Max doesn’t have Self-Determination in his life. His life is extremely limited. He is not given opportunities to make choices. It’s a same-day, same-shit kind of existence.
Max has a CMH “support coordinator” (they go by other names too….case manager, CMH worker, etc.), but there is no coordination of the supports that he should be receiving to be self-determined.
County CMHs (under the auspices of the Behavioral Health and Developmental Disabilities Administration- Michigan Department of Health and Human Services) are suppose to be a “system” that supports self-determination. They don’t. Go ahead, ask anyone who has an child/adult (especially one that is severely, multiply-disabled) in this “system”, how it works for them. There are some real human, real life problems out there, and the people that could make a difference, are doing nothing. They seem to have a lot of “meetings” and there’s no action. There’s no trickle-down effect. There’s no meaningful reaching out to stakeholders (individuals/families). They really don’t “do” self-determination. At least not without a fight from individuals and families. It’s exhausting.
Locally, several years ago, it WAS getting better. They were going in the right direction, and than people started to retire and “new” and younger people (social workers) came on-board at the CMH here.
They were inexperienced. They had absolutely no idea what they should be doing for those that they were suppose to be working for and on behalf of. They still don’t. They were not and did not want to become familiar with the uniqueness of those that they “support coordinated” for. They didn’t want to educate themselves any further as they progressed in their “careers”. They either never cared, in the first place, when they went into this particular field (human services) – or they were and are just lazy. Maybe “Social Work” sounded kind of good and easy, and something that they could learn all about in college, and BAM! off they went and they got paid to do whatever they were told to do (indoctrinated), forgetting WHY they were in the position that they were in. Forgetting or intentional, it’s all the same. It’s wrong on such a fundamental human level.
I take great offense when it comes to those who have such control over the lives of others – their very quality of lives; their comfort and safety; their happiness – and blow it off.
I’ve seen Max ignored totally between annual Individual Plan of Service meetings (IPOS). If I never said anything; if I never addressed any problems or issues, there would be NO communication at all. I absolutely hate the group-home mentality. Even if a person has no family or friends checking in on them, they have a right – yes a RIGHT to be treated with kindness and dignity and care.
They (CMH’s) KNOW about self-determination and they’re suppose to support that in the mental health system – as Max is someone with a developmental disability – but per usual, he’s even worse off than others, as someone that is nonverbal (has complex communication needs) and non-ambulatory, living in an antiquated living environment that still thinks of itself as providing the basics of what he needs to survive (be warehoused) and that all they have to do. The bare minimum.
That’s SO wrong.
I’m sure that this topic will come up again down the road, because I am trying to make positive changes on Max’s behalf, even as I see things worsening.
I’d really like to hear from other individuals and families; guardians and caretakers, care providers.
In Max’s life – “Another Brick in the Wall” translates into “Another Roadblock in Life”. The constant assaults on his individuality and integrity and personhood continue. It’s moments like this, that I wish I could sit across the table from Max, we both drinking a beer, while talking and laughing “about life”. I want to hear about his hopes and dreams. I want to know how he’s really feeling.
Then I’m dragged back into the reality of it all. All of this real-life crap that surrounds him. It’s been never-ending bullshit lately. I’m feeling powerless. I hate that feeling, and usually when I get to this point (it does happen sometimes), it spurs me on and makes me even stronger… eventually. Ha!
I meant to post more regularly (I have a lot to say) – with proof that Max lives and not merely exists in a world that doesn’t recognize his humanity, but life can be cruel. I got distracted by “life”. I had to take some time to re-group and make contact with people in-the-know. This is how it is when you have a child/adult with multiple, more severe disabilities. Networking and finding resources are EVERYTHING! It’s a fact in living this kind of life.
I know that it’s been awhile.
This week I visited him in his group home. When I walked in, he was sitting in front of the tv in the common living room. Two other people were sleeping in their wheelchairs. He was slumped in his wheelchair and needed to be pulled up. No one noticed except me. He was drooling so much that the front of his shirt was sopping wet. He had a look on his face that suggested he was disinterested in whatever he was suppose to be watching on tv.
At first he looked at me, like he
really wasn’t seeing me. And then, he smiled as I used his shirt to
wipe the drool off his chin. He needed his hair combed. He smelled.
He only gets a shower on 2nd shift every day. Apparently,
it doesn’t matter if he gets up in the morning, after having a bowel
movement and sweating all night, that maybe someone should have given
him a good bed bath in the morning?
