Michigan: The great St. Patrick’s Day weekend ice storm of 1997

The recent extreme weather event in Texas where the entire electric grid almost shut down, reminded me of a similar (but much less threatening) ice storm that occurred in Michigan in 1997. I thought about subtitling this “Little House on the Prairie with Wheelchairs". I’m sure there were many Texans who went through a similar experience, trying to survive with disabled or medically fragile family members who did not stop needing care and support just because everything that depended on electricity stopped working.

This is how the National Weather Service described the Ice Storm of 1997:

“ …From Detroit and Ann Arbor south to the state-line, the freezing rain changed to rain, but not before heavy ice accumulations occurred. Total precipitation amounts ranged from 1.5 to nearly 2.5 inches from Detroit and Ann Arbor south to the Ohio state-line. … In the Detroit Metropolitan area, the ice storm resulted in power outages to over 425,000 homes and businesses; the 3rd largest outage in history, and the worst ever for an ice storm. Several thousand residents were without power for as long as 4 days. In addition to powerlines, falling trees damaged dozens of cars and houses throughout the area. Most were closed, and there were numerous auto accidents.” 

Here is how I remember it…

It began last Thursday night [3/13/1997] with hard rain falling into below freezing temperatures at ground level. By morning we had had 1.6 inches of rain with a 1/2 inch coating of ice on every tree limb, pine needle, and blade of grass in Southeastern Michigan. It was the worst ice storm since records have been kept here for more than 100 years.

The roads had icy patches, but the main problem was trees and tree limbs that toppled onto roadways and power lines, confounding morning commuters and cutting power to some 12,000 homes. Needless to say, schools were closed. Later, something like 425,000 homes and businesses would be affected.

Our lights were dim all morning and the microwave did not work right.

Late in the morning, the temperature dropped and a wind started to blow, knocking out more power lines all day. Our power went out completely a little after noon.

At our house, when the electricity goes, so does the heat and running water. We set up camp in the evening by the fireplace and John got our small gas-powered generator out to run the sump pump, refrigerator, and food processor. We had McDonald’s stuff for dinner and I studied for my midterms by oil lamplight.

[The boys, Danny and Ian, needed their food ground to a consistency where they would not choke on it - swallowing problems often accompany severe cerebral palsy - hence the importance of powering up the food processor. And for those of you who do not have a well and septic system for water and sewage, the sump collects clean water that would otherwise flood the basement. The sump pump pumps it outside where it drains off with the rest of the rain water. If the sump pump stops working, the basement floods. The one benefit of this is that we had plenty of water to flush toilets that we hauled up from the basement sump in buckets.]

It was 16 degrees outside Saturday morning and about 40 degrees in the house. I really flubbed my midterm, partly from not studying and partly because I was suffering from borderline hypothermia.

The rest of Saturday was cold and miserable. We had a constant fire and heated water in old camping pots.

We ate McDonald’s stuff again and snuggled and huddled around the fire singing songs. Jennie [who was ten years old] sang songs I have not heard her sing for some time. And of course we compared our lives to that of the Little House on the Prairie family. [Read “The Long Winter” by Laura Ingals Wilder to get the feel for wind and snow drifting through cracks in the house and the long trek to bring wheat into the starving town that had been cut off from its food supply by the relentless winter storms.]

The most exhausting part of the whole ordeal was being cold much of the time. I’m sure the pioneers could eat so much because they burned up so many calories trying to stay warm. And of course there were the chores we had to do to survive - stoking the wood pile, feeding the fire, washing dishes in heated water, lugging up buckets of water from the sump to flush the toilets, and keeping Danny and Ian warm.

[I don’t remember precisely, how we kept Danny and Ian fed, bathed, and warm, other than it was superimposed on the added chores of running a house without electricity. I do remember that they were somewhat excited and stimulated by living in front of the fireplace most of the day and going to bed with blankets and sleeping bags mounded on top of them.]

The temperature Sunday morning was 10 degrees. It really did not get above freezing until Monday, when it went into the 50’s. Jennie's school was still closed Monday, but Danny and Ian’s school was open. Jennie and I hung out at the mall and the library. We had a very good breakfast at Big Boy.

