To me, the only thing scarier than my brother is the state of health care. I have woken in night terrors, at a loss of what to do for twenty years. Sharing this point of view cannot be any riskier than the situation I have inhabited.
My brother is the victim of catfishing. And, I’m not writing about the one that he believes will fix his love life. In his early twenties, football concussions and stimulants led to a psychotic break. There aren’t even good days anymore, there are good seconds. My parents have aged, and he refuses to move out of their home. He tells my mom that he will end her before he moves out. In his one hundred square foot bedroom, he sends money to online predators he calls true love. He begs my parents for doctor prescribed stimulants he rarely takes in their prescribed dosage to counter the mood-stabilizers and anti-psychotics. Pills seem to worsen what he has. And technology allegedly doesn’t exist to learn if CTE is the acronym to label his atrophy. It doesn’t matter. By now, our family has lost faith in the American health care system.
I’m not just a sister, I’m also a health care provider.
When I dial his psychiatrist with concerns, she replies, “You know what you have to do.”
I reply, “No, I don’t. That’s why I am calling you. I’m scared for my parents. I’m sad for my brother and I’m exhausted.”
“You need to call the police…,” she answers.
I do not call the police. I refuse to criminalize the most vulnerable among us. Instead, I lose more sleep and sanity over what we call health care. How did it get so complicated?
Most of us pay into a system for services that don’t exist. We believe in having something to cover preventative care or just-in-case scenarios, and when just-in-case hits, pricey Band-Aids cover-up for long term solutions. This isn’t about one provider. In fact, my brother’s psychiatrist has been through so much with us, she’s at a similar cliff of dissolution. She has nowhere else to refer him in his current state. But did I mention she’s not covered under his insurance? My parents pay privately while he’s on SSI. My parents, themselves, are on a retired, fixed income. They’ve stayed the course though circumstances and coverage declines.
This brings me to HIPAA, which I consider to stand for Hoax In Place of Actual Action. Typical implementation jettisons collaborative planning, allowing providers off the hook from listening to those who care for the most vulnerable day in, day out. I’ve been told “this provider can help but your brother has to agree to it,” dead end. “You can talk to me but I cannot respond,” dead end. And my favorite, “I have to, first, talk to (your actively psychotic) brother for permission.”
Capable providers fill offices throughout America, yet they elude the reach of most Americans, especially those impaired enough that they lack the awareness they might benefit from health care. I’ve worked in various health care and geographic settings. I moved home to help my family. My current employer also provides case management to my brother. There aren’t many choices in rural health care. He qualified for services because he broke a hip after falling asleep at the wheel. I remember telling my parents in the ICU, “silver lining, he might qualify for more help, now.” The services have little to do with his primary mental status issues. And again, he has to agree to services offered to him, which so far amounts to a pill box. I’ll take something, even if it offers not enough.
At this same social service agency, we are transitioning from state oversight to insurance oversight. The noose tightens as I’ve been encouraged to prioritize compliance over advocacy and relational practices. By compliance, this translates to growing my caseload from the twenties into the sixties by this winter, optimizing volume of people served, contacting them every month, and face to face visits twice yearly. We are complying with a managed care standard. Most importantly, we will coordinate fiscally responsible plans, much of our work devoted to computer clicks trying to validate frequency and duration for things like nursing.
There won’t be less time to solve systemic issues such as lack of insurance credentialed providers. At the brink of busier, there will be no time. That may save managed care more money. There is no end game except 911. With current emergencies, I am faced with pressing charges against my own brother or, as a crisis intake worker advises, “call back if something actually happens.”
I await the moment I often live inside my head: another car accident, or a call back to that crisis worker – this time, my parents have actually been punched or kicked or…
Meanwhile, I practice mindfulness as often as I am able. It’s free.
Still, I wake in the night, knowing what has been, and where health care is going: further and further under the rule of a wealthy corporate elite. On the surface, it looks like something we need but inside American health care, it’s exploitation. Our current health care benefits those dealing out options with the least amount of risk for themselves while we the people scramble to survive one more day. Last night, I woke up, and this time I remembered I still have my voice. I might be scared but I do not need copay or prior authorization to write what heals me.
Since drafting this – the author has terminated employment with referenced agency to focus on family, writing, and serving as a mental health outpatient provider.
Jessica Quinn Honig (they/them; she/her) resides in the Philadelphia region, practicing clinical social work at the micro, mesa, and macro level. She holds a graduate degree in Arts in Education from Harvard University, a social work degree from Smith College, and an undergraduate degree from Bryn Mawr College. At the micro level, she is a therapist and life coach with a passion for helping others face barriers related to Complex Post Traumatic Stress from lived experiences of chronic oppression and systemic ‘isms. She has also coined and treats Art Anxiety, as discussed in her 2019 book: Reframe Your Artistry, Mindful Tools for Art Making at Any Age. At the mesa level, Honig facilitates workshops to engage community in cross-cultural and intergenerational dialogue inspired by art making, repurposing non-recyclables, and the natural landscape. At the macro level, Honig wishes to grow her voice as a writer for survivors of complex trauma, psychoeducate on the often overlooked individual and sociological impact of complex trauma, as well as inspire future generations to live simply and compassionately while thinking critically about social constructions. To the latter point’s end – she is a curriculum designer and guest lecturer on Empathy in Design, for the Azusa Pacific University Graduate Program in UX/User Experience and she is Art Editor of the Pennsylvania Society for Clinical Social Work’s Journal – The Clinical Voice.
This blog originally appeared on HPHRxHealth Righters.org, an online collaboration of the Harvard Public Health Review, of the Harvard T.H. Chan School of Public Health, and Health Righters.
Health Righters is a multidisciplinary publication exploring the intersection of healthcare and human rights, led in part by Harvard College.