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

The world is missing out on a huge pool of untapped talent. People with disabilities often serve as board members of the provider organizations who offer them services. They rarely are considered for other community organization boards, however, and this needs to change.

The Pennsylvania Inclusive Leadership in Action (ILA) project was created to encourage organizations to include people with disabilities as members of their boards and committees. To make this happen, the project did research about board membership and shared tools and  resources. ILA also chose community organizations to recruit and support individuals with disabilities as board members. These members contributed a greater range of perspectives and solutions to challenges facing today's community organizations. The project was funded by the Pennsylvania Developmental Disabilities Council from 2014 to 2017 and was managed by the Institute on Disabilities at Temple University.

The responses to a survey we developed showed that boards need to include more people of diverse backgrounds, and that people with disabilities should and could be included in that process.

We provided community organizations with ways to recruit people with a wide range of disabilities who wanted to serve on boards. Organizations were given the necessary materials and tools to include and accommodate people with a wide range of disabilities as members of an organization's boards.

To match people with the right organizations, we collected information from people interested in serving on a board. We noted their interests and skills. Data was also collected from interested organizations about what their boards needed and their expectations for board members. Many people with disabilities may not be aware of the organizations in their community that need board members. Community organizations may not know how to reach out to people with disabilities. This project helped bring them both together.

The ILA project developed a three-part webinar series, Diversity Includes Disability, which included:

• PART 1: Considering Individuals with Disabilities as Members of Your Board of Directors
• PART 2: How to Accommodate Individuals with Disabilities as Members of Your Board of Directors
• PART 3: Creating a Successful Group Culture on Your Boards of Directors

Two forms were created to assist in the placement of people with disabilities on boards. The first form was an ILA Board Membership Interest Form, which asks prospective board members two questions:

What are you most passionate about?

What skills would you bring to the organization as a board member?

People thinking about becoming board members learned how to ask for needed accommodations. We learned that new board members would benefit from having a mentor until they are comfortable. We talked about ways to make meetings more accessible, including holding them online.

A second form called the ILA Gaps Analysis for the Board of Directors let board members know where gaps in knowledge exist and where to look for new board members to fill the gaps.

Three people were placed on boards in the Pittsburgh area. The organizations were CORO Pittsburgh (a leadership development organization), Thomas Merton Center (a nonprofit organization focused on social justice), and the Lupus Foundation of Pittsburgh.  Evaluations completed after three and six months by the presidents of the boards and the new members showed both parties were very satisfied with the placements.

Through ILA we learned three major lessons:

1. People with disabilities are as busy as everyone else. Many do not have the time or desire to serve on boards. Opportunities to show the value and importance of participating are needed.
2.  Boards look for specific skills in board members. This may make it hard, but not impossible, to match a person with a disability to a board.
3.  Matching a person to a board takes a lot of time. Many boards in the Pittsburgh area look to external board training and matching services for assistance.

People with disabilities have unique talents to offer to communities. It is time for people with disabilities to be valued and included rather than excluded. Denying them a seat at the table is a loss for the community, the state, and the world in general. Adding people with disabilities to community boards is key to ensuring that we are hearing and meeting all our communities’ needs.