Including Individuals with Disabilities in Creating Policy Recommendations

Below is an edited section of a white paper recently authored by Manatt Health and colleagues from the disability community. The paper provides lessons learned from creating the California Master Plan for Developmental Services. It focuses on how to meaningfully include and support individuals living with intellectual and developmental disabilities (I/DD) in all stages of the work. In California, “self-advocates” worked in leadership roles with other members of the community to develop policy recommendations. The process centered on equity and made sure everyone’s ideas could be heard and included. 

paper describes ways to make sure you have an inclusive process when creating policy and systems solutions. For example: 

• Create respectful spaces for self-advocates to voice their thoughts and share their experiences. 
• Create diverse and inclusive committees and workgroups. 
• Provide easy to understand materials and accessible meetings. 
• Support self-advocates at every step in the process in the ways that work best for them. 

 It also provides recommendations to help other states and agencies, such as: 

• Involve self-advocates as leaders, not just participants.  
• Establish support systems at the beginning of the process.  
• Work hard to reach community members who may be difficult to reach. 
• Spend the extra time to make meetings and materials accessible.  

Including as many perspectives as possible takes intention, planning, and resources. People communicate and take in information in different ways. There is no “one-size-fits-all approach” to making it possible for people with I/DD to meaningfully contribute to creating policies and strategies to improve their lives. Be open to trying new things so that everyone feels included and valued. Equity is not easy, but it is always worth the effort.  

This paper was co-authored by Elena Tiffany a Master Plan Committee member and self-advocate and Olivia Raynor, a disability policy consultant and Master Plan Self-Advocate Facilitator Lead.