes things objectively better has the same disabling effect as change that makes things worse. And I can ask you to believe me. And to listen to what I say I need as a result, and do your best to meet that need. Even if you don’t understand from the inside why you are making it.

So before I tell you about my bank, I’ll tell you about my cutlery.

I’ve used the same set of cutlery since I was a student 30 years ago. It has red handles and red is my colour. The knife has a nice pointy tip that means I can pick up bits of cheese on it. It’s not expensive cutlery. It’s not posh cutlery. It’s fairly knackered cutlery. But it’s my cutlery. If I go somewhere else, I can eat with someone else’s cutlery. But it feels wrong, and I have to remind myself that it’s just once. That I will be able to use mine next time. If I’m at home and my cutlery isn’t clean, or my spouse brings me food with a different fork, I can’t eat it. Sometimes I sit and look at food I don’t know how to eat and feel confused. Or sob. At times I have thrown the plate, food, and wrong fork onto the floor and screamed. (These are reactions autistic people will recognise as shutdown and meltdown).

Originally the set had 4 of everything (though there’s a small machining error in one of the forks so I can’t use that one). Now there are fewer items. I know that one day it will wear out altogether and I will have no choice but to find a new set.

Of course, I know in my head that this makes no sense. So when people try to explain it to me as though they’re teaching me something I don’t already know they just come across as patronising and not listening. Knowing it in my head doesn’t stop my teeth being set on edge, all my senses feeling wrong, and my mind just going nope. And that doesn’t help me eat.

What I have learned from decades of experience, even before I realised what the reason was when I was diagnosed autistic in my mid 40s, is that I can manage the situation by giving myself a long time to get used to living with something new while I still have the old to use day to day, while slowly (and by slowly I mean over the course of months and years) transitioning what I use.

I bought new cutlery 6 years ago, after months of searching for something that felt “least wrong.” I can now use it once or twice a week.

This isn’t just about cutlery, of course. It’s everything I use on a regular basis. When I needed a new laptop because the old one was so slow I was almost unusable, the new one had to sit by my sofa unused before I could even open it, let alone turn it on and face the new layout.

And that’s where all this is relevant to services. A new layout is just as distressing and difficult to manage as a new thing.

In a world where technology moves incredibly quickly, this makes it almost impossible to keep up with essential updates to the platforms I rely on.

What is really galling is when updates are made that are not essential, and which I have no choice about when or whether to implement. And when those updates come from my bank, it creates the very real likelihood that I will be unable to pay bills on time even though I have the money to do so.

A change happened like this recently, with no notice. I couldn’t access my accounts for several weeks and finally preparing myself to do so and then navigating a layout that felt both alien and utterly unintuitive wiped me out for days before and days after. Fortunately I didn’t miss a vital payment. That was sheer luck of the timing.

Banking is hard enough for me at any time. Other services, like electricity providers, have become unusable altogether. Passwords are already difficult, requiring memory of something that is by its nature not meant to be memorable. That step alone makes using a service hard. When I can’t see what I’m typing that becomes exceptionally hard. When I am asked to change a password for the sake of security both harder still and infuriating because, like the whole of what I’m writing about here, change is distressing. And unexpected change hits me like a deep physical pain. And increasingly firms want even more steps that are almost impossible to juggle and require hours even days of preparing for, like multi factor authentication (which always requires a second device, more than doubling the difficulty, because otherwise the risk of pressing the wrong button is too great). And all the time “helpful” pop-ups and cookie reminders keep pinging and both frying my brain at the very moment I need to concentrate and increasing the chance of a wrong keystroke.

I wish banks understood that sometimes trying to “keep me safe” makes it impossible to access my money. Which takes a tiny risk of who knows what and transforms it into a very high risk I will end up credit blacklisted, even fined. How is that protecting me?

