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Advocates say at-risk people receiving at-home care need vaccines, too

Those on home waiver programs would otherwise be living in nursing homes, where they would have access to vaccines.

An illustration of a vaccine vial for COVID-19. (STOCK PHOTO)

Some of the most vulnerable people in Alabama, at greatest risk to serious illness and death from COVID-19, don’t yet have access to the life-saving vaccines, and that has the families and advocates asking why.

The Elderly and Disabled Waiver Program — operated by the Alabama Department of Senior Services and funded by the U.S. Health and Human Services — allows those who might otherwise require nursing home care to live in their own communities and receive care at home. 

Victoria DeLano of Hoover is the mother of a 15-year old son who has for about a decade received aid through the Elderly and Disabled Waiver program because of serious medical conditions. 

About five years ago, the state program shifted from paying for nurses to provide at-home care through the program to paying families directly, who could then either hire someone to provide the care or care for their loved ones themselves, DeLano said. 

“It’s a really well-done program, really serving those Alabamians who have extreme medical complications in our state,” DeLano said, but she’s concerned that for those who receive the aid, who are medically vulnerable and at risk of serious complications and death from COVID-19, aren’t being prioritized for vaccinations. 

The Alabama Disabilities Advocacy Program, Alabama Arise and Disability Leadership Coalition of Alabama in a Feb. 25 letter to Gov. Kay Ivey urged her help in getting those vulnerable people vaccinated. 

The letter states that four state agencies — Alabama Medicaid, Alabama Department of Mental Health, Alabama Department of Senior Services and the Alabama Department of Rehabilitation Services — had contacted State Health Officer Dr. Scott Harris to express concern over ADPH’s lack of planning to get Medicaid long term care patients who are served through home and community-based waivers vaccinated. 

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“As individuals who qualify for nursing-home care but receive their care at home, waiver patients are equivalent to nursing home in their vulnerability to COVID-19, as well as their legal status,” the letter reads. “ADPH has acknowledged that these patients belong in the 1a vaccination priority level, but they have not been granted access to vaccinations.” 

Those four state agencies have offered to assist ADPH with outreach and logistics to help get those populations vaccinated, but as of the date of the letter, the agencies were still awaiting a response from ADPH. 

“The longer we wait to vaccinate the top priority populations, the more hospitalizations and deaths Alabama will experience on our way to generalized immunity,” the letter continues. 

In a response to APR’s questions about the matter, ADPH spokesman Ryan Easterling said Medicaid waiver providers are responsible for accessing vaccines for persons who are served by their program.

“Prior to the approval of Johnson and Johnson, there was not a vaccine product that could be readily transported to a home due to cold chain and other requirements to keep the vaccine viable,” Easterling said. “While there is now a vaccine that could be taken into the home, adequate product is not readily available at this time.”

Easterling said the COVID 19 allocation plan should be followed to determine which phase a homebound person is in regarding vaccine “as persons who are homebound are not in the Phase 1a. Depending on their age, persons may be in Phase 1b.” 

“While persons eligible for services under a homebound waiver could be in a Long Term Care Facility (LTC) if not covered under the home bound waiver, what makes the person in LTC eligible is that they are also in a congregate living setting and many of them are elderly,” Easterling continued. “Once there is more vaccine product that can be used in the home setting, the Alabama Department of Public Health (ADPH) plans to vaccinate its own home health patients and can share its policy, related to in home vaccination,  with other entities as a sample policy.”

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DeLano said ADPH’s response makes clear the department doesn’t understand that people on the waiver program aren’t all homebound and that there is no home health agency involved in her son’s care. 

“No wonder they are dismissing us. They don’t even have basic understanding of the program and who we are,” DeLano said. 

The family’s social worker came to DeLano’s home recently and said many of her clients are at tremendous risk because of the constant flow of care providers who are coming into and out of their homes. 

“She said many of them could get into a car and go to a drive-thru vaccination site, but the state won’t make them eligible to do so,” DeLano said. 

The point of such self-directed care programs is to keep family members living in their communities as independently as possible, people who would otherwise live in nursing homes, DeLano said.  

“Without the vaccine, they can’t go into the community safely, they can’t access in person healthcare and necessary therapies, they can’t access in person school, and they still require the nursing home level medical care provided by others within their home, putting them at tremendous risk,” she said.

James Tucker, director of Alabama Disabilities Advocacy Program, told APR by phone Thursday that he’s troubled by ADPH’s response. 

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“I have a lot of respect for the people at ADPH and the job that they’re trying to do, but I think they’ve missed this issue,” Tucker said. 

Speaking to ADPH’s response regarding the cold chain requirements for the first two vaccines on the market, which the department explained would not allow home delivery of vaccines, Tucker said the department was able to find a way to get those vaccines to nursing homes to be administered. 

“And certainly those individuals deserve a high priority,” Tucker said. “The challenge here is that people who get waiver services would be in a facility like a nursing home, but for the delivery of the waiver.”

Tucker said ADPH is treating “like persons differently” and said while ADPH has figured out ways to get vaccines to some, but that there hasn’t been the same effort to prioritize the approximately 17,000 people on all of the state’s waiver programs. 

The CDC has stated that people with a wide range of intellectual and developmental disabilities are at a far higher risk of fatality from COVID-19, Tucker said, adding that in Alabama there are approximately 5,000 people who receive waivers because of intellectual disabilities. 

“We have a very high risk group included as a substantial portion of the Alabama waiver population,” Tucker said, noting as well that California, Delaware and Alaska have managed to vaccinate persons on waiver programs in those states. 

“I recognize that, clearly, if you don’t have enough vaccine to go around, inherently you get these hard questions about who should be prioritized,” Tucker said. “But but my view is that if you look at 5 million Alabamians, it’s a real disappointment that we can’t figure out how to get vaccine to 17,000 people who the state has identified as being at risk of institutionalization, but for services, the state delivers to those people.” 

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Eddie Burkhalter is a reporter at the Alabama Political Reporter. You can email him at [email protected] or reach him via Twitter.

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