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.
