There is a particular kind of frustration that comes from being told that something exists when, for all practical purposes, it doesn’t, especially when that something can make a world of difference in someone’s life.
The support exists. The rights exist. The law is clear, supposedly (is it?). There is a form, somewhere, since there is always a form. There is usually also a webpage explaining it, although there is a reasonable chance that the webpage was last updated 3 or 4 years ago (or more…), links to another webpage that no longer exists and uses terminology that assumes you already know what you are looking for. Technically, though, it exists.
I have spent enough time dealing with disability-related systems to become deeply suspicious of the word “available”. Available how? How do people know it exists? Can they understand the eligibility criteria? What happens when the institution itself gives them the wrong information? Even worse, what happens when the institution blocks people from accessing support just because? Again, a form missing, a wrong detail, never-ending bureaucracy. I’ve been through this over and over again and it still baffles me how hard it is to access something when you’re already in a vulnerable position.
We have a tendency to think of public policy as the moment a law is approved, a measure is announced, a new scheme is created or even just having the government say that yes, they’ll take care of it. That is the visible part. It is also, sometimes, the easy part. The much less glamorous bit comes afterwards: someone has to make sure the thing actually functions and responds to what people need. And that is where things become hard, or for lack of a better word, interesting.
A family may fulfil every criterion for a particular support and still go without it because nobody told them it existed. Another may be sent between three different services because nobody is quite sure whose responsibility the case is. Someone else may give up because the administrative cost of accessing a relatively small benefit becomes greater than the benefit itself. Again, a form not correctly filled in, or an evaluation of a case that was not quite on point, or even something else entirely. None of these people are technically excluded, since it is still open to them. They are just unable to access something they are supposedly entitled to.
This distinction matters because it changes how we diagnose the problem. If we only count whether a right or programme exists, the policy may look successful. If we look at whether the people it was designed for can actually use it, the picture can become rather different. More often than not, these numbers are not available for us to analyse, and you have to ask for them, sometimes even beg.
I have become increasingly interested in what happens between policy and people.
When something repeatedly goes wrong, my first instinct is no longer simply to ask, “Why didn’t this person get the support?” I want to know how many other people didn’t get it, where the process broke down, whether the same thing happens elsewhere, who controls that part of the process and whether the problem is accidental or structural.
The answer can be a lack of resources or rules that are badly designed. Sometimes five institutions are involved and none owns the problem. Sometimes the information technically exists but is so technical that even the people who work in the system struggle to understand it. More often than not, it’s the people who make the system work. Someone taking pity on you and calling in a favour, you putting your foot down and demanding the support that should be easily given, someone who went through these hoops helping you, among many other situations.
Helping one person solve a bureaucratic problem matters. But after the fifth, tenth or twentieth person arrives with essentially the same problem, it becomes difficult to keep treating it as an individual failure, because it almost never is. It is a system failure or a policy one. Even more so if the support depends on subjective opinions.
The frustrating part is that many of these problems are fixable. Not necessarily easily, and rarely with one grand reform, but often through fairly unexciting things: clearer responsibilities, better information and legislation, simpler procedures, actual communication between services, sufficient staff, and, especially, asking the people using or needing a system what happens when they try to use it.
Alas, we are still too quick to dismiss vulnerable people when, in truth, making sure that everyone has access to a just system is better for society as a whole.
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