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The Harmful Realities of System of Care Work – Navigating the Untold: Part 1

In this blog we will hear from Jasmine Boatwright (she/her), Youth MOVE National’s Youth Program Coordinator. We are honored to share her voice and story with you all.

Written by: Jasmine Boatwright

Growing up, I was working as a youth leader for our local County’s System of Care (SOC) while simultaneously my family received those very services. This allowed me to see the good, bad, and behind-the-scenes of SOC. Giving me a unique, and personal, experience. During these years I had several, life changing, traumatic events occur. One of which was the death of my father. 

We realized my dad had cancer in 2011. Not having health insurance, my siblings and I began to pay out of pocket for my dad to be seen on a sliding scale for medical services. While applying, and consistently being denied, for medical insurance, my dad’s health continued to decline and worsen. You would think an unemployed 50-year-old man with a terminal cancer diagnosis would qualify for disability, but not according to the Department of Human Services (DHS). Without health insurance, it made it impossible to access quality care for my father. So, there we were, our father with a critical cancer diagnosis, and absolutely no other information for over a year. For over a year:

  • He had no knowledge of the stage of cancer he had
  • He had no knowledge of the type of cancer that he had
  • There was no follow-up care or instructions
  • No doctor was willing to see him on a regular basis
  • And there was no ability to get medications prescribed or funds to pay for the ones that were 

The System made him suffer. 

We applied for help through local agencies and organizations. We then realized that there were limited resources for low-income men of color, especially those diagnosed with terminal illnesses. Ultimately, these complications caused the cancer to spread throughout his body, and he passed away on July 15th, 2012, after over a year of suffering. The very next day after his passing, we received a letter in the mail from DHS that he had been approved for health insurance. 1 year later, 1 day too late. Not only was he approved, but the insurance would cover his medical costs going all the way back to 2011. 

Not only did the System make him suffer, but it ultimately led him to a painful, untimely death.

I went through all of this while being employed full-time as a youth coordinator and a youth leader within our SOC. I led a group of around twelve youth and young adults doing youth leadership work in Wayne County, Michigan. Since I only had a high school diploma, I was only hired contractually, which meant no benefits, no paid time off (PTO), no health insurance, no 401k, nothing. This caused me to return to work the day after my father passed away simply because I could not afford not to. 

The System made my dad suffer, and the day after his death, the System made me return to work.

Our youth leadership group went on to be accepted to present at the National Training Institute in Florida. Although of course folks at work were aware of the long struggle we had with my dad, they thought that since our group’s presentation was the day after my father’s funeral that it would be a great getaway for my grief.

The System once again chose capitalism and centered themselves over me.

The pressure to work,prepare to travel out-of-town, fundraise for my father’s funeral, to maintain my mom’s and the rest of my family’s health, not to mention my own, was immense and utterly overwhelming. Everything was now my responsibility, and I knew I couldn’t go to Florida, but I just didn’t want to let my people down. Folks even donated to the funeral expenses with the terms that I went to Florida to present. Even during the service, people were texting me seeking to ensure that I would still be going to Florida, to the extent that they actually arranged for me to leave the funeral and immediately be transported to the airport. 

At that moment, although I knew they meant well, the System missed my needs. A matter of fact, the System didn’t even ask or give me the agency, they simply chose capitalism.

Going to Florida meant that I couldn’t spend time with my family, that I couldn’t grieve, that I couldn’t be there for the folks who needed me the most, the folks who I needed the most, especially my mom. I feared losing my mom the most. 

My mom lost her sister, her brother, and now her husband in less than 5 months and wasn’t in good condition herself. On top of this, my mother, a recipient of mental health services under the System of Care, was cut off from all of her mental health medication and put at risk of losing her housing, having missed three appointments which was against the agency’s policy. My mom was on bed rest and had just been through three major losses. She just physically couldn’t get there. 

And neither could I, I never did make it to Florida.

At that moment it felt like the SOC had completely failed me and my family. They were not culturally responsive, they were not tailoring services to fit my mom’s needs, and they were not family or youth-driven. 

They were wrong.