My problem with all this is with executive function. This is a concept that is almost impossible for me to explain. It’s even harder for others to understand (in part because it’s so hard to explain). Whatever I say just makes me sound lazy or difficult. The label ADHD and autistic people like me spent much of our childhoods having being given by teachers and parents and peers alike.

Poor executive function can mean seeing every single step in a process, even the ones that are totally invisible to most people, and having to learn how to do each one of them, and which order to do them in, without understanding why one follows another.

It can mean that things disappear completely from your awareness the moment you can’t see them.

It can mean sitting and looking at something you know should be easy and feeling as though you are staring at an insurmountable obstacle.

It means knowing, much of the time, most days, that people don’t get it, that they don’t see why you can’t “just do…” and it means you don’t know why the thing that should be so easy feels so impossible, and hating yourself for not knowing.

It means devoting much of your life to learning systems and workarounds for things that most people do without a second thought.

On the occasion in question, having finally logged in to my dashboard to move money to my credit cards, I was confronted with something completely unexpected. And unclear. Instead of having the balances and transactions of each account laid out as had always been the case previously, I found I now had to click through to access each. And then click back. Which in itself is an extra layer of complexity. But which I was being expected to do on top of the shock of finding the change in the first place.

If anyone who has a website or a platform is reading this, here’s what I really want you to understand. “Improved” doesn’t mean “better.” Improved is change. And change in and of itself is hard for many of us. Even if the new thing is so incredible it does things seamlessly, securely and makes me a cup of tea while it’s at it, it’s still new. I will still need time to get used to it. And I will still feel genuine distress when I realise what I am looking at is not what I am used to looking at.

It will take me time to adjust. I will have to learn the new thing. I will have to get familiar and maybe, eventually, comfortable with it.

So please don’t update the way things work without a very good reason. And I mean really good.

When you have to change things, give me lots of notice. And give me accurate notice (tell me the date it will change. Do not change before that date).

Ideally, show me the new look long before I have to use it. Let me look around, get used to it. Get familiar with it.

When you do introduce it, I’d love it if you could let me carry on using the old version for a while. Or even let me go back to the old version, with a simple click, if I get distressed and cannot use the new.

Of course, tell me when I will no longer be able to use the old version. And do not stop me using it before then.

And if I miss payments or actions in a window after you have introduced something new, offer people like me an amnesty period. Do not punish us for being disabled by your failure to make changes in an accessible way.

Support needs covered in this piece

If you make changes or updates to your platform, give me notice.

If you make changes or updates to your platform, show me in advance what the new layout will look like.

If you make changes or updates to your platform, allow me to continue using the old layout alongside the new.

Key elements of Accessible Design covered in this piece

Update your platform as few times as possible.

When considering updates to your platform, prioritise function over appearance.

Communicate any changes you will be making well in advance of making them, and always give as accurate a timetable as possible of when changes will occur, including when new layouts and functions will be introduced and when old ones will be withdrawn.

Going the Extra Mile: How Do We Create Accessible Delivery

On the first Tuesday of every month, we open up our blog to those with lived experience of the impact of inaccessibility. We pay £150 per article.

In between times, our team will post things that we believe are important and which help support the conversations and collaborations essential to ensuring people receive the support they need to use the services they rely on.

In this post, Dan Holloway, co-founder of WhatWeNeed introduces our first list of support needs relating specifically to delivery services.

We invite your comments on that list. You can download the Excel spreadsheet of delivery support needs here. And you can download a pdf of delivery support needs here. You will find the list in text at the end of this blog.

If you have lived experience of a support need relating to delivery do comment or email info@whatweneed.support. We particularly want you to tell us any needs that we have not currently included, or any needs that we could phrase better in order to capture the support that would give you the most practical help.

And if you would like to write a blog about the impact of delivery companies failing to meet a support need of yours, please email us an idea. We publish a lived experience blog every month and pay £150 for this.

If you are involved in a business sector that provides delivery services or uses delivery firms, we would like to hear from you. In particular, we would like to hear the practical barriers that are currently standing in the way of meeting people’s support needs. We would like to hear what needs you are able to meet right now. And we would like to hear what your plans are to meet the range of needs expressed in our list.

