***I have been asked to name the insurance company. Trast is insured through his father, with UMR. UMR seems to be an extension of United Healthcare in some way.***
Trast sits, cross-legged and cocky, on his loft bed. He’s telling Ayden, his younger brother stories of magnificent adventures while Ayden listens and quips the ocassional “Really?” and “You’re kidding me! No Way!” Trast’s hair is brittle bleach-orange, and at 16, he looks like an adult. His mannerisms are jerky, but feminine, and he’s got a cinammon stick hanging out of the side of his mouth. He takes drags from the cinammon stick and continues his story.
“I couldn’t just leave him alone there at the emergency room…”
Trast isn’t telling stories about summer camp. He’s reliving his recent glory days, a three and a half week exploit of sleeping on the streets of LA that kicked off with a major blow-up at home and ended when the police got a tip from someone who’d seen his face on one of the thousands of missing posters plastered around the city. I cannot listen to Trast tell his stories, because I can’t afford to feel that much anger when there’s so much to do. He thinks of that time as the happiest he’s ever been. I will never recover from the hell of it.
Instead I sit at the kitchen table and read his discharge paperwork from the treatment center he’d been admitted to hours after we found him. It was one of those lovely California treatment centers where the kids did “surf therapy” and yoga. The place was legit. Constant group and individual therapy.
“Trast…presented with depressed and anxious mood, affect congruent with mood, thought process was circumstantial. Client was admitted due to excessive substance abuse, alcohol abuse, and nicotine dependence (smoking 2 packs a day). Client reported suicidal ideation and expressed that he planned on overdosing on his mother’s prescription medication.”
The treatment center had called me that afternoon to tell me that, as they’d feared, the insurance company was denying coverage and I would need to come and pick up Trast. He’d been in treatment for 24 days of their 45-60 day program. I thought back to our first family session when I was picking bits of nail polish from my fingernails while Trast sat as far from me as he could and refused to speak when the counselor asked him to talk about what needs to change at home for him to stay. By the end of the session, no progress had been made, but the counselor said that we should focus on communication and not worry about him coming home. She said we’d worry about that closer to discharge. On the phone, I was being asked when I would be able to get him. “You know he’s going to run away again, right?” I couldn’t keep the disdain out of my tone. They said I could keep him there if I paid out of pocket. Then they said “But we understand you have financial difficulties.”
I suppose that’s a way of looking at it. I Individually support a family of three on a public television salary. I work full time and we live paycheck to paycheck. So, no, I can’t afford to pay out of pocket at the rate of $1500 a day.
“…feelings of hopelessness, worthlessness, guilt and racing thoughts… body-image concerns… minimal eye contact, increased psychomotor agitation, slowed speech and volume… Client recognized he needed treatment.”
In 2005, Trast was diagnosed with Asperger’s, anxiety, and ADHD. I made a really lame joke about Triple A at the time. The diagnosis didn’t stop our lives or cause us any distress. If anything, it was useful to be able to explore different tools that could help him. He’s a very bright, sweet person and to know him is to be charmed by him. Putting structure in place, learning new ways of presenting information to him that would make sense, teaching him to express empathy- this all worked wonders at school and at home. His interests were still obsessions, but having a kid who was obsessed with George Orwell didn’t seem like such a terrible thing. And when Trast started to play guitar, it was annoying, but his obsessiveness about playing meant that he quickly improved. By the time Trast ran away, he was making quite a bit of money playing his guitar on sidewalks.
So far, he and I would both say that all of the above is true. However, when it comes to drugs and alcohol, we disagree. I need to make a note of that, because Trast knows I am writing about this, has given me his permission to share all of this with you, but I want to make sure I share his own opinion about things. It matters to him, so it matters to me. According to Trast, he wasn’t really doing that much using. He’s stated that after the fourth time he got black out drunk, he really cut back and would only have a few beers. He also says that he wasn’t really smoking very much weed, wax, or spice once he ran away. It was only when he was at home that he was smoking “all the time”. He also says that any reference he made in talking to his friend about heroin was about the Velvet Underground song. (I hope you can hear me rolling my eyes)
When Trast moved to LA to live with me, he was the dorkiest dork on the planet and I loved him for it. Paintball, D&D, gaming conventions… if it was something to give someone a wedgie for doing, Trast was doing it. But through the miracle of Asperger’s, his in-your-face lack of insecurity about being himself meant that instead of getting wedgies, he was an easy person for other people to like. They’d tease him, but in a fun way. He was an A student and he won a lot of awards for academics as well as how he treated others.
We talked about drugs. I mean. Come on. We live in L.A., I’m friends with a lot of artists, comedians, and musicians, and you can’t walk down the street without walking through a cloud of kush-stink. You think that’s smog hanging over the city. It’s weed. And because I think I’m so smart, and so funny, and so cool, my drug talk was straightforward. I admitted my own past drug use. I explained what different drugs felt like and what their dangers were. I explained that they were illegal. I joked, “By the way, some parents do drugs with their kids because they think that if the kids are doing it at home, at least they’re safe. I’ll never get high with you kids because you’re the last nerds I need ruining my buzz.” Ha. Ha. Ha?
