Developmental Disability, Disability Awareness & Advocacy, Group Home, Mental Health, Physical Disability, Social Work, Uncategorized

Group Home Residents Often Live In Costly Isolation – Same Difference in Michigan

by Chris Serres and Glenn Howatt, Star Tribune/TNS, January 10, 2020

MINNEAPOLIS — Tim Healy calls the time he spent in a Twin Cities group home “my lost years.”

Healy, 32, has an intellectual disability and needs help with basic living tasks. But for 12 years at a group home in New Hope, he got little of that. He describes a facility so short-staffed that residents were ignored for hours at a time and rarely allowed to venture outside. He says it was a period of numbing boredom, loneliness and doubt.

Today, living with his mother in West St. Paul, Healy feels reborn. Cradling a guitar, he describes his plans to get married, find a job, start a rock band and take skydiving lessons. “It’s like I was a prisoner,” he said. “I’ve been away too long.”

Healy and his family remain furious at state and county officials who administer aid to Minnesotans with disabilities. They say no one told them that Minnesota’s Medicaid program pays for the kind of services that would enable Healy to live at home and independently.

“Tim could have flourished on his own, but we were led to believe that a group home was the only option,” said his mother, Brenda Olson.

Healy’s plight is one example of the way Minnesota is forsaking a legal obligation to promote independence among people with disabilities. Rather than helping develop care plans that would allow them to live in their own homes or apartments, counties across the state continue to steer thousands of Minnesotans with disabilities into facilities that promote dependency and isolation.

State spending on group homes, for Minnesotans with disabilities who receive a coveted form of assistance known as a Medicaid “waiver,” now totals about $1.5 billion a year. That represents about two-thirds of total spending on waivers for people with disabilities — and is more than the combined state spending on agriculture, higher education and pollution control.

Despite that huge outlay, records show that Minnesota rarely conducts inspections or on-site audits to ensure that group homes are delivering the individualized care and daily activities they promise.

As a result, Minnesota has become one of the most segregated states in the nation for housing people with disabilities. In 2016, only 7 percent of Minnesotans with intellectual and developmental disabilities who received waivers lived in their own homes. Last year, some 44 percent of Minnesotans with disabilities reported living in group homes — more than twice the national average and the highest rate in the nation.

“We are spending Medicaid dollars on an entrenched system that segregates people and leaves them with little choice,” said Barnett Rosenfield, supervising attorney for Mid-Minnesota Legal Aid. “It’s completely inconsistent with the law and the purpose of waivers.”

For those confined to group homes, the experience is often one of profound loneliness and frustration.

At a group home in Bloomington, Patricia Wilson sobbed while clutching the portrait of her husband of 35 years. The two were placed in separate group homes after she suffered a major seizure. She has seen him only three times in the past year. Wilson said staff at both homes have ignored her repeated pleas that they be reunited.

In Brooklyn Park, Marrie Bottelson, an artist with cerebral palsy, has tried to forget the 13 years she lived in two group homes, where arbitrary rules prevented her from enjoying a normal social life and pursuing her passion for painting.

And in Sibley County, parents of a 20-year-old man who has severe autism and behavioral problems, Dustin Zahn, were recently told by county case managers that he had to “fail in a group home” before he could use public funds to live in his own apartment with supports.

Sue Schettle, chief executive of ARRM, the state’s main trade association for group homes, acknowledged that providers are often unable to meet resident and family expectations for access to the broader community. The primary culprit, she said, is a statewide shortage of caregivers, which has put group homes in a precarious position. Many homes can sustain just one caregiver for every four residents, which makes it difficult — even dangerous — to take individuals on outings, she said.

To address the staffing problem, Schettle said that ARRM and a coalition of disability organizations plan a major marketing campaign next this year designed to promote direct care as a profession.

“The big elephant in the room is staffing — and speaking the truth about it,” Schettle said. “We have a whirlwind of problems in this state that are largely related to a lack of human resources.”

Officials with the Minnesota Department of Human Services (DHS), which regulates group homes, said the agency has been intensifying outreach efforts to inform people of their options under Medicaid, including new services that make it easier for a person with a disability to live independently or with families in the community. The agency is also exploring ways to simplify the state’s Medicaid waiver system to make it easier for families to access benefits.

“Our systems have gotten very complex,” said Alex Bartolic, director for disability services at the DHS. “No family or person trying to get services should have to understand how all this system works.”

Minnesota’s system of Medicaid waivers, created in 1984, was designed to use state and federal health care funds creatively to serve people in their homes rather than by paying large medical institutions or hospitals. Group homes, which typically house four adults, were seen as a good option for some people.

