As state behavioral health agencies collaborate more with people with lived experience, leadership can play a critical role in fostering effective and sustainable engagement. State agency leaders can serve as community engagement champions, translating support into resources and equitable practices that drive positive outcomes for both community members and the agency.
The Center for Health Care Strategies recently spoke with Brandy Martinez Hemsley, Executive Appointments Advisor in Oregon’s Governor’s Office and former Director of Oregon Health Authority’s (OHA) Office of Recovery and Resilience who identifies as a person with lived experience of behavioral health needs, and Steve Allen, former Director of Behavioral Health at OHA, about their efforts to improve community engagement related to behavioral health at OHA. Their partnership exemplifies how decision-makers, with support from people with lived experience and expertise, can drive internal culture change and meaningful community engagement.
Q. Can you share what led to your collaboration on community engagement within OHA’s Office of Behavioral Health?
S. Allen: I was brought in as the new behavioral health director, tasked with being a change agent. In addition to the charge to guide overhaul of our state’s behavioral health systems of care, OHA leadership committed to a 10-year transformational goal of eliminating health inequities. The context of these efforts were shaped by the pandemic, which highlighted deep disparities in our state’s health care systems. The scope and urgency of the needed shifts to our systems of care were beyond anything I had faced in my career, and I needed help and looked for people who I could trust and collaborate with. I found Brandy to be an extraordinary human being with wisdom and insights I needed. She was a catalyst in helping me think differently. We regularly met and discussed projects one at a time. This process was internally transformational for me, changing how I viewed my role and approached change.
B. Hemsley: At that time, I was about a year into my role as director of the Office of Consumer Activities (now the Office of Recovery and Resilience). Our team of policy and program analysts with lived experience aimed to integrate these perspectives into policymaking, program design, and evaluation. We also engaged with the community to ensure their voices were included. I started as a team of one, but with Steve’s incredible support, we grew to nine people. In our first meeting, Steve asked about my job, and shared a story about his experience supporting people with developmental disabilities and the importance of listening to those being served. That moment made me realize he was someone I could work with. He valued my perspective and the information I brought, which set a strong foundation for our collaboration.
Q. What are some of the challenges that Oregon faced in past efforts to engage people with lived experience in behavioral health transformation efforts?
S. Allen: I quickly learned that system transformation efforts had been ongoing for decades, typically initiated by the legislature or the Governor’s office. These efforts typically included the usual voices, including some from the Legislature and active providers, with token representation from people with lived experience. I grew to realize that these efforts too often had not resulted in meeting the needs of people in our state, in good part because these efforts had been unbalanced, lacking deep engagement with those being served, who had the wisdom to highlight their challenges and suggest solutions that would work for them.
Q. What advice would you give to community engagement champions working within the system to secure leadership buy-in and transform decision makers into champions? How did you influence Steve?
B. Hemsley: Identifying leaders who value lived experience is crucial. Government systems are slow and resistant to change, especially when collaborating with those with lived experience. Be strategic, find allies, and focus your efforts where they can have the most impact.
Building a genuine, respectful relationship with Steve was key. Over time, sharing my authentic self and experiences helped him understand and trust me more. This foundation of mutual positive intent allowed us to challenge each other to do better in a spirit of collaboration.
Leaders need to understand the importance of institutional authority. Roles with lived experience, especially in leadership, need positional power to advocate effectively. When you advocate for the positional authority you need, be sure to arm yourself with information about your position, skills, experience, and accomplishments. Once Steve elevated me to a leadership position, I had a greater impact, and changes began to happen. Another suggestion is to start small, demonstrate the value of your work, and give leaders the chance to see it in action. Support and coach them in community engagement. This gives leaders a positive experience of engaging with people and shows your communities that you’re making an impact. When they see agency leadership engaging in productive conversations with people with lived experience, it builds trust between the community and the organization.
