The term “Coproduction” has been around for well over fifty years. A term coined in the 1970s by Professor Elinor Ostrom (an American Economist). The idea came from Prof. Ostrom’s research into local crime rates. The local police force had changed tactics from walking “the beat” to using their patrol cars and, as a result, crime rates started to climb. Her research suggested that the police needed to work alongside the community to “coproduce” systems and services, and that the police had made a decision based on their understanding without collaborating with the people whose lives they affected; the local community. 

In more recent years, the term has been used more within the voluntary sector (charities) and the public sector in areas such as health and social care, to create services that are fit for purpose. This, in theory, sounds like an amazing opportunity! Your local services want you (whether you’re reading as an Autistic person or someone with other long-term conditions/disabilities) to come and shape the future of services! Amazing! but… is it working?

I am going to say “service” throughout this article, but do feel free to substitute that word for research, project, document, etc., because I am talking about anything that has “co-production” alongside it, but for ease, I will just refer to services.

Skewing the Data

How many times have you looked at a service (or a proposed service) and thought, “This isn’t right?” and the response is “Well, it was co-produced”.

Have you ever asked for the data to back up that response, because it can be shocking. 

As a Charity CEO, I have to ask this question a lot, and the responses are concerning.

Earlier this year I was handed a proposed “strategy” to support Autistic people within a service, and the level of “co-production” was parents/carers of Autistic people had written it and “some Autistic adults” had looked over the final piece.

I have worked with projects that have claimed they are “co-produced” only to point to one Autistic staff member out of a team of many Allistic (non-Autistic) people. 

I have also seen pieces of work that were done entirely by Allistic people and shown to one Autistic person to be “tone checked” before release and slapping on the “Co-Produced” stamp of approval.

Many organisations will use the term “co-produced” in the hope that you’ll not complain, or that it will look like a supportive and inclusive service, but in reality, the level of coproduction isn’t appropriate or what you would envision when you hear the term.

Are We Being Used?

In my job, I have to do a delicate balancing act with my time and resources. If I were able to, I would do everything, for everyone, and never charge a single penny… but that’s not how things work!

I do sit on quite a few “voluntary boards and committees”, and I give my time and knowledge where I can, but I am always aware of where that line is between volunteering support and being taken advantage of, but I know many of my Autistic chums out there, don’t always know where that line lays.

I used to know an Autistic person who did training for a large autism charity. They would talk about the difference they were making, travelling up and down the country to deliver training and educating the general public about autism spectrum conditions. I later realised this person wasn’t actually being paid for their time. This organisation would charge thousands of pounds to companies for their training, and then would use Autistic people to deliver it. The only reimbursement (payment) they would give to these people was a “travel allowance” which essentially meant they paid for their train ticket. 

They played on Autistic people’s need for fairness, equality and justice to make money for themselves, and this is constantly happening.

Please don’t misunderstand me here; I am not saying “don’t volunteer”; what I am saying is “volunteer your time and resources sparingly“. Don’t agree to volunteer for something that could make an organisation a lot of money (such as being a trainer or providing training for free) and be wary of what you are giving your input to (are you helping design training that will make the company money without any payment to yourself?).

What Should Co-Production Look Like?

Fair. Honest. Transparent.

Over the past year, I volunteered some of my time to co-produce a toolkit.

The charity was approached by the researchers, and I offered my own time as a participant because I met the criteria. The team running the project laid out very clearly what their aims were, and how they were going to collect data to create the toolkit. A group of Autistic participants would have video calls with them every few months to review their progress and give feedback. The feedback was then incorporated into their work, and we kept this cycle going until we got something effective. All the participants got some form of vouchers for our time. We knew that this research could eventually be used to create training, that would be provided to support workers through skills for care, so we were aware there may be a potential for them to make money from us. This was outlined at the start, and we chose to participate because the research was important to us. I think throughout the whole project I gave them a maximum of 10 hours of my time (video calls and email reviews) and received vouchers as payment for that. 

The team were honest about what they were doing, why and how. They were transparent in saying “Yes at some point we may create training from this, which we could make money from” and were fair in their reimbursements for time and how they treated participants.

Summary

Your time and opinions as an Autistic person are valid and valuable. I wholeheartedly agree with volunteering some of your time to support the co-production of services and projects but make sure you’re checking out the following:

Are you being listened to? If you’re constantly in meetings where you or other Autistic people are giving views/concerns and they’re not being taken on board, actioned or even acknowledged then you should leave and save your spoons.

Are you being used? Are you being mined for information, training material or skills that should be paid for? Do you have the whole story? if things don’t seem transparent to you, ask the questions.

Are you the only “coproduction” taking place? You are only one person, and your views are valid, but it’s highly unlikely that your views/needs are the same for all Autistic people. Coproduction needs to be a proportionate group of people, not just asking one person’s opinion.