Guidance for Foundations on Creating Disability Advisory Groups

As part of a commitment to upholding “Nothing about us without us” and consulting with the disability community, teams may seek to develop advisory groups. Such groups have the advantage of building relationships between staff and disability leaders, fostering staff learning from members of the disability community, and providing direct advice to teams. They can also help ensure that our efforts are informed by a more diverse and representative group of disabled people expert in the specific areas on which teams are focusing.

Five key steps to developing an advisory group

  1. Develop a clear scope of work with specific tasks and estimate time frames. Confirm that potential advisors have the time and flexibility to engage as needed and understand how their advice will impact (or not) the work you are planning. Outline the limitations of the advisory role and that while all advice will be considered, it may not be implemented immediately. 
  1. Identify diverse advisors in terms of disability, gender, race, age, etc with the expertise to advise on specific issues or topics at hand. No group will ever be “representative”, but it’s important to consult with diverse voices to inform your work. Ideally, advisors should also have rich networks within the broader community. And remember no community is a monolith, so it’s likely there could be diverging opinions.
  1. Clarify decision-making. Identify who has the final decision-making control, the overall process and communicate this with all parties. Will staff distill and prioritize the input or are you trying to build consensus? There is not necessarily a preference, but best to set expectations for everyone involved, including staff, upfront.
  1. Compensate advisors for their expertise and time.  Depending on the length of engagement, compensate using honorariums (more limited time frame with focused scope) or through consulting contracts (longer-term). The amount should relate to the scope and term of the advisory group.
  1. Survey advisors on how it went and incorporate feedback to inform future processes.

Things to know

  • There is no right way. Teams should experiment and create structures that work best for them. For example, you may decide to hire a member of the disability community to coordinate the advisory group itself.
  • Building relationships takes time. You (or others on your team) will likely have initial exploratory conversations to build trust, provide context, and explain your approach. You’ll want to build this work into the work plan and schedule as early as possible.
  • Plan for accessibility: All meetings, both one-on-one and group meetings, should be accessible with accommodations such as sign language interpretation or live captioning. All shared materials must also be accessible. Remember: accessibility planning requires time and budget.
  • Value lived experience: Philanthropy has long dismissed or ignored the value of lived experience. Lived experience can often mean familiarity with: navigating systems of oppression and exclusion, advocating for policy changes, educating the community, and writing blogs or posting on social media. Some disabled people cannot work full-time because they may lose healthcare and other benefits. Therefore, they might not have “typical” professional paths we often associate with “experience.”

Things to Avoid 

  • Vague expectations and scope creep: Be as detailed as possible about goals, expectations and deliverables. Not only is this a universal best practice but is invaluable for disabled people who may require careful time planning or need to request and schedule supports (like ASL or personal care assistants). Advisors should not be expected to advise on everything related to accessibility or disability. For example, if they are part of a content advisory council, we shouldn’t ask for advice on technical elements.
  • Tokenistic consultation: Are you ready to hear feedback that shifts the direction of your work? Are you clear on what role such a group will have? Oftentimes you may be too far along and inviting review will only provide feedback you cannot or do not want to implement. While that still might be useful, it can be frustrating for all parties. When building inclusive panels, or events, reach out to community members. If representation is not possible, ensuring that the event itself is accessible and the disabled people are invited and encouraged to attend remains valuable.
  • Rigid structures: While philanthropy’s structures are constantly improving, they can still be exclusive of some people’s needs.  Many of our partners are navigating day-to-day challenges that may affect their ability to participate. The disability community particularly values flexibility and strong lines of communication. Rigidity and urgency of outputs may undermine strong relationships with community partners and the flexibility needed to solicit their input.
  • Prioritizing identity over expertise: While disability identity is often key to the advice we’re seeking, we should not equate identity with expertise. That could lead to sub-par advice and tokenization.

Adapted from a resource by Catherine Hyde Townsend, Senior Advisor, Disability Inclusion at the Ford Foundation