Building Bridges: A Project to Enable Better Services to Create Better Lives for Disabled People

Full text of the paper outlining the process behind the building of WhatWeNeed.Support

Photo by Rosie Steggles on Unsplash

Summary

  • Disabled people are often unable to access basic services that others take for granted, leading to worse service, more frustration, and worse life outcomes than others experience.
  • A group containing lived experience experts, researchers, industry figures, developers, and charities has produced a list of support needs. It lays out types of support that people genuinely need, starting with the areas of “sight, sound, and mind”, and that organizations are genuinely able to implement, offering hope of real improvement to people’s lives.
  • This list has the opportunity to get better, and to grow, to enable more organizations to meet more needs, in more areas. But doing that requires people with lived experience of those needs to get involved and explain what those needs are; and institutions to get involved and explain which of those needs they can meet now, which they will be able to meet soon, and which they are still working towards.
  • To enable that to happen, the group that put this initial list together have put it on an open source platform.
  • We would love you to get involved in helping the list to grow.

Why Is a List of Support Needs Necessary?

Support for accessing everyday services: aligning what people need and what institutions offer

Disabled people and those in vulnerable situations are often unable to access everyday services that others take for granted without support. But attempts to provide that support often fail. On the one hand the support people need is often so specific it can feel to firms that it would not transfer to anyone else. Other times the emphasis firms place on “minimum cost and effort” means they serve no practical purpose to their customers.

Good will on behalf of organizations can make the provision of support more helpful; campaigning by individuals and charities can do similar; regulators likewise; and a good business case that also ties all these together probably even more. But no attempt to move the level of provision in the right direction will succeed unless there is a description of what is needed that is both clear, and able to be implemented.

A list of support needs as a bridge between customers and institutions

The list of support needs described in this paper is a way of bringing those two key elements together: enabling change to happen where there is a genuine appetite as well as a need to provide better support. And helping create a positive feedback loop that builds both change and a desire for change by bringing consumers and organizations together and demonstrating the benefit of change for both.

This list is, on the one hand, a list of specific support needs, outlined and defined by communities with lived experience and some of the charities who work with and for them. If that support is provided, it will enable a wide range of disabled consumers to access services others take for granted. On the other hand the needs on that list have been drawn up in discussion with organizations, understanding what those organizations can, and can’t, actually deliver with current technology and resources, and following current regulation.

As a result of this approach, the support needs on this list can be translated into meaningful actions that will benefit the consumer.

An incentive for institutions and value for communities

The first intention is that as organizations see the benefits, they will improve their systems to implement ever more specific needs, bringing us ever closer to the goal of individually tailored support, provided off the peg.

The second intention is that individuals and communities with lived experience of needing support to access services will update the list with more specific and more impactful support mechanisms, setting targets for that improved implementation to improve further still.

The overarching aims that knit these intentions together are

  • First, that the list and its implementation will grow in lockstep with each other, providing an ever more compelling case for creating better systems to provide support, investing in the technology needed to implement more needs, and increasing the ease with which disabled people and others in vulnerable circumstances can access services, enabling them to spend more time living fuller richer lives to the benefit of everyone;
  • Second, that the list will act as a foundation on which to build systems, applications, technologies, even companies that will provide more solutions in more situations for more interactions between individuals and organizations.

The list can act as such a foundation because of the unique way it has been created, and will be maintained, driven by lived experience communities, but in communication with the organizations who need to implement means of supporting those communities, and the developers on whom they rely for that implementation. This gives consumers the confidence that anything built on this list will meet genuine needs that are specific enough to make substantial changes to their lives; and it gives organizations the confidence that not only would they be implementing steps which have a proven stated benefit for their consumers but also ones that others have found possible and affordable to implement.

What the list is — and why it has the structure and focus it does

The list of support needs, which you can find in full at https://whatweneed.support/, was put together in its present form by Dr Chris Fitch of the Money Advice Trust and the Personal Finance Research Centre at the University of Bristol, in collaboration with representatives of charities, financial and other service providers, and those with lived experience from the blind and D/deaf communities, and those with mental health conditions.

