Michigan: The Washtenaw County CMH Recipient Rights Advisory Committee seeks new members

"Every person who receives public mental health services has certain rights. The Michigan Mental Health Code protects some rights. Some of your rights include:

The right to be free from abuse and neglect

 
The right to confidentiality

 
The right to be treated with dignity and respect

 
The right to treatment suited to condition..."

This notice is from the Washtenaw County Community Mental Health Recipient Rights Advisory Committee (RRAC):

WE NEED YOU…to join the Recipient Rights Advisory Committee!

What we do:

• Meet in person four times a year to review recipient rights complaint data.
• Protect the Rights Office from pressures that could interfere with the impartial, even-handed, and thorough investigations.
• Receive trainings on WCCMH programs and policies.
  
• Act as the appeals committee for any accepted rights appeals.  
• Receive a $25 stipend for every meeting attended!
  

Call the Office of Recipient Rights at 734-219-8519 or email Leah Raehtz raehtzl@washtenaw.org for more details!

Abelone Kelley March 16, 2022 0

Marina Ovsyannikova Interrogated for 14 Hours

Russian Journalist Marina Ovsyannikova has been released after being interrogated for 14 hours without a lawyer, for two consecutive sleepless nights, and after paying a fine of €250.  She was detained for disrupting a major Russian TV news programme with a placard that read "Stop the war, don't believe the propaganda, they're lying to you", BBC News reports.

Previously, she had recorded a video with a statement explaining her protest, which can be seen below, thanks to The Guardian.

Some interesting words you can find in this story are: to be fined, to be released, a live TV news programme, the set, to plead not guilty, a charge, to call on [the Russian people] to protest, to be prosecuted, to ban, the court hearing, to be denied access [to a lawyer], to stress, to come up with an idea, the courthouse, her whereabouts, the placard, to be ashamed, the television screen, this inhumane regime, a blog run by former BBC journalist, to praise her for telling the truth, to launch an effort, hooliganism. This text is suitable for B2 students.

Abelone Kelley March 15, 2022 0

Michigan: Part-time workers were eligible for pandemic unemployment benefits, even when told they were not...

This is according to an article in the Detroit Free Press, "Whitmer signs bill clarifying eligibility for pandemic unemployment benefits" by Adrienne Roberts, 2/28/22:

Governor Whitmer has signed a bill into law that clarifies that part-time workers were eligible for federal pandemic unemployment benefits.

The new law affects PUA (Pandemic Unemployment Assistance) claims filed after March 1, 2020, for those who had issues due to only being available for part-time work. The PUA program ended in September 2021. People with disabilities and part-time caregivers were among those who were denied benefits that they should have received.

The new law makes it clear that part-time workers were eligible for  federal unemployment benefits. Many were denied these benefits because of the way the forms were worded, making it appear that only those who could claim to be “able and available” for full-time work could claim benefits. 

State Sen. Jeff Irwin, D-Ann Arbor, is quoted in the article:

"To me, this was just a perfect example of putting the box-checking and bureaucratic needs above the needs of the citizens and the true intent of the law," state Sen. Jeff Irwin, D-Ann Arbor, who sponsored the bill, said about the discrepancy.

"…Between this new law and recent guidance from the federal government for applying blanket waivers for overpayments when the claimant is not at fault, Irwin said many of the pieces should be in place to "sweep away these fights with the agency that are unnecessary, unproductive and that we shouldn't be having."

Abelone Kelley March 02, 2022 0

Emergency department care and hospitalization: It’s not just COVID that is the problem…

The term Emergency Room (ER) has been replaced with the term Emergency Department (ED) at Michigan Medicine. I use both terms interchangeably.

These are personal experiences I have had involving my sons’ care at the University of Michigan hospital in Ann Arbor. To be sure, my sons have received outstanding and sometimes life-saving care through Michigan Medicine, but in a large institutional setting like the University of Michigan Hospital, there are pitfalls and gaps in care that can make a visit to the ER or hospitalization excruciating for patients and their families. Improvements in care rely on acknowledging the flaws as well as successes in treating patients, especially those with extraordinary medical needs.

