'Nothing about us without us': 3 bring lived experiences to new Utah health commission

SALT LAKE CITY — When the Utah Senate confirmed Evan Done's appointment to the Utah Behavioral Health Commission on Thursday, he carried a photograph of his mother in his jacket pocket.

She died as a result of a substance use disorder when Done was 27 years old.

"I just wanted to honor her but also all of the people I've known that I've lost to substance use disorders. My voice is here to represent them as well," he said.

Done is one of three Utahns with "lived experience" appointed by Gov. Spencer Cox to the new 11-member Utah Behavioral Health Commission. The commission will be the central authority for coordinating behavioral health initiatives among state and local governments, health systems and other interested parties to ensure that the state's behavioral health systems are "comprehensive, aligned, effective and efficient."

The commission was created by the Utah Legislature upon the passage of SB27 earlier this year. The legislation called for the appointments of one individual who has lived experience with a substance use disorder, another who has lived experience with a mental disorder and another who represents families of individuals with behavioral health issues.

Done (pronounced doan) is in long-term recovery from substance use disorder and is the associate director of Utah Support Advocates for Recovery Awareness.

"This is a very personal issue for me as I know it is for many of you on this committee," Done recently told members of the Senate Health and Human Services Confirmation Committee.

"When I was 11, my dad died by suicide. When I was 27, my mom, we lost her to her substance use disorder. There's my own personal experience, yes, but I've had family members suffer. I have experienced the criminal justice system first hand. I've experienced the foster care system here in Utah first hand, so I think I bring a lot of lived experience to the table here, not just being in recovery from a substance use disorder, but all of the things that have gone along with that."

Some of those other things include periods of homelessness, trying to navigate the publicly funded treatment system prior to Medicaid expansion, trying to find residential treatment, and working with insurance companies.

Beyond that, people in recovery need long-term supports and help navigating what's available, he said.

"We know that addiction is a chronic, but manageable condition," Done said.

"Recovery is not rare and recovery is not random. People get better all the time, all around us, as long as they have the appropriate supports they need to get better," he said, explaining that it is a chronic disease that needs to be attended to throughout one's life.

"So having that experience and that voice on this commission, I think, is really important as we think about policies and how we're going to affect systems across the state to better serve people with substance use disorders or mental health conditions," he said.

Done said that as a gay man, "that also informs my experience."

For example, "gay and lesbian folks are two to three times more likely to experience a substance use disorder. Transgender individuals are four times as likely to experience a substance use disorder," he said.

"A lot of that has to do with some of the root causes that we understand to cause addiction, and one of those is trauma. We know that people that have a history of trauma have a much greater likelihood of developing a substance use disorder, particularly if that trauma happened during their childhood," Done said.

A seat at the table

During development of the new Utah Behavioral Health Master Plan, leaders of that effort reached out to advocacy and recovery organizations to offer presentations but "we didn't have any representation on the committee that was developing the master plan itself," Done said.

"We gave some feedback to the powers that be just saying, 'Hey, one of our core organizing principles as people in the recovery movement is: Nothing about us without us. If you're going to have a conversation about a person like me, a person like me should have a seat at that table, have a voice in those discussions.' That's been a critical rallying point for us and organizations like ours across the country. So luckily, they (governor and Legislature) took it to heart," Done said.

Family matters

Many Utahns know Ally Isom as a former Senate candidate, for her public policy work for former Utah Gov. Gary Herbert and state agencies, communications roles for The Church of Jesus Christ of Latter-day Saints and her work in the private sector.

She is also a daughter of an aging mother who was diagnosed with bipolar disorder when she was 82 years old. Isom's mother has also been diagnosed with a cardiac disorder, advanced cancer and dementia.

"Subsequent to my mother's diagnosis, I had two adult children diagnosed with serious behavioral health disorders and was placed in the role of advocating for them as they navigate the health care system," Isom told the confirmation committee.

Isom said she has seen "the very best of provider responses" and met health care providers who cared for her loved ones in kind and tender ways that have been life-changing.

"I've also seen what I would say would be less than optimal responses from some providers. I have, with my family, navigated the trauma, the expense, the reality for human rights and personal accountability, as well as a complexity of systems, processes and roles — all very well intended, but incredibly challenging, when you have an ill family member," she said.

As a member of the 11-member commission, "my hope is to shed light on the lived experiences of families, but also I hope to see this commission create a unified approach for the state, one that focuses on needs. I know it's complex. I know every family is different. I know every individual is unique, but my hope is that we get to a place where it's not just a candid and good policy discussion in the theoretical but we get to a place where we're seeing practical outcomes," she said.

Lessons learned from mental illness

Julie Henderson Hardle, a former vice president for Optum United Healthcare, told the committee that she is living a life of recovery from serious mental illness and substance use disorder.

She was appointed to the commission as a member who has lived experience with a mental disorder.

"My journey with mental illness has encompassed most of my life, and like many, I'm a survivor of childhood abuse, and unfortunately, I didn't come forward with that information until I was well into adulthood, and the repercussions of that weighed tremendously on me and every aspect, mentally, emotionally, spiritually and physically," she said.

In early adulthood, she was hospitalized for the first time after a very serious attempt to end her life that required hospital care before she could be transferred to a hospital psychiatric unit.

"It was at that time that I was diagnosed with bipolar disorder, post traumatic stress disorder, which at that time was unusual for a civilian to receive that diagnosis, and generalized anxiety disorder," she said.

Hardle said she shared her diagnoses to better explain where she was at the time. "They in no means defined me as a person in the following years."

She experienced periods of mania and psychosis, was hospitalized several more times and for a while, lived on Social Security disability income "and it was a profound struggle," Hardle said.

"I could fill a book with those kinds of experiences, but what I want you all to know is that with the appropriate services and supports, people do recover, and that's an important thing to understand when we're talking about people with serious mental illness," she said.

While Hardle said she has an impressive resume of formal education, "that's not what brings me here today. It is my lived experience."

She recently concluded 13 years of work with a large managed care organization, which is significant because "at one point, I was told that I would never work again, that I would never be part of the workforce. My recovery very much involves getting back to work," she said.

In addition to her career in health care, Hardle has served on national, state and local leadership boards and commissions through Mental Health America and the National Alliance on Mental Illness among others.

"We all recognize that these are serious problems. They're complex problems. And I think sometimes a person with lived experience asks, 'What do I bring to the table?' I often have a tendency to see complexities and don't automatically assume that the solution for those problems is also complex," she said.

For example, when Hardle became aware that her personal recovery needed to be attached to something larger than herself, she determined her purpose would be educating others "using my experience, advocating for others, stepping up being counted for those who had not yet found their voice. That became my purpose," she said.

And in 2013, she began competing in triathlons.

"They take a lot of hard work, a lot of dedication, a lot of sticking to it. But what I'll tell you is I've had some great success in that arena, and what I've learned through my challenges with serious mental illness is what makes me successful as an athlete, and I'm very grateful for those lessons that I've learned," Hardle said.

"While I wouldn't wish them on others, they have been instructive in my life, very helpful in my life, and have helped me to get where I am today."

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