Saturday, April 18, 2020

The American Way of Life vs. The American Way of Death

Spring in Michigan
As the covid-19 pandemic rages on, measures to blunt its impact on the physical health of American citizens are also affecting the economy. When you can’t work because you are ill or you have been ordered to stay home, the failure of the government to provide support for people in this situation leads to ever more misery and worry. States and local governments are also heavily impacted with loss of tax revenues and unanticipated spending on the acute medical needs of people infected with the virus. Legislation to address the economic fallout from the pandemic has so far been inadequate to meet the needs of ordinary citizens and local communities, but criticism of state and local efforts to mitigate the crisis is often misplaced. The pain is ultimately caused by the spread of the virus rather than state and local efforts to mitigate it.

U.S. Representative Trey Hollingsworth, a Republican from Indiana, spoke in favor of reopening the economy by easing restrictions put in place by stay-at-home orders from state governors. He acknowledged that there was “no zero-harm choice here” between lifting restrictions and preventing loss of life from Covid-19, the disease that has led to over 2 million deaths worldwide. 


“‘Both of these decisions will lead to harm for individuals, whether that’s dramatic economic harm or whether it’s loss of life,’ he said. ‘But it’s always the American government’s position to say, in the choice between the loss of our way of life as Americans and the loss of life of American lives, we have to always choose the latter.” 


Who is the Congressman suggesting we sacrifice to the cause of maintaining “the American Way of Life”? 


I’m not planning to do anything that hastens my death or that of my two sons who live in a group home with four other adults who are all highly vulnerable to the worst effects of the virus. And I am not convinced that we have no alternative to just letting the virus rip through the population, as the Congressman appears to be suggesting. I have always known that my sons, who have profound mental and physical disabilities, are considered expendable by people who don’t know or understand them and even by some people who do understand them and should know better. But that could be the effect of opening up the economy before precautions are in place to prevent the deaths of vulnerable people.
 

We are already dampening the effects of Covid-19 by staying home, easing the burden on the medical system of treating very ill people with the virus, and buying time to find treatments and a vaccine before we give in to it. Testing is of utmost importance so that we have a better handle on what we can and cannot do in terms of reopening the economy. We need tests to determine who is currently infected and contagious followed by testing for antibodies to see who in the population has immunities to being re-infected as we try to emerge from the trauma of the pandemic.

Help from the federal government to states to test for the disease (remember “Anybody that wants a test [for the coronavirus] can get a test.”?) has not been forthcoming in the degree to which it is needed. It appears to me that the President fears that if we know too much about the spread of the virus through testing, it will adversely affect his bid for re-election.
 

In terms of what the pandemic has done to the economy of the United States and the world at large, we seem to be in for a possible long and severe depression related directly to the disease itself and the failure to react quickly enough and strongly enough to stop its spread. The fear and uncertainty of a weak response to this disaster by the federal government should be worrying to all of us, but the good faith actions of governors to attempt to slow down the disease is not the direct cause of joblessness and poverty. People who are losing their jobs through no fault of their own deserve at least as much support from Congress and state legislators as the friends, lobbyists, and donors to the campaigns of politicians. Surely the path back to health and security involves dealing with both the disease and its economic repercussions together and improving on the inadequacies in our medical system and inequality in our economic system.

Thursday, April 16, 2020

Covid-19 music video


Couch Choir - (They Long To Be) Close To You

From:

35.6K subscribers
A few days ago we asked the internet to stop misery scrolling for a moment, and to sing with us! Over 1000 people from 18 countries submitted a video of their performance of “Close To You” (The Carpenters) in just TWO DAYS. Every submission that we successfully received was manually added to the collective. And then we saw the magic unfold… 
 
Plug in those earphones and turn this up. We can’t adequately express in words what a gift your videos were to us. Each was like unwrapping a beautiful, personal, virtual hug. Thanks for trusting us with your voices, and for sharing your lives with us for a few minutes. We really hope the result gives you something to smile about. We’d love you to share it far and wide (please note, we won’t ask you to make it viral…) Special thanks to Sleepy Mountain Films for this incredible edit. Until our next Couch Choir session… Pub Choir

Friday, April 10, 2020

Subminimum Wage: Exploitation or Lifesaving?