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The COVID pandemic has affected routine medical care, especially at an institution as large as the University of Michigan’s Michigan Medicine, in almost every aspect of care. But some problems with emergency care and hospitalization are long-standing, at least from a patient-perspective.

My son Danny is a complicated person: He is 45 years old and has severe Cerebral Palsy, profound intellectual disabilities, severe visual impairment, a rare seizure disorder, severe reflux, a history of gastric bleeds and numerous other problems, most of which are related, directly or indirectly, to his original diagnosis of severe brain damage soon after birth. A doctor who has not seen him before has a lot of catching up to do before he or she can start making treatment decisions. This is one reason why I almost always accompany him to the emergency room when the group home calls to tell me that his seizures are getting out of control or something else out of the ordinary merits a trip to the our local Emergency Department.

Out-patient medical procedures and hospitalization have their problems also, especially for a person like Danny who baffles doctors under normal circumstances. I’m too old to do overnights at the hospital anymore, which makes it all the more important  for me to get in on the early stages of assessing Danny soon after he arrives at the hospital. For instance, if he is having seizures, the ER nurses want to know if he is flinging his right arm around because of a seizure or if that is just normal activity for him? It’s “normal”, but they may be missing the more subtle signs of ten-second seizures that make him look startled, smile, or laugh.

Whoops! The ambulance takes Danny to the wrong hospital

Not long ago, Danny had another run to the ER. We found out later he had a urinary tract infection, but that diagnosis took awhile to determine. His group home is within twenty minutes of two hospitals; Michigan Medicine has all his medical records and contacts for his doctors within the same medical system. The other hospital does not. The usually safe assumption by the group home staff is that the ambulance will take him to the right hospital, but this time that did not happen. When more than 30 minutes had passed since an ambulance had left to take Danny to the ER and he had not arrived at the U of M, the group home called the other hospital and determined that Danny was there without enough information to figure out why he was there or who could make medical decisions for him. I drove over there while they arranged for him to be transported back to the correct hospital.

Danny has not had a lot of luck in his life, but at this particular moment he lucked out with a nurse who had a family member with cerebral palsy. She got the transfer to the other hospital going, knowing exactly why I would want him moved to be close to his doctors and medical records, and Danny was as happy and content as he could be with a festering UTI and waiting for his second ambulance ride of the morning.

In praise of the other hospital: A few years ago, we suspected that Danny had aspiration pneumonia and his oxygen levels were declining rapidly. Because the other hospital was a few minutes closer, it made sense to get him there as quickly as possible. He spent a day in intensive care where they got him stabilized and on antibiotics and a few more days weaning him off of oxygen so that he could go home. They gave him excellent care. As a a smaller hospital (though large by most standards in rural areas) it was less of a rat race than the U of M hospital. For instance, the ER has its own free parking lot, so that visitors do not have to wait for valet parking or park in a huge parking garage where it might take fifteen minutes or more to make it down to the hospital Emergency Department.

Hurry up and wait! Pre-COVID days in the ER were not much better

Many years ago when Danny was still in school, he rolled off a changing table and hit his forehead on the floor. This was a dramatic bloody event, but did not do any permanent damage. The ER was full that night. One of the people waiting to be seen was a young woman in a wheelchair who, like Danny, was a frequent flyer in the ER. She was in her element, chatting with other patients about her ailments and high-fiving the staff who seemed to know her well. Others occupied themselves patiently chatting, reading, or watching TV or moaning, depending on how ill they were. Danny and I waited for hours - we watched a full episode of ER on TV while in the actual ER. A triage nurse had stopped the bleeding from Danny’s forehead and put a butterfly bandage on the wound. It took so long to get in to see a doctor, that the wound had begun to heal and we were sent home without further treatment.

At another ER run with Danny, we sat for hours with a waiting room full of miserable sick people, one of whom finally stood up and said, “If I’m going to die, I want to die at home, rather in this waiting room!”. She stood up and left along with a number of other people who had also come to the end of their collective ropes.

First-come, first-serve is not always the best way to deal with all ER patients

Danny has a feeding tube. The outer part of the feeding tube can easily be replaced by the group home staff, but on one occasion they were unable to do this successfully. A nurse at his primary care doctor’s office could have handled this in less than 15 minutes, but it was after hours and the ER was the only alternative. Without the feeding tube working, he could not get food, water, or his seizure medications.

