The Worst Moment In Our Lives
(2-12-18) The worst moment of my wife’s and my life began with a simple text. “Alex didn’t come home from school. I’m worried.”
I was away on business. This was unlike our Alex. Our sixteen-year-old son usually came home every day after school. We tried to call him and got no answer. We called family and friends but no one could locate him.
Hours later the police found him.
He had left school early. He was in a park and had tried to cut himself. A man and his daughter had seen him and asked if he needed help. Thankfully, Alex had said ‘yes’ and they had made a call.
The police brought him home. I cut my work trip short and came home the next day. I heard my wife cry for help as soon as I walked into the house.
My son was stabbing himself.
I got the knife away from him. Had I arrived only minutes later, I might not have arrived in time to stop him from ending his own life. I remember feeling as if I were watching everything from outside my body. While help was coming, I held on tight to my son. I thought he was dying.
Alex spent the next two weeks in the hospital being treated for his stab wounds. The heart surgeon told us Alex had come within centimeters of piercing his heart.
He pulled through it and was discharged, but during the next six months, our lives were turned upside down as we struggled with the system – both the legal one and insurers – and their antiquated views on mental health, fighting nonstop to get Alex the help that he so desperately needed.
His history: Alex was diagnosed with a mood disorder when he was in sixth grade.
Homework would get him very stressed. Some nights he would become very agitated and lose self control. He would break things and attempt to harm himself. This could go on for hours.
One thing soon learned about treating mental illness, is that it takes an excruciatingly long time to find the right caregivers and the right treatment.
But we did.
Alex was treated with a mood stabilizer, and for the next several years until his junior year in high school, he led a normal life. He was getting decent grades and found a group of friends to hang out with. Every parent of someone struggling with mental illness worries about putting their child on medication. But I’ve come to learn that in combination with therapy, the proper medicines can be hugely beneficial and life changing, even life saving.
The problem is that finding the right combination and right dosages of medications takes a long time though. Mood stabilizers and anti-depressants take months to titrate up to therapeutic levels. And it’s a process of trial and error. The medication might not be the right one. We tried several – some with very adverse effects – before landing on a mood stabilizer that worked for Alex.
Alex was doing so well in high school that he asked to be taken off his medication. He wanted to try life without it and with the approval and supervision of our psychiatrist, we agreed to support his decision.,
Six months later he stabbed himself
In the aftermath of that suicide attempt, he was diagnosed with depression. When he was discharged from the hospital, Alex went into inpatient treatment program at a psychiatric hospital for eight days. Because we had called the police for help, an inpatient stay was mandatory.
He entered a program that had an available bed, not necessarily one that we would have chosen for him. The facility was very institutional, more like a correctional facility than a center for caring for people with an illness. It was locked down. Anything we brought in was searched. Alex’s psychiatrist had the bedside manner of Nurse Ratched in One Flew Over the Cuckoo’s Nest. Although we did meet a few caring people there, the overall feeling was that our son needed to be punished and detained, not cared for or treated.
This was our first exposure to the system. It was not a great first impression. And it would get much worse.
Over the next six months, our son would attempt to harm himself three more times.
Each time we would call the police for help. Each time after spending a night at the hospital for evaluation for any physical injuries, Alex would be required to spend a week or more in inpatient psychiatric care.
After the second and third incidents, the inpatient psychiatric hospital where he was sent was much better.
The therapist, psychiatrist, and staff were extremely caring. We held regular family meetings to discuss the course of treatment. They were on board with the same treatment plan our family psychiatrist and psychotherapist had devised. They had been developing it for months.
We were hopeful – and then the hospital bill came
After Alex was discharged, he regularly saw his psychiatrist and psychotherapist. He was making progress, albeit very slowly. But he was always very cooperative with them and compliant with the treatment plan. He wanted to get well.
In the midst of all this, our insurer informed us that it was denying coverage for the hospital treatment our son received for physical injuries that he sustained after first suicide attempt. The day after Christmas we received a bill from the hospital for $150,000. The insurer denied coverage because the injuries were self inflicted, and subsequently it denied our appeal.
Alex should be covered under the Affordable Care Act, which requires all new insurance plans to include coverage of mental health and substance use disorder services. It also prohibits insurers from using substance abuse or mental illness to deny coverage or raise premiums. HIPAA law also prevents an insurer from denying a claim based on a preexisting condition. I know all this because I did my homework.
Alex should have been covered. It was the law. I contacted our U.S. Senator’s office because our senator supported the Mental Health Parity and Addiction Equity Act (MHPAEA), which states that health plans provide mental health benefits at a level on par with medical and surgical benefits.
But the insurance company dug in its heels, forcing us to hire an attorney.
As horrible as this was, it is only a preface to a true horror story that was about to unfold.
