FEATURE STORY: 9 Questions with Amanda Thompson, Executive Director of Utah’s First Peer-run Organization for Mental Health

In the spring of 2011, a local disability rights advocate, Amanda Thompson, learned about the concept of peer-operated services and galvanized a group of consumers/peers to begin meeting to discuss forming a consumer-run organization. In August 2011, the group elected a board of directors and organized as a nonprofit corporation with the Utah Department of Commerce.

Amanda Thompson was appointed Executive Director. In August 2012, Empowerment Services was granted 501(c)(3) tax-exempt status from the IRS.​ Empowerment Services is the first peer-run program of this type in Utah’s history. Peer-run service programs are operated and staffed solely by people who have personal experience living with mental health problems. These programs provide a variety of peer-based services to people with psychiatric illnesses.​

 In September of this year, USARA’s Family Resource Facilitator, Christi Dees, sat down with Amanda to learn more about Empowerment Services, how the program will contribute to Utah, and to discuss the current gaps in peer support services in the state of Utah. 

Christi:  Amanda, what is the overall goal of this program?

Amanda: That has really evolved with time. Part of what the advisory council will be doing is redrafting our mission with the guidance of the Board of Directors. Our current mission was written early on and we have learned so much since then. However, we currently have four goals under the SAMHSA grant:

• Goal 1:  Develop the infrastructure essential to effectively cultivate and sustain a united consumer voice and create system transformation. 
• Goal 2: Partner with people with behavioral health disorders and their family members to promote individual and system level health, wellness, recovery and resilience. 
• Goal 3: Partner with state agencies, service providers and community partners to provide education and needed system improvements to decrease suicide in Utah. 
• Goal 4: Promote peer learning opportunities that advance the knowledge of consumers to facilitate empowerment, foster the appreciation of resiliency gained through lived experience, and advance the understanding of peer support.

In addition, we are going to be starting some peer support groups in the next month or so now that we have an office space. Some of the models we are looking at are the Alternatives to Suicide Peer Support Group and the Hearing Voices Peer Support Group.

We also were just named a Center’s for Medicare and Medicaid (CMS) Certified Application Counselor Designated Organization. We will be providing information and helping people enroll for insurance under the Affordable Care Act (ACA).

Christi:  How did you get involved with mental health issues and this community?  

Amanda: My experiences, good and bad have made me who I am. I am really fortunate to have incredibly supportive parents who really believe in me. As a person who has struggled with mental health problems since I was a child, I feel like I have a greater understanding and empathy for how hard it can be to reach that place where we are ready to embrace recovery and take responsibility for our lives. I know for me, I have had some really dark times. For me at makes the simple things in life more meaningful, like my family and friends and my pets.   I don’t really need a lot to be happy.

Christi: What has been the biggest challenge in getting this program up and running?

Amanda: As with any nonprofit, funding in the beginning is always a challenge. I resigned from my job at the Disability Law Center in July 2011 and lived off of a small retirement account for a period. Then my mom helped financially because she believed in me and the mission so much.

I had hoped we would receive our tax-exempt status in time to apply for one of a few of the Substance and Mental Health Services Administration’s (SAMHSA) only grants designated only for peer-run organizations – the Statewide Consumer Network grant.  In May, 2012 that grant application was due. I actually wrote most of that grant application because I had spoken with an IRS representative who told me we were within weeks of having our tax-exempt status. Unfortunately we didn’t receive our tax-exempt status in time. We had to wait until the following year to apply for the Statewide Consumer Network grant which we were awarded on July 1, 2013.

In the meantime, I had to find a way to pay the bills so I applied for a job as a Certified Peer Specialist at UNI. I was hired there to work on the Warm Line and on the Mobile Crisis Outreach Team (MCOT). While it was difficult in one respect, because I needed to work full-time and get benefits, I gained some really invaluable experience and worked with some amazing people. I still work there on call.

Christi: What has been the biggest reward?

Amanda: The biggest reward has been getting to know so many people with shared experiences and gaining experience in peer support. We recently formed an advisory council and I was so impressed with the enthusiasm and passion of the people who came to the first meeting.  It has also been great to see this become a reality and for us to rent our first office.

Christi: Ideally, where would you like to the program to be in five years – ten years?

Amanda: I would love to have a recovery (drop-in) center with a snack bar, computers for people to use and peer support groups and activities. A big component would be whole health and wellness related groups, education and activities like a walking club or yoga. 

A study by the National State Mental Health Program Directors found that people with serious mental illness die an average of 25 years earlier than the average population nationally – 29 years earlier in Utah. This is due largely to modifiable risk factors such as smoking, obesity, substance abuse, and poor access to medical care.

I would also really love to open a peer-run respite center in Salt Lake City within the next couple years and I would like to see them available across the state.  Peer-run respite centers are an alternative to inpatient hospitalization. In some states they are actually licensed as a Bed and Breakfast and that is how I envision one: cozy, comforting and safe. They are staffed by peers and voluntary. I know I could have avoided many traumatic visits to the emergency room and psychiatric hospitalizations if there had been this option when I was younger.

It’s difficult for me to place a time frame on these things though. I would like to have them happen soon. I think we need them and I’m impatient.

Christi:  In your opinion, what are the three biggest gaps in peer support services in Salt Lake County?

Amanda: Certified Peer Support Specialists are still frequently underemployed and stigmatized in a lot of across the country. Utah is no different, although Salt Lake County has embraced the concept of peer support better than many rural areas have.

Most cities the size of Salt Lake have had a stronger consumer voice and most have at least one totally peer-run drop-in center. We are behind the country in many ways.

Christi: Why do you think these gaps exist?

Unfortunately when we are taking about mental health there is still quite a bit of stigma. There are still clinicians that are reluctant or refuse to see us as professionals.

Funding is always an issue. Many peer-run organizations receive some local funding, but that is always a challenge.

Christi: What solutions would you offer to improve these gaps?

Amanda: I think we need to continue to educate clinicians about our role, about recovery and about stigma in general.  I get those phone calls when someone isn’t allowed to work effectively as a peer specialist because of the reluctance and stereotypes. 

Empowerment Services is really working hard to build the consumer voice. To let people know that their opinion matters and is wanted and valued. We will continue to be strategic on how we approach this.

In wake of the recent media attention about mass murder and mental illness I think it’s important to keep a perspective. One in four adults will be diagnosed with a mental illness every year. The CDC now says that nearly 50% of adults will develop at least one mental illness in their lifetime. The vast majority of us are nonviolent, productive citizens. People with mental illness do recover. That doesn’t mean that we will eliminate all symptoms, but that we can have a happy, self-directed life, usually with the reduction of symptoms.

In addition, medication is not our only option for treatment. Many people that I personally know have chosen to use alternative therapies and to not use psychotropic medication. These are people who have been diagnosed with depression, bipolar disorder and schizophrenia. Recovery is about what is right for the individual.

Christi:  On behalf of USARA, thank you so much for sharing your insight with me today and giving of your time to do this interview.  We appreciate your contributions to our community and all your hard work! 

Amanda: You are very welcome. Thank you for your interest in me and Empowerment Services.