At the ER, Danny waited his turn. It was not until 3:30 in the morning when someone could attend to him. By that time he was having seizures with increasing frequency and needed his emergency seizure meds that stop seizures in their tracks. If the ER staff had taken him first, regardless of what seems fair to other people, he could have been out of there in twenty minutes, instead of occupying time and space needed for other patients, not to mention the expense. Instead, he missed a feeding and his seizure meds that evening and spiraled into a completely avoidable major seizure event.

This has also occurred while he was in the hospital waiting for a test to determine the cause of a gastric bleed. He was not allowed food and water so that he could be safely anesthetized, but because of delay after delay in administering the test, he ended up going for days without nourishment, except when we insisted that they give him a feeding in the evening before another scheduled test. That hospital stay also included a bout of uncontrolled seizures. I also think that being thrown so far off of his schedule for feeding and seizure medications, it took extra days for him to recover. After he got home, he started having seizures again a day or two later.

People with extraordinary medical needs, especially those who are seen frequently in the ER, cannot afford to wait their turn. One partial solution is available through a local ambulance service. They will send paramedics to the home to assess the condition of the person needing care and give advice as to whether a trip to the ER is recommended and then take the person there if it is.

Michigan has closed all its publicly operated Intermediate Care Facilities that in other states serve people with the most significant medical and behavioral needs. An ICF, funded by Medicaid, is usually equipped with the medical expertise to take care of a person like Danny, but the ideology of the day considers these facilities too “’institutional”, assuring the public that they are unnecessary. What often happens is that one “institution” (an ICF or nursing home) is traded for another, a hospital, for instance, and overuse of the ER for what is routine care for a person with extraordinary medical needs. The criminal justice system for a person whose behaviors are out of control often replaces the expertise available at an ICF to react to these events.

The way the hospital handles complaints is important

In another case of an ER visit going badly, my other son, Ian, was brought to the ER with a swollen knee. [Ian also has CP and a number of the same problems that Danny has. He is a good-natured fellow who endures medical emergencies more easily than Danny].

The group home noticed that Ian’s knee was swollen. It was after regular office hours at his doctor’s office. We did not know if  this was a serious problem - Ian has no ways to communicate how he feels or what happened to him. We arrived at the ER around 6:30 pm with an aide from the group home. We waited about an hour, when he was called in to have an X-ray of his knee. Then we waited for him to be seen by a doctor. Not wanting to be too pushy and having endured many hours-long waits to see a doctor when the ER waiting room was full, I waited until after 11 p.m. to ask at the reception area how much longer it was going to take. The nurse looked into it and finally said that Ian had discharged himself from the ER at 7:30 pm. A man who has never talked or had any reliable mode of communication and is unable to tell you how he feels discharged himself from the ER?

While Ian was getting his knee X-rayed, someone had called his name to be seen in the ER. He did not respond and we did not hear the call, so the assumption was that he just left.

By the time we found that Ian had been dismissed from the ER, he had already missed dinner and his evening seizure meds, so we decided that he should go home and be seen by his doctor the next day. We found out later that Ian had a fractured knee-cap. If he had been mobile and was putting weight on it, it would have been painful and might have eventually needed surgery. He is not mobile and the best thing to do at the time was to wait and see if it would heal on its own. As far as we know, it healed well and has not bothered him or caused any further trouble.

The way this had been handled by the ER, especially the fact that they did not seem to know that Ian had already gone to Xray was egregious, but without serious consequences. At the time, the University of Michigan had come to the conclusion that sometimes it was better to fess up to mistakes and fix whatever caused the problem in the first place. The U of M also had some evidence that handling mistakes in this way was actually preventing some lawsuits against the University.

I filed a complaint and got a letter back from Patient Relations after an investigation of the matter. They agreed with me that none of this should have happened and had met with staff to make sure that such a simple avoidable mistake did not happen again. The hospital did the right thing, made the staff aware of a really stupid mistake, and maybe improved the situation for other patients. I think this affects everyone’s morale. It is easier to take care of a mistake immediately with a little honesty and de-escalation techniques that leave room for a successful resolution of any dispute.

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For complaints at Michigan Medicine, contact Patient Relations.