I guess that’s not a part of the routine in this group home. It’s probably that way in most, if not all group homes. They’re very big on following the routine for “the whole”. There is no individuality in that regard. Or maybe it’s all about who is verbal and the loudest. Therefore, Max is not verbal and not the loudest. Max is also non-ambulatory, so no one has to go after him if he runs. Then it becomes survival of the fittest. Did you get that?
And I learned yesterday, when I contacted his “support coordinator” through email (I like creating paper trails) that they’re all about discouraging me from commenting, suggesting, complaining. She said that staff did engage him throughout the day but went onto say that basically, he “couldn’t have all their attention all day”, etc.
I want to make something very clear here. More times than not, it’s not the staff that is the problem (although there are those few). In fact most care providers work short-staffed, and are forced to work long hours – mostly 12 hour shifts – for very little pay (that needs to change). I’ve seen them exhausted and disrespected. I also know that they have their own families. In Max’s case, more than a few of his care providers have included him in their own family gatherings, and I’m grateful for that – as he has no close family living near him.
My problem is with the company that they work for and their managers. My problem is also with the local CMH who should be monitoring his care and working in partnership with myself and keeping me informed. They do the opposite. Where they should be diligent in their oversight and transparent, they avoid any communication with me unless it’s absolutely necessary. They don’t continue to educate themselves and they can’t see another way; the way that it’s suppose to be in creating a safe, happy, meaningful life for my son.
I’ve been stonewalled. I never see anything documented in his notebook and neither am I offered a look-see or a verbal report. I don’t get to hear, as in, “today we used small toys for Max to pick up and drop into a container, to maintain/increase his fine motor skills”. There’s no running commentary, ever.
They inform me of NOTHING. All I know is that every time I go over there, he’s sitting in his wheelchair doing nothing, except watching tv. Or laying in his bed watching his tv / listening to talking books (which I set up for him with the Library for the Blind). Note: I told the group home manager that books on tape could be easily acquired and set up for all the residents there (it’s FREE), but did that happen? No.
Every observation/comment that I made in writing in this email was countered and I was basically called a liar and my concerns belittled or questions unanswered. I WANT to reply back…. but won’t because it’s wasted energy and it’s all frustrating the hell out of me right now. (I need to think about how to effectively deal with this.)
She said Max didn’t smell… Believe me, he did. Perhaps,“that smell” is normal for her in the group homes that she visits. She only sees Max for 15 minutes 3x month. And NOW I know that every time she sees him, she doesn’t really “see him”. Excuses. They all have these pitiful excuses and I’m made to feel like I’m an unreasonable whiner. Fuck that.
I know “they” (CMH/Group Home Management) wish that I would go away and not visit him at all. I know they wish that I would just shut up and not care and let them NOT do their jobs; that I would be like other family members who drop of “their person” and walk away.
But I won’t. Fuck them.
Max received a Dynavox Tobii. It’s all
based on eye-glance. Think of what Stephen Hawking used to
communicate. Someday he WILL tell me what’s happened to him and what
his wants, needs, hopes and dreams are. Someday he will have his OWN
voice, and there won’t be anymore cop-outs, lies or manipulating from
other people who would continue to get in his way of being
When he starts using this, over time,
he will get better and better. It may take a long time and I’m sure
that both he and I will be discouraged – if staff isn’t trained
and/or refuse to make this device accessible for his use (Dynavox Rep
and SLP are coming to his home to set up everything, program the
device and train staff) when I’m not there, but you know what?
On March 25, 2019, during her announcement of an Elder Abuse Task Force, Michigan Attorney General Dana Nessel laid out seven initiatives for guardianship reform in the state which she touted at listening sessions, directed at the elderly population who were concerned about abuses of the system by court-appointed guardians, as initiatives she could easily push through the legislature. However, the membership of her Task Force included a number of pro-guardianship organizations. Obviously, they have pushed back.
See below photos below:
The initiatives as proposed March 25, 2019 are in the left photo. The photo to the right shows the initiatives as they appeared in Nessel’s Elder Abuse Task Force news letter published October, 2019:
1) The limitation on the number of wards has been removed. Guardians with hundreds of wards each cannot possibly ensure their well being.
2) The requirement for a court to provide written opinions as to why a relative is not suitable as a guardian has been removed. This investigation saw numerous cases in which family members were overlooked and DPOAs were tossed out without reason. The judges are again off the hook.
