Frontline Initiative: Advocacy and Voting

What Policy Advocates Do


Tony Anderson is Associate Director of the Association of Regional Center Agencies in Sacramento, California. Tony can be reached at

A Black person waving teal and fuchsia translucent tye-dye flags, one in each arm. Their back is to the camera, they are outside standing or walking with others. They have short, curly blonde hair. They are wearing a watch with a dark gray wristband, and a 2-3 inch silver hoop earring in the right ear.

As a direct support professional (DSP), I focused on supporting the needs of the people I was lucky enough to serve directly. My knowledge of the people impacting the lives of people with disabilities consisted of their family and friends, my frontline supervisor, and maybe the directors in the organization. In this article, I explore how policy advocates play a role in the lives of people with intellectual and developmental disabilities (IDD). Changing policy typically requires that people work together to make the policy changes to benefit people with disabilities and their families.

When the problems are large and multilevel and take years to resolve, groups often get someone to help them stay organized, focused, and strategic in their advocacy. This is the role of lobbyists.

So, what exactly do lobbyists and policy advocates do?

One way for people to increase the power of their voice is to organize with others who share their interests. The early community organizers described this as organizing around shared self-interest. When people come together around issues that personally impact them in their lives, they will be the most invested in working on the solutions. When the problems are large and multilevel and take years to resolve, groups often get someone to help them stay organized, focused, and strategic in their advocacy. This is the role of lobbyists. Today, the IDD community has many groups, associations, and networks who work to improve life conditions for self-advocates, DSPs, families, providers, and others in support of people with disabilities.

Who writes the laws that impact people with disabilities?

From the perspective of many self-advocates across the country, one of the most important changes in law came from years of complaints from people with IDD that the use of the "R" word was so strong and universally negative that it was used to bully and demean people with IDD. Even the statutes that were written to support and serve people with IDD used the word throughout pages and pages of federal and state laws. In 2010, President Barack Obama signed Rosa's Law, a bill sponsored by U.S. Senator Barbara Mikulski and championed by the mother of nine-year-old Rosa Marcellino. The law eventually changed all federal reference of "mental retardation" to "intellectual disability." Rosa’s law paved the way for my work with California State Senator Fran Pavley to champion a bill to change the terminology in California developmental services statutes. For at least a decade, policy advocates and grassroots leaders worked on this issue. Eventually, this important change happened in Washington, D.C. and then in state houses all over the country.

Tony Anderson has a slight smile as he looks at the camera. He has dark square glasses and white, grey, and black hair. He is wearing a dark blue suit coat, a white button-down oxford style shirt with a dark blue tie with light please designs on it.

Tony Anderson

The power of people impacted by the decisions of policymakers

Policy advocates can effect change when people with disabilities, families, DSPs, and providers come forward and communicate a clear need to change policy. By 2013, the California IDD service system had gone through decades of neglect and periodic cuts in service rates. The cuts dramatically reduced the state's capacity to provide person-centered services. Lobbyists, association representatives, and others finally banded together to address the problem. While the rhetoric from policymakers started to ramp up, the campaign didn’t cross the finish line until the most important constituents came forward. When we used Partners in Policymaking and other advocacy workshops to train self-advocates and families, they gained confidence and support from each other. They learned how to express their needs to policymakers. They figured out the proper channels to change public policy to work for them. By 2016, the policymakers committed the state’s largest investment in IDD services in decades. They committed over a half a billion dollars to the community service system that supports people with developmental disabilities and their families. Even more impressive, the policymakers have consistently invested every year since 2016 to build service coordination capacity and improve equity in service delivery across the state.

The importance of teaching policymakers about our community

Given the historical segregation and isolation of people with IDD, some policymakers probably have no experience with our community. Disability rights heroes like Ed Roberts, Judy Heumann, and Justin Dart, just to name a few, are famous in the disability community but not as well-known elsewhere. The only way some legislators find out about the priorities of the IDD community is when advocates visit them and share their stories.

In California in the 1960s, family members advocating for an alternative to state institutions targeted Frank Lanterman, the Republican Chair of the politically powerful Ways and Means Committee in the state assembly. Mr. Lanterman had no experience at all with people with developmental disabilities. However, families continued to meet with him and write to him about their experiences and the struggle they were engaged in. He eventually found their stories to be very compelling. He directed the development of a select committee and conducted extensive fact-finding activities. This was all in response to what the families were telling him. Eventually, legislation that is now known as the Lanterman Act was signed into law. That law built the California developmental services system. This only happened because advocates taught policymakers about our community needs.

We’re all doing our part

I’ve come to learn over these many years that this community of people with disabilities, families, DSPs, service providers, social workers, educators, and advocates all contribute to the lives and opportunities of people with intellectual and developmental disabilities. When we ignore the voices of families, we splinter off without direction and erode trust. When we discount the voices of DSPs, we block out perspective in real time and diminish quality. When we no longer get perspectives of our service providers, educators, and social workers, we damage our service capacity. If we don’t listen to each other, we weaken our ability to build community. And finally, when we don’t support the voices of self-advocates, we lose our way. We lose our purpose. It is the job of policymakers to listen to all these perspectives and voices and it is the job of public policy leaders to make sure they do.

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