Our son had been showing signs of getting better. He had been spending more time with friends. What we discovered was he also had started self medicating with alcohol. After consuming a dangerously large amount one Saturday night, he became very agitated and upset and ran off into a cold, stormy night. Concerned for his safety, we called the police.
They found him and once again, he spent the night in a hospital for his own safety. He told the social worker he would willingly seek help. He was met with a much different attitude this time around by the police and hospital staff. No longer was he a poor teenager who needed help. Now he was a menace to the community who had to be dealt with.
Alex was forcibly held under our state’s involuntary commitment act, even though he told the social worker he would accept help voluntarily.
The police and hospital became very insistent that he be discharged into the first available bed despite our pleas that he be allowed to go to the psychiatric hospital where he had received excellent care. When we called it to rally support, we were told no bed was available.
Instead Alex was shackled by the police and sent off to the county mental health facility, about an hour and 40 minutes away, instead of the private facility only 20 minutes away – the one where he had received excellent care.
Our involuntary commitment law mandated that he be held in that facility a minimum of 72 hours, but Sundays didn’t count. He was told that he would remain there at least four days.
The county facility was institutional. Once again, he was being punished for his actions, instead of being treated for an illness.
We, his parents, the two people on earth most concerned about his welfare,
were not allowed to be involved in the intake process.
During the entire time he was there, we were never – not once- contacted by a clinician about his care, whether it was the county psychiatrist or nurse practitioner. At the private hospital, we were regularly in contact with his care team about his treatment plan and progress.
Shortly after he was admitted, the social worker bluntly informed us that the county was changing his medications. The staff had decided to double a medication that our family psychiatrist was planning on removing from his treatment regime because Alex had a strong reaction to it. It caused him to become overly anxious. We also were told – without being consulted – that his antidepressant was being cut in half. This was a medication that we had spent months titrating him up to therapeutic levels.
Those decisions single handedly undone all of the hard work we had done for months to help our son become stable and get better.
I left messages with the dispensing nurse practitioner. I tried to learn the name of his psychiatrist. (I would not learn that name until the day Alex was discharged.) I begged the nurse practitioner not to change my son’s medications because we were working with our lawyer to get him transferred ASAP to the private facility where he had prospered. No clinical staff at the facility ever returned my call, nor did they grant my wishes of not changing his medications, an act I believe was criminally negligent.
Everything about the situation felt surreal, and it was about to become Kafka-esque.
The two people in the world who loved and cared the most for Alex had absolutely no say in his care. And now our county, in the infinite wisdom of a bureaucratic machine, had decided to push for keeping Alex involuntarily committed at this horrible facility.
After all, it was his fourth incident. Something must not be working. Despite the fact that he had always been compliant with his medication and therapy sessions, and despite the fact that his parents were pleading to have him transferred to a facility that his parents trusted and was more than an hour closer to his home. Nope, the county decided it was in our son’s best interest to keep him there.
Would a cancer patient be treated this way? Or is it only because he is suffering from a mental illness?
A hearing was finally scheduled to determine if he could be transferred. It very much felt like a criminal proceeding. Our sixteen year old son was referred to as “Mr. Smith,” instead of Alex. By the grace of God, and against the wishes of the county treatment team, Alex was allowed to transfer to the facility closer to home. We were delighted, but we also were sad.
Here he was. Again in shackles, in a police car.
After the transfer to the new facility, he was immediately put back on the treatment plan we have been working so hard to keep. And we immediately met with his therapist and psychiatrist, who were wonderful. After a week of inpatient treatment, he was discharged into outpatient treatment for several more weeks.
We thought we had cleared a mine field. But we were wrong. Our county was not about to let things move forward.
A few weeks later, we were back inside the county courthouse, this time to determine whether the county would agree to a settlement agreement, whereby the county would allow us as Alex’s parents to supervise his care.
Nope. The county wanted him involuntarily committed for six months.
Our son was brought into courtroom in shackles, like a common criminal. The county would not agree to a settlement agreement, and it was ruled that Alex’s care would be put under the supervision of the court for six months. Part of the court order, which my lawyer currently is fighting to remove, uses the archaic terminology, “mental defect,” to describe our son’s condition. I can’t imagine someone with a physical illness being described in such derogatory terms?
What crime did our son commit? The answer is obvious. He got sick.
In the eight months since the last hospitalization, Alex’s condition has gradually improved. He has not used drugs or alcohol nor needed hospitalization. The six-month committal expired without incident. We are also in the process of winning the appeal with our insurer. I never thought we had a chance and we almost gave up the fight. We are fortunate that we have the means to hire a good lawyer and we’re able to make payments to the hospital to keep our credit rating from being destroyed. Many other families cannot do so. Families in our situation should never give up hope however. Keep fighting the good fight and reach out to your local NAMI (National Alliance on Mental Illness) chapter for support.
(The writer has asked for anonymity because his son continues to be under the county’s watchful eye. I have verified the writer’s personal information.)
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