3) Certification by the national Guardianship Association is simply a matter of paying a $375 fee for a multiple choice exam which a Rhesus Monkey could pass.
4) The requirement that a judge sign an attestation that an accounting filed by a guardian has been reviewed and meets the fiduciary standard has been watered down to “guardian required to file accounting when they manage property of the ward.” The majority of them already do. However, as our investigation noted, there were problems such as over billing, missing money etc.
5) Emergency petitions for guardianship to require a full hearing with the ward present has been removed. Now the language simply states that such petitions can only be filed in cases that “pose a danger of imminent and substantial harm.” Since guardianship petitions are rarely filed with accompanying medical evidence, this language is not only ambiguous but utterly worthless.
6) Similarly worthless is a “Family Rights Form” since probate judges do not follow Michigan statute anyway and attorneys are reluctant to represent families challenging a guardianship. Note that such rights are no longer being “developed.”
7) The language that a guardian’s removal of a ward from their home has been enhanced to include “in a non-emergency situation.” With no accountability, a guardian could still declare that such a removal is an emergency as the ward’s money has run out and the sale is required for long term care (as they already do) or that the home is unlivable – again, something they already do without proof. Also the appraisal requirement is gone which would still allow a guardian to undersell a ward’s home.
Clearly, the Michigan Guardianship and Probate Judges Associations exerted no small amount of influence here just as they did with the 1998 and 2005 Task Forces. This legislation is still in the early stages. Who knows what it will look like if and when it is passed?
Is this enough? Feel free to weigh in. If you are going to share, please be sure to cut and paste the commentary.
The Underground Advocate: What was suppose to happen (Initiatives) and what THAT final outcome was. What a waste of everyone’s precious time and the lives of many, many unfortunate, vulnerable people and the families that love them. This absolutely INCLUDES ALL VULNERABLE PEOPLE, such as those who are severely, multiply-disabled who are remain segregated and isolated within group homes and nursing homes. Anyone over 18 years of age. This isn’t about just the elderly. The neglect and abuse are even bigger than that. Talk is cheap and actions speak louder than words.
Michigan’s AG is putting on a politically-motivated dog and pony show – at the expense of the most vulnerable in the State of Michigan. Sadly and horrendously this is happening NOW all over our country (the elderly and disabled being kidnapped and victimized) and WHY the mainstream media has not picked up on this is puzzling and questionable. Think about that one. I know that I do every single day.
My next post will be all about Emily from an earlier post (Her Name is Emily). Emily’s struggle has gotten more desperate, twisted and warped – as to why she is languishing and deteriorating in a nursing home in Michigan.
Stay tuned. Buckle up ’cause it’s gonna be a bumpy ride!
This next post has to do with the reason that I decided to start a blog – and why I choose (at this point), to be anonymous. I may not always write well, but it’s still important to write – and put the truth out there for others to read. I hope that this might lead others to make a difference in their own communities – wherever that might be. Together, even one person at a time, we can right the wrongs in the world.
My son lives in Purgatory.
He’s neither here nor there when it comes to a good quality of life. It hasn’t been for my lack of trying to make it better. After all these years, I’ve hit a brick wall. It’s a wall of nothingness and nowhere. It’s impenetrable and feels like a presence; a thing that exists that seems physical – that I can’t see my way around. It’s a wall of apathy that appears to be growing day-by-day.
My son, who lives (I’ll say it again) in a group home, was medically neglected last year, and because of what didn’t happen is the reason that I felt that it was necessary to tell HIS story, which I believe is the story of many people. I know that this happens, every day, to many people in the United States and most certainly out there in the world. It’s happening at this very second.
I’ll add to that, the fact that no one in my morally and ethically irresponsible, backwards county even tries to understand that ALL people, even the most-involved – whether physically or developmentally-disabled – have the same feelings as ALL people do. Or if they somehow (in the deep recesses of their minds) know this on any kind of level – they don’t recognize the inherent right of each individual to be treated with kindness and respect – that is not based on some kind of monetary valuation. It shouldn’t “cost” to be considered a valuable human being. Every human being is valuable.
Max is a young man that lives with a
small group of people who are old enough to be his grandparents and
yet… taking a trip to Walmart or going through McDonald’s
drive-thru is considered a “community outing” and he lives in a
college town! There is a lot more to do here, but no one has any
vision. No one cares and there is such a lack of creativity that it
stymies and infuriates me. WTF?!
