We Take Care of You

Every Step of the Way

We deeply value your time, your voice, and your trust. When you take part in one of our projectsm we want you to feel safe, respected, and informed every step fo the way.

Safe, respected, and informed

At PiCC United, your time, voice, and trust matter deeply to us. When you participate in one of our projects, we want you to feel safe, respected, and well-informed, not burdened by uncertainty around legal or financial matters. That’s why we do everything we can to ensure you have the information and options you need to make informed choices about how your time is reimbursed, whether that involves taxes, public benefits, paperwork, or other considerations. This page offers clear, essential guidance on how compensation, gift cards, and donations are managed, and what they might mean for you. 

We’re here to help.
If anything is unclear or doesn’t feel right, please reach out. Patient involvement should never come with unintended consequences.

United Kingdom-based Participants

If you live in the United Kingdom and are participating in a PiCC United project, it is important to understand how compensation, gift cards or expense reimbursements may affect any public benefits you receive. Below is a step-by-step guide to help you navigate this:

Understand what ‘payment’ means

There is a key difference between:

    • Payment for your time and contributions
    • Reimbursement of expenses (e.g. transport, meals, childcare)

Only payment for your time may affect your benefits. Expense reimbursements do not. Learn more here: What is payment and reimbursement?

Check which benefits you receive

The benefits most likely to be affected include:

    • Universal Credit
    • Employment and Support Allowance (ESA)
    • Income Support
    • Jobseeker’s Allowance (JSA)
    • Housing Benefit

PIP (Personal Independence Payment) is typically not affected by the User Involvement Payment. Read more here: Which benefits may be affected?

Inform Jobcentre Plus or your advisor

If you are being paid, you must inform the relevant authority in advance.

You’ll need to disclose:

    • Who is paying you
    • How much you are receiving
    • What the payment is for

Let them know before payment is made to avoid issues later on.

Decide whether to accept payment or just have your expenses covered

You can choose to:

  • Say, ‘No thanks to payment – I only want my expenses covered.’
  • Say, ‘Yes please – but I want to know what it means for my benefits first.’

Some organisations may offer to hold your payment while you decide. More info here: How to choose – and what it means

 

Get advice if you are unsure

It’s perfectly normal to seek guidance. Contact:

  • Disability Rights UK’s Advice Centre
  • Citizens Advice
  • Your local Welfare Rights Advisor

Extra: Keep track of all payments and expenses

Save receipts and payment summaries. This helps if you are ever asked for documentation or need to clarify anything.

If anything is unclear or doesn’t feel right, please reach out. We’re here to support you. Questions about compensation, reporting, or opting out of payment? Email us at: Hello@piccunited.org

United States of America-based Participants

If you are participating in a PiCC United project and live in the United States, it is important to understand how compensation, gift cards, or donations may affect your taxes or public benefits. Below is a clear overview to help you make informed decisions.

IRS Reporting and Tax Responsibilities

If you receive $600 or more in total compensation from PiCC United during a calendar year, you will receive IRS Form 1099-NEC by January 31 of the following year. 

You are considered an independent contractor, not an employee. You are responsible for reporting the income on your tax return and may owe self-employment taxes.

Please note:  Certain other payment methods, such as gift cards and donations are also considered taxable income under IRS rules, even if no cash is directly received. We have provided more information about this below.

W-9 Form Requirement

To receive payment, you must complete IRS Form W-9, which includes your name, address, and either your Social Security Number (SSN) or Individual Taxpayer Identification Number (ITIN). Without a completed W-9, PiCC United may be legally required to withhold 24% of your payment for federal tax purposes (known as backup withholding).

Impact on Government Benefits (SSI, Medicaid, SSDI, etc.)

If you receive income-based benefits, (e.g. Supplemental Security Income (SSI), Medicaid, or Social Security Disability Insurance (SSDI)), compensation, including gift cards, may affect your benefit eligibility or the amount you receive. We strongly recommend that you consult a benefits advisor or your caseworker to understand how participation and payment may affect your situation.

Gift Cards as Compensation

Gift cards are treated like cash income if they can be used to purchase goods or services, by both the IRS and public benefit programmes.
This means a gift card may reduce your benefits during the month it is received. If you are unsure how a gift card will impact your situation, please talk to your case manager or let us know if you prefer an alternative method of reimbursement.

Option to Donate Your Compensation

If you prefer not to receive compensation (or a gift card), you can waive payment in writing and ask PiCC United to donate the amount directly to a charitable organisation or cause of your choice.

✔️ If arranged before you receive payment, it will not count as income and won’t affect your benefits.


❗ If you receive the payment or gift card and then donate it yourself, it will be treated as income.

Sample Waiver Statement:

“I waive my right to compensation for my participation in [insert project name] and request that the payment be donated to [insert organisation]. I confirm that I have not received and will not receive the amount personally.”

State Tax Obligations

Depending on your state, PiCC United may also report your payments to state tax authorities. We advise speaking with a tax professional to understand any state-level obligations.

Keeping Records and Getting Help

Please keep all documentation (e.g. 1099-NEC, W-9 forms). If you have any questions about your specific situation, a qualified tax advisor can offer personalised guidance.