Phone: 734-936-4330
or toll-free at 877-285-7788
Monday-Friday 8 a.m. - 4 p.m.
Walk-in: During the COVID-19 pandemic many Patient Relations staff are working remotely to help minimize the number of people in our hospitals and health centers. Please call our office to speak with a Patient Relations staff member directly or to schedule a future appointment at 734-936-4330, Monday through Friday, 8 a.m. to 4 p.m.
Online: Concern form (secure and confidential)(link is external)
Download the Patient Relations Brochure(link is external)
Please have the following information ready when you contact Patient Relations:
    •    Patients MRN or Date of Birth
    •    Date the concern occurred
    •    Name of the Department Involved
    •    Name of the people involved
    •    Concise explanation of the concern

Abelone Kelley March 01, 2022 0

20 Best Movies of 2021

BBC Culture  publishes the list of the 20 Best Movies of 2021, which includes Almodovar's first film in English, "The Human Voice". 

In this dense article, which is full of simple and composed adjectives and adverbs you will find interesting words and expressions for C1 students like: "[a] suspenseful, action-filled [film], wiliness, the film's themes [...] resonate profoundly with social justice movements today,  to feature, damsels in distress, [a] dreamlike film, a callow knight, to behead, to stroll, to gasp, bewildering, a smart-mouthed comic sidekick, swirl, stunningly shot, to blur the boundaries between fact and fiction, to reel back, to capture [the novel's] nuance, an entrancing work of art, over-the-top entertainment, giddy,  to mess up, a spellbinding drama, endless grievances and yearnings, grief, barrage, bone-crunching violence, grip, to boast, strait-laced, brooding, creepy, sprightly, chilling, a grief-racked, a pared-down drama, a stunner, haunting, a heart-wrenching scenario, a run-down prison, griots, roaming free, to veer into myth, chatty, a heart-rending film, a visually dazzling film, the film is loosely based, from defiant pride to pleading to resilience, a glamourous vermilion gown, outrageous, an uproarious celebration, a piquant warning, subtlety". 

If you prefer to hear the flow of oral English, you can listen to NPR's list of the 10 Best Movies of 2021 which includes Almodovar's "Parallel Mothers". The audio comes with a script, which can be helpful for C1 students. 

Abelone Kelley January 06, 2022 0

An anonymous $550 million gift to Western Michigan University will help fund tuition-free education and low-cost housing

This is not specifically relevant to news about developmental disabilities, but it is the sort of thing everyone should know about and pass on to friends who might benefit from this.The dog at left is the late Lucy Barker, not to be confused with our current dog, Polly Barker.

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An anonymous $550 million gift to Western Michigan University in Kalamazoo, Michigan, will help fund “tuition-free education, low-cost housing, a new innovative Living Learning Community and internship stipends for students attending the Kalamazoo school”, according to an article in the Detroit Free Press by David Jesse, 12/9/21. “It is the largest single gift ever given to any public university in the nation.”

According to the article, the University will launch several programs to help students:

• “The first, the new Bronco Promise will provide a tuition-free WMU education for up to five years for first-year students who come from Michigan families earning an adjusted gross income of $50,000 or less who have net assets under $50,000, the school said in a news release. University officials plan to hand out the scholarships to 340 students in the 2022-23 academic year and a projected 600 students each year after.
• “Western will also create a program to give up to $6,000 in housing and dining scholarships to 110 incoming students for their first year. That will cover about half of living expenses for a year, the school said. It will also create a new Living Learning Community for the students. They will live together in double occupancy rooms in a section of one of Western's residence halls. 
• “Students who attend Kalamazoo Public Schools or have a Detroit or Grand Rapids address will get preference for the need-based scholarships, but all Michigan residents are eligible to apply. Applications are due Feb. 15, and decisions will be released in March.
• “Western is also creating a program that will subsidize up to $3,600 in wages for up to 100 students each year with competitive, need-based stipends. The internships will be for students working with private and nonprofit organizations, the university said.”
• “The school will also give 800 upper-level students each year a need-based award up to $1,000 that can be applied to tuition and fees to help students complete their degrees.”

