Feature Issue on Self-Advocacy for People with Intellectual, Developmental, and Other Disabilities

Good Stakeholder Collaboration


Kristofor Medina , a Consultant with Green Mountain Self-Advocates, may be reached at

Max Barrows , Outreach Director of Green Mountain Self-Advocates, may be reached at

Diana Mairose , a Board Member of Self Advocates Becoming Empowered (SABE), may be reached at

Thomas Caswell , a Member of Green Mountain Self-Advocates, may be reached at

Karen Topper , Administrative Director of Green Mountain Self-Advocates, may be reached at

Good stakeholder collaboration cannot occur unless agencies focus on making all interactions and information-sharing accessible.

When thinking about equal rights, we must think about who is representing our needs. Is the collaboration equal parts self-advocates and family members and representatives from state and provider agencies? It is important to maintain a balance in voices.

Self-advocates have a large stake in how agencies representing our interests handle business. Our thoughts and opinions are important. Self-advocates are not there to fill a quota. 

We provide a safe space for advocates to think carefully about what we want to talk about.

Presuming competence is vital in our work. This means assuming we are capable of understanding and doing this on our own. Presuming that one is not intelligent, just because of the way they look, is a tragedy. We may need support, but give us a chance to be leaders.

The falsehoods about people with intellectual and developmental disabilities (IDD) are strong. It can be difficult for providers to switch from being our staff to being our equal partners on a team. In our experience, people with IDD benefit greatly when organizing with peers, providers, families and other advocates. We also want to be fully involved in important decisions. We are all equal and we are all here to learn. Be welcoming of people from different cultures. Be patient and understand that we need to tell our stories while we have government officials in the room.

We have heard it before, but we need to continue to say, Nothing about Us Without Us! Whenever decisions are made about our lives, we must be in the driver’s seat.

We might be nervous, but it is important to let other people know what we are thinking and feeling, whether by talking, using sign language or gestures, or using other communication methods.

It is a priority for the Self-Advocacy Movement to support people with IDD to attend and participate in meetings in their state and across the country. People with disabilities can attend a meeting, but do we really understand the purpose of the event? That is where self-advocacy groups come in. Peers support each other by explaining why we are going to a meeting. We talk about the ways it might help us. We encourage our friends to speak up. We answer questions, introduce new people to the people we know, and help them with writing and reading. We make sure everyone can hear and see things when we are at a meeting.

Our goal is to prepare as much as possible ahead of time. We often meet to discuss the talking points that are most important to the upcoming advocacy effort. We provide a safe space for advocates to think carefully about what we want to talk about. We talk it through and we practice until we are comfortable enough to speak out.

Learning from our peers taught us what we can do to make a difference and made us proud of who we are.

Peers can make a big difference when we are learning to make our case. They make us feel confident and watching them teaches us how to speak up and take risks. Taking on leadership roles has changed our lives for the better, and we know this is a two-way street: We give to the group just like they give to us. Learning from our peers taught us what we can do to make a difference and made us proud of who we are.

 We need to think of creative ways people can contribute to the movement if they cannot leave their homes due to accessibility and family situations. Peer leaders need to spend time with people where they are and hear their stories. Not everyone can travel to a state house to talk to government officials, but there are many ways we can advocate.

Some of the essential ways self-advocacy organizations support the collaborative process include:

  • Recruiting people with IDD to participate on committees and boards
  • Peer mentoring and leadership training
  • Plain-language summaries of policies
  • Support to identify and arrange for accommodations to participate in meetings
  • Inclusivity training for committees and boards
  • Training for job coaches on how to support a person with IDD in professional advocacy roles
  • Technical assistance on using technology to maximize team participation
  • Teaching agencies how to find resources for transportation, interpreters, job coaches, personal care attendants, cultural brokers, and translators to address accessibility requirements.

The rewards are great when we involve people with IDD in the broader Disability Rights Movement at all levels of creating change. This gets us closer to what we all need to succeed in life.

Strategies for Better Including People 

Before A Meeting

  • Send information ahead of time. Material should be simple and understandable enough for everyone to learn from and use.
  • Hire peer leaders to work side by side with the planning team. They can support self-advocates to be involved. They can meet with folks ahead of time to go over the agenda. Together they can think about what they want to say at meetings. They can assist to make sure all the materials are written in plain language.
  • Confirm the time, place, and get a list of who is attending the meeting in advance over email. Try not to discuss issues in an email thread, because some people may get left out and not know what is being talked about.

During A Meeting

  • Clarify the goals. Remember introductions, which make people feel included.
  • Provide accommodations, such as agendas with pictures and text. Allow enough time, and present information in multiple ways. Have the agenda printed, projected on a screen, and read aloud.
  • Say what rules you are using to run the meeting, such as Robert’s Rules of Order, and explain them.
  • Have a note taker. Avoid using words that only some people understand. Use short sentences. Stick to one idea per sentence.
  • Meeting leaders should get everyone involved. Give plenty of chances for everyone to speak in meetings. Check in to make sure everyone knows what is going on.

After A Meeting

  • Even when you think you were clear, be open to checking in after the meeting. Often people need extra time to completely understand information and talking outside of the meeting helps.
  • Ask: What could we have done to make it better?

Have people on the outside (not employed by agencies) check-in with self-advocates to see if they felt included and ask what can be done to make it easier for them to share their ideas next time.