Developmental Disability, Disability Awareness & Advocacy, Uncategorized

A Child is Born – Part Two

The Neverending Story – The Nothing

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 meals.

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.

And after all, this is …

The Underground Advocate!

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Disability Awareness & Advocacy, Uncategorized

Teenage Boy Looks After His Elderly Neighbors

When I see or read something relative to compassion, empathy, love… I’m gonna make sure that everyone gets a dose of kindness and inspiration! Here’s such an example.

Published by Farah R. | Positive Outlooks on September 17, 2019

While all mothers and fathers need love and attention from their children, we all know that those who need it most are elderly parents. It is during the golden years of their lives that they need our companionship the most, and it is also the best time for us to show our gratitude and repay them for all that they have done for us. As good sons and daughters, we want to be by their side 24/7 to make sure that we are at their aid whenever they need us. But due to our personal commitments – work, own families – we just can’t do so. That’s why it’s always good to have someone that we know we can rely on – a neighbor, friend, or relative – to care for our elderly parents when we aren’t around. Lucky for Tiki Joyner Edwards, she found that someone whom she could trust in the person of a teenage boy – one who wasn’t even related to them.

This young man’s name is Romemylion Mitchell. Despite having no blood relation to the family, the teen has made it his mission to check on Tiki’s parents, Trent and Cianne Joyner, every single day to check if they needed anything. A few months ago, Tiki shared the story of Romemylion’s act of kindness on Facebook, and it immediately gained a lot of attention online for all the right reasons.“I just want to take a moment and recognize this sweet fella that lives across the street from my parents. He checks on them every day and has grown to love and care for them deeply,” Tiki wrote. According to Tiki, the 15-year-old rides with his dad to the store helps him shop and assists in bringing the groceries in.

He also cuts the grass and does for them whatever Tiki’s elderly parents may need.“Not many 15 yr olds would take the time to care and be there for elderly neighbors,” she continued. That is true. Romemylion might have other things on his plate – school work, hanging out with his pals, and other responsibilities – but all of these things didn’t keep him from taking care of his neighbors. The couple didn’t need to pay the teen to do all those things – he just does – and that’s what makes this story even more beautiful. Here, we see a selfless boy dedicating a part of his day to helping other people, and he doesn’t ask for anything in return.

Over the years, the boy had developed a special bond with the whole family. When Tiki’s mom was admitted to the hospital months ago, Romemylion immediately visited her to see how she was doing.“When he saw Mom today he busted out crying and just held her tight.. what a blessing and just wanted to pass on something heartwarming instead of the sad news we see and hear every day,” Tiki wrote. It warms our hearts to see this teen willingly helping other people without expecting any reward. He is a real asset to the community and we’re sure that his own family feels very proud of him!

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Music, Uncategorized

A Brief Intermission: with AC/DC!

Pause before Part Two….

Just….. because. It’s a Friday, right before the weekend – and super heroes come in all shapes and sizes. I wish that I could have seen AC/DC in concert, but too busy taking care of business at home and living life over the years. This is a favorite of mine and my grandson’s. We rock out to this when we’re in the car and traveling – and we never give up. Always moving forward.

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Disability Awareness & Advocacy, Uncategorized

A Child is Born – Part One

It’s been many years of constant love and trying to do the right thing; always struggling with the powers that be … and thinking that others who were supposed to be in place to help, were also on that same page. Sometimes (okay rarely) I was right – but more times, very wrong

The unfortunate truth, in being the parent or guardian or advocate for a child/adult (or for an individual with a disability), is that this has always been basically a flip of the coin. My real-life experiences have been long and many.

I have learned that laws, regulations, policies and guidelines sometimes mean something and sometimes mean nothing at all. It all depends on the commitment of others. It depends on who the doctor or specialist is and “their staff”. Sometimes their staff drop the ball, are rude don’t follow through or just don’t get it – and it doesn’t matter because they get paid anyway.

It depends on the special education system, whether teachers, therapists (Physical, Occupational Therapists and Speech Language Pathologists). And then there is the supervisors and administrators. You can have the best teachers and school therapists and if administration doesn’t support them to support your child, well…. much is lost if not entirely.

And we have next those at the county-level, namely community mental health, under the state auspices of control (control of funding and budgets), who are mostly social workers with a bachelor’s degree who come out of college not knowing anything on a moral or practical level. Forget any need to hone your craft or go beyond what they “learned in college”. I term them as “the gatekeepers”, who say “no” on a regular basis… because they choose to remain disengaged, ignorant or lazy.

They’re more involved in appeasing “the state” when it comes to how the money is spent…. or not spent.

I think that when these young and inexperienced social workers, when they start to work on behalf of others “less fortunate”, are too often taught (assimilated into a kind of “collective”) that it’s all about the money … as in don’t spend the money. So no wonder that there is a desensitization-process and a disconnection between what they should do and could do on behalf of people with disabilities – and then it’s a given, that those who are hurt the most are the most-vulnerable. That minority are those who are severely-multiply disabled.