The work was supported financially and enabled by Experian as part of a wider project to help disabled consumers and those in vulnerable situations to receive more easily the support needs that would enable them to access everyday service. Working alongside Dr Fitch was Dan Holloway from the University of Oxford, a mental health campaigner with lived experience of mental illness and neurodivergence, and a decade and a half of experience working in the area of mental illness and financial and workplace inclusion.

You can find an outline of the process by which the list arrived at its current form below. The methodology was driven, as outlined in the introduction, by a desire to meet the needs of disabled individuals: on the one hand by having their voices drive the description of the support they need in order to access services, and on the other by ensuring that providers were involved at every stage both to provide feedback on the current deliverability of those needs, and to begin the process of driving change so that more could be delivered in the future.

How the list is arranged: support need or condition

One of the ongoing discussions as the list has developed has been whether to arrange needs by the area of impairment or the activity for which there is a support need. In many ways this mirrors the discussion between the medical model of disability (disability is primarily the result of certain impairments) and the social model (disability is primarily the result of the society’s failure to remove barriers people with impairments face). In many ways the social model is embedded in the very structure of this list — the aim is to make it easier for institutions to remove barriers people face.

The format of the list raises the possibility that any system built on it could arrange the needs in either way. That is, either by starting with the context in which a need arises (“meeting me”, “contacting me”, “having a conversation with me” and so on) and then going through the sub-headings of “sight”, “sound” and so on. Or, by starting with “sight” etc. and then for each of those going through the different situations in which needs would be experienced.

This way of arranging the needs we felt offered the best chance of building a “tell it once” system. Where many different sectors and situations would use a system, customers might navigate first to the condition in relation to which they had a need and then in one place tick needs for every situation in which they might arise. Where a system would have much more specific uses (such as high street stores, or online services), customers might want to start with a type of interaction and then explore all support needs that might be offered in connection with it.

We believe this structure makes the list

  1. as easy as possible for institutions to use in order to understand and implement support needs quickly and with minimal effort and cost;

and

  1. best able to convey as clearly as possible and as fully as possible the actual support needs people have so that they stand the greatest chance of receiving the maximum benefit.

The extent of the list: starting with Sight/Sound/Mind

The three most fully developed parts of the list fall under the headings of “sight, sound, and mind” and consist of the needs that are both most commonly requested by people with conditions related to those headings and also most frequently able to be provided for by financial institutions. (The long term aims are to refine and expand the needs within and beyond those categories, to expand the sectors of firms providing those needs, and to increase the percentage of needs met).

We started with sight, sound, and mind because it felt like the way to maximize impact quickly, because of the nature of the needs, and because of what firms are already set up to do — and because of the relative regulatory simplicity around needs often related to disability (as opposed to more legally complex issues such as financial abuse or power of attorney). The aim was to build sufficient detail and completeness into a list related to these areas that a proof of value could be established that would enable the expansion to other sets of needs.

For the same reasons, the first version of the list limits “mind” to mental health conditions and dementia. We realised that much wider input would be necessary from those with lived experience of neurodivergence to identify those communities’ support needs, and that institutions would need to be educated to a much greater extent in order to meet those needs.

We very much hope that people reading this paper will be able to help build that part of the list.

Red-Amber-Green responses to first and second order needs

Because it’s really important to make sure the greatest number of people enjoy the greatest possible impact in terms of having their needs met, it was important when drawing up the list to understand what needs institutions could, at present, meet. And not only meet but meet in direct response to a notification as simple as a tick box (that is, without the need for detailed free text from the consumer that would require lengthy human intervention from the institution).

This led to very detailed conversations with multiple institutions going through the list on a point by point basis to understand which of the needs it contains could:

  • Be implemented in direct response to notification (for example, “I need letters in 18 point print.” We classified these as green)
  • Be implemented using the institution’s current systems, but only by requesting further information from the consumer (for example, “I need help with understanding numbers” which is something most institutions can provide, but only upon receiving more detailed information than a tick box could provide about the nature of the help needed. We classified these as green)
  • Not be implemented at present (An example that came up many times in discussion was printing letters on a specific colour paper. We classified these as red)

It was a working assumption that the list should contain a significant number of “green” actions so that consumers could benefit from systems built on it, and to avoid endless repetition of phrases like “we’re sorry, we would love to be able to do that but we can’t right now” that too many of us have become too familiar with.

