Supporting Participation

• Do we routinely compensate PWLE for their time and expertise?
  • If no, what are the barriers to providing compensation?
  • If yes, to what extent do we understand preferences and offer flexible compensation options (e.g., different payment schedules and forms of compensation)?
• To what extent do we have access to the necessary resources to support participation (e.g., travel, technology, and language access)?

• Compensate and reimburse PWLE. Securing adequate funding for work with PWLE can be a challenge, and organizations often face several hurdles in creating processes and policies to compensate PWLE. Despite the challenges, it is essential for organizations to find a way to both remove barriers to participation through reimbursement and covering costs, and to provide compensation for time and effort that ensures that everyone — not only those who can afford to volunteer their time – are able to participate.
• Plan early for necessary resources and budget for the work. Staff leading work with PWLE may often need to advocate internally for the budget and resources required to support programs.
• Document your compensation and reimbursement policies.  Ensure there is transparency and full understanding shared across staff and PWLE you work with. Compensation and reimbursement policies can address:
  • Activities that are eligible for compensation and reimbursement
  • Recommended compensation rates that consider time commitment, level of responsibility, and take into consideration rates paid to other consultants
  • Internal procedures to process payments (i.e., internal forms and submission steps) 
  • Required documentation (i.e., W-9s)
  • Available methods of payment (i.e., check, direct deposit, and prepaid visa or gift cards)
  • Anticipated timeframes for each step of the process and a point of contact for any questions 
• Engage PWLE in developing your compensation and reimbursement policy and be open to receiving and acting on feedback about how your compensation and reimbursement policies and practices are working.
• Cover costs up front whenever possible such as providing travel stipends rather than reimbursing for costs after the fact. For people with limited financial means, it can be difficult to pay upfront and wait for reimbursement. 
• Overcome challenges. Organizations often encounter challenges as they create processes and policies to compensate PWLE. These suggestions for can help you overcome common challenges to routine and equitable compensation:
  • Interference with public benefits
    • Avoid assumptions about who is on public benefits. Instead, have an open conversation with all PWLE you work with about the potential impact of supplemental income on public benefits, connecting them with additional resources as needed.
    • Provide flexible compensation options that can mitigate the impact of benefits eligibility. Some options include:
      • Breaking up larger sums into smaller payments over time
      • Giving the option to be paid by gift card rather than check 
      • Offering other compensation options
      • Purchasing an item; paying a bill
      • Covering costs for someone to attend trainings/conference of interest
      • Donating in their name
    • Help people connect to benefits counseling and information on resources like ABLE accounts
  • Insufficient resources/funding
    • Make compensating PWLE a priority.
    • Create specific pathways for compensation, if you cannot compensate all advisory council members:
      • Develop compensated leadership roles within existing advisory councils
      • Create compensated opportunities for PWLE on specific project teams and initiatives
      • Write roles for PWLE into grant applications, project plans, and budgets
    • Make transparent decisions on how to compensate only specific subsets of PWLE in recognition of disparate barriers to engagement
  • Administrative/organizational challenges (a.k.a. policies, legal barriers)
    • Understand your organization’s administrative and financial processes and policies for compensation. Offer support to PWLE in navigating these requirements and advocate for simplification and streamlining of processes when possible. 
      • Explore the root cause for administrative and organizational barriers by using the “5 whys” approach.
      • Document barriers and their impact:
        • Track and highlight the contributions and outcomes of PWLE (and/or the opportunity costs of missed engagement)
        • Document and share stories about the impact of administrative/organizational barriers 
        • Engage PWLE as partners as you advocate within your organization to improve your compensation practices
      • If administrative barriers persist, explore a partnership with another organization who can manage and administer payments
  • The details – how to pay; how much to pay 
    • Compensation rates and practices vary widely from organization to organization. Use tools such as the National Health Council’s Fair Market Calculator for benchmarking.
  • Bias (conscious or unconscious) 
    • Bias about paying PWLE – particularly people from certain backgrounds or with certain types of experiences – can be one of the most challenging barriers to overcome because it’s one that people are unaware of or often the least comfortable acknowledging.
    • Consider:
      • What unspoken assumptions and prejudices may exist?
      • How can we invite people into conversations that explore the role of bias in our process and policies for engaging PWLE?
  • Dedicate funds to support participation in addition to providing compensation. This is considered reimbursement and includes:
    • Covering transportation costs (e.g., Taxis/Uber/Lyft, parking)
    • Providing or reimbursing childcare or other caregiving costs
    • Covering travel costs such as hotels and meals for in-person meetings, especially for organizations that cover large service areas
    • Providing technology access, such as purchasing professional Zoom accounts or providing computers and internet access, when needed, for remote participation
    • Covering meeting costs, such as providing food and beverage at meetings and events