I could go on and on. Here, everyone in power, has that old-style, group home mentality thing going on. It’s miserable. It’s 2019. Not the 1970’s. Unfortunately, it does matter where you live. It matters which state you live in. It matters what county you live in. It matters what your base beliefs are and it matters what kind of people live in your community, as in are they good people who care or are they selfish and apathetic? And so what happens to many, many people in the United States (and I’m sure in other countries in the world… but I’m waiting to hear from others so I can include their personal stories in this blog)?
Warehousing. That’s what happens.
Those who are severely, multiply
disabled and nonverbal – and have no way to communicate their
wants, needs or desires in an “understandable” way to others who
are not disabled, exist in a vacuum. They live in a kind of
limbo-land. This includes the elderly who are
developmentally-disabled and live in group homes. It happens in
nursing homes. I’ve seen it up front, real and in-your-face.
This is the only place on this blog where I will write specifically about what happened. I have relayed the course of events to everybody that I know and all of those who are involved in Max’s life. This includes many advocacy groups/organizations at the state-level. This has led me to the horrendous realization that these are most certainly not in place to help individuals or their families. They’re more like money-raisers FOR the people that work there.
Back to Max.
Max had skin breakdown in the coccyx
area. In the past, the plan had always been for him to have complete
bed rest until healed – with of course scheduled range of motion
and repositioning every 2 hours. Skilled nursing was called in by
order of his primary care physician (PCP). The nurse, following dr’s
orders, wrote in the notes that he was only to be out of bed for
Almost a MONTH later she learned, and then I learned (after she notified me on the same day that she found out), that he was up and all over the group home, sitting up in his wheelchair, and out in the community going places – when he was only suppose to be out of bed for meals. What were they thinking? Why did this happen – especially considering what had been protocol for his care in the past?
After the nurse called me, I
immediately called his PCP – who was out of the office on vacation.
I spoke to a nurse practitioner (NP) – who was covering for the
PCP. I explained what I had just discovered and we consulted.
It was agreed that the order would be faxed to the group home, that stated Max was to have “complete bed rest until healed” – and this was done. I have in my pile of documentation, a copy of this ONE page fax.
Probably within an hour of this, I received a phone call from a representative of the group home (contracted by the local CMH) telling me that Max would NOT be eating or drinking in bed.
So they willfully went against doctor’s orders and THEN got him up just for meals.
The nurse was lied to when she was told that they (the company that owned the group home) had a “written policy” that residents were not to eat or drink in bed, as this was reasoned as a choking hazard.
The nurse asked for this written policy. This was never given over because one didn’t exist. Of note, Max has a hospital-style bed where the head rises; the knees rise – either together or separate and the entire bed goes up and down! Many people are fed in bed and given drinks… you know…. like people in hospitals who are ordered to bedrest. What it REALLY came down to is that there weren’t enough staff for someone to sit or stand there to watch him after he ate – to make sure that he didn’t aspirate or vomit (reflux) for 15 minutes to ½ an hour. Not enough staff….not enough staff…. and this is how it goes in group homes across the nation. Number one reason – the pay sucks and the companies who own the group homes suck even bigger.
Max was harmed. The damage was already done. During the time that Max has lived in this group home, he’s lost a huge amount of weight. No one knows why at this point. He eats and he eats well. It’s still a mystery to be solved, but the seriousness of this grew when the medical neglect happened.
Because doctor’s orders weren’t followed, Max lost even more weight that he couldn’t afford to lose – from muscle atrophy. This has also exposed him to increased risk of worsening skin breakdown in the future. He no longer has a “butt” or the padding that goes with it! It took over a month from the time this began until it finally ended in healing …. because they never followed doctor’s from the beginning. If they would have followed what “worked”, and kept him in bed until healed, he would have probably been totally healed in 3 days (historically).
I filed a recipient rights complaint
against the group home. I would like to note that my intent was that
the complaint was suppose to include the local CMH, because THEY are
the ones that contracted with this home to provide care for my son.
Therefore, it has always been my opinion that they were just as
responsible (culpable) when it comes to the care he receives… or
not. The buck stops there. But THEY bowed out and didn’t do what
they were in place to do. His CMH worker (as a titled social worker)
was by definition a mandated reporter. She didn’t do her job. She
did not protect Max. But within this system is a “I’ll scratch
your back, you scratch my back” agreement. It happens in the court
system as well. It happens in politics all the time. It seems to
be the way-of-the-world.
