Worth it? What are payments like for people with lived experience?

This article was initially published in July 2021 edition of Parity magazine: Learning from Lived Experience support and subscribe to this great magazine created by The Council to Homeless Persons

What are payments like for people with lived experience collaborating with services today?

We’re asking! Our Lived Experience payment survey has had more than 90 responses in the 3 weeks it’s been open — and this is just the beginning. It’s not too late to have your say.

A glimpse of our respondents, mix of ages 34% LGBTQIA+ folks, 5% Aboriginal and Torres Strait Islander Peoples, 39% People with disabilities

This survey is still open, it’s not late to contribute
https://co-design.link/payment-survey

We’ve already heard from a broad range of people about the ways they collaborate with services, including engagements such as co-design workshops, focus groups, document or policy reviews, program evaluations, sharing their story (via speaking engagements, media or in writing), being on a committee or Consumer Advisory Group, project work, policy submissions, or any other way they are invited to share their lived experience expertise with a service provider.

We asked them if they:

  • always/sometimes/never get paid?
  • how — cash, voucher, prepaid eftpos card, direct deposit?
  • by what measure — hourly, or per engagement?
  • and do they have a choice in payment method?

We wanted to know:

  • Do they know if they’re classified as volunteers, employees or contractors?
  • Do they understand their reporting obligations to Centrelink (where applicable), and the ATO?

The short answer is — payments are wildly variable

On a spectrum from zero payment, to professional rates, and administered via numerous different payment methods, often without a choice that fits people’s individual circumstances or wishes, and may be troublesome to the point that they decline to participate, or fear risking access to hard-won welfare benefits.

This is what we’re hearing

1. People want choice around payment and they know what works for them

2. People are anxious about how payments affect them

3. People with lived experience face unique risks and barriers to participating

People want choice around payment and they know what works for them

Scale balancing cards and a piggy bank: 69% Direct deposit to bank account vs. 2.2% Voucher or store gift card
69% Direct deposit to bank account vs. 2.2% Voucher or store gift card

“Different circumstances that fluctuate at different times means if I have a variety of options available for payment I am able to assess the best most beneficial method to suit my situation…Flexibility to choose would help to reduce stress and difficulty around earning”

“Why direct payment? three reasons: firstly because I can use it how I wish, secondly I won’t lose it and thirdly, because the work I give is like any other work. Imagine if you gave a professional consultant you hired a Myer card.”

“Firstly payment should be made as a matter of respect, secondly a Woolies gift card or whatever is almost not worth it.”

Recognising and valuing a person’s time and expertise, in a way that doesn’t leave them worse off for helping to improve our services, should be a given.

Some sectors lean on gift vouchers, how sustainable is that for co-design and co-production?

People are anxious about how payments affect them

“They should be able to be received without “sneaking”.

People in receipt of Centrelink benefits are required to report these sums as income, even if they are paid by honorarium (which are exempt from taxable income). More regular or substantial sums will mean a person loses a percentage of their benefit payment. Confusion surrounds what date to declare earnings and if payment is not processed promptly following an engagement, they could lose part of their benefit in that fortnight and not be able to pay rent or meet their living costs. For social housing tenants paying rent as a percentage of their income, their rent may increase.

Just the stress and anxiety around knowing their obligations to report to Centrelink can be enough that people decline opportunities to contribute, and we may be missing out on the very perspectives that are needed in the decision-making room.

Pie chart: 1 in 4 people had declines a consumer activity because of anxiety around payments
1 in 4 people had declined a consumer activity because of anxiety around payments

Tellingly, over 27% of people surveyed have declined opportunities because of this anxiety around payments — and this doesn’t include the people we couldn’t survey because they’ve never participated (for this reason). With all the bureaucratic hoops to jump through, it can be a real headache for people to manage their finances and tax returns, and they don’t have the means to pay for professional advice. Some people worry that declaring any amount of income could affect their eligibility to claim a Centrelink benefit, and the thought of losing that meagre safety net is unbearable.

If the ATO don’t consider it assessable income, should Centrelink?

People with lived experience face unique risks and barriers to participating

The stakes are high for the people we need to collaborate with. Participation might not be worth considering, when weighed against the risks.

We are working with folks who have been systemically marginalized by inequality, discrimination and poverty, who are the only ones with direct expertise in how our services work, or don’t work. Their firsthand knowledge is crucial, not only to our service design, but also advocacy, policy, planning and governance.

Quote “I could lose Centrelink payment, I’m just on the cusp of being eligible and an extra hour or 2 can put me over the top. I need that security in case I’m unable to work due to health reasons”
Quote from a survey response

Lived experience is a marketable skill, on par with academic qualifications. In service design (and evaluation), these are the essential voices, we cannot do co-design (co-production, participatory design, human-centred design) without them. Why should they not be remunerated, as other paid staff and consultants in the room are? And further, that remuneration should not carry undue risk to housing or welfare rights.

How can we ensure the right voices are in the mix, if people are put off by the risks of participating?

This is a human rights issue, and we need to solve it now

“Everyone has the right to participate in decisions which affect their human rights. Priority should be given to people in the most marginalized or vulnerable situations who face the biggest barriers to realising their rights”[1]. (Australian Human Rights Commission)

With the growing calls to include the voice of lived experience in the design of government, and government-funded not for profit services (such as recommendations from Royal Commissions into Mental Health, Family Violence and Disability), now is the time to address the systemic blockages and policy gaps, so that people are free to contribute and equitably remunerated for their time and essential expertise.

About us

The Consumer Participation Practice Network (CPPN) is a group of practitioners from Victorian-based services encompassing health, mental health, homelessness, family violence, youth, alcohol and other drugs, legal and justice services, and peak bodies including the Council to Homeless Persons and Youth Affairs Council (YACVIC).

Join us, we’re just getting started

If you have contributed your lived experience to a service provider and would like to share your experiences or concerns about remuneration, please answer the survey. https://co-design.link/payment-survey You can also leave your details, to be part of the ongoing work on this topic.

If you are a Consumer Participation practitioner or service provider organization and would like to join the mailing list to be kept up to date with our research and advocacy efforts, or to share your practices for our evidence base, sign up here. https://co-design.link/mail

Credit

👏 Thankyou to all our wonderful respondents, we can’t wait for the next chapter

👀 This article was initially published in July 2021 edition of Parity magazine: Learning from Lived Experience support and subscribe to this great magazine created by Council to Homeless Persons, thank you Noel Murray.

🖊️ Sharon McDonald is a Lived Experience and Consumer Participation practitioner, working for Launch Housing and advocating for systems change.

🎨 Jo Szczepanska is a consumer advocate who wants to live in a fair and healthy world, where services are co-designed with communities. She is an award-winning multidisciplinary designer.

[1] Australian Human Rights Commission, Human Rights Based Approaches https://humanrights.gov.au/our-work/rights-and-freedoms/human-rights-based-approaches

Join us and a QR code to https://co-design.link/mail

Jo wants to live in a fair and healthy world, where services are co-designed with communities. She's multidisciplinary designer with a background in research.