Today, in some parts of the state, they are the default — or only — choice.

In 55 counties, group homes receive at least 70 percent of Medicaid waiver funds, according to state records obtained by the Star Tribune. In all but four counties, group homes receive more than half of all waiver spending.

“All too often, group homes are the path of least resistance,” said Lee Ann Erickson, executive director of the Arc Southwest Region, a disability rights group in Fairmont, Minn. “We fit people into the system we have built, rather than tailoring services to meet their needs.”

For taxpayers, the practice is wildly inefficient. In 2017, the state Medicaid waiver program spent $104,000 for every corporate group home resident, compared with about $25,000 for those who live independently with supports.

Amy Hewitt, director of the University of Minnesota’s Institute on Community Integration, noted that many people with disabilities “love their group homes” and have close relationships with fellow residents and staff. Even so, she said, the giant supply of group homes — there are nearly 3,800 statewide — has acted as a disincentive to develop more creative options.

In 2018, Minnesota launched a new service covered by Medicaid waivers, known as “individualized home supports,” designed to provide training and direct support for people to live in their own homes. Of the 31,000 Minnesotans on waivers who are eligible for the program, only about 210 have taken advantage of the service, state records show.

“There are many, many people who have no idea that other options exist,” Hewitt said.

On a bright afternoon in August, Cathy Joy Schlager, 64, who has Down syndrome, grinned and waved from her wheelchair as her sister pushed her down the wide streets of Lakefield, a quiet farming community in southwest Minnesota. Local residents, seeing her on a rare outing from her group home, hollered her name from yards or porches and honked their horns as they passed.

For years, Schlager volunteered at a local nursing home, where she brightened people’s days with her wry grin and homespun crafts. She played on softball and bowling teams, joined a traveling clown troupe with her uncle, and wove colorful quilts sold in a thrift shop. At dances organized by a local disabilities group, Schlager would croon along to Johnny Cash on the karaoke machine.

“It doesn’t matter where we go in this town, people know Cathy,” said her sister, Heidi Arndt. “She’s famous.”

Then in the winter of 2018, Schlager suffered a sudden deterioration of her vision, which made it impossible for her to get around without help. Her two sisters, who live and work nearby, decided they could no longer care for her alone. They moved Schlager into a small, four-bedroom group home in Lakefield overlooking cornfields. The pain of separation was mitigated by assurances from managers at the home that Schlager would receive one-on-one care and be taken out in the community at least once a week.

“Our big mistake was believing them,” Arndt said.

Almost immediately, the sisters noticed a disturbing pattern. When they dropped by after work, they found that Schlager had been left alone for hours. Apart from a few hours each weekday at a local activity center, the promised outings did not occur. Her requests to go out with friends or volunteer at an assisted-living facility — just a block away — were ignored.

“We noticed that she was spending a lot of time alone,” Arndt said.

One afternoon last spring, Joni Hanson, one of Schlager’s sisters, dropped by the group home and found her sister slumped over in her wheelchair, facing a blank wall, while two staff members played puzzles in a distant room. She had been sitting in the same spot for nearly three hours. Her dinner lay on a plate in the kitchen, untouched and out of reach.

Pressed for an explanation by her family, managers of the group home repeatedly cited a lack of staff. Most days, the home had just one employee to care for the four residents, which made it unsafe to take anyone out of the home. Even short walks around the neighborhood, so Schlager could get some exercise, were considered a risk. Her sisters said Schlager’s muscles were atrophying after so many hours in her wheelchair.

The executive director of the group home operator, Habilitative Services, Inc., said the company is dedicated to quality service, including providing residents “with opportunities to access and enjoy activities in their communities.”

Janice Reyes has worked in hospitals and senior homes in southwest Minnesota since the 1960s. “I’ve seen a lot,” Reyes said, holding up calloused hands. Yet Reyes said she found the conditions at Schlager’s group home intolerable and quit after a few months. The hardest part, she said, was the guilt that came with working 10-hour shifts alone — unable to take her clients into the community.

“Cathy is a ray of sunshine around here,” Reyes said over coffee at a cafe. “She doesn’t deserve to be hidden in the shadows.”

In 2014, federal health regulators approved sweeping new rules to promote inclusion among people with disabilities who receive Medicaid benefits. The requirements were explicit: Every setting where a person receives Medicaid funds must be integrated into the greater community. This meant that people living in group homes were entitled to the same freedoms that people typically have in their own homes — including the opportunity to control their schedules, choose their roommates, have visitors at any time and decorate their own rooms.

