I've struggled about how, or even whether, to post about an event I witnessed and participated in this past week. It's a difficult choice but in the end I decided that the more people know about how mental healthcare works, and especially when it doesn't work, the safer some of the most vulnerable members of our society will be.
Above, you see Marina (not her real name). She turned 21 back in June and those are photos I took of her at her birthday party. I met Marina when she was 17, when I became her Surrogate Parent for Educational Decisions, and then shortly thereafter, because of her advocacy needs, her Guardian ad Litem. She was in foster care, but Marina's case is an extremely unusual one. Marina is mentally retarded and severely autistic. She has a serious uncorrected strabismus that probably further complicates her vision. We can't be sure though. Because Marina is totally nonverbal and can't tell us what she sees. She communicates by grunting, moaning if in discomfort, and by warmly taking the hand of those she trusts and leading them to what she needs. But that's not what makes Marina unusual. What's unusual is that Marina is very much a loved child. Her parents, who have struggled with their own disability and health issues, gave her into the foster care system because they could neither afford, nor could they adequately care for, Marina's intense needs. (Marina is tall, strong, and is prone to self-injurious behavior when she gets upset or frustrated.) They visit Marina every weekend, faithfully, and have for years. When Marina aged out of the foster care system, I became her permanent legal guardian because she really needed someone who would make sure she got what she needs to have a reasonable existence on this earth. Marina is fortunate that we found a fabulous group home, where she is treated kindly, and thoughtfully. To give you an indication of how good this home is, when she transitioned to it, abruptly, three and a half years ago from a really bad home she didn't decompensate, get aggressive or have all the adjustment issues you expect with a severely autistic individual. She rocked, she stamped, but that was about it. So she has wonderful parents, a fantastic group home (I can't say enough good about the ladies in this APD [Agency for Persons with Disabilities] home) and a very competent and vocal legal guardian. That's what makes Marina really unusual. She has a whole passel of people who really care about her and try to make sure she is safe, happy and healthy.
Marina is still entitled to attend Miami-Dade County Public Schools under the Individuals with Disabilities Education Act of 2007, until age 22. She's been attending a summer program for autistic youth this summer. Unfortunately, it wasn't in her usual school and she didn't get there with her usual bus, and of course, to cap it off, she didn't have her usual teachers, either. None of that bodes particularly well when you're severely autistic, but Marina is a trooper. She loves getting up in the morning, getting dressed and putting her backpack on to get ready for school. Marina likes to sleep a lot, but she does like to go out. Except on days when she feels ill from her menstrual period. (I hope we are all grown up enough to handle real world stuff....) On those days, when she has cramps, she gets fretful. After a month in her summer program, Marina had a bad day and was brought home, dosed with her Tylenol, put to bed to rest and the following morning, last Friday, she got up and got ready for school, seemingly feeling well and upbeat. Unfortunately, once at school, she started feeling ill from her period once again.
Imagine feeling pain, and queasy, and uncomfortable, in a strange place, with strange people. Now imagine doing it when you can't speak and you're severely autistic and prone to total overload on sensory stimuli. Marina, as she occasionally does, started biting her wrist and getting agitated. (She wears a wristband, just like a tennis player, to protect her wrist most of the time.) When the group home staff (who care for 5 other ladies) could not drop everything and promptly pick Marina up in less than thirty minutes, and she continued to bite herself and push school personnel away, they called the school police. Who handcuffed her (this happened once before in the spring at her regular school and the teachers and group home owner made the police take the cuffs off) and proceeded to Baker Act her (that hasn't happened in years to Marina). The Baker Act in our state is a 72 hour hold for psychiatric evaluation. Because you're deemed a danger to yourself and/or to others. So in addition to feeling sick, upset by being unable to communicate it (her regular teacher knows when she needs Tylenol), in a different environment, and handcuffed, Marina was then transported to an area hospital's mental health ward and committed. Not surprisingly, Marina got even more upset. But here's where the interesting part begins.
This all went down on a Friday, one of the worst possible days for someone to have psychiatric misadventure. After being notified promptly by the group home personnel and by a friend who is a teacher (but not Marina's teacher) at that summer program that Marina had been Baker Acted, I spoke to a resident who said that they would release her that day. Only they didn't. In fact, the group home assistant manager and I spent the next THREE days playing find the attending psychiatrist (I've still never laid eyes on the man or heard his voice) in order to get her released. During that time, Marina got so agitated that they dosed her up on a ton of Ativan. From reviewing her medication record when we finally got Marina out of there on Monday, I saw she finally got some Tylenol on Saturday. Marina normally doesn't take all that heavy duty benzo stuff. She takes a mood stabilizer and a very low dose of an antipsychotic that takes the edge off, so that when she gets upset she doesn't get aggressive. And, other than Tylenol or an antihistamine, that's pretty much it.