So over the next SIX MONTHS I went
through the process of denial at the local level (they said no
wrong-doing) through the local CMH. Then I filed an appeal of this at
the local level (again CMH), which led to another denial by the CMH’s
appeals committee (was I really surprised?).
The next step was to file an appeal at
the state-level, which was also denied.
Of note, I contacted Adult Protective Services (APS) once I discovered what happened and the resulting damage that not following orders caused Max. Ultimately the county APS investigator refused to take additional information and pictures from me – that further demonstrated the medical neglect. He said that he “had all that he needed and he had interviewed everyone”. He interviewed staff – who were afraid for their jobs. I live in the real-world and yes it happens. People lie; don’t tell the whole truth, etc. And it HURTS the vulnerable and it makes the world a miserable place. The struggle is real.
I was shocked when he told me this. I
sat there mortified. I had just been confronted with actual
corruption within a broken system! My eyes were finally open.
After I filed a complaint at the
state-level (DHHS), I received a letter from them acknowledging
receipt of my complaint, with the statement that they would get all
information regarding this from the local CMH and they would either
uphold the original decision (which was a denial) or refer it back to
the local CMH for further consideration and investigation.
Now WHY would this be referred back to
the CMH that denied it in the first place?
Well…. because it’s written into our
state’s Mental Health Code.
How’s that for fucked up?
Max never had a chance. The deck was
and is still stacked against him and others.
I contacted three different attorneys. None would take on this case. Want to know why? Because it wasn’t worth it to them. Period. Max didn’t die. Max healed. Max wasn’t permanently (further) maimed, disfigured or harmed (I could argue that). The harm wasn’t ongoing (I could argue this too – he ended up in Physical Therapy that I initiated on his behalf). It wasn’t worth their time and they wouldn’t let me explain anything further past their “intake interviews”. And I am poor. In fact I am below the poverty-level on SSI/Social Security.
The next step after denial at the
state-level would have been to take it into court. I couldn’t afford
to do that and none of the advocacy organizations that were suppose
to be in place to help people with disabilities and their families
would take this on. This is the world that we live in now.
But I’m not giving up.
I DO believe that it’s important for
those reading this blog to see the TRUTH.
When I’m able, I will add blacked-out
documents to this post, because it’s really happening, and I know
that it’s happening to others – especially to others who have no one
speaking for them or advocating for them.
I never thought that this could ever happen in the United States, but here it is… and “everyday” people are probably oblivious to it. However, it does happen every day to everyday people. People with mental illness; people who have addictions; people who are other-disabled – whether developmentally or physically or medically-disabled. People who are “different” – not wrong, but different. People who see the world differently than the main-stream. People struggling and needing help. People who are ignored or disenfranchised. People who have no one who cares to advocate for them on their behalf. People with no family or friends; those who are alone. What’s the world come to? Locked or held hostage in group homes, nursing homes, hospitals, institutions. Power, Control, Abuse, Corruption…. for the money – and what is the cost of a human soul?
Currently (well….I guess for quite some time), I’ve slowly (too slowly) become cognizant of a world that is far from what I thought it to be. I knew that there were uncaring, cruel and evil people in the world, but I didn’t realize how many there were, hiding out as “good people”; those who were suppose to be in place to help those in pain; the poor, the hurting and sick. Instead, they became the victimizers.
Below is a story I read today that speaks to this. I know that this is happening. My son is living it. And in the end, there are unanswered questions that deserve to be answered and must be answered.
As a critical psychiatrist, I am a daily witness to the civil rights abuses of people that struggle with mental health issues. The outrage I feel has compelled me into action to assist people caught in an unfair system. Last summer, I teamed up with attorney Elizabeth Rich to help a woman named Leslie.
I met Leslie last spring when I was covering for another psychiatrist at a rural hospital in Wisconsin. A single mother of three small children, Leslie had been admitted to an inpatient psychiatric unit two weeks prior, after she’d contacted a crisis line seeking help. At the time, she had suicidal ideation and a plan to harm herself, but no real intent to end her life.