I interrupt coverage of the Covid-19 pandemic with some nostalgia from way back in January 2020 ...

This is from the National Council on Severe Autism (NCSA) blog: 

Disability Advocates Discriminate Against the Severely disabled by Harris Capps, 1/16/20
 

[This commentary is based on a response to the above video, “Exploitation OR Lifesaving? The Controversy Around Disabled People Being Paid Pennies An Hour,” by Philip DeFranco.]

See more on this issue in The DD News Blog
 

Thursday, April 9, 2020

Michigan Medicine Covid-19 Update, 4/9/2020

Michigan Medicine is the University of Michigan medical system, including the U of M hospital in Ann Arbor and other facilities. The following are excerpts from the Covid-19 Update Website.

["NOTICE: Except where otherwise noted, all articles are published under a Creative Commons Attribution 3.0 license. You are free to copy, distribute, adapt, transmit, or make commercial use of this work as long as you attribute Michigan Medicine as the original creator and include a link to this article."]
 

April 07, 2020

 

Media Contact: Mary Masson 734-764-2220
 

Michigan Medicine releases number of employees tested positive for COVID-19
 

Michigan Medicine is releasing statistics on how many employees have tested positive for COVID-19.
 

As of Monday, 4/6/20:

• 728 Michigan Medicine employees have been tested for COVID-19
• 110 of those were COVID-19 positive
 

Importantly, please note these numbers don’t indicate how or where those who tested positive contracted the disease. The numbers reflect just those who sought testing at Michigan Medicine or those hospitalized at Michigan Medicine. Some Michigan Medicine employees may have been tested outside our system.
 

Less than 10 employees were hospitalized for at least one day.

COVID-19 at Michigan Medicine by the Numbers

 
Michigan Medicine is posting daily snapshots of our current COVID-19 testing and inpatient count.


As of April 8, 1:00 pm:


• Total patients tested for COVID-19 at Michigan Medicine since the pandemic began (includes pending tests): 3,588

• Total positive tests: 706

• Tests pending (waiting for results): 158

• Current inpatients that are COVID-19 positive: 229

• Total COVID-19 patients discharged: 149

• COVID-19 patients discharged in the last 24 hours: 11

[Numbers for the State of Michigan: 20,346 confirmed cases in Michigan, including 126 cases out of state, 287 cases from the Michigan Department of Corrections, and 77 cases unknown. In addition, 959 coronavirus-related deaths have been reported since March 18, 2020.]

Appointment Locations Update During COVID-19

Temporary Clinic Changes During the COVID-19 Pandemic
 

Updated March 26, 2020
 

In order to limit exposure for our patients, their families, and our staff, we have made several adjustments at our outpatient clinics, and many of our clinics are scaling back operations temporarily. This means that:

• Non-essential appointments may be rescheduled, or, in many cases, turned into Video Visits or E-Visits.
• Your appointment may be in a different location than when it was scheduled. Use the tool below to see if your clinic is affected.
If your clinic is not listed, patients are still being seen at that location. If you have questions about appointments, you may:
• Call your clinic phone number. All clinics are still accessible by telephone.
• Send your provider team messages through the Patient Portal.
 

If you believe you may have COVID-19 and are a Michigan Medicine patient, please call our COVID-19 hotline at 734-763-6336, or use an E-Visit to be evaluated by a Michigan Medicine health care provider.

Sunday, April 5, 2020

Covid-19 Michigan Update

When the news changes from hour to hour and it all seems important and noteworthy, a news update on Corvid-19 in Michigan may be an exercise in futility, but I will give it a try. There are tidbits from the news that relate especially to the families I know who have family members with IDD (Intellectual and Developmental Disabilities) and may have a lasting impact, but that is anyone’s guess.

