Community-Led Solutions for Addressing Racial Disparities in California’s Regional Center System

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Community-Led Solutions for Addressing Racial Disparities in California’s Regional Center System

Disability Rights California is asking the legislature to fund a type of study called community based participatory research. We want this study to help figure out the root causes of racial and ethnic disparities in California’s regional center system by identifying structural barriers, how they disproportionately impact communities of color, and how they can be dismantled. Read more to learn about how community based participatory research is different from traditional research and how it treats people with disabilities as equal partners in research and policymaking.

California’s 21 regional centers serve nearly 400,000 individuals with intellectual and developmental disabilities (I/DD). However, regional centers do not distribute services equitably. Data shows that on a per-person basis, regional centers spend about 50 cents on services for people of color with developmental disabilities for every dollar spent on services for those who are white.

Although we have seen many attempts at fixing this problem, inequities persist. We need to change how we approach the problem in two ways:

  • Shift the focus from navigating the system to changing it by removing barriers that disproportionately restrict access to people of color.
  • We must center the experts—disabled people of color who experience the impacts of regional center policies firsthand.

To ensure that their lived experience not only informs but drives future equity initiatives, California should invest in community-based participatory research, a research model designed specifically to center historically marginalized communities whose voices have typically been underrepresented in policymaking. CBPR has been used successfully in California and other states to analyze and address racial disparities in behavioral health, public health, and other related systems, and has proven to be an effective method for amplifying the voices of people with intellectual and developmental disabilities, whose perspectives are rarely reflected in policy design.

While the study should be open-ended to allow participants to identify the root causes of racial disparities in their own communities, initial focus areas could include the racial impacts of:

  • Gatekeeping policies that place the burden on disabled people to seek services from all other possible public systems before regional centers will consider funding them;
  • Policies requiring family members to provide unpaid support to disabled loved ones who live with them, regardless of their individual circumstances;
  • The broad discretion regional centers have to determine their own guidelines for when, how and for whom services are authorized; and
  • The design and implementation of new and restored services.
Traditional research Community-based participatory research
Traditional research Community-based participatory research
Researcher defines the problem Community identifies problem
Academic researcher holds expertise Expertise includes lived experience
People as subjects People as participants and collaborators
Community organizations may assist Community organizations are equal partners with researchers
Researchers control process, data, and interpretation Researcher and community share control equally
Policy implications are abstract Policy implications involve input and action from community members

This year, Disability Rights California is asking the state legislature to fund this study. This study is the first step in fixing the systemic issues in the regional center system. By identifying where structural barriers are, how they operate for communities of color, and how they can be dismantled, this study will help direct limited developmental services funds toward equity initiatives that are better targeted, more cost-effective, and ultimately more meaningful for people of color with disabilities.

For more information, view our full policy brief: From Navigation to Transformation: Addressing Inequities in California’s Regional Center System Through Community-Led Solutions