Q. How did Brandy’s guidance influence your perspective on community engagement to drive behavioral health initiatives?
S. Allen: Brandy served as a bridge for me. In the executive branch, positions like mine are accountable to the Governor’s office and the Legislature. Influencers like government agencies and providers can significantly sway these offices. Shifting focus to being more directly responsive to the people we serve is disruptive to the established relationship and power dynamics and can feel risky. Brandy helped me navigate community relationships, providing information to elevate those voices. Through her guidance, I built relationships with community members and learned to engage differently. As Brandy mentioned, relationships and trust are key. Trusting relationships make all the difference in feeling confident and having the right information to move forward.
Q. How has your lived experience impacted your work with state leaders like Steve?
B. Hemsley: My lived experience impacted my work with state leaders both positively and negatively. Being open about my lived experience in a leadership position sometimes led to stigma. At times, I felt marginalized or dismissed by colleagues who saw me first as a person with behavioral health needs, making it hard for them to see me as a leader. This improved over time but still occurred occasionally. On the positive side, my lived experience gave me strengths like persistence, adaptability, and resilience — qualities that served me well in state systems resistant to change. When pushing for change, having resilience and tenacity is a huge bonus.
Q. What is one example of your collaboration together?
S. Allen: One of the things that we were charged with was the implementation of 988, which is similar to 911, but specific to behavioral health concerns or crises. There was an established 988 committee, and one of the things that I decided to do was to stop the original committee. There was token representation of people with lived experience, and I could tell that we were going to get the same old results with the same old process. So, we got permission from the Governor’s office to restart the committee on our terms. Brandy played a huge role in doing that. I always learned something new when I listened in to their work, and it had everything to do with who was at the table. The power dynamics dramatically shifted.
B. Hemsley: Often by the time states are having a conversation with community members, the plan is pretty well-baked, and there’s not a lot of space to make any big changes. Needs can go unaddressed because community members didn’t have the ability to be part of that initial conversation. When we were designing the new 988 system, we flipped the whole structure on its head by starting with community members. We had two groups: one group was people with lived experience from all kinds of different perspectives, and a second group was focused on equity, and making sure our communities of color were represented and served well with this new system. We asked both groups: “What do you need this new system to look like? What should it have? What should be left out?” And then we took that information to the providers, the policymakers, and other state folks, and said, “Okay, this is what the community has told us they need. How can we make this work? What are the barriers that you see?”
Q. What advice would you give other state leaders and agency staff on how to successfully engage people with lived experience to transform behavioral health services?
S. Allen: Studies show that only half of people with serious mental illness receive services, and just 10 percent of those with substance use challenges seek care annually. Understanding the “why” [behind these numbers] is crucial. What are people’s experiences with the current systems? Why aren’t these numbers closer to 100 percent? Consistent, ongoing support is essential, but we’re often missing the mark. We need to think, listen, and engage differently, starting with hearing from those with the most expertise on what they need to succeed. Listening to these individuals is key for system transformation. The rewards are boundless.
System transformation requires self-assessment. For me, it began with personal transformation. I had to rethink my habits of thought and assumptions, which weren’t serving anyone well. Having advisors like Brandy to help translate and support is incredibly helpful, but ultimately, leaders must find ways to engage differently. Providers need to listen differently when offering services. Be bold, listen to your heart, and listen to those around you, especially those you serve.
B. Hemsley: Focus on relationship building. At OHA, we emphasized moving at the speed of trust. Many with lived experiences have had negative encounters and may be slow to trust. Building these relationships takes time. Keep showing up and be patient. As people see you following through and listening, trust will grow. Don’t just show up when you need something — build real connections. We also need to trust community members and people with lived experience. Believe them when they share their experiences and needs. Be impeccable with your word, as nothing destroys trust faster than a lack of follow-through.
Follow the community’s lead and show up with humility. Be willing to go where the conversations take you, as there will invariably be questions you never thought to ask and topics you never considered. Listening to these insights can provide the most valuable information.
