“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.
What We Need 