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
2 comments:
Do you have some kind of documentation from the state stating that people with DD living at home and their unpaid caregivers can now get the vaccine? I called the county health department where I live and they told me they were not doing this. Thank you.
I do not have documentation from the state, but if a person with a developmental disability is living at home and receiving services funded by Medicaid through the state's Medicaid Waiver, they are eligible because they need an institutional level of care but have waived that in favor of care at home. That should put them in the same category with people who are in nursing homes or group homes. Maybe you need to talk to someone else higher up in the health department to get a better answer. In Washtenaw County they have been referring people to a visiting nurses agency that can send someone to the person's home to give vaccinations. There are a lot of reasons that people with DD need special accommodations to be vaccinated safely. If I see anything from the state that would help, I'll put it in on my blog.
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