When we came home for short intervals, the smell of woodsmoke was overpowering and the chill disheartening. Just when it seemed that we might have to spend another night without electricity, the lights went on and transformed us back into our civilized selves.

It’s appalling how almost worthless our house is without electric power. And we are so wasteful, but so happy to be among the lighted.

[Unlike the weather event in Texas, Ann Arbor was not totally shut down and many families decamped to motels for the duration. This was not an option for us - imagine a family of five with two big wheelchairs, a dog, and two cats holed up in a motel room for four days. We couldn't imagine it either.]

COVID-19 and people with Down syndrome

According to an article in USA Today, “COVID-19 is especially deadly for adults with Down syndrome, but many can't get a vaccine shot", by Marc Ramirez, 3/8/21, families and advocacy groups for people with Down syndrome are pushing local, state, and federal agencies to prioritize people with Down syndrome for Covid-19 vaccinations.

Increased vulnerability

“Recent studies indicate that adults with Down syndrome, specifically those 40 and older, are three to 10 times as likely to die from COVID-19 than the general population. The findings confirmed what many had already suspected – that those with the genetic disorder, already prone to respiratory issues, heart conditions and other risk factors for coronavirus, were more susceptible to the virus’s harmful effects. 

“A 40-year-old with Down syndrome faces the same COVID-19 risk as a typical 70-year-old, according to the most recent study led by researchers at Emory University in Atlanta, part of an international collaboration. The results, researchers and advocates said, indicate the need to prioritize vaccination for individuals with Down syndrome, especially adults.

“While the growing body of research helped spur the Centers for Disease Control and Prevention to add Down syndrome to its list of high-risk groups for priority vaccination in December, advocates said many states still aren’t sufficiently emphasizing the population.”

The status of people with Down syndrome for Covid vaccination varies from state to state

“According to the Global Down Syndrome Foundation, at least 29 states now place those withDown syndrome in the CDC’s recommended high priority category for vaccination, based on the foundation’s interpretation of state guidelines.

“While the landscape continues to change as advocacy efforts ramp up nationwide, individuals with Down syndrome remain in lower-than-recommended tiers in eight states, according to the association’s last tally. As for the remaining states, the group said guidelines did not definitively cite priority status for those with Down syndrome.”

Risk Factors

“The primary COVID-19 risk factors faced by individuals with Down syndrome are immunodeficiency issues and conditions associated with premature aging, said Anke Huels, chief author of the Emory University study and assistant professor of epidemiology and environmental health.”
….

“Moya Peterson, director of the Adults with Down Syndrome Specialty Clinic at University of Kansas Medical Center, said it was clear that “if they got COVID, they got sick, very fast. We knew this was going to be a problem.

“The population contracts pneumonia easily, she said, and is prone to weight issues, heart issues and autoimmune disorders.

“The list also includes obstructive sleep apnea, which some studies have linked to a higher risk of COVID-19 and which can be experienced by between 40 to 70% of individuals with Down syndrome, depending on age.”

COVID restrictions have also caused problems - “Caregivers said that in addition to anxiety and depression, people with Down syndrome have suffered physical and intellectual setbacks as a result of COVID-19 lockdowns.”

Michigan Expands access to COVID vaccines

Tuesday, March 9, 2021

From the Michigan Department of Health and Human Services:

Following the announcement of a ramped-up effort by the Biden Administration to produce enough doses to vaccinate 300 million Americans by the end of May, the Michigan Department of Health and Human Services (MDHHS) announced that it is expanding vaccination eligibility beginning 3/8/21:

“MDHHS is moving forward with the vaccination of Michiganders age 50 and older with medical conditions or disabilities and caregiver family members and guardians who care for children with special health care needs. Beginning Monday, March 22, vaccine eligibility will again expand to include all Michiganders 50 and older. To date, more than 40% of Michiganders age 65 and older have been vaccinated.” 