I’ve heard just about every reason for “no”. They like to say they have a “lack of resources”; “We don’t have resources for that….”. We don’t have to “provide that support or service” because it’s “not written in a policy manual”. Or they outright ignore repeated attempts by parents, guardians, individuals to change the system, who are trying their best to get it to work for their person.

Why yes, “they” (those who are disabled) are PEOPLE. People are human beings. (I felt the need to clarify that one!)

First there were the medical issues and meeting those needs in keeping Max alive. He was a preemie, like many, many other babies before and after him. He was tiny and precious and okay, oh-so-cute – and my child with a precarious and unknown future.

I was actually afraid to love him in the beginning! I had been told by a neonatologist that an infant born as early as Max, was certainly at the highest risk of developing some huge problem with some major organ or system in his tiny body. Isn’t that the saddest thing ever? Being afraid to love your child? To become attached? Awful!

What to do? What should I know? I had never had a child with severe, multiple disabilities as his. I decided I would be brave and I knew that I loved him no matter what, and I knew that I would do whatever I had to, to protect him – against all odds. It’s been that way ever since.

This little guy came home on an apnea monitor, medication around-the-clock to keep his heart rate up. He was on oxygen. Very scary times. Absolute anxiety and this desperate feeling churned inside of me. What was this awful emotion? It was stress rolled up into a ball of fight or flight. I remember bathing him for the first time in the NICU, knowing as family members watched, that I had to look confident so that they wouldn’t be scared. I had to be brave for Max’s sake.

He couldn’t come home until everyone in the family learned how to do infant CPR. And then there was the throwing up and every little ounce of formula that he’d drink was mostly coming back up. It was a huge struggle….

His life, his quality of life, has always been a struggle and very frustrating when people have not cared to do their jobs. I mean, why go into jobs (or fields related to the human condition) that require you to be resourceful, kind, patient, persistent and strong? These types of jobs aren’t careers, also in my opinion, but should be termed as a “calling”.

So I jump forward, many years into the future and he’s grown up into a handsome young man with a brilliant smile; with eyes that (must) express his both funny and serious soul. And what is life like now?

END OF PART ONE

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Disability Awareness & Advocacy, Music, Uncategorized

Words Darker Than Their Wings

By Alter Bridge

Good Sunday morning. For your listening pleasure and consideration of what is justice (and action/advocacy) for those who are oppressed in this world – and to engage. We must all become aware and take responsibility in creating positive change. The point is to keep shining the light of truth in all the dark corners… and never stop doing the right thing. Anyway, that’s my personal interpretation.

Lyrics: Words Darker Than Their Wings

They say you are right
I hope that I’m wrong
I know that you tried
But still it is gone

Just don’t you lose hope
I swear I never dream that we’re alone
Now don’t you let go
I swear I still believe though I don’t know

Remember the years
I still walked tall
I only fear
Now I only crawl

How could I be wrong?
I hope there comes a day your fear is gone
How could we be lost?
Lost just cease to be not carry on
Into the light may you fall
Into the light may you follow
Into the light may you know
Truth alone

Into the light may you fall
Into the light may you follow
Into the light may you know
Truth alone

You can love someone
Go never to ask why
Or to fear again
Go find your peace tonight
Go set out towards the sun
Let the new begin
Go soon your day will come.
Day will come

Into the light may you fall
Into the light may you follow
Into the light may you know
Truth alone

Into the light may you fall
Into the light may you follow
Into the light may you know
Truth alone
Truth alone

Truth alone
Truth alone

Songwriters: MARK TREMONTI, MYLES KENNEDY

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Commitment, Disability Awareness & Advocacy, Group Home, Inpatient Psychiatric, Mental Health, Mental Illness, Social Worker, Uncategorized, Unjustified

Abuse of Power Fueled by Ignorance and Greed has Created State-Sanctioned Human Trafficking in the United States

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.

Fighting Unjustified Commitment in Wisconsin: Leslie’s Story by Gail Tasch

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.

Fighting Recommitment

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.

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Disability Awareness & Advocacy, Music, Uncategorized

Breathe

I love ALL types of music and it’s something that you’re going to have to put up with! My particular favorite is Rock – all of it.

It’s about the message in song (that “feeling” and connection) and how it all comes together; the interpretation and the essence. It’s the beat and the rhythm. It’s the pace of a person’s heart, in repose or racing.

Music allows me escape from a hectic and sometimes sad and scary world. It inspires me and keeps me moving forward. Music keeps me strong.

Music takes me into a world of creation and then, suddenly, I can see and feel the magic of all the possibilities – that I never would have considered before. It’s breathtaking.

It’s a quiet, cool Fall night. It’s been a day of small accomplishments. I’m okay. I hope that you are too.

Breathe …. never give up. Never quit.

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