Temporary Family & Visitor Restrictions at Michigan Medicine

If you or a loved one needs clinic services or hospitalization at Michigan Medicine at the University of Michigan in Ann Arbor, “Temporary Visitor Restrictions” have been issued. All routine visiting is temporarily suspended. Non-routine visiting, however, is in place in special circumstances. Here a few of those special circumstances:

Pediatric inpatients - One adult primary caregiver for neonatal and pediatric patients. It is expected that if a caregiver will be present, one caregiver be designated for the entire stay to support the child’s medical care.

Adult developmentally delayed inpatients - Patients with developmental delays may have one visitor (where this one visitor provides safety and is key to the patient’s care).

Adult and pediatric inpatients at end of life - Up to two visitors at a time for patients at end of life.

Outpatient clinics - One visitor is allowed to accompany each patient to an appointment, unless an additional aide or assistant is required.

How bad can the Covid-19 threat get for vulnerable populations? 


Here is one example from the Detroit Free Press, “31 residents, five staff test positive for COVID-19 at west Michigan nursing home” by Christina Hall, 3/31/20.

“Kent County [the Grand Rapids area] Health Department spokesman Steve Kelso confirmed the numbers provided by the facility and said the first positive case was reported Friday. By Tuesday, there were 36 people sickened in the 77-bed facility.” At the time the article appeared there had been no deaths at the nursing home.

On a more hopeful note, this story by John Wisely appeared in the Detroit Free Press on 4/2/20: “Ann Arbor teachers, students use 3D printing to make face shields for health care workers”.
 

"'I got multiple emails and texts from different groups that I'm attached to,' said Tom Pachera, who teaches design, technology, engineering and prototyping at Skyline High School in Ann Arbor. 'A couple of our robotics kids and several of my students asked if we could get the printers, our 3D printers from our different labs in our schools.'"

In a collaboration between teachers, students, and the Ann Arbor community, face shields are being put together using a 3-D printer and plastic sheets that teachers used to use with overhead projectors.
 

“The teachers aren't the only ones to get involved in it. Ian Steiner, a 16-year-old sophomore at Skyline High got involved through a family friend, Kevin Leeser, a disaster response nurse who formerly worked at the University of Michigan hospitals. 

“Leeser knew health care workers were running low on protective equipment and wanted to help. He'd gotten a 3D printer as a hobby last year and decided to deploy it to make masks. He planned to use the printer to make a plastic headband that would hold the shield in front of the health care worker's face. "…

“Leeser said the project has been fun, but it's only intended to be short term. He suspects that a company that has machinery to make injected molded plastic parts will being producing them at a much faster rate than the 3D printers can spit them out.


"'It's a faceless war and it's kind of cool that you do have people who have the time right now,' he said.”

Susan Tompor, a columnist for the Detroit Free Press, gives advice on employment, money, and other financial matters.
 

From “FAQ: When will I get my stimulus check? Who gets one? What about tax returns?” Susan Tompor notes that,

“In a key development, the U.S. Treasury Department and the IRS late April 1 announced that Social Security beneficiaries who are not typically required to file tax returns will see payments for the stimulus automatically deposited into their bank accounts. No action or simple form is needed, according to the latest guidance.”

Join Susan Tompor at 12 p.m. Monday for answers to questions about stimulus checks, taxes
 

"Do you have questions about federal stimulus checks, taxes and unemployment? Free Press Personal Finance Columnist Susan Tompor will be on hand to answer your financial questions during the coronavirus crisis.
 

"Susan will start taking your questions at 12 p.m. on Monday, April 6. Leave your question in our comments section or by clicking this link.
 

In this article, “Michiganders to Gov. Whitmer: Fix the damn unemployment website" by Frank Witsil , 4/2/20, has some advice to calm down people who are frustrated in the extreme: 

“Labor officials respond that it's not a matter of indifference, it's the situation. Michigan's unemployment claims ending March 28 topped 311,000, more than doubling from 128,000 the week before.”…

“Many states are handling an unprecedented number of claims, and, in Michigan, many claims are going through without any problems, filers acknowledged. It helps that Michiganders can file online at any time — day or night.


“The problem, however, comes in when a caller encounters a glitch or has a question"…


“Normally, unemployment officials said, glitches and questions can be handled by a call center that has been shut down because of the efforts to keep people from gathering in groups and at home so they don't catch the virus.”

