(10-13-21) I’ve always been frustrated by the never ending argument about which is better: community care or longer term care in state hospitals before discharge. What we need are accessible services that are appropriate to each individual’s need, whether that be in a community setting or more intensive hospital care. Here’s an email that I received this week.
Dear Pete,
Two days ago, we had our first ‘on campus’ outside visit with our son at the Mental Health Institute in Independence, one of two state hospitals that we have in Iowa. He was excited, because it meant that we could bring him food and eat with him outdoors. It was a two hour timeframe, so he also wanted to take us on a walk to show us around. The residents go for walks on a pretty regular basis when the weather is good.
I’m writing because I recently had a chat with a candidate running for state office, and she said something that indicated she thought our Mental Health Institutes are terrible places. (I imagine this came from a significant amount of messaging from our prior Governor, Terry Branstad, prior to closing two of these facilities in 2015, in which he talked about them being old, run-down and providing substandard care. In addition, for quite some time, there has been a lot of discussion about how everyone is much better served, “in the community.” It is not surprising that this candidate had a poor opinion of the MHI’s.)
I spoke with her to inform her differently, and that our son is currently receiving the best treatment that he has received since he first became sick in 2008, in a state hospital. (One of only 2 remaining state hospitals here in Iowa – where we only have 64 beds for adults and 32 for children, so our ranking by the Treatment Advocacy Center is 51st, dead last in the country.)
Our son has a full schedule every day and has made himself an excel spreadsheet that he marks off as he accomplishes things. He is meeting with a psychologist on a regular basis and has made progress in his ability to recognize that some things make his delusions worse, and other things help him to be grounded more in reality.
He has even typed up a seven page document that outlines some of the things he has learned and he couldn’t wait to have us read it during our visit. He talked about some of his delusions, like the ones where he is God, or Jesus and told us that he recognizes they aren’t real. Now, he also told us that some of his beliefs are ‘the truth’ even though we know they aren’t, but the fact that he is willing to have a discussion about what is real and not real is major progress.
This is the first time he has been able to live somewhere long enough to get on the correct medication, stay away from substances that are harmful for him including cigarettes and caffeine, and to actually connect with those who are trying to help him.
And, he is making progress.
Our visit happened on a beautiful day, and for one of the first times in my life, after visiting our son, I felt sincerely hopeful.
Ready To Be Discharged
The hospital’s social worker recently told us he is ready to move on as soon as his outpatient care team has a placement for him, which could be a while, given the limited resources and ‘available beds’ we have in Iowa for people with serious brain illnesses. I am thinking and feeling, ‘Yeah, okay” but also wonder how much more progress he could make if he could stay at the hospital just a bit longer. I’d like to let his brain continue to be calm and heal for as long as possible, which would give him a better chance for success once he leaves. He’s been sick for thirteen years, and this has truly been his first chance to receive long term treatment that clearly is helping him.
The bottom line, is the Mental Health Institute in Independence is not a horrifying place. It is what our son has been needing for a very long time. In the past, he has been issued meds and hurried out into residential care facilities before he was well enough to actually participate in his own recovery. What if he had been allowed to stay in treatment longer back then? I keep dreaming, ‘What if this had been available to him so much sooner, and all the other young people unfortunate enough to have a serious brain illness?’
I have been dealing with mental health services in Iowa for a long, long time. We need to offer those who need it longer term care because my son and others who are seriously ill need it.
We need more people to be able to access this type and length of treatment. We just do.