Leslie had been placed on an emergency detention, which is the first step in the process for mental health commitment in Wisconsin. The process has two phases: After a 72-hour emergency detention at the time of admission, either the hospital takes no further action or the attending psychiatrist requests a probable-cause hearing (meaning he or she believes further hospitalization and/or mental health commitment may be required). The hearing must take place within three business days. A judge then determines whether or not to find probable cause based on testimony by the treating psychiatrist and any witnesses. The judge’s ruling will almost always concur with the psychiatrist’s recommendation, so it is usually a routine hearing. If probable cause is found, the patient must return to the hospital and two court-ordered examinations are to take place within a two-week period, after which a final hearing is held. The judge will rule at the final hearing for mental health commitment or not, once again judges generally follow the county psychiatrist recommendations.
The hospital’s attending physician did request a probable cause hearing for Leslie, and she therefore stayed in the hospital awaiting a final hearing that took place 10 days later. The judge placed her under a commitment to her county of residence.
Stuck in the Hospital
I was scheduled to work at the hospital for five days and after meeting Leslie, had intended to have Leslie discharged at the end of the week. As I saw it, there was no further reason for inpatient care. She was no longer having suicidal thoughts, nor was she showing signs of depression or psychosis. She had had a medication adjustment, having been placed on an antidepressant, citalopram, upon admission and discontinued from her previous prescription for Depakote. (Depakote is an anticonvulsant or antiepileptic medication commonly used for mood stabilization. It has serious potential side effects and is contraindicated for women of childbearing age in most instances.)
However, the hospital’s social workers handling Leslie’s discharge indicated that the county planned to place her in a group home. They mentioned that the doctors who had seen Leslie previously were upset because they did not agree. One of the psychiatrists’ progress notes even said that there would be negative consequences for Leslie if she were to enter a group home. Because group home placements generally last 6 to 12 months, she was at risk of losing her full-time job or even custody of her children. One can only imagine how stressful it would be for a mom to have her kids placed in a foster home and her pets at the Humane Society while being forced to live in an institutional setting. It did not appear to any of us that a group home was indicated, so I told the social workers that I still intended to discharge Leslie on Friday.
The social workers reiterated that I could not discharge this patient. One told me, “She is court-ordered to be in the hospital.” That statement was false because in Wisconsin, the mental health commitment statute stipulates that patients stay in the hospital only “until stable as determined by the psychiatrist.” In spite of my efforts, I ended up having to keep Leslie there. I would soon be leaving, after which another psychiatrist would be working the weekend and yet another psychiatrist would be seeing her on Monday.
Bringing in a Lawyer
I could not stop thinking about the fact that Leslie had had three different psychiatrists recommend that she be discharged back home instead of to a group home. After several days of thinking about what I could do, I was able to locate the name and number of the public defender that had been representing Leslie for the court commitment process. I asked her whether Leslie could legally be discharged to a group home even without the recommendation or approval of her treating physicians, nurses, and social workers; she told me yes. I then asked her to call the county and request a hearing because, in my opinion, a group home was not the least restrictive setting. Mental health patients who are committed to a county in Wisconsin are supposed to be in the “least restrictive setting” possible. The public defender was able to schedule a hearing for the following Wednesday morning.
I changed my schedule so that I would be able to testify in person; my plan was to ask two of the other psychiatrists who had seen Leslie in the hospital to testify by phone that she did not need to live in a group home. I spent time gathering records and preparing for this hearing. The next day the public defender called me back and said the county was not even going to hold a hearing and that Leslie could return to her apartment, job, and caring for her children. We were ecstatic. We both believed that it would have been a violation of Leslie’s civil rights to prevent her from supporting herself and her family, and that she was a very good mother. I assumed that was the end of the story.
Picked Up in Handcuffs
Several months later, I was on call at the hospital where I work, not the hospital where I initially met Leslie in Eau Claire, Wisconsin and I was covering emergency room admissions to the inpatient behavioral health unit. That evening, I got a call from an emergency room physician at the other city hospital who told me he had a patient that had been detained on a “pick-up order” through the county. If someone is thought to be in violation of their mental health commitment order, their social worker can get an order from a judge to have the person brought to the hospital — usually in handcuffs, whether or not they are resistant. I asked the patient’s name. It was Leslie. The doctor said after observing normal mental status and behavior “I don’t know why she is here, and she does not know why she is here.”