Sunday, March 29, 2020

Yoo-hoo, Mr. President! “That Woman Governor from Michigan” is my Governor and we need all the help she can get!



So what is this I hear about hurt feelings because some governors don’t show enough appreciation for the help the federal government is offering them? Did I also hear that the Vice President was instructed to not return phone calls to mean girls and boys who somehow managed to get themselves elected governors of some very important states but refuse to play by the rules of this particular game? And once the President remembered my Governor's name (Gretchen Whitmer), he couldn't resist making a little joke about her by calling her Gretchen "Half" Whitmer. Get it? That should go over well with the disability community.

Let's get real here. I have two sons with profound intellectual and developmental disabilities who are hunkered down in their group home waiting for a time when it will be safe to venture out without becoming the latest victims of Covid-19. All six residents of the group home have multiple disabilities that put them in a high risk category for “bad outcomes” (including death) if they contract the disease. As aging family members, my husband and I are in a similar risk category and have to curtail visits to see them. We don’t like losing the ability to see them and their caregivers first-hand, but we stay in touch by phone.

Our sons receive good care from the group home staff. But even in relatively good times, the continued availability of that care is precarious due to our chronically underfunded mental health system. Their direct care workers are overworked and underpaid, but nevertheless perform difficult jobs that often go unrecognized for their importance. My sons' need for 24/7 care and supervision is dependent on the group home receiving adequate funding and support, paid for mostly through Medicaid and Social Security benefits.

The group home is not a medical facility, so there are limits to how much medical intervention can be done by staff. We are fortunate, however, to live in the Ann Arbor area with at least two major medical systems and specialists who accept Medicaid. My older son is a “frequent flyer” in the Emergency Room due to a seizure condition that is hard to control. Every two months or so he ends up in the ER for treatment and observation.  Occasionally he is hospitalized for pneumonia or other acute medical problems.

My sons cannot afford to see their medical facilities collapse under the strain of the Covid-19 pandemic. Medical support personnel need personal protection equipment to keep themselves from contracting the virus and passing it on to patients. Patients rely on the availability of ventilators and other medical treatments as we prepare for an onslaught of cases that require hospitalization. This is highly predictable, given what we know about the disease already. I need some reassurance here, too, that a trip to the ER will not result in a death sentence for either of my sons if the virus is inadvertently spread in the hospital. We continue to lack sufficient testing to keep track of the disease and eventually to identify direct care workers who can work safely with people as vulnerable my sons and their friends at their group home.
 

I don’t have time to spend on trying to figure out who said what to whom and I am sure my sons don’t care. Believe me, this is a very scary time for us all and we are relieved to hear that Michigan will be getting at least some of the aid the Governor asked for. My expressions of appreciation will go first to those who deserve it the most: direct service providers for people with severe disabilities, the doctors and nurses who are on the front lines in fighting this pandemic, and all the people who support them in their effort to keep the rest of us alive and well.

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Here is a movie to watch while you are self-isolating: Yoo-hoo, Mrs. Goldberg. It is a documentary about the famous comedian Gertrude Berg who starred in her own TV show in the 1950's and sold Sanka coffee on the side.


Friday, February 21, 2020

Michigan: Radical proposals to change Medicaid services for IDD put our loved one's right to services at risk

This is from One Voice – A Michigan Parent/Family advocacy organization in support of individuals with Intellectual and Developmental Disabilities. 

Proposals from the Michigan Department of Health and Human Services (MDHHS) are not much different than the attempts by the previous administration to shift Medicaid funding away from Community Mental Health agencies to Medicaid Health Plans and to privatize services. Medicaid Health Plans would like to be in control of the Medicaid budget for people with developmental and other disabilities, but they have little experience with providing the social services, residential services, and other specialized programs necessary for the survival of the IDD population. 