So what did the assistant manager and I find when we finally got our Marina back on Monday? An intake form in which it was stated that she was extremely aggressive, unresponsive verbally, was having auditory hallucinations and there was a tentative diagnosis of Atypical Psychosis. Missing on the form? AUTISM. NONVERBAL.
That's right, the school sent no information other than the group home contact number. No history, no insight into what was going on. NADA, people. When she was transported to this hospital, they left out a few things. Just a few. Like the patient was autistic and nonverbal, which would therefore make it unlikely that she would be verbally responsive and settle down nicely in the strange environment with the bright fluorescent lights and all the strange faces and strange sounds.
When I asked how they determined she was having auditory hallucinations since she's totally nonverbal and cannot therefore report them, I was told that when they were questioning her that she sat cross-legged, hands over her ears, rocking back and forth (a comfort behavior) and crying. For several hours. Um, yeah. Definitely Voice of God stuff.
Eventually they contacted the group home and legal guardian and found out that Marina was autistic. To their credit, this mental health unit kept Marina on the Senior side of the unit, away from younger and therefore potentially more dangerous adult patients. But she was still unreachable by us until Monday morning. We received contact numbers for the attending psychiatrist that were office numbers rather than beeper or cellular phone numbers. An office number that only took messages that would be answered Monday through Friday, 9 am to 5 pm. So they loaded Marina up with Ativan and she eventually sort of tuned out everything. They wouldn't release her, after initially saying they would. Why? The observations from her admitting documentation were "too serious to allow premature release." I spoke to Marina's mother no less than four times over the next two days because she was so worried about Marina and how she'd be doing in a strange place with people who were strangers.
On Monday of this week Marina took my hand and that of the assistant director of her group home and firmly walked out of the psych ward in her hospital gown and strode toward the group home van. She went home, napped, ate her dinner and the next day went to see her regular doctor who put her right back on her regular medication.
She's done with that school program for the rest of the summer. She's just going to do recreational outings and something called the Companion Program until she can go back to her regular school for her last year of school. She was happy and smiling and her mother is going to visit her on the weekend, same as always.
But just think about it. This young woman has everything going for her. She has parents who love her and wanted to know what was going on. A group home that pursued things and was very responsive. A legal guardian who kept trying to get her released. A regular doctor who wasn't going to change her medication because of one bad day. And she herself has been resilient enough to seem to bounce back once she is back at her home and back into her routine with familiar faces and all her familiar things. Marina is truly lucky.
But I can tell you that my youngest child's schizophrenic biological aunt has been Baker Acted by my estimate at least six times in the past year. She has no legal guardian, no interested party seeking to make sure she receives follow up care to remain stable. And no guarantees that every time she is going to go in that someone will pull her file AND READ IT to find out what she suffers from, how she's been treated and whether she's improved.
My brother in law is a psychiatrist in Spain and he thinks the American mental healthcare system is barbaric. I can't really argue on that. And I think our mental healthcare in this country has been this way for decades. In fact, there is award-winning evidence that it has been.
One of the most moving books I've ever read on mental healthcare is Susan Sheehan's Is There No Place On Earth For Me? It chronicles the story of a young woman, Sylvia Frumpkin, who is schizophrenic, treated at the notorious Creedmoor facility in New York, her repeated psychiatric hospitalizations, and frequent misdiagnoses in emergency settings. On several occasions, Frumpkin pleads with doctors, telling them that she's been misdiagnosed and that medication they want to prescribe has made her worse rather than better in the past. (She is especially upset when put on Lithium, after being misdiagnosed as bipolar by a Chinese doctor who barely speaks English, doesn't consult her file and doesn't understand that her cultural references in one of her delusions are all clear indicators that she is schizophrenic. She decompensates further and loses months of her life before the diagnosis and her medications are corrected.) Sheehan won a Pulitzer Prize for the book, which had been serialized in The New Yorker, in 1982.
I am sad to report that from my perspective nothing much has changed in the past 28 years.
Oh Blogger Editor, how I hate thee. Let me count the ways.....