Leslie had not been experiencing any mental health symptoms, but suddenly the police came to her apartment, handcuffed her, and brought her to the hospital. It turned out that her social worker had filled out a form saying that Leslie had missed appointments and was not taking her medication. Leslie had, in fact, missed appointments, but it was because she was working double shifts one week and could not get a babysitter the next week. She said that she did stay in touch with the social worker regarding her whereabouts, however. Also, Leslie had been very sick with the flu and had missed some doses of her medications due to vomiting. She had also been placed back on Depakote prescribed by the county psychiatrist despite its risks to her reproductive health. Most importantly, according to the social worker, Leslie had had a “drastic change in her appearance.” She had dyed her red and gotten a facial piercing, which “raises questions about whether she was on the verge of hypomanic behavior.”
Leslie was not experiencing any depression, psychosis, or suicidal or homicidal ideation. She was not a danger to herself or others. Yet she had been picked up by police, placed in handcuffs, and brought to the hospital. All of the nurses were aghast that somebody could basically get arrested because they dyed their hair and got a facial piercing.
Leslie’s social worker intended to have her placed in a group home and came to the hospital to read her her rights, as is required by Wisconsin statute. However, the social worker did not meet the deadline; Leslie’s rights were to have been read to her at least 48 hours from the time of detention. These rights included receiving a hearing before a judge to determine whether or not group home placement was indicated. Yet Leslie’s social worker informed her that she was not entitled to a hearing because she was already “under a mental health commitment.” This was not true, and the staff at the hospital and I succeeded in obtaining a hearing for her.
Lining Up Witnesses
I was extremely upset by the way the county was treating Leslie and volunteered to help her prepare for the hearing so she would be allowed to return home. I took a chance by calling a wonderful attorney, Elizabeth Rich. Elizabeth had called me the previous winter to ask if I would help her get people off commitment in Wisconsin. I hoped she would return the favor. I called her on a Saturday afternoon and explained that we needed her to represent Leslie at the group home hearing. “I’ll do it,” she responded. “I’ll do it for free!” This meant registering as the public defender for the case.
As I explained earlier, Leslie had a legal right to a hearing before a judge within a 10-day period from the time of her original detention. The hearing was scheduled for the tenth day after; by that point, she had already been placed in a group home by her social worker after being incarcerated in the hospital for seven days. Generally quite compliant, Leslie went along with the whole process.
During the days leading up to the hearing, Elizabeth and I were working hard trying to line up people to testify on Leslie’s behalf. I asked Elizabeth to call the county attorney to beg him to drop the hearing since there were going to be at least two psychiatrists testifying that Leslie did not need to live in a group home. I then found a third doctor who had seen Leslie in the hospital and also agreed to testify. He believed that Leslie had bipolar disorder — a diagnosis with which I disagreed- and wanted to make sure that Leslie would be taking medication, but also thought a group home was unnecessary.
Then, Elizabeth asked me to have some of the nurses testify because they were so shocked that someone could be committed due to changing their appearance. The nursing staff had noted that Leslie was not experiencing any mental health symptoms that would require incarceration in a locked psychiatric unit. There was no dangerousness present, as is required by the Wisconsin mental health statute on involuntary commitment. In all, Elizabeth and I were able to round up seven witnesses — unheard of for a group home placement hearing.
On the day of the hearing, I was on my way to compete in a horse show several hours away. Suddenly, I got a text from Elizabeth Rich: “We won.” She explained that soon after she filed the case at the online court-system site indicating that we were going to have seven witnesses, the county dropped the hearing. I had the wonderful task of calling Leslie at the group home to tell her she could leave the next day and go back to her job and children.
Always the eager beaver, Elizabeth right away wanted to work on the next step for Leslie, which was to fight her upcoming recommitment hearing. Leslie’s original commitment order had been for six months, which would be up in September. Typically, counties will recommend an extension of the commitment, or recommitment. An individual under commitment in Wisconsin has the right to request a jury trial at this hearing. As part of this process, Elizabeth asked me to complete a mental health report for Leslie, which of course recommended no further commitment and no court-ordered medications. Elizabeth assured me that she had had good success requesting jury trials. Thus far, the county had dropped the entire recommitment process after receiving her requests, because going through a jury trial is a tortuous process that takes a lot of the court’s time and the county’s money.
Soon after filing, Elizabeth learned that Leslie would not have a recommitment hearing. The county had indeed decided to drop the petition to extend her commitment. With a request for a jury trial and my emphatic report indicating that Leslie had been compliant and sought help when appropriate, the county had very little reason to hold her.
