An Update from the Field: How Science and Policy Intersect in the Provision of Disability Services

As a graduate student with the Adolphs lab, Brenna Outten studies human emotion and social cognition. Now, in her internship with the California Department of Developmental Services, she's seeing how policymakers synthesize available research insights to develop and implement evidence-based strategies for supporting people with autism. In the following Q&A, she provides some updates about his experience so far.

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Q: Where are you interning, and what does the office or agency actually do?

I am interning with the Autism Services Branch of the California Department of Developmental Services (DDS), which is part of the California Health and Human Services Agency.

Broadly, DDS oversees the coordination and delivery of services and supports for people with developmental disabilities and their families across the state of California.

One thing I am learning is just how large and complex this system is, and how many people in different roles are needed to make it work. There are clinicians and service providers who work directly with individuals and families, researchers who analyze data on this population and the effectiveness of state services, and policy staff who use and interpret that data to quickly inform policy and budget decisions. There are also so many other roles: social workers, legal experts, self and family advocates, and many others, all working together to make sure that people and families receive the appropriate treatment, support, and long-term care they need. It has made me appreciate just how much coordination goes into providing these services. It is truly a large and significant effort involving many different areas of expertise.

Q: Who relies on the work your office produces, and what do they use it for?

People with autism, their families, and their communities rely on the work that DDS produces. People look to DDS as a reliable source for informing policy and best practices for autism support, therapy, educational resources, and guidelines for families, local nonprofits, and regional centers. Because of this, it is highly important for the branch to stay up to date on current autism scientific literature and evidence-based, validated clinical practices; monitor local clinical and residential centers across the state; keep in close contact with care providers and clinicians; and, most importantly, stay in close communication with ASD self-advocates and families to keep their needs at the forefront.

Q: What does a typical day or week look like for you there?

Mainly, I work in an office setting and have been combing through tons of literature, regulations, and statutes across the United States to compare how autism services function and are operationalized in California. So, a lot of my time is spent gathering information, reading state and federal procedures, and comparing different approaches.

Outside of my projects, because the department is so big and has so many different roles and people needed to make it run, along with working on my direct projects, I have also been meeting with people who have different roles both in the Autism Services Branch and in DDS more broadly. I have been learning more about their specific roles, what their work involves, and just how many diverse backgrounds and areas of expertise are needed to make the department run.

Q: What's surprised you about what people in your office care about when they look at scientific evidence?

I am not really surprised by this, but my time here has more so reinforced the importance of using well-validated scientific conclusions when informing policy, because those policies, mandates, and state procedures can have a very real impact on people's lives and experiences, and I have been able to see that. I am pleased to see that scientific rigor and validation are highly regarded when making decisions that affect people's lives in such a tangible way.

Q: What's one thing that looks different about science-and-policy from the inside than it did from the lab or classroom?

Here, the work is less exploratory in the sense that, in my research, I have the opportunity to ask very niche but open ended questions for the sake of knowledge or simply to explore cognitive mechanisms of how people with autism behave individually. Of course, the broader goal of my research is to better understand people with autism, help make the world more accommodating to individual differences, and perhaps contribute to better long-term health and well-being outcomes for people in the ASD community, but a lot of my work and work being done at Caltech is broadly exploratory. Research for the sake of knowledge is incredibly important and has led to scientific discoveries, breakthroughs, and advances, but here at DDS, that is not the primary goal. The projects done here in DDS are all for a specific purpose of information gathering. The goal is to gather, analyze, and validate information quickly to inform policy that has a real and immediate impact on peoples' lives. So, it is less about exploration and more about direct applications of using evidence to provide the most effective and immediate support. Both research settings are important, but the timelines and goals are very different in this space compared with the lab.

Q: What's something you've come to appreciate about the people your agency serves, or the problem it's working on, that you didn't fully grasp before?

Something I have come to appreciate is how aligned the branch here and this work is with my motivations for why I wanted to become a scientist in the first place. Knowledge and discovery are powerful, and I love that about academic spaces. There is nothing quite like being on the cutting edge of science. But outside of those academic goals, there are also real people who are trying to get support for their everyday lives, and it is incredibly fulfilling to see the work being done here directly applied to the people it is meant to serve.

Lab research does absolutely have that impact too, but there is often more of a lag between research done in the lab and when its implementation in real life. Here, it has been really fulfilling to see how effectively and efficiently the autism team is able to translate its efforts into policies, education, and resources that are directly intended to apply to people in the community.

Q: What are you looking forward to for the rest of your internship? 

I'm looking forward to developing deeper connections with the people in this branch. They are all incredibly skilled and talented, and even though I thought I already knew a lot about autism, I learn so much every time I interact with someone on the team!

I'm also looking forward to seeing the projects I have been working on and the information I have been gathering actually go toward informing a stance or policy recommendation. Information is really important for making well-informed decisions, so it will be exciting to see how the work I have contributed to is used in practice.

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