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From Wikipedia: “Western Michigan University (WMU) is a public research university in Kalamazoo, Michigan. It was established in 1903 by Dwight B. Waldo. Its enrollment, as of the Fall 2019 semester, was 21,470... It is classified among 'R2: Doctoral Universities – High research activity'...

Abelone Kelley December 10, 2021 0

Thinking differently about COVID outbreaks with widespread vaccination and a better understanding of the virus

In an article in the San Francisco Chronicle,  "We need to start thinking differently about COVID outbreaks, says UCSF's Monica Gandhi", 11/11/21, Gandhi is critical of recent decisions that she believes are too restrictive, now that there are areas of the country with high rates of vaccination and evidence that some venues are not conducive to spread of the COVID virus. 

Monica Gandhi is an infectious diseases specialist and professor of medicine at the University of California San Francisco. I heard her on a podcast about a month ago speaking about the COVID pandemic with more nuance and less hysteria than what you hear from most non-experts and political commentators.  Many commentators flail around spouting numbers and terms that most people do not understand (including the speakers themselves) and irresponsibly interpret their misunderstandings to further one skewed political belief or another. I imagine some of Gandhi's thinking is controversial among fellow infectious disease experts, but that is as it should be. Discussion about uncertainties among experts about a contagious disease is what leads to better understanding and better evidence-based public policy decisions.

Her article is well-sourced for anyone wanting to learn more and to follow her reasoning.

My own interest in this is in keeping my sons, who have multiple disabilities, and other residents of their group home from contracting COVID. None of them need or deserve the consequences of sloppy thinking and excessive risk-taking that could lead to the preventable transmission of the virus. The so-called "Dignity of Risk" where many disability advocates see risk as a virtue, does not apply in this situation. 

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Excerpts from "We need to start thinking differently about COVID outbreaks, says UCSF's Monica Gandhi" by Monica Gandhi, 11/11/21

Gandhi takes issue with the recent cancellation of the University of California/USC football game after 44 students and staff tested positive for COVID despite a 99% vaccination rate: 

"...the cancellation of a highly anticipated game like this one due to COVID-19 has led to online speculation — fueled by scary headlines — about the dwindling efficacy of vaccination and a return to the conditions that led to last year’s deadly winter surge..."

High vaccination rates means that some restrictions can be lifted:

 "But, in truth, clusters of mostly asymptomatic cases among the vaccinated, like what we’re seeing at Cal, are neither cause for concern, nor unexpected with a virus that will become endemic. They are an emerging part of our new normal. And we need to start recognizing — and more importantly — speaking about them as such."

..."Prior to the availability of the vaccines, we employed a variety of techniques to control the virus...But things have changed. In areas of high vaccination, mass asymptomatic testing no longer needs to done for those who are vaccinated, according to Centers for Disease Control and Prevention guidelines. Even testing for coronavirus exposure should be confined to individuals who were in close contact of a symptomatic person."

Vaccines reduce transmission:

"...A study of symptomatic delta variant breakthroughs from Singapore showed that the viral load by a value on the PCR test (cycle threshold, a test that should not be used to make clinical decisions) may start as high, but quickly comes down in the vaccinated (compared to the unvaccinated). This makes sense, since the immune response in the vaccinated can take a moment to kick in and fight the virus..."

"It’s essential to remember that we only need to take emergency medical or public health measures if there are clinical implications in play...if vaccines reduce the chance of being infected (vaccinated people are 13 times less likely to be infected than unvaccinated) an asymptomatic vaccinated person should not be tested without a direct exposure from someone who is ill."

Different metrics should be used in determining restrictions:

"[Using asymptomatic case counts] public health officials in the Bay Area (except for Marin County) appear to be using this metric to determine the necessity of restrictions such as masks, instead of a more appropriate index like COVID hospitalizations...Young people have been restricted during the pandemic in the United States...to protect others. We owe it to them to return their lives to normal, especially when that was the promise of public health officials in the context of vaccine mandates at many colleges and universities. Football (an outside activity) was shown to be safe and lead to no transmissions in a study from last year, prior to vaccinations and in areas of high community transmission. It is too late for this Cal-USC football game, but we need to think of outbreaks differently from now on in the context of the vaccines and live our lives accordingly." 

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See the original article for complete references. 

Abelone Kelley November 15, 2021 0