I felt like an all-around failure. I failed to navigate the healthcare system and save my dad and now I was failing my mom and my work team of over 10 years. Those experiences, although not all were made out of malice or ill intent, added to an already traumatic situation. I knew my team loved me and wanted what they thought was best for me, but being so wrong just made it hurt more. I became distant, angry, inconsistent, unreliable, and bitter towards the job that I built and loved so very much. I struggled because I no longer believed in the services that I was hired to promote and support. I struggled to navigate relationships with staff and supervisors and even external partners.

I started to no-call no-show and was overall just checking out. I knew I needed therapy but after navigating my mom’s experience, I no longer had faith in the services offered in my county. I just kept asking myself why. Why would they do that? Why would the same agencies that sit across the table from me strategizing on how to improve services for youth and families and applying for multi-million-dollar grants, not do more to help my mom during this crisis? Me during this crisis. 

My mom was bedridden with no options for telehealth, phone, or home visits. Yet, the very system tasked to take care of her, to take care of us, was more concerned about grants presentations and creating programs that don’t directly affect the youth and families they target.   

After my experience and conversations with other young people at the time, I began to see all too clearly the gaps in mental, physical health and housing services in my county. I began to ask myself, as a young person from the same type of neighborhood, schools, and circumstances as the peers that I was promoting the System of Care services to, have I lied to them? How do I tell them that not only will SOC make their lives better, but it will be easy to navigate too? When in fact, I myself couldn’t figure out how to make better outcomes for me and my family? None of these systems were working together, dollars were being spent on programs that were not culturally relevant and didn’t meet the needs of the community, which of course, made the services disjointed, hard to access, and quite limited on what they could do to help elevate youth and families in our communities. 

Long story short, I became mad. 

I was fed up. I was tired of seeing work plan after work plan, year after year, loaded with agency and organizational trainings, conferences, summits, and resources in the form of flyers and buttons for youth and families – to learn about services that couldn’t help them. Couldn’t help them obtain housing resources without jumping through hoops. Couldn’t help them access food outside of a resource list to the nearest soup kitchen. Couldn’t help them get transportation so that the children could get to and from school and caregivers could get to work. 

All of the things that youth and families in my community need, they couldn’t help. Even today, these things still to this day lack funding and support. 

As a young Black woman who had dedicated almost 10 years of her life trying to improve services for youth and families, using my experiences and the experiences of my peers, and I was not valuable enough to be helped. Why? Because I lacked a degree? I was stuck. No bereavement, or PTO, no ability to step away. I wanted to focus on my health more than ever but without health insurance, on a limited income, making just over the limit for government assistance. 

I was stuck.  

We consistently ask youth and families to buy into services and systems that oftentimes have more gaps than benefits. We then engage them in leadership roles while not providing adequate training specific to their roles, equitable pay, coaching, mentoring, or even basic support in navigating everyday life. 

If we want to genuinely engage youth and families in this work, we cannot ignore the experiences that they bring to the table, good, bad, or indifferent, after all, these situations are the very things that make their experiences so valuable. 

In order to avoid more stories like mine, agency leaders, system administrators, government officials, community leaders, and everyone in between, all have to go back to the drawing board. We have to restructure how dollars are spent in our systems. We have to ensure that programs directly benefit youth and families while continuing to identify and eliminate policies that build barriers and not solutions. We have to ensure youth and family partners are being paid equitable wages with benefits and opportunities for growth, self-care, and coaching.

We have to ensure stories like mine don’t ever happen again. 

This Post Has One Comment

  1. Kaylah

    Reading this article really hit home for me.
    I’m a Youth Engagement Specialist in Texas and a LMSW. My mom has been disabled for a little over a year now. She has several chronic conditions, and ongoing acute issues that require inpatient hospitalization. She is 55 y/o woman, living without a hip, chronic bone infections, severe osteomyelitis, no insurance and no income. She has been denied disability, and Medicaid. I have been paying out of pocket for her medical and living expenses for the past year. ON TOP, of my own living expenses and two children. It’s incredibly frustrating to work in the helping profession and not be able to help your own loved ones.

    I ask myself this question on a daily basis. How is it that I’m a LMSW, cannot locate services and resources for her own mother? If a LMSW, is unable to locate services for their own family – how can we expect families who are undergoing a crisis and have no experience navigating these systems, find services?

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