The Impact of Inaccessible Delivery

Many of us who are disabled rely on the delivery of goods we need for day to day living, let alone to enable us to access things that might give our lives richness or pleasure.

Which is why it can be so frustrating that delivery companies themselves often feel more inaccessible to us than any other essential service provider.

Surveys and reports from organizations such as Which back up our frustration. Citizens Advice publishes an annual league table, and the most recent, from November 2023, tells a familiar story. It singles out the fact firms are “failing disabled customers.” To quote:

“almost all parcel firms scored 2 stars or below when it came to meeting the needs of disabled customers or individuals who require adjustments to how they receive parcels. An estimated 7.2 million people have an accessibility need they’d like to share with their parcel delivery company. However almost half (45%) of these people were unable to do so.”
Citizens Advice

The prevalence of dissatisfaction is startling. And the frequency with which people’s support needs either can’t be met or are ignored is hugely disappointing. This can range from leaving parcels in inaccessible locations to failing to acknowledge people’s instructions related to accessibility needs.

Delivery services are also in a unique position among essential service providers. So many other sectors are unable to support us in the way we need if the delivery companies they rely on cannot do so as well.

My worst experience of delivery came when our washing machine broke. I am very fortunate to be physically robust, but we have a small car, and even I can’t carry a washing machine, including concrete ballast, the miles from the store to our home.

So I needed to get it delivered. What I hadn’t realised is that this would be the hardest part of the enterprise. Because the store (all names omitted to protect those who may have improved since) that offered the best price for a machine required a phone number to allow me to fill in the delivery request, so they could call to arrange delivery.

But I am unable to take incoming calls. Having a telephone “on” is in itself a source of trauma, and means that while it is on I can do nothing but sit in a corner of the room, waiting for my life to collapse, thinking about nothing but when it will be over. And actually receiving calls raises anxiety so high that I am liable to lose my speech altogether. Add auditory processing issues and I am unlikely to understand what is being said to me while I have lost speech.

So I went into the store (an hour on the bus) concerned to se if this was a website glitch. It wasn’t. They literally could not arrange a delivery without their warehouse calling us. I told the person behind the till, and their supervisor, that I was disabled. I explained what the impact on me was, in a crowded store with people who could overhear my intimate and distressing medical history. No use.

I explained the equality Act. No use.

So I steeled myself to go home (another hour on the bus), sat in the quiet and dark long enough to switch the phone on and make an outgoing call, preparing every script I could to say what I needed to in order to get customer service, who surely had received the training the store hadn’t, to understand their obligation in law to offer me accessible communication and, in the 21st century, receive an email not a phone call saying “we’re on the way.” How hard could that be?

Apparently, impossible. More intimate medical history to strangers to no avail. And I was wrung out. A whole day of annual leave wasted. No washing machine. It was the next day before I had recovered enough to find a company who could deliver without a phone call. But at considerably more cost.

Current Regulation

Delivery companies fall under the regulation of Ofcom. In 2022 Ofcom strengthened the protections they require firms providing a postal like delivery service to give to disabled consumers. They did this by introducing a new Consumer Protection. Consumer Protection 5 lays out very clearly what Ofcom expects delivery firms to do.

The main requirement is for any firm providing a delivery service to have a policy in place that describes three things

How disabled consumers can communicate their need to the firm regarding the delivery of a parcel.
How the firm’s employees should fulfil that need when they deliver the parcel.
How the impact and effectiveness of the policies will be measured.

Firms must also make employees aware of their policy and train them to carry it out.

Clearly this isn’t happening in many cases. And this has a negative impact on consumers’ wellbeing. But also, as we have seen, on the reputation of the firms themselves.

Complications

So why aren’t firms, um, delivering?