"All vaccine providers may begin vaccinating the two new priority groups of 50 and older with medical conditions or disabilities and caregiver family members and guardians who care for children with special health care needs by Monday. Those eligible to receive a vaccine should:

• Check the website of the local health department or hospital to find out their process or for registration forms; or
• Check additional vaccination sites, such as local pharmacies like Meijer, Rite Aid or Cardinal Health (U.P. residents); or
• Residents who don’t have access to the internet or who need assistance navigating the vaccine scheduling process can call the COVID-19 Hotline at 888-535-6136 (press 1), Monday through Friday from 8 a.m. to 5 p.m., Saturday and Sunday, 8 a.m. to 1 p.m. or can call 2-1-1.”

All this depends on vaccine availability that is increasing but has not yet kept up with demand.

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People living in long-term care facilities, including nursing homes and licensed group homes, along with staff, have been a priority in Michigan. Washtenaw County is also vaccinating people with severe disabilities, along with their caregivers and family members, who live in their own or their family’s home. 

For people with developmental disabilities who are eligible for Medicaid-funded Home and Community-Based Services (HCBS), their eligibility is based on their need for an institutional level of care (meaning a nursing home or an Intermediate Care Facility for Individuals with Intellectual Disabilities - ICF/IID), but they choose to receive those services at home. 

In other counties where vaccinations have not been made available generally for people with intellectual and developmental disabilities, I think there is a good argument for asserting rights under the Americans with Disabilities Act that prohibit discrimination against people with disabilities - in this case, people with the same eligibility for institutional services who choose to live in their own or their family’s home. Their risks of contracting COVID and the probability of severe complications are likely as high as for those who live in nursing homes and have been a priority for vaccination. Why should they not be considered a priority because they live at home and not in a long-term care facility?

January 6th, 2021

In case you missed it the first time - House Impeachment Managers' Video Compilation of January 6 Attack on the U.S. Capitol

 

Michigan vaccination priorities include people with IDD living with their families or in their own homes

Michigan has expanded eligibility for vaccination to all people over 65 years old, as it continues to vaccinate people in the highest risk categories. This includes people with intellectual and developmental disabilities (IDD) living at home with their families or in their own homes, as well as residents of long-term care facilities and their caregivers.

My two sons live in a licensed group home that is a long-term care facility under the vaccination guidelines. All six residents of the group home received their second shots more than a week ago. None have experienced significant side effects. They are all fine.

When people with IDD live at home with their families or in their own home, they usually receive services through the Community Mental Health (CMH) system, funded through Medicaid waivers. Medicaid waivers allow CMH to provide for their care at home as an alternative to an institutional setting such as an Intermediate Care Facility for people with IDD or a skilled nursing facility. People with IDD, regardless of where they live, are more vulnerable than the general population to bad outcomes from the virus and are among those given priority for vaccination by the state and county health departments.

In Washtenaw County, many families were notified to sign up for vaccinations for their disabled family members, unpaid family caregivers, and paid CMH caregivers. They were asked to complete a survey for the county department of health and then to wait for more information about when and where to be vaccinated. Rather than being given the option of in-home vaccination, some were informed of large vaccination centers, where they would have to bring their family member, increasing the risk of exposure to the virus and having to deal with problems such as their family member being unable to wear a mask or to comply with social distancing rules. Part of the problem was that the survey did not ask for or take into account the special accommodations needed by people with IDD in setting up vaccinations.

Just Us Club, an activity program for adults with IDD in Ann Arbor that my sons attended in non-COVID days, maintains contact with families and sent out emails to help them overcome delays and barriers to vaccination.

I suggested that families use “magic words” when contacting the county health department to help them flag their request involving people already prioritized for receiving the vaccines:

“It sounds like Just Us Club families are having difficulty getting the county to respond and schedule a time to give vaccinations. I looked at the survey and, as usual, it is mostly about organizations and healthcare without any special consideration of the minority population of people with DD. They may just be overwhelmed, but it might be useful for people to use 'magic words' where they can fit them into an answer on the survey or in correspondence with the county. Among those magic words are 'Developmental Disabilities' or 'intellectual and developmental disabilities' or better yet, 'severe Developmental Disabilities' or 'severe IDD', 'Medicaid funded Home and Community Based Services', 'Home healthcare for a person with DD', 'Caregiver of person with severe DD, '…and related severe medical conditions'…anything to get their attention that we are talking about severe disabilities with related medical fragility and health conditions putting even younger people with DD at increased risk from COVID.”