Useful Links: Gift Cards, Tax Forms, and Benefit Regulations

SSA – Spotlight on Gifts
→ Explains how SSI treats gifts and gift cards: SSI recipients link.

IRS – Form 1099-NEC 
→ Used to report payments over $600 (non-employee compensation) to independent contractors, such as speakers or freelancers.

IRS – Instructions for Form 1099-NEC
→ Official instructions for how to complete and issue the 1099-NEC form.

IRS – Form W-8BEN (for non-U.S. persons)
→ Used by non-U.S. individuals to certify foreign status and claim tax treaty benefits.

IRS – Instructions for Form W-8BEN
→ Step-by-step guide for completing the W-8BEN form correctly.

Our goal is to make things as easy and transparent as possible. This information provides clear and essential statements about how compensation, gift cards, and donations are handled when you are based in the United States. This includes what it may mean for your taxes or public benefits.

If something is unclear or doesn’t feel right, you can always reach out. Although we cannot provide tax or benefits advice, we are here to help. If you have any questions about compensation, or opting out of payment, please contact us at: Hello@piccunited.org

How to receive payment from PiCC United

To ensure your payment or compensation is transferred securely and efficiently, we use PayPal. Below is a brief guide to help you set up your account (if you don’t already have one), and what information we need from you.

If you already have a PayPal account, please provide the following:

    • Full name (as it appears on your PayPal account)
    • Email address linked to your PayPal account
    • Country of residence
    • Preferred currency (if different from EUR)

If you do not have a PayPal account: Setting one up is quick and free. Visit www.paypal.com and follow these steps:

    1. Click Sign Up
    2. Select Personal Account
    3. Enter your email address and create a password
    4. Add your contact information
    5. Confirm your account via the email PayPal sends you

Or follow this detailed guide: How to create a PayPal account.

PayPal Privacy policy

PayPal’s  privacy policies vary by country. You can find the relevant policy for your location, by visiting: https://www.paypal.com/worldwide, selecting your country then scroll to the ‘Privacy Policy’ link.

Examples:

For countries in Africa, Asia and other regions, we recommend following the steps above to find the relevant privacy policy as they may vary according to local laws and regulations.

If anything is unclear or doesn’t seem right, please don’t hesitate to reach out. We’re here to help. For questions about compensation, reporting, or opting out of payment, contact us at Hello @ piccunited.org

If you are not using PayPal, we can transfer your payment directly to your bank account.

To process a bank transfer, we need the following information:

    • Your full name
    • Name of your bank
    • Bank address (optional)
    • IBAN number
    • SWIFT/BIC code
    • Preferred currency (default is EUR)

Example:

    • IBAN: DK500040044040116243
    • SWIFT/BIC: DABADKKK
    • Bank: Danske Bank
    • Currency: EUR (or your preferred currency)

Please note: international bank transfers may take a few business days to process, depending on your bank and country.

All payments are processed on the 20th of each month. If you have not received your payment within 5 business days after this date, please contact us at hello @piccunited.org. Include the project name in the subject line and the word ‘payment’ in the message body. We always follow up and ensure that you receive the honorarium or compensation you are entitled to. 

We use a variety of bank transfer options, including Wise Business, a secure digital platform that allows us to send money to over 70 countries with low fees and no hidden currency conversion charges. Wise Business complies with GDPR and implements strong data protection measures. 

Additional Tip: Keep track of your payments and expenses.

Save receipts and payment summaries for your records. This will be helpful if you are asked to provide documentation.

If something is unclear or doesn’t feel right, please don’t hesitate to get in touch. We’re here to help. For any questions about compensation, reporting, or opting out of payment, contact us at: Hello @ piccunited.org

PiCC United FMV Guidance

CountryPiCC United Role CategoryCurrencyMaximum Recommended AmountEstimated EUR Equivalent
CanadaAdvocacy Leader / Strategic AdvisorCAD00
CanadaEngagement Partner / ContributorCAD175119
CanadaPatient Voice / Personal Experience ContributorCAD12081,6
GermanyAdvocacy Leader / Strategic AdvisorEUR265265
GermanyEngagement Partner / ContributorEUR115115
GermanyPatient Voice / Personal Experience ContributorEUR8585
SpainAdvocacy Leader / Strategic AdvisorEUR00
SpainEngagement Partner / ContributorEUR160160
SpainPatient Voice / Personal Experience ContributorEUR6565
FranceAdvocacy Leader / Strategic AdvisorEUR00
FranceEngagement Partner / ContributorEUR7575
FrancePatient Voice / Personal Experience ContributorEUR5555
United KingdomAdvocacy Leader / Strategic AdvisorGBP00
United KingdomEngagement Partner / ContributorGBP135157,95
United KingdomPatient Voice / Personal Experience ContributorGBP7081,9
ItalyAdvocacy Leader / Strategic AdvisorEUR235235
ItalyEngagement Partner / ContributorEUR7575
ItalyPatient Voice / Personal Experience ContributorEUR6060
United StatesAdvocacy Leader / Strategic AdvisorUSD225209,25
United StatesEngagement Partner / ContributorUSD130120,9
United StatesPatient Voice / Personal Experience ContributorUSD125116,25