One reason is the relationship between retailers and delivery firms. This makes it hard for us as consumers to know whether our accessibility needs will be met when we place an order. Because most of the time when we ask for a firm to deliver something to us, we are not asking the delivery firm. We are asking another firm, which then uses the services of a delivery firm to get their product to us.

This means also there are many layers our needs have to pass through in order to ensure a smooth service. And many opportunities for things to go wrong. This could be a failure of a retailer to communicate with a courier. It could be a lack of awareness on behalf of a retailer meaning we cannot state our needs. It could be a failure of communication at any stage between the courier, the printing of instructions, and the driver making the delivery. Or it could be a fear of passing on “sensitive information.”

Even when delivery is “in house” there are multiple communications needed. Between the shop and the back room. Between warehouse and driver. And of course, there is the pressure on drivers to meet timing targets that means compliance with our needs is a low priority for them. And also for a sales team that needs to keep prices low by swift turnaround.

As so often, there is a risk of accessibility becoming a premium service. Or of a price rise across the board, leading to resentment towards disabled consumers.

Because the relationship between delivery firms and retailers is complicated, we have limited the scope of support needs at this stage. What we do not yet have are support needs relating to the relationship between retailers who use a third party delivery firm and consumers.

The assumption at present is that retailers and others who use delivery firms would pass these support needs straight to those delivery firms. We are, of course, eager to hear what support we are missing as a result, and most important how it could be implemented.

The Business Case

If any partnership between a retailer and delivery firm worked out a way to ensure that what we ask for when we place our order is what’s “delivered” then they would have a huge competitive advantage among disabled consumers.

But it may go beyond that, such is the widespread dissatisfaction with delivery firms. While Citizens Advice found disabled consumers rated delivery firms 2 stars or lower, the overall rating for all firms was only between 2 and 2.75 stars.

Accessible delivery may be a classic case of inclusive design that benefits all. and a firm that gets it right in its own operation and in its partnerships has potentially vast reputational and financial rewards to reap.

Support Needs Relating To Delivery

Note that we have included some support that relates to the food delivery sector. This sector is not subject to the same Ofcom regulation as parcel delivery.

Download the list of support needs relating to delivery as a navigable Word document by clicking this link.

Download the list of support needs relating to delivery as an Excel document by clicking this link.

highest impact/frequency and easiest implementation

please allow extra time for me to get to the door
please read and follow any special instructions and notify me if you cannot fulfil them
if I am not in, please do not leave a parcel unless I have given instructiona
I need you to leave my parcel in a place I can reach if you leave it outside
I need you to bring the parcel inside and leave it in a place I can reach it
please use the doorbell
please allow me extra time when signing
please knock loudly

high impact but harder to implement

I need you to open the parcel for me
I cannot access collection points. If you cannot deliver please redeliver to my home
If you deliver to a collection point, I need there to be onsite parking I can use
I may need to cancel a timed delivery at very short notice. Please enable me to do this

support needs and principles from other contexts that also apply to delivery

communication with the delivery firm, especially customer service and timing updates, and its drivers needs to be in a format the customer can uses
delivery platforms need to be accessibly designed
delivery drivers need to interact with customers in a way that is accessible for customers, including understanding social difficulties, or unexpected actions or appearance

support needs relating to food delivery

Please provide a single use positionable plastic straw
I have a very severe allergy need you to transport my delivery in a container that has never been used to carry nuts
please do not include any free extras that I have not ordered
please bring my delivery inside and place it on the table
please bring my delivery inside and open any boxes for me

“Everyone Deserves a Voice”

“everyone deserves a voice no matter how they need to be heard.”

Imagine what your week would have looked like…if you couldn’t communicate your needs verbally how would your life be different, how would you feel.

This is more than just a poor customer experience. As you can imagine it can be upsetting, set you back in your own development and affect your mental health.
Katie MacKay, Nationwide

About Our Blog Series

Each entry in this series has been written by someone with lived experience of a particular support need.