Leslie had one more month left on her commitment. For some reason, her social worker would not allow her to see me for outpatient medication management; she had to see the county-appointed psychiatrist. Leslie did not want to rock the boat and complied. However, the mental health statutes do not indicate that individuals under mental health commitment are required to see a specific psychiatrist. By not allowing Leslie to see the provider of her choice, the county once again violated her civil rights.
System: Out of Control
There is no end to the overreach of the mental health commitment process I have observed in Wisconsin. It is out of control. Elizabeth Rich and I have teamed up to continue our battle on behalf of Leslie and several other individuals with recommitment hearings coming up. We seek to reform the legal and medical practices in our state that do not help patients, often actively harm them, and deprive them of their rights.
According to Elizabeth, misinformation delivered by social workers during the involuntary commitment process is commonplace. Social workers confidently misstate the law regarding the rights of mental health patients. It may be that they are genuinely mistaken. More likely, they are pushing their own agenda on a person in a vulnerable state who is unrepresented by counsel. In Wisconsin, people subject to an involuntary commitment are entitled to representation by an attorney appointed by the public defender’s office, regardless of income.
Wisconsin also has very specific requirements regarding the principle that the “least restrictive alternative” must govern all aspects of the involuntary commitment process. Under the law, each patient shall “have the right to the least restrictive conditions necessary to achieve the purposes of admission, commitment or protective placement.” The Department of Human Services regulations also stipulate that “each patient shall be provided the least restrictive treatment and conditions which allow the maximum amount of personal and physical freedom…”
Once she was released from the inpatient facility after her initial detention and treatment, Leslie was subjected to what is euphemistically called “assisted outpatient treatment,” a failed paradign of involuntary treatment and forced drugging. Leslie’s story highlights another glaring deficiency in the current system: the lack of freedom to choose one’s healthcare provider and to stop taking medication prescribed by the county doctor — even when the medication is contraindicated and harmful to the patient.
Medically speaking, one of the main problems I notice in my new role as a critical psychiatrist is that many of the same people who have repeated hospitalizations are also under commitment and must take court-ordered medications. These people tend to be admitted for obsessive suicidal thoughts and self-harming behavior, and the usual culprit is excessively high doses of medications. People with mental health issues who react negatively to antidepressants and other drugs are usually prescribed higher and higher doses, with correspondingly greater and greater agitation, akathisia, and obsessive suicidal thoughts. I see this especially in adolescents placed on high doses of antidepressants, which are not even FDA-approved for use in this age group.
Leslie’s heavy-handed treatment at the hands of the police is the norm in Wisconsin and elsewhere, and was completely unwarranted and unlawful. When someone on an involuntary commitment misses an appointment or engages in behavior that a county doctor or social worker deems “risky” or “noncompliant,” all it takes is a phone call to law enforcement to bring on the humiliating and frightening experience that was foisted upon Leslie. There is usually no attempt to use less restrictive means to gain compliance, such as a phone call to the individual, and no hearing before a squad arrives with flashing lights, attracting the neighbors’ attention. They look on as officers pound on the person’s door, then take them down like a criminal, handcuff them, toss them in the squad car, and haul them off to a lockdown inpatient facility.
This Wild West, “shoot first, ask questions later” approach has no place in a democratic society. Yet that is how alleged noncompliance issues are routinely handled. This is a clear violation of due process rights, as well as a violation of the least restrictive alternative requirements that every state has in place for involuntary commitments.
The Challenge Ahead
The lesson of Leslie’s case is that launching a successful attack on involuntary commitment and governmental excesses requires a strong attorney/doctor team. One is not likely to win without the other. However, it is not easy to find a doctor, like me, who is willing to depart from mainstream medical philosophy. Nor is it easy to find an attorney like Elizabeth, who is willing and able to buck the typical rubber-stamp judicial system, especially pro bono or at public defender rates. Also, we doctors need to be well-versed in the law, so we can spot legal issues such as those in Leslie’s case. Similarly, lawyers need to be well-versed in the science behind diagnosis and treatment of the “disorders” identified in the DSM. Otherwise, our ability to spot issues, cross-examine medical experts, and make effective arguments will be severely hampered. The Wisconsin-based nonprofit foundation Andrew’s V.O.I.C.E. — which stands for Victory Over Involuntary Commitment Excesses — intends to develop a webinar series to provide this type of education for attorneys and medical professionals.
In speaking out about and resisting these mental health system practices, I know I’m going against the grain. But it is very rewarding. I am helping people — but in a way I never anticipated when I decided to become a doctor.