An open letter to presidential candidates

My son, E, is 17 years old. He has been in an emergency room for four days. He has a mental illness. He’s waiting for a bed. The medical staff has been searching three states. That’s four days in an emergency room waiting for a bed to open in a mental facility. This is the state of mental health care.

When is mental illness ever an issue of public discourse? The answer to that is simple. It’s when someone who is mentally ill, or purported to be mentally ill, walks into a building and shoots people. It should go without saying that the percentage of mentally ill people who do this is likely close to zero.

Health care is constantly discussed and rightly so, but mental illness is simply an afterthought. Do you know how the treatment of the mentally ill works? If you do, then why don’t you stand up and shout about it. You have a voice that can be heard. My voice is a mere whisper. In case you don’t know how it works, I’ll give you a few details from my own experiences.

E is in a therapeutic residential boarding school, one of three in the country that we were able to find that offers a strong program and would accept E. It costs over $11,000 per month. That’s not a typo.

E previously was at a placement in South Carolina which we liked, and it only cost roughly $600 per month. Unfortunately E’s needs far outweighed what they could offer, and E’s homesickness proved to be a source of considerable problems. He was 11 years old at the time.  We were living in North Carolina. North Carolina offers a free residential program that, again, we liked, but after a period of time, E could no longer function there. That school helped us find a new placement. We were told that we could be called at any minute once a placement (open bed) was found. A new placement was found, we were notified in the afternoon, and he had to be at the facility before midnight or there would be insurance issues.

E spent several months at this placement (a psychiatric residential treatment facility) before being released. He returned home and began attending middle school. After several suspensions and a near expulsion, E received the following education: he was placed in an office and received one hour of tutoring a day.  Shortly after the events that led to this educational environment, E suffered a breakdown and was eventually placed in a mental facility located about one hour from our home. We had no say in the location of this placement. It was a case of next available bed, exactly the situation he finds himself in today. In this case placements were limited due to the fact that E has a dual diagnosis (two or more mental illnesses). While at this facility, it was determined that E needed another more restrictive environment. There were four places in the state that offered this. He had already been to one, a second would not take him, a third was not suitable, and so he was sent to the other. This was in many ways prison-like. This included a “yard” with a ten foot high fence. This was the worst situation possible, and for all intents and purposes he was stuck there.

By this point we had invested in a parent facilitator, an educational consultant, and a lawyer in an attempt to find an appropriate placement. We had to go out of state, but NC was unwilling to pay for this as they considered the office and one hour tutoring an acceptable education. Eventually E went to a school in New Hampshire, one of three if you recall. Since that point, one of the other schools closed due to allegations of abuse. We chose, perhaps luckily, the correct school. For a year, his mother and I traded the responsibility/opportunity to drive 14 hours to visit E for a weekend. With the $11,600 dollar monthly charge, plane flights were out of the question. Insurance paid nothing; the school district paid nothing, and our lawyer charged us to tell us it was unlikely that the state would pay anything to aid in his education. We quickly accrued some debt, and while the school allows us to make payments, we are paying for the equivalent of a small house.

After several months, we began to look for jobs in the New Hampshire area. We eventually found jobs in Massachusetts and currently reside 55 miles from E’s placement. At this point the state of Massachusetts and what would be E’s school district are paying for his placement. He just completed four years in this program, and while he has shown remarkable improvement, he finds himself back in the hospital in an emergency room for four days simply waiting for a bed.

But you know what, he doesn’t own a gun; we don’t own a gun. Guns aren’t involved. And we simply wait for an open bed.