Another parent suggested, “… I'll add to it that if your loved one has any physical ailments that might put them at greater risk (asthma, COPD, diabetes, etc.), it might help to spell it out in the email. If you include your phone number in your email, you may get a call from the County nurse to ask additional questions and potentially schedule your home visit. They really are swamped and using the 'magic words' can help get your loved one appropriately prioritized.”

Another parent came up with a sample email to send:

Hello,
My adult child, ______, receives Medicaid funded Home and Community Based Services through Community Mental Health. He /she has significant developmental disabilities and other underlying medical issues. He/she cannot tolerate wearing a mask for any length of time. I/we provide full time care for _______ in our home. My child has been sheltering at home all these months because he/she is medically fragile and thus more vulnerable to the Covid 19 virus. I am wondering what the procedure would be to schedule vaccination for my child in the home or at a drive through location, rather than at a large vaccination site.
Thanks so much,_______________

Another parent added that her son’s lack of expressed language and his seizure disorder qualified him as high risk and that because he couldn’t effectively communicate how he was feeling or whether he was feeling pain, was also helpful in identifying him as high risk.

JUC heard back from a number of families who were delighted to have a visiting nurse scheduled to come to their home to administer the vaccines, once their need for special accommodations was heard. 

I hope this helps with the frustrations of trying to get vaccinations for people with complex disabilities and needs.

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Information from the AARP on "The COVID-19 Vaccine Distribution Plan in Michigan" by Catherine Maddux , February 03, 2021

 

Proposals to raise the minimum wage for all workers may leave some workers with disabilities struggling with unintended consequences

The federal Raise the Wage Act was introduced in the last Congress in an effort to eventually raise the minimum wage to $15 per hour for all workers, including those with even the most severe disabilities. This has apparently been reintroduced as H.R. 603 and S. 53 and included in The American Rescue Plan. Besides raising the minimum wage for all workers, It would eliminate special wage certificates for people with severe disabilities. These 14(c) special wage certificates are authorized by the Fair Labor Standards Act and allow work centers (formerly called “sheltered workshops”) to pay workers less than minimum wage when their level of productivity prevents them from being competitive in the general workforce. These specialized work centers provide opportunities and special accommodations for people who would otherwise be unable to compete for jobs.

Elimination of the 14(c) wage certificates would ultimately lead to the closure of work centers that thousands of workers with intellectual and developmental disabilities (IDD) and their families rely on for meaningful employment and other benefits of a specialized work environment that accommodates the needs of people with the most severe disabilities. Although this has often been framed as a civil rights issue, no one is compelled to accept employment at a work center and the law provides protections for workers and requirements for employees designed to prevent exploitation. [See Fact Sheet on The Employment of Workers with Disabilities at Subminimum Wages]

In a recent news update, ACCSES, an organization representing providers of disability services, provides details of the Raise the Wage Act  and follows these with comments on the parts of the legislation affecting workers with disabilities:

“Before moving on to other news, we want to pause for a moment and talk about 14(c). At ACCSES, we see 14(c) as part of a continuum of paid work opportunities that increase options for people with the most significant disabilities. Neither this bill, nor others introduced in the past, will lead directly to more employment for individuals working under a certificate. It is not a binary choice. Rather, for many, it will eliminate an option that is highly valued and regularly coupled with other services, including competitive employment, which often provides for only a few hours of work per week.

“A great deal of energy is devoted to trying to eliminate 14(c). Imagine if all of that collective attention were repurposed to reducing the need for 14(c) by focusing instead on closing the vast competitive employment gap for individuals with disabilities, expanding options, educating commercial and nonprofit employers generally of the tremendous workforce available to them, finding legislative solutions that encourage more employers to hire people with the most significant disabilities, increasing funding for supported employment and customized employment, increasing funding for social enterprise models and apprenticeship programs, recognizing disability service providers as the foundation of the disability service system (including employment) rather than trying to exclude them or dismiss their incredible depth of knowledge and experience, and most importantly, honoring the legitimate choice of individuals to have the job they want. This could lead to more positive results than simply eliminating 14(c) and forcing people into unpaid work, day support programs (which is a perfectly fine choice for individuals and already available as an option) or leaving individuals with few options at all other than being at home. This pandemic has shown many of us how difficult it is to be isolated at home away from our communities for long periods of time. Moreover, it has underscored the trauma of job loss, which should not be overlooked.