I was completely unprepared for everything that happened. Classic stuff, too. We’re talking textbook. Grades slipping, isolating, behavior and mood changes. New friends, secrecy, lying. Vandalism, stealing, and all the while friends and family telling me how he was just being a teenager. The neighbors told me he’d been smoking weed on the rooftop. Other people in the neighborhood told me that he and his friend were suspects for anything shady that was going on. In our storage shed I found empty liquor bottles, cigarette packs, empty plastic weed bottles.
By the time Trast ran away from home, he’d stopped going to school altogether. The school would call me and tell me he wasn’t there. I’d come home and ask him how school was. He’d pretend to do homework, tell me it was alright. Then we’d fight over if he’d gone to school. Even when faced with hard evidence that he’d been skipping, he’d insist that he’d been there. Trast had created his own reality. He had decided that school was useless. He was perfectly capable of making money playing guitar, and all he needed was food, smokes, weed. He was leaving the apartment and pretending to go to school, then hanging out with a group of homeless people and getting high all day.
“Upon discharge, Trast continues to endorse depressive and anxious symptoms. Client often mentally withdraws and has reported he will run away and relapse upon discharge.”
When I picked him up from the center I told them I needed his medical files. I was feeling horrified at whatever was about to happen, and wanted to have something solid to put in front of the insurance company. I envisioned myself making it my personal life’s work changing the way substance abuse and mental illness are treated in the health care system. Michelle Obama would shake my hand, that Brochovich woman would personally high five me, people would refer to Hasler VS Big Insurance, and the treatment center’s doors would swing open to those whose insurance companies would no longer be allowed to refuse to pay for their treatment. They didn’t hand over the files, though. They said that if I get him into another program, they’ll send the files to the new program. They’re confidential. Doesn’t matter that I’m his mother.
Instead they gave me a summary stating very clearly that Trast wasn’t ready to be home. Not that I needed a piece of paper. On the way back to the apartment we already had three arguments, and that was even with me doing my best to maintain the attitude that I wanted to help him become independent.
“Client is still displaying difficulty communicating openly with his mother…continues to be resistant to exploring his ambivalence toward long-term sobriety… identified minimal adaptive coping skills when distressed or triggered and continues to glorify his drug use.”
I’m pacing in the kitchen when the boys come in. I have no plan, and my brain is yelling at me to “do something already!” But I don’t know what to do, and how the hell am I supposed to know? This treatment program was supposed to help get him to a better frame of mind, then help teach all of us how to interact, as well as provide us with a very clear aftercare program. Most of the youth that had left the center went into day programs where they could continue to have emotional support.
Trast and I start to argue in the kitchen, and Ayden sticks his curly head in the middle and tells us both to just stop already, and Trast is talking about how great it was to live on the streets, and I am yelling about what everyone went through and I’m terrified and I say that I don’t think he’s ready to be out and he tells me that he doesn’t think he’s ready, either. He didn’t like all the rules, but he needed to be there.
But the reality is that we don’t have the money to pay out of pocket for his treatment. His step-father was generous enough to pay the deductible and coinsurance to the treatment center with the understanding that once he paid that, insurance covered the rest of the program 100%. The amount he paid was considerable, and he did so for the same reason so many people put all of their efforts into finding Trast. He’s an exceptional kid and we all want him to get the help he needs, because he has a lot to offer the world. We love him. But how could this have happened? How could an insurance company deem it no longer medically necessary for him to continue to receive care in program that they knew from the get-go was 45-60 days? Is it a racket? Is it legal?
“At this time the Treatment Team at Destinations to Recovery does not feel Trast has made the necessary progress in treatment to support long-term recovery.”
And I know I am going to make a lot of noise about this, make it known, probably re-tell the tale any time health care injustice comes up for the rest of my life. But for now, my life’s work isn’t fighting the insurance company, because I have a much more important job that will take every ounce of strength I have. I need to keep our family safe, sane, and healthy. I need to cram for this test, pull together every resource out there, and figure out how to get all of us through this with as few scars as possible.
In group, we all had to tell our family members three positive things we felt about them. Up until that point, Trast had refused to speak to me at all. The counselors said that he insisted he wasn’t angry at me, which probably meant he was suppressing those feeling because all teenagers are mad at their parents. In the kitchen, on the night he was released, as I sat with Trast, trying to come up with a reasonable plan that would get him through school, keep him home, and focus on not using, he brought up that group. He told me he meant what he’d said that day.
“You’ve been through hell so many times, but no matter what, you always made sure we were taken care of. You’re really a good mother.”
It means a lot to hear that, but I am still terrified, because even with every resource at their fingertips, many kids in his situation have gone through hell, went back to the streets over and over, died, or lived the rest of their lives miserable. I have no power over what Trast will have to put himself through, no control over the choices he will make. But it sickens me to know that he doesn’t have the right to a certain level of care that could have a huge impact on his future. This is not okay.