Community Health Plan of Washington utilized the work of the Washington State Department of Health, Office of Equity PWLE compensation guidance to support the development of their policy. Here is the link for the DOH guide: DOH Community Compensation Guidelines.pdf

CommonSpirit partnered with a community-based organization to help administer compensation to members of their Research and Equity Advisory Council for Housing Insecurities (REACHI).

“Because of their reach and their history of experience as a community-based organization working with people experiencing homelessness, we reached out to them and just had a conversation about whether it would be doable for us to partner with them to handle payments to PWLE. Just an open conversation. I think we’ve worked with them before so there was a history of partnership there. And that’s where we began. And in terms of contracting, it’s just a normal contract where we outline the scope of work and we gave them a part of the budget as administrative fees for them to administer payments and that sort of thing. But it’s a normal contract directly with us. It’s been working great.”

• What practices do we have in place to make sure PWLE feel safe, welcome, and authentically included in the spaces we invite them into?
• What additional practices could we put in place to ensure people  feel safe, welcome, included, and able to participate fully?

Stephanie Burdick, a person with lived experience, discusses meaningful support practices.

There are a variety of considerations for building the types of spaces that PWLE can and want to be in. In truth, we all benefit and appreciate spaces that make us feel we belong. Considerations include:

• Physical accessibility and accommodation
  • Hire an accessibility consultant when you don’t have existing expertise on your team. Within your network of PWLE, there may be accessibility experts you can partner with – and compensate – for this work.
  • Ensure physical spaces are fully accessible. This means the buildings and meeting spaces used fully accommodate all people — including people with disabilities, and people using mobility aids such as wheelchairs and walkers, and any other ability needs.
  • Consider convenience and comfort. Organizations may consider holding meetings in community locations that can be more convenient and welcoming than healthcare facilities.
  • Provide standard accommodations. Accommodation can take many forms, from sign language interpreters to establishing community norms that safeguard against re-traumatization. Organizations can both:
    • Establish standard accommodations that are always provided (e.g., inform all PWLE you work with that you provide captioning and translation services at each meeting), rather than waiting for PWLE to request services
    • Provide opportunities for each person to express individual accommodation and support needs. This can take place during an onboarding process as well as through routine check-ins between staff and PWLE to identify ways to improve and support accessibility.
• Psychological safety and intellectual inclusion
  • Create a space where PWLE feel comfortable asking questions, expressing vulnerabilities, sharing stories, and engaging in healthy conflict without fear of judgment or re-traumatization
  • Model openness. Staff, particularly those with lived experience, may share their own stories or experiences in meetings (as appropriate and as they feel comfortable doing) to normalize honest conversation and encourage others to speak up as well.
  • Acknowledge and address power imbalances – particularly in mixed groups that include both PWLE and people in professional roles. This can look like:
    • Establishing a group norm to use first names for everyone (rather than addressing some people by titles and others by first name)
    • Being mindful of dress codes or other unspoken social norms that can create a divide and sense of “otherness”
    • Acknowledging at the start of meetings that people bring both lived and professional experiences and that both are welcome and valued
    • Monitoring the use of acronyms and jargon and appointing a facilitator to ask people to spell out or clarify anything that may be unclear or unfamiliar to certain members of the group
  • Intellectual inclusion means that people of all different levels of intellectual abilities, including people with intellectual disabilities, are able to meaningfully engage and participate. To support intellectual inclusion, staff working with PWLE can:
    • Communicate information in a variety of methods including written, verbal, and graphic to address the different ways people prefer to communicate
    • Offer individual support meetings to anyone who needs extra time or help to understand something
    • Use plain language. Eliminate acronyms and jargon and use appropriate reading levels

Image description: A pink circular graphic titled “How to improve psychological safety at work,” showing individual actions in a darker pink inner circle and collective actions in a lighter pink outer circle.