On the other hand, it was also a working assumption that people should not look at the list and find only those needs listed that would have the least positive impact on their lives if met, leading them to wonder “why bother?” It was also considered desirable that some needs that could not at present be met by many institutions be retained in order to provide a roadmap for progress, and a reminder of work that remains to be done.

And the identification of “amber” needs provides a valuable insight into how future provision might be improved. It is often not simply the case that an institution needs to move from “we can’t do this” to “we can do this” but that they need to move from “we can do this in a way that comes at a great energy cost to customers and time cost to ourselves” to “we have found a way to do this with minimal cost of time and energy on all sides.” Making such a distinction may help determine the direction that future research takes, for example.

Furthermore, simply sitting down and having these discussions with us led on several occasions to greatly increased institutional awareness of gaps in provision and determination to fill those gaps — especially where competitor institutions had already done so.

The amber category of need also led to the recognition that we needed to distinguish on the consumer side between what we might call first order and second order needs. Someone might have a need for “more time,” for example. That is a first order need in that it accurately describes the nature of the need they have. But it is not sufficient information for that need to be met. That would require the description of a second order need, a more precise description of exactly how much time in which circumstances. Making this distinction in as many instances as possible, we soon identified, would enable systems to be developed where, for example, a tick in a box that describes a general need could prompt a second simple response identifying specific information that would enable the need to be met without further questioning. “I need large print” is a good example. A list of needs should present itself in as simple and short a way as possible for someone to identify their need without endless leafing or scrolling. But that initial recognition should then afford the opportunity to select from among precisely drawn option. This distinction between first order needs that keep the list simple and a further layer of second order needs allow, in practice, many of those “ambers” to turn “green.”

Action and Flag

Some needs will prompt organizations to do things (such as issue letters in different size print) whereas others will simply sit on a file until a customer contacts the institution at which point the institution will need to act appropriately, for example by speaking more slowly. The institutions we worked with distinguish between these types of response to a need. The former they refer to as “actions” and the latter as “flags.” The list needs to provide sufficient information for institutions receiving notice of someone’s need to make this distinction — ideally from their point of view with minimal human operation involved; and ideally from the consumer point of view without having to respond to a request for follow-up information.

How the List was developed

The list began with desk research that took the support needs that were already out there and compiled them together, looking for common threads that would enable them to be grouped in a way that would not be impossible to navigate. That gave a structure and a starting point from which to engage with consumers and organizations.

The following is a non-exhaustive list of some of the steps, consultations, deliberations and actions that were taken while the list was drawn up. The point of outlining some of the parts of the actual process of drawing up the list as it stands is to demonstrate that from the start communities that will ultimately be able to benefit have been not only involved in the process but influential in shaping the outcome; and to show that actual institutions in a position to take action to implement support needs that will improve people’s lives are willingly engaging in an effort to understand and then to implement those needs.

Of course, there are many reasons why institutions would engage in this process in addition to (or in some cases, I am sure, instead of) a genuine concern to improve people’s lives: the most obvious being a desire to comply with regulatory frameworks and a wish to enable customers to be just that — customers. But whatever the motive, the outcome is an improvement in people’s access to services. And having that continued engagement from institutions around this list will ensure that even where motives are not aligned between provider and consumer, outcomes should remain so. And a consistent dialogue may prove to be the most effective way of ultimately bringing that alignment in motivation closer (research has consistently shown that one of the most consistent drivers of good service is empathy).

It is this existing and embedded foundation of engagement that makes the list presented here something which gives both the disabled community and institutions value from helping to shape.