Get Involved

We invite any service provider, from retailers to delivery firms; from financial services to utilities and everything in between, to consider how their service meets the needs presented.

With that, here is our second post, from Katie MacKay

“Everyone Deserves a Voice”

The ability to speak, something many take for granted, being able to successfully communicate your needs verbally is pretty much an expectation in whatever service you are trying to access. Something so simple and vital in today’s society, yet millions across the UK are still left without a voice, without access to vital services unless they have support from a carer, friend or family member, not only taking away their independence but increasing their risk of financial abuse.

At a first glance this may seem like an issue that only effects a small amount of the population. However, it is estimated 1 in 5 people in the UK will experiences a communication difficulty at some point in their lives, that’s around 14 million people, and I am one of them. I have a degree, a good job, my own home, on the surface my difficulties are minimised by people’s perceptions of what communication difficulties are. Yet, I can still struggle to communicate when triggered.

Nonverbal communication is communicating without any words. A lot of people will use the term non-speaking as they may communicate words through movement, facial expressions, gestures, sign language etc. People also sometimes use the terms non-oral, non-vocal, or minimally speaking; there’s a spectrum of language around communicate difficulties. No matter how someone wants to identify their communication need, everyone deserves a voice.

There are so many reasons why someone may have trouble communicating. This could be due to a life event such as a stroke, cancer, an accident; or the cause may be lifelong such as autism cerebral palsy. People may also have communication difficulties due to mental health conditions such as anxiety; or English may be their second language. Communication barriers can affect everyone, it’s not limited to one age; it can be lifelong or for a shorter period of time and can be obvious or hidden.

Latest numbers of supplied by the Stroke Association show that there are 350,000 UK citizens who have Aphasia. 25% to 35% of autistic people are either non-speaking or minimally speaking. Minimally speaking means that this individual will speak fewer than 30 words. If we consider the National Autistic Society’s figure that there is 700,000 people in the UK are on the Autistic Spectrum, this equates to a figure between 175,000 and 245,000 who are non-speaking or minimally speaking. There is 9 million people in the UK who are Deaf or hard of hearing. That’s just a handful of people who could be affected by communication barriers.

So, I am autistic, many people don’t understand the barriers we can face. In some cases I can communicate really well but in others in public settings I can struggle to communicate simple things. When I bought my house, I had to go to a new GP. You would expect this to be accessible for all but yet, that was not my experience.

When the day of my first appointment came I went to the desk and tried to check in but was directed to the self-check in machine. The machine was not working so I went back to the desk and tried to explain, but the receptionist didn’t understand what I was saying and kept sending me back and back to the machine. This made me feel anxious like she thought I was stupid, or she couldn’t be bothered to try understand. She eventually listened after a man went and told her it wasn’t working. But, by this point I had been trying to communicate unsuccessfully and was getting more and more agitated. When my name was called over the telecom, I had no idea where to go, I tried to ask for help but was met by confusion and a hint of frustration that I was being difficult. when I final got into the GP I couldn’t communicate anything, I tried to say hello and instead I just sat there completely overwhelmed crying. I couldn’t pull any words together.

For many, communication barriers are hidden. Imagine trying to communicate but the words all come out jumbled or nothing comes out at all. People talking over you because you are taking too long to explain, or they just guess what you want.

I want you to take a minute and think for me, think about all the things you have done this week, going to the supermarket, work, ordering a takeaway, meeting friends. imagine what your week would have looked like if you had a communication barrier, if you couldn’t communicate your needs verbally how would your life be different, how would you feel.

This is more than just a poor customer experience. As you can imagine it can be upsetting, set you back in your own development and affect your mental health.

Remember just because someone may not be able to communicate verbally it does not mean they can’t understand you with the right support.

Industry has taken strides to improve accessibility for many segments, but the sizeable non-speaking, and people with verbal communication barrier population are often overlooked when we design and test accessible services. Many people who have a communication barrier rely on other people to communicate for them which could increase their risk of finical abuse and take away their independence. It can also, cause difficulties for them accessing services or choose the right products for them.