Most disturbing to me is the desire to base services on the Supports Intensity Scale (SIS) questionnaire. Years ago, the state DHHS clarified that this assessment tool is not appropriate in all cases“The SIS should be used to enhance and support the person-centered planning process. As with all assessments, the SIS is voluntary and should not be tied to determinations of medical necessity and the authorization of behavioral health services. Supports and services cannot be denied, reduced or discontinued if a consumer and/or guardian refuse to cooperate with the assessment process.” 

For my sons, who are profoundly intellectually and physically disabled, the SIS assessment misses the boat entirely. For one thing, it assumes that the only worthy goal is to provide supports so that everyone with IDD can live in the community just like everyone else who is not disabled. I can assure you that for my sons, "living just like everyone else", is a fantasy. Helping them to have a quality of life worth living entails acknowledging their extensive medical and physical needs that go far beyond what they are likely to ever find in "the community".

When my son Ian was assessed using the SIS at the age of 30, one of the questions asked was what supports are necessary to allow Ian to "date" like a typical 30-year old man. He cannot walk, talk, or do anything without total assistance. He is nevertheless a charming, lovely man, but we will never know what he thinks about "dating" or anything else in any specific way. An answer that indicated that "dating" might not be possible was not allowed. Indulging this fantastical way of thinking does not help Ian. Acknowledging that people with IDD have a wide spectrum of need and allowing for individual differences by providing a full array of services and residential options will help.

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Provided by One Voice –A Michigan Parent/Family advocacy organization in support of individuals with Intellectual and Developmental Disabilities Email us at: onevoicemi@gmail.com Bob Pierce, Chair of One Voice

ACT NOW To save our loved one’s supports and right to services

Radical changes are being proposed at the State level for Medicaid Services for our I/DD family members. Extraordinarily incomplete detailed information has been made available to the public. The announced timeline is to have the changes implemented in 2022! Here is a summary of our understanding and take on the issue. 

 MDHHS is moving toward a model that calls for Specialty Integrated Plans that combine behavioral and physical health plans under one umbrella that appears to most likely place Medicaid under private control.

Terms like “Most things stay the same” and “Ability to pick your plan (including a public-led option if you want)” are in Director Gordon’s public sales pitch for this revolutionary change.

The key to changes is the part about opening up the Mental Health Code. The Code currently says services are based on the Person Centered Plan (PCP). That Section will likely be removed, and services will be based on a Supports Intensity Scale (SIS) questionnaire. Questions can be misleading, and numbers manipulated to limit what services are legally protected. We cannot let the SIS dictate the needs of our loved ones.

Nowhere has anyone publicly detailed what is failing in our existing systems or how to improve these shortcomings. It is our belief that this is simply a plan to eliminate financial risk for the state, reduce support and services for our I/DD family and ultimately privatize Community Mental Health services.

Other states have implemented similar programs. Here are a few samples of press headlines that reflect the “success” of these changes:

North Carolina gets a “F” on how equally it treats mental and physical health issues – North Carolina Health News 1/15/19

Medicaid changes hit mental health services in state; payment cuts cited as providers shut – Arkansas Democrat Gazette 12/9/2019 

We must send a loud and clear message to Governor Gretchen Whitmer - NO Specialty Integrated Plans (SIPs) and NO opening of the Mental Health Code! Slow down this process now!! 

Please contact the Governor now! Time is of the essence. State Representatives, State Senators and your local County Commissioners need to hear our voices.

Governor Gretchen Whitmer
P.O. Box 30013
Lansing, Michigan 48909

517-373-3400
517-335-7858 (Constituent Services)

Governor Whitmer
https://govenorsoffice@mich.gov https://MDHHS-futureofbh@michigan.gov State Senator https://www.senate.michigan.gov/fysbyaddress.html

State Representative
https://www.house.mi.gov/mhrpublic/frmFindaRep.aspx

Washtenaw County Board of Commissioners
https://gisappsecure.ewashtenaw.org/public/BOC/


References:



Press release announcing the plan.
https://www.michigan.gov/som/0,4669,7-192-29942_34762-513879--,00.html

MDHHS 
Director Gordon’s slide presentation 
See also, 

"Families providers ask tough questions on plans to integrate Medicaid mental health" by Jay Greene from Crain's Detroit