• Flexibility
  • Be flexible as you engage PWLE who may be navigating health and social issues that can require them to step away from the work – sometimes unpredictably.
  • Plan ahead and have back-up plans. To remain flexible for the unexpected, organizations need to plan ahead, allow extra time, have a contingency plan in case a participant needs to take a step back, and to be able to pause and ensure people feel supported if life circumstances disrupt their participation.
• Relationship-oriented engagement
  • Prioritize building relationships. Staff leading work with PWLE need to intentionally make space for relationship-building and prioritize interactions that go beyond just the work at hand. This can be as simple as taking time to get to know PWLE, asking questions about their background and health story, building empathy and understanding before starting a project. You can even just call to check in on how someone is doing — unrelated to shared work.
    • Dedicate time for building relationships. Prioritizing specific time for relationship building, both between staff and PWLE and each other can look like holding the first 15 minutes of virtual meetings for informal conversation or even holding dedicated social events – like community BBQs.
    • Utilize peer mentors by pairing PWLE who are new to the work with a more experienced peer to support relationship building as well as knowledge transfer.
• Cultural responsiveness and humility
  • Ground all cultural practices in genuine community insight. It is important to integrate and even honor customs, rituals and traditions, however, this must be handled in an authentic way to avoid inadvertent offence. Staff who are not members of the community they are engaging can work alongside community members in understanding how to best represent and honor cultural customs, rituals, and traditions.

Lawrence Lincoln, a person with lived experience, discusses the importance of using accessible language.

Community Care creates a welcoming environment across their organization.

“During meetings, we do a good job of letting everyone know that all opinions are welcome and that feedback is welcome. We really try just to make people feel welcome. Even just by always doing introductions. When you just first join something you feel like you’re new, and you’re the bottom of the food chain. But when there’s the president and all of the leadership and they are really taking their time to introduce themselves and making sure that you know they know who you are and you know who they are. It sticks with you. That people care that you’re here.”

• What communication formats and methods do we currently use to communicate with PWLE?
  • Are there opportunities to strengthen or diversify our communication approaches?
• What communication formats and methods work best for the PWLE we work with and to what extent do we prioritize communication in these ways?
• What resources would be needed to expand or strengthen the format and methods we use to communicate with PWLE?

• Prepare to meet diverse needs. People have different preferences and needs for how they prefer to learn and acquire new information. As organizations engage with different communities and PWLE from different backgrounds, communication should be adapted and presented in a variety of ways. Some key steps include:
  • Be attuned to clarity and literacy level
    • Actively simplify language, reduce jargon and acronyms, and adjust reading levels to ensure materials are easily understood by diverse audiences.
    • Create glossaries of common terms and acronyms that may come up for PWLE and have a document they can always reference.
    • Share materials ahead of time. Having materials ready and available in advance of a meeting and even offering a prep session can help ensure people are fully oriented to important context and details for the engagement they participate in.
  • Utilize multiple formats and channels
    • Provide both written and verbal communication. For example, send written materials and also offer a call to discuss the materials or respond to questions.
    • Employ multi-media options, such as videos, audio recordings, and infographics to express ideas.
    • Use technology thoughtfully. Bear in mind that the use of technology can expand access for some people and limit it for others. Options are important.
  • Support linguistic and cultural diversity
    • Provide translation and interpretation to ensure people can communicate in their preferred language
    • Acknowledge and reflect cultural norms and preferences. These considerations are not only related to the primary language used, but also about how communication can be familiar, culturally relevant, and easily understood.

Community Care prioritizes clear and accessible communication on complex topics.

“For example, we have regional quality committees, and they do have some folks with lived experience on them. Not a lot. It’s hard to get folks with lived experience to want to come to a meeting that has about 50 pages of reports and data every time. I mean, it’s hard to get anybody to come to that kind of meeting on a volunteer basis, but it can be really hard to find folks with lived experience who have a research background as well as lived experience. Accountability means that we’re making sure that what we’re showing people and asking for input on actually makes sense to them. Presenting things in a way that makes sense, in a way that’s most relevant to them, and then making sure that you’re really taking note of everything they’re saying, and trying to work that into whatever you create, and doubling back with them to see if it is, and if it did, take it into account.”