“At no time has the federal government conducted an actual study as to what has happened to individuals in states where 14(c) has been eliminated as a work payment choice. A true, unbiased study should be undertaken as a first step before any movement to eliminate 14(c) or limit its use, as it will highlight where attention for positive change should be focused. There are numerous ancillary concerns that must be taken into consideration – social security asset limits, transportation, the unemployment rate generally as well as specifically in the most rural parts of our country, the movement toward robotic solutions for businesses, jobs leaving the U.S., and the economic impact on families of eliminating an option that is providing a source of consistency and community, etc. Taking a paid work opportunity from people who take pride in their work will not by itself lead to more paid employment options or opportunities. This is a complex issue, and it will take getting everyone around the table to sit down with open minds to come up with good ideas to increase opportunities, not to just take away an option. A solution that will deny some individuals the dignity of work or that denigrates their jobs is the ultimate demoralizer. This is what keeps us up at night."

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More on specialized work centers, sub minimum wages, and supported employment from The DD News Blog.

Beyond free speech: Anti-vaccine protesters temporarily shut down vaccine site in Los Angeles

From The Washington Post, “Anti-vaccine protesters temporarily shut down major coronavirus vaccine site at Dodger Stadium in Los Angeles” by Meryl Kornfield, 1/30/21:

“One of the largest vaccination sites in the country briefly shut down Saturday afternoon because maskless, anti-vaccine protesters blocked the entrance, officials said.

“For nearly an hour, thousands of motorists in line to get a coronavirus vaccine shot at Dodger Stadium were stalled as about 50 people demonstrating against immunization efforts caused officials to temporarily close the site’s gates, Los Angeles Fire Department spokesman David Ortiz told The Washington Post. The protest had no impact on the number of shots given Saturday at the site, which can vaccinate 8,000 people a day, Ortiz said.”

The temporary shutdown complicated the already stressful process of getting vaccinated with vaccines in limited supply and in high demand.

According to The L.A. Times, “Confirmed coronavirus cases in California have surpassed 3.2 million. More than 40,000 people — one in every 1,000 Californians — have died from complications of COVID-19. The Los Angeles County Department of Public Health’s official death toll stands at 16,647 after 316 fatalities were confirmed Saturday [emphasis added], along with more than 6,900 new cases.” Variants of the coronavirus that make the virus more transmissible continue to spread in L.A. County.

The protests were organized on social media and "...advised participants to 'please refrain from wearing Trump/MAGA attire as we want our statement to resonate with the sheeple. No flags but informational signs only.'"  The protest, however, was not only about the COVID vaccine, but had the purposeful effect of spreading disinformation about a wide-range of conspiracies - “This is a sharing information protest and march against everything COVID, Vaccine, PCR Tests, Lockdowns, Masks, Fauci, Gates, Newsom, China, digital tracking, etc.”

Meanwhile, “Following demonstrations by anti-mask groups at shopping malls, grocery stores and homeless encampments, the Los Angeles City Council earlier this month bolstered restrictions and subjected some violators to financial penalties.”

I trust the will of the "sheeple", more than I trust the politically motivated exploitation of people with unfounded fear and disinformation.

If you don’t want to wear a mask, don’t wear one, but then don’t go into places such as private businesses that require masks to protect their customers and employees. If you don’t want a vaccine, don’t get one, but don’t get in the way of people who want to get vaccinated to prevent themselves from getting sick or worse from COVID and to prevent the spread of the virus that has caused the worst pandemic in 100 years.  

The Barker boys, Danny and Ian, live in a group home with four other severely and profoundly disabled residents, all of whom are medically vulnerable to the worst effects of this virus. They all received their second Pfizer vaccine last week without adverse side effects. It is troubling, however, that many of the staff chose not to get vaccinated because of fears that it might hurt them in some way more than the virus. The demand for vaccines is generally high and eventually I expect that many of the staff will change their minds.