A case study of three conversations

I hope the outline of three areas of the discussions undertaken so far serve to illustrate the multilateral approach taken, and demonstrate why this is a valuable foundation worth engagement form a wider community to develop and build upon. The aim is to show how the decisions outlined above were reached

• through discussions involving all interested parties;

• by anticipating concerns and being concerned to give transparent answers to them;

• by ensuring our first priority was to make it as easy as possible to use this list to implement support needs that would make a genuine impact on real lives.

What we call the list

The first conversation to discuss represents the last change that was made, and possibly the most significant. When the project originated, this list was called the “Support Needs Taxonomy.”

Taxonomy means roughly the same as list, but in many ways it is a more precise term. That precision comes from the fact that the word refers to the way a whole system of information is arranged — the categories used, and the grouping of the information into headings and sub-headings. Provided adequate explanation is given, precision is a good thing to have in language, even when it means using words that can sound technical.

But from an early stage, disabled participants in the project had expressed concern at the use of the word, because of its implications for many of us. Taxonomy is a word that for many disabled people carries an implication of medical research. In particular it suggests research done “to” or “about” us, research in which we are being studied and not leading the studying. For this reason, we felt that the term could send the wrong message to exactly those people we want to take the lead in this project.

There was regular discussion of this use of words throughout the initial stage of the project, but ultimately everyone agreed with the concerns of disabled participants and disabled people who had been consulted, and the name was changed from “support needs taxonomy” to “support needs list” or “list of support needs.”

This kind of discussion and change may seem minor to many people looking in, but disabled people involved in projects are very used to having such concerns overruled. So having all parties agree to a change of the project’s name because of issues raised by disabled participants is significant. And it sets an important precedent.

“Red-Amber-Green” — ensuring “support needs” are genuinely supportive

We have already seen that it was important to be able to differentiate those support needs that can be met following a simple notification. The iterative way this was undertaken is illustrative of the approach adopted throughout, and which we hope will continue as the list develops in the hands of the communities it is designed to serve. Initial desk research based on published work by charities to describe the needs of those they serve produced an initial draft list of needs. This was then refined in collaboration with lived experience experts.

The resultant draft list was shared with financial services institutions who, in a series of individual meetings with the authors and representatives of Experian, ascertained on a need by need basis which of the needs fell into the categories of green, amber, or red.

Where the results were amber or red, institutional representatives often took those results back internally to check whether a workaround to turn them green might be possible, and if not, sometimes an alternative that could be met was suggested.

The revised draft was then shared back with charities and community representatives and decisions were taken over which “red” results to omit in the first version of the list, which to retain on record for later, expanded versions, and which to retain in the hope that they may become, with sufficient demand and pressure, able to be implemented in the near future. And suggested alternatives from institutions were discussed and either selected or rejected according to whether they met, or partially met, the original support need.

Need or Cause of Need

Do institutions need to know why we need a particular support? Or do they just need to know that we need it? This is a really sensitive issue, and any attempt to capture the nuance of that sensitivity in a table or list that can actually be used is bound to be flattened. But the discussions around how to arrange support needs covered a lot of very nuanced ground and attempted to reach a solution that accounted for all of it as much as was possible. (It is certainly an area where ongoing involvement from those with lived experience will be essential).

The principle adopted was “context not cause.”

And among the issues considered were:

• The implications for data processing of making the cause of a support need explicit. If the request for something as straightforward to implement as, say, asking for communication by webchat meant that sensitive personal data was conveyed which could, at least in theory, be retained on archive even where consent to the data being held was withdrawn, that could undermine the essential trust on which any use of this list would be built.

• Asking people to declare a cause for their need would be not just an unwarranted intrusion that could lessen access compared to those who did not need to hand over such information. There are also implications of medical categorisation and classification that for many in the mental health community for example are deeply traumatic.

• On the other hand, sometimes a need might not be fully understood, or might be implemented in a suboptimal way if it was not understood what was driving that need.

• Disability is often something people see as a part of their identity. The use of “identity first” language rather than “person first” language tends to be preferred by disabled people themselves in the UK (“disabled people” not “people with disabilities”; “d/Deaf”, “blind,” “autistic” are all preferred ways people in these communities refer to themselves). Organizing needs in the context of “sight/sound/mind” etc. reflects this.

