Equity for people with I/DD in California’s Regional Centers (plain language policy brief)

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Equity for people with I/DD in California’s Regional Centers (plain language policy brief)

This is a plain language summary of the brief. View the full brief here.

Many people with intellectual and developmental disabilities need help to do the things they want to do in the homes and communities of their choice. In California, people get help with these things from regional centers. Regional centers work to connect people with intellectual and developmental disabilities to the help they need. 

Regional centers do not treat everyone fairly. People of color get less help than white people. This is because the system makes it harder for people of color to get help.  

  • This is called structural racism. That means that even if certain people are trying to be fair, there is still a problem with the system. 
  • This is a problem that our government wants to improve by focusing more on health equity. Equity means all people would get the same opportunities. 

Small changes to the system have not worked so far. We cannot reach equity without BIG changes. But first we must understand how and who our system does not work for. Then we must work with those communities to make big changes.

We have four ideas for how to make the system fairer:

1. Change policies that make it harder for people of color to get services. 

Some of the rules we have now do not work for everyone. Some rules make disabled people do a lot of work to get services. 

This is called administrative burden. It can look like: 

  • Filling out lots of forms
  • Making phone calls
  • Following up again and again

These tasks are a lot of work. It is extra hard if you are very busy, work a lot, or do not speak English.

One way this happens is with generic resources. 

Generic resources are ways to get help outside of the regional center system. They can be through other places like Medi-Cal or a school.

Our rules say people must go to other resources before the regional center will pay for the services they need. Many people of color say this is a big problem with our system. 

Another problem is how to decide how much services a person gets. Many people at different levels in our system make those decisions. But sometimes they discriminate without being aware of it. 

To fix these problems, we need a better system. This could mean:

  • Having computer systems to keep track of the services. 
  • Hiring staff with special training to work with other agencies to make it less work for the disabled person. 
  • Making regional centers follow the same rules for how much services a person gets.

That way the disabled person does not have to do as much work to get services. And the decisions about how much services the person gets will be fairer.

2. Track all regional centers’ progress toward equity. 

We should make the regional centers share their policies with the public and report data on their progress. Then we can reward the regional centers that make progress. This could mean:

  • Making regional centers follow the California Public Records Act. The California Public Records Act is a law that says that the public has a right to get information from state and local governmental agencies.
  • Giving more money to regional centers with strong outcomes for people of color. Right now, the regional centers have some ways to measure progress. We should make sure the measures include equity. Then we can reward programs that work well with communities of color.

3. The Governor asked all parts of the state to work on equity. Regional centers need to follow that call. 

They should make equity a priority in all programs.

We have two examples of how to do this:

  • The regional centers tried to restart social recreation and camping services. They did not restart it fairly for everyone. They should learn from this when rolling out new programs.
  • Right now, the regional centers have a Service Access and Equity Grant program.
    • This program gives money to community groups that help people of color connect with the services that they need. This is a good program, but we think it could be even better.
    • The Service Access and Equity Grant program could work better by
      • finding communities that have not yet been included and giving them funds
      • sharing things that work well
      • expanding and funding programs that work well so that more people in the state can benefit.

4. Rethink how to partner with our communities. 

People of color with disabilities should have a say in how the system works. They have experience with the problems. They also have ideas on how to fix things. They should be involved in every step of making changes. 

One way to do this is with a type of research study called community-based participatory research. This study would be led by disabled people of color. They would work with experts to find ways to fix these big problems.