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Advocacy, Health, Political

Vaccines + Disabilities + MN = Not Eligible

Yesterday I got out of the house for the first time in months except for x-rays and seating appointments that I had at Gillette Lifetime Clinic. What did I do on my exciting day out? Went to a car (actually mostly accessible van) rally for Vaccinating the Vulnerable in Minnesota.

You might be thinking, surely, you Justin with a rare condition (kernicterus), deep brain stimulation surgeries, cerebral palsy with low trunk control making coughing difficult, having multiple caregiver staff coming to your home, etc… etc… have been vaccinated or at least are eligible for a vaccine soon. No. I haven’t received and not eligible until May or June according to the latest announcement from Governor Walz.

back of teenage Justin in wheelchair with back of mom walking down Gillette Children's hallway
Justin and his mom leaving Gillette Children Specialty after Deep Brain Stimulation surgery in 2014

Why are my parents and I disappointed and worried?

Gillette Children’s just sent a letter to Governor Walz and our Health Commissioner Malcolm urging them to include people with disabilities as a Priority 1A 4th tier right now or include immediately in 1B as is happening in other states. Using their criteria, I fall into 4 of these categories which put me at high risk not just for COVID but ending up in a more segregated setting. Those of us, because of Olmstead who are living in home and community based settings, deserve equitable protection. In the Vaccine Prioritization: A Letter from Gillette to Governor Walz and Commissioner Malcom | Gillette Children’s Specialty Healthcare, Barbara Joers, Gillette President and CEO states:

People 16-64 years of age who have an underlying health condition or disability which increases their risk of severe COVID-19 and caregivers of people of any age who have an underlying health condition or disability which increases their risk of severe COVID-19.

We suggest that an underlying health condition or disability that should be considered prioritized for a vaccine includes:

    • any health condition or disability requiring a person to maintain caregivers in their household
    • any health condition or disability which prevents mask wearing and proper social distancing and hand hygiene
    • truncal muscle weakness or spasticity inhibiting chest excursion and ability to cough
    • immunodeficiency
    • lung disease or pulmonary disease
    • cardiac disease
    • renal disease
    • neurological and neurologic and neurodevelopment conditions

People ages 16-64 with disabilities and underlying health conditions at higher risk of COVID-19 who do not live in an institutional or other licensed or segregated setting were not prioritized in 1A, even though under Minnesota’s Olmstead Plan we are working as a state to ensure people with disabilities are living, learning, working, and enjoying life in the most integrated setting possible. We believe individuals, ages 16-64 who live independently should be prioritized for vaccines, as they are in many other states, to ensure equitable protection for this medically vulnerable population.

I am grateful that my dad just received his first vaccine as one of my caregivers yesterday and the rest of my in-home support staff will get their first vaccines by the end of this week. But, the person they’ve been trying to protect this past year, is me. They are still going to be feeding me, giving me drinks, bathing, transferring me to my toilet chair, giving me medications, etc… etc… None of these things can be done from safe distances. My staff are still bringing their germs from the schools they work at, the places they live.

I know this is hard. I know there are limited amounts of vaccine. I also know that if I’m one of the people who get sick, that it gets complicated really fast. Listen to Gillette Children’s & Lifetime Specialty Care and move me and others with disabilities receiving home care services up in the priority list. Make your voices heard!

Want to learn more?

Vaccine Prioritization: A Letter from Gillette to Governor Walz and Commissioner Malcom | Gillette Children’s Specialty Healthcare

Health advocates warn Minnesota’s COVID-19 vaccine priorities ignore high-risk individuals – StarTribune.com

Minnesotans Argue State Not Appropriately Prioritizing Vaccines For Those With Underlying Conditions – WCCO | CBS Minnesota (cbslocal.com)

‌For‌ ‌those‌ ‌with‌ ‌underlying‌ ‌health‌ ‌conditions,‌ ‌getting‌ ‌a‌ ‌COVID vaccine‌ ‌remains‌ ‌elusive | MPR News

Vaccinate the Vulnerable Minnesota on Facebook group or Twitter feed below.

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