Study from Syracuse University shows higher death rates from COVID-19 for people with IDD; calls for more accurate reporting in cause of deaths

Potential Impacts of COVID-19 on Individuals with Intellectual and Developmental Disability: A Call for Accurate Cause of Death Reporting
Dalton Stevens & Scott D. Landes

Research Brief, Issue Number 20, April 14, 2020
 
From the Lerner Center for Public Health Promotion at Syracuse University

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KEY FINDINGS
• COVID-19 deaths will likely be more prevalent among those with intellectual and developmental disability (IDD).
• Death rates from pneumonia are between 2.2 times and 5.8 times higher among individuals with an IDD than among those without IDD, giving us a clear warning of the severity of COVID-19 among people with IDD.
• Underestimation of COVID-19 deaths is potentially more severe for those with IDD.
• Cause of death certifiers must be attentive to accurately recording IDD on the death certificate.
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In this recent study from Syracuse University, researchers report that people with Intellectual and Developmental Disabilities (IDD) in New York State who have confirmed cases of COVID-19, have a death rate of 9.5% compared to a death rate of 4.4% for the general population:

“…Out of 140,000 people with IDD who receive formal disability services in New York State, 1,100 have confirmed Covid—19 and 105 have died.”

“…Given that the population of adults with IDD is more likely to die from pneumonia than the general population, and the development of pneumonia is a characteristic of severe COVID-19 cases, the higher case fatality rate is not surprising. However, it is uncertain how much this disparity will increase as deaths continue to accumulate. “

An analysis of the death rate from pneumonia in 2017, before COVID-19 was present in the population, shows the pneumonia death rate in people without IDD was 1.8%. For people with IDD, the death rate ranged from 3.9 to 10.2% depending on the diagnosis, with Down syndrome having the highest rate.

Why are the fatality rates for COVID-19 higher in people with IDD?

“It is not yet possible to determine the exact causal mechanism behind the higher COVID-19 case fatality rates we are now seeing among the population with IDD. The CDC suggests that people with some specific impairments (mobility, communication, cognition) are more vulnerable to COVID-19. Some disability-advocates and parents of children with IDD suggest that the higher case fatality rates may be, at least partially, due to the slow pace at which the disability service structure has responded to the pandemic.” …”for individuals with IDD to survive this pandemic, as well as any potential future outbreaks, it will be necessary to ensure that the IDD service system is better prepared to adjust rapidly to the challenges of providing care in the midst of severe health crises.”

A complication in accurately assessing death rates for people with IDD from COVID-19 is that the cause of death is often attributed to the disability rather than the virus:

“On close to half (48%) of the death certificates of people with IDD, certifiers inaccurately identify the individual’s disability as their underlying cause of death.3 If this practice continues during the COVID-19 pandemic, we will likely never be able to determine the actual COVID-19 death rate for individuals with IDD. Given low rates of testing and misclassifications of COVID-19 death early on, mortality rates from COVID-19 will be underestimated for the entire population, and underestimation is likely to be more severe among individuals with IDD.”

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See the Research Brief for details and references that appear within the report.
 
"The mission of the Lerner Center for Public Health Promotion at Syracuse University is to improve population health through applied research and evaluation, education, engaged service, and advocating for evidence-based policy and practice change."

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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.

Covid-19 music video

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

From:

Pub Choir

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

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 

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.

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.”

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.