The rules were hailed as a historic victory by disability rights groups. In Minnesota, however, enforcement of the rules has been minimal, and public awareness of the new protections remains low, say disability rights groups.

Starting in 2017, the state has required group home providers to submit documents, known as “attestation forms,” to demonstrate that residents have full access to the community. The DHS has conducted thousands of remote reviews, known as “desk audits,” of these forms, largely to ensure that the facilities are actually submitting the paperwork, state records show.

Yet the system is largely dependent on group homes self-reporting problems. The DHS has only conducted 86 site visits of group homes since the new federal rule went into effect nearly six years ago.

Without regular spot checks, it is impossible to determine if group homes are actually delivering the services they list in attestation forms and whether residents are getting out into the community, said Roberta Opheim, state ombudsman for mental health and developmental disabilities.

“Simply requiring providers to submit a form is not enforcement,” she said. “It’s almost as if the (new rules) do not exist.”

There are also signs that Minnesota’s regulators have not kept pace with the growth of the group home industry. Complaints of abuse and neglect at state-licensed group homes have doubled since 2014, to more than 3,400 a year. At the same time, the percentage that are being investigated on-site by the DHS has declined consistently each year, falling from 46 percent in 2014 to 16 percent in 2018, state records show. Only 31 percent of maltreatment complaints have been substantiated over the past five years, state data shows.

Now Minnesota faces heightened scrutiny from a federal judge. In 2016, several group home residents sued the DHS, alleging that the state’s heavy reliance on the facilities is unconstitutional.

A federal judge hearing the case ruled last fall that the agency was violating due process rights by failing to inform people that they can use Medicaid waiver funds to pay for more individualized housing options, and then failing to notify them when such services were denied. The agency’s practices, the judge ruled, forced individuals to wait indefinitely for requested services without the chance to appeal and obtain a fair hearing.

U.S. District Judge Donovan Frank called for a “systemwide remedy” to improve the lives of people living in group homes.

“Actions speak louder than words,” said Justin Perl, litigation director for Mid-Minnesota Legal Aid, which represents the residents. “For decades, DHS has made promises to provide services in the most integrated setting, and yet it has failed to honor that legal obligation.”

It was almost dusk, and a 2-year-old boy with a head of curls was gazing expectantly out the window of a small home in Brooklyn Park.

The boy screamed with joy as Marrie Bottelson rolled her wheelchair to the front door.

“Hi, sweetheart!” she yelled, swinging the door open with her foot. The boy crawled onto Bottelson’s lap as she rolled across a living room packed with her colorful paintings and children’s toys. The smell of roasted chicken wafted from the kitchen.

Not long ago, this cheerful domestic scene would have been unthinkable.

For 13 years, Bottelson, who has cerebral palsy, was confined to two group homes where her daily life was severely restricted. Because of limited staffing, Bottelson said, she was required to be in bed by 7 or 8 p.m. Bottelson, 44, is a successful artist who sells colorful greeting cards and paints portraits at art shows and on commission; yet she had no space to do her work and house rules prevented her from painting in her room.

“Everyone said I would be safe (in the group home), but I wanted more out of life than just being safe,” said Bottelson, who is a plaintiff in the federal lawsuit. “All I wanted was a normal life.”

Then, at a state seminar on disability rights in 2013, she met others with disabilities who were using their Medicaid waivers to live in their own homes and pay for their own staff. No one had ever told Bottelson that such an option was possible. She immediately requested a similar arrangement, but was told by her Hennepin County case manager that she was “not independent enough” for individualized housing.

It took another three years of mediating with county officials before Bottelson fulfilled her dream. She now lives in a warm and bustling home, sharing it with Victoria Yang, a live-in caregiver, and Yang’s two children — Trystan, 5, and Felton, 2. The house is owned by Bridges MN, which provides independent housing for people with disabilities. Her waiver pays for Yang to help Bottelson get ready in the morning and cook her meals, and for transportation to the day activity center where she produces much of her artwork.

No one tells her when she can come or go. Cats jump into her lap as she paints. The children run and grab her shoes in the morning, and kiss her on the forehead at night. Bottelson affectionately refers to the children as “my little family.”

“People used to look at me and say, ‘Oh my God, she can’t live on her own.’ But I showed them that I can!” Bottelson said proudly.

 

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Disability Awareness & Advocacy, Group Home, Mental Health, Music, Uncategorized

Another Brick in the Wall

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!

KORN

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 self-determined.

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?

Fuck them.

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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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