In a companion piece, I wrote about who sets compensation standards and why there is no national rule. This is the sequel for the moment that follows — when you have asked about pay and the honest answer is we do not have a budget for that.

Sometimes that is true. A grassroots project with no grant behind it. A planning group meeting months before the money lands. The question is not whether to be offended. It is what to ask for instead, because “no cash” should never quietly become “no value.”

First, Name the Principle

Before the list of alternatives, one thing has to stay fixed: lived experience is professional expertise, and unpaid is not the same as worthless.

The risk in any “what to do when there is no money” conversation is that it slides into teaching people to accept free work as normal. It is not normal, and it should not become the default. Everything below assumes you have already asked about payment, heard a genuine no, and decided the opportunity is worth your time anyway.

If the “no” is really “we never thought to budget for it,” that is a different conversation — and the last section is for exactly that.

Cover Costs — This Isn’t Optional

Reimbursing what participation costs you is not payment, and it is not a favor. No one should be out of pocket to contribute. Even a project with no honorarium budget can almost always cover:

• Travel and parking — mileage, transit, airfare, parking fees for in-person meetings.
• Connectivity — the cost of being online for virtual meetings, where that is a real barrier.
• Care costs — childcare, eldercare, or respite care that participating requires.
• Accessibility costs — interpretation, captioning, or any accommodation your involvement depends on.

If a project cannot even cover costs, that is a real signal about whether it is ready to involve people equitably. Worth raising directly.

Non-Cash Value That Doesn’t Touch Your Benefits

For advocates who receive need-based benefits like SSI or Medicaid, cash and even gift cards can jeopardize eligibility — so non-cash recognition can sometimes deliver more real value than a small payment would. Things worth asking for:

• Conference registration or travel — a paid seat at an event you would otherwise miss has genuine professional value.
• Training, courses, or certifications — skills you keep long after the project ends.
• Software, equipment, or memberships — tools or professional memberships that support your wider advocacy.

One caution, and it matters. Benefit rules are specific and individual. Some in-kind support is fine; some can still count against you depending on the program and how it is provided. Confirm the specifics for your own situation before assuming any of this is safe. This article is general information, not legal or financial advice, and I am not a benefits counselor.

Professional Currency: Credit, Access, and Skills

Some of the most durable value is not money at all. It is the things that build your standing and open the next door:

• Authorship and acknowledgment — co-authorship on a paper, a named acknowledgment, a byline, or a citable role. This is real academic and professional currency.
• A letter of reference — a concrete record of your contribution you can carry into the next opportunity.
• Access to closed rooms — a seat at meetings, advisory tables, or networks that are usually hard to reach.
• Mentorship and introductions — a warm introduction or genuine mentoring can outlast any one-time check.

Ask for these explicitly and in writing. “I am glad to contribute — can we agree now that I will be credited as a co-author?” turns a vague promise into a commitment.

Get Tomorrow’s Budget Line in Writing

Here is the move that changes the field, not just the moment.

When there is no money now, ask that compensation be written into the next grant or budget — and get that commitment in writing. Today’s unpaid planning group is where the next proposal’s budget gets drafted. If you are at the table early, you are positioned to make sure patient engagement shows up as a real line item rather than an afterthought.

A short note — “We agree that PWLE partners will be compensated in any funded phase of this work” — costs the project nothing today and protects everyone who comes after you.

Ask for the line before the budget exists. That is the only moment you can.

The Bottom Line

A genuine “no budget” does not have to mean you walk away empty-handed or undervalued. Get your costs covered. Ask for non-cash value that fits your situation. Claim the credit and access you have earned, and lock in a paid seat for next time.

And keep the principle in front of you. Agreeing to contribute once for free is a choice you can make. Letting it become the expectation is not a favor anyone should ask of you.

— Tom