There is no one size fits all approach to accessible communication what one person needs may differ to what someone else needs to communicate effectually. But there are some simple things you can and should do.

The ‘TALK’ principles created by the Royal College of Speech and Language Therapists are a great example of accessible communication. The first one is TIME, this is about giving the customer time to process any information you give them but also giving them time to respond. The second is ASK. So asking the customer what help they need to communicate effectively, would they prefer a pen and paper, do they want to sit down somewhere quiet etc. Then it’s LISTEN and LOOK; listening carefully to the customer. if you are unsure what they are asking, ask them to confirm you have got the information correct by playing back what you felt they asked – for example, so you would like to withdraw £50 today is that correct? Look at what the customer is doing, they may be trying to communicate through movement, this could include nodding or pointing. And finally KEEP TRYING, don’t give up. Communication is a two way process so learn from interactions with customers, share good practice, try different methods to find one that suits each customer. Communication Access UK (https://communication-access.co.uk/) offer training that both individuals and organisations can complete and is a great starting point for anyone looking to make their communication more accessible.

My ask you today is to think… think about your customers, friends, colleagues and family… what more we could all be doing in our own industries and lives to make communication accessible where that be the financial sector to the service industry, because everyone deserves a voice no matter how they need to be heard.

Support needs covered in this piece

I need you to give me more time to process information and respond to questions.

I need a quiet space for appointments.

I communicate with an assistive device such as a tablet, or by writing with pen and paper. Please allow me time to communicate in this manner.

Please confirm any agreed actions with me so I can be sure you have understood.

About Katie, in her own words

I am a neurodiverse women currently working at Nationwide building society. I work in operational planning as well as on our speak easy tool program. A tool designed to help customers complete in branch enquiry non verbally using phrase and image cards. I also sit on the Disability Sport Wales National Youth Board.

Useful links

Nationwide first to offer dedicated support for customers with communication difficulties (nationwidemediacentre.co.uk)

Communication Access UK – Inclusive communication for all (communication-access.co.uk)

Orange wallet – Awtistiaeth Cymru | Autism Wales | National Autism Team

“A Single Point of Contact”

With the benefit of five years’ hindsight, I can identify the support needs that speak to these issues, which boil down to two things: paper trails and a designated point of contact.
Clara Oliver, 37, Administrator (name changed)

About Our Blog Series

Welcome to the first in our monthly series of blogs looking at the support that would enable people with accessibility needs to use everyday services with as little disruption to their lives as others do (or at least, as little disruption as possible).

Each entry in this series has been written by someone with lived experience of a particular support need.

Get Involved

We invite any service provider, from retailers to delivery firms; from financial services to utilities and everything in between, to consider how their service meets the needs presented.

With that, here is our first post, from Clara Oliver (not her real name), a 37 year-old administrator.

A Single Point Of Contact

There is a large padded envelope in a box in the storage space under my bed that has been there, unopened, for five years. I’m not a hoarder by nature, but I am unable to throw this envelope away; I also find myself unable to open it. It remains there, sealed like a fly in amber, perpetually held in a moment of stasis.

The envelope contains physical and electronic copies of documentation and phone calls I was given after I submitted a subject access request (SAR) to my bank. It is the only tangible evidence of one of the most distressing periods of my adult life; vindication and solidity after more than six months of being gaslit and humiliated. I made the SAR in the hope that I would one day be able to review it all in service of processing the trauma, but I don’t think that day will come soon. I have tried instead to funnel my energies into contributions to the broader good, like this blog post.