Needs have been grouped under headings (initially “sight, sound, mind”) where people who have a support need are most likely to find it most intuitive to look and which avoids the additional friction of having to return after realising that they’d missed something (you might have needs that relate to how you receive deliveries, how you communicate, how much time you need to process information for example, but if you went to a place where you could ask for support you might miss one of these if you had to go into each heading, but if they all result from something about your hearing, and were all listed under that heading, you would be less likely to); and where institutions looking to implement those needs are most likely to find them in their own systems.

But because it will often be the case that people want a need met in very specific circumstances, it was also considered important that we make it possible to arrange needs in this way

Get Involved

This list is now at a point where it is the engine that can power prototype products, but for that engine to reach full power, we need the wider community to fine tune it with us. This is your invitation to do just that

Who we are looking for, and what we’d love them to do:

· People who have experience of a support need, especially disabled people for whom not having a need met creates a barrier to accessing services, especially online.

o Whether you are able to send us a single email about a barrier you would like to see removed that is not already covered in the list, or would like to be involved in helping to build an expanded version of the list, please go to https://whatweneed.support/ to find out how you can get involved.

· Institutions that want to meet their customers’ and clients’ needs.

o Your participation is vital in ensuring that organizations and systems that adopt this list are likely to be able to implement the needs it contains. We’d love you to help explain

§ which needs you can currently meet; and

§ which needs you could meet if they were phrased slightly differently.

o We also think it matters to you that you are able to hear what people need, so you can plan your future accessibility in a direction that will do real good for real customers.

· Developers that build apps, and the interfaces between those apps and industry software; innovators, and entrepreneurs

o We are sharing this list under a creative commons licence so you can come and build things that meet a proven need for customers and have already been “prototyped” for compatibility by the institutions who meet those needs. We invite you to come and build things — and, yes, make money from what you build.

We will provide you with:

· A website to make suggestions, and the opportunity to participate in a series of meetings through the year leading up to and including an annual congress, as we build the next updated version of the list

· Feedback on your ideas through meetings that bring all stakeholders together, and the opportunity to feedback on others’ ideas

· The opportunity and to be part of the oversight group that finally agrees the next stable version (you can read more about this at https://whatweneed.support/)

We aim to:

  • Produce a series of “stable versions” of the list that become cross-industry norms so customers are more likely to be able to have access to systems that will enable them to express their needs very little, or only once, and then have those same needs met across many different areas;
  • Expand and update those stable versions on an ongoing basis;

This list also provides an opportunity to:

  • suggest ways organizations can integrate how they meet support needs into their systems;
  • build applications and tools;
  • shape the direction of research, technology, strategy, and policy by identifying the real needs that organizations should be able to meet but currently do not.

You can visit the Support Needs List and take part in the conversation through the QR code below, which will take you to the website.

Authorship and Acknowledgements

Dan Holloway is a disability activist, Co-convenor the Futures Thinking Network at The Oxford Research Centre for the Humanities, CEO and founder of Rogue Interrobang, a spin-out of the University of Oxford.

Chris Fitch is Vulnerability Lead at the Money Advice Trust and a Research Fellow at the Personal Finance Research Centre, University of Bristol.

The authors have not been paid to write this paper, but have received payment for their contribution to Experian’s ongoing work in this area.

The work that has gone into this project has been happening in different places for a long time. Thank you to Experian for bringing those pieces together to create something that has the potential to create genuine impact and to be implemented on a wide scale. What has been notable throughout has been an uncommon willingness not just to ask, and to listen, but to change, and to take a willing step back when appropriate.

A big shout goes to the Digital Accessibility Centre for their invaluable input not just into this project but into this paper. It is more accessible as a result of their regular and insightful input.

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Dan Holloway

Dan Holloway

CEO & founder of Rogue Interrobang, University of Oxford spinout using creativity to solve wicked problems. 2016, 17 & 19 Creative Thinking World Champion.