I have had periods of depression and anxiety throughout my adult life. My mental health fluctuates significantly over variable durations of time – I have ‘good spells’ which can last for years, or ‘bad spells’ of a few weeks or months. Perhaps unsurprisingly, the intersections between my mental health and my financial position are significant. I think this is something that most people understand intuitively – nobody thrives when the bailiffs are knocking at the door or the bank is sending threatening letters – but very few people are willing to talk about it.*

In 2019, with the support and encouragement of a colleague, I approached my bank about finding a resolution to an untenable financial position. Put simply, I had acquired a substantial overdraft overnight in order to avoid a CCJ, and I couldn’t dig my way out of the hole. My mental health was poor; I was sleepless, anxious, and hopeless. What I wanted was (to my mind) relatively straightforward: a payment plan, the reduction or removal of interest charges for a fixed period, or some other combination of help and support to enable me to get back on my feet financially. My colleague had advised me to request to speak with the ‘vulnerable customers’ team at the bank, a purported shortcut to a corner of compassion and humanity within a vast and soulless multibillion dollar corporation.

What I got instead was a six-month period of being trapped in a seemingly endless cycle of poor support from my bank, which exacerbated my depression and anxiety, which increased my support needs, which the bank could not meet, which exacerbated my depression and anxiety, and so on. I want to be clear about the distinction between the resolution I was seeking (a plan to resolve my financial situation) and the support needs I had (the ways in which the bank interacted with me during the time it took to develop the plan in question). In the end, the resolution was satisfactory; the way that the bank managed the situation and supported me as a customer was not.

The downward spiral of my mental health during the period I was interacting with my bank could be attributed almost exclusively to having to explain my situation anew to a different person at the call centre every time I called before I could proceed any further, and an unwillingness of anyone I spoke to at the bank to put anything in writing. With the benefit of five years’ hindsight, I can identify the support needs that speak to these issues, which boil down to two things: paper trails and a designated point of contact.

Who does it serve to have a different person dealing with the same customer each time? Who benefits? When the customer is expending valuable mental and emotional energy on the initial hurdle of explaining their situation on the phone and waiting to be directed to the right person, by the time it comes to the substance of the enquiry, they are completely exhausted and ill-tempered. A designated point of contact – even if that means more limited availability – could have prevented my descent into despair. Going through a call centre every time is a demoralizing and dehumanizing experience. If I could have been given the direct line for one person who was managing my case, it would have removed the vast majority of the distress and frustration I experienced. I would have accepted a significant reduction in the window of time in which I could call to discuss my case, if I knew that the person on the other end was well-informed and would be the same person each time.

My anxiety at the time also caused me to be very distrustful of anything anyone at the bank was telling me. I was eventually offered (verbally) a plan to resolve my situation that was acceptable to both me and the bank. I didn’t want to agree to anything, however, until I’d seen the offer in writing, but the bank employees were extremely reluctant to send anything. I had to call three days in a row in order to persuade them to agree to send me the details in writing. I found this to be incredibly poor practice regardless, but for someone who had already declared their anxiety, I found it incomprehensible. From my end there was no official record of all these phone calls, and I couldn’t believe that there wasn’t some ‘catch’ to this offer that was, as it turned out, going to help me out of a sticky situation.

When it came to actually accepting the offer, I had to take the signed paperwork to a local branch and ask them to scan and email it to the relevant team. I did this, but the paperwork was lost by the bank. I only found this out because I was calling every day to confirm whether or not it had been received. I was told – repeatedly – that if I had taken it to the bank, it would have been dealt with appropriately. That turned out not to be the case and I felt gaslit. The ‘no news is good news’ approach is an absolutely terrible one to take for a customer who has anxiety.

A brief summary via email of actions taken or things discussed after each call could have been the difference between a downward spiral and my return to mental health equilibrium. Perhaps if I didn’t now know that the resolution to this issue was within reach of the bank all along – as customer notes, firstly on their internal computer system and now in hard copies as a result of my subject access request – I would be able to contemplate opening that envelope.

*Martin Lewis being the notable exception, of course: https://www.moneyandmentalhealth.org/

Summary of support needs covered in this post

I need a single point of contact when discussing my account
please provide me a summary of what was said following our discussion
please provide me a summary of agreed action points and timeline following our discussion