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Some People With Disabilities, N.H. Caregivers Report Roadblocks When Registering For COVID Vaccine

A sign says "Vaccine Available," next to other signs pointing to "Vaccines"
Todd Bookman, NHPR
ABLE New Hampshire, which advocates for the rights of people with disabilities, says some people who should be eligible for the vaccine can't access it due to hurdles in the registration process.

Some in New Hampshire’s disability community say the state needs to do more to ensure people with disabilities and their caregivers can get the COVID-19 vaccine.

Under the state’s current distribution plan, vaccines are available to people with at least two medical conditions that put them at serious risk for complications from COVID-19. It’s also available to family caregivers for children under age 16 who meet that criteria.

But in both of those cases, determining vaccine eligibility requires signoff from a medical provider

(Questions about how to register for the COVID-19 vaccine? We can help.)

If the provider has access to the COVID-19 vaccine — for example, if they’re affiliated with a hospital group — the state says they can schedule patients for their shots directly. But if the provider doesn’t have access to the COVID-19 vaccine, they’re responsible for either scheduling the patient’s vaccine appointment through an online portal or through a referral to the New Hampshire Division of Public Health Services. If someone doesn’t have a healthcare provider, the state says they can call 211 to get referred to one nearby.

Lisa Beaudoin, who advocates on behalf of families within New Hampshire’s disability community as executive director of ABLE New Hampshire, says that part of the process has been a major hurdle.

“The lack of clarity and consistency in vaccine guidance, by what ostensibly becomes the gatekeepers of the vaccine, is leaving behind our most vulnerable members of the disability community,” Beaudoin told NHPR’s The Exchange during a Tuesday conversation about vaccine equity. “And that’s been very problematic.”

(Listen: A Conversation About Vaccine Access and Equity on The Exchange

She said some families have struggled to navigate the bureaucratic authorization process and, at times, struggled to get their providers to agree to attest to their eligibility.

“One of the challenges at the front end is that doctors offices were not given adequate lead time to prepare for this verification process that the disability community has to go through in order to get registered,” Beaudoin said.

At the same time, others in New Hampshire’s disability community have said the vaccine process seems to be going smoothly.

“While we acknowledge there were bumps in the early rollout, we have not found that they disproportionately impacted [our] consumers,” Granite State Independent Living CEO Deborah Ritcey wrote in a recent column for the Union Leader, several days after the same paper reported on the concerns raised by ABLE New Hampshire. “We also respect that this is extremely challenging with many moving parts.”

“We cannot discount the experience of others,” Ritcey added, “but it is safe to say that people with disabilities are not a monolith and experiences can vary.”

In recent weeks, ABLE New Hampshire has called on Gov. Chris Sununu to issue clearer guidance on who qualifies for the vaccine — as a paid or unpaid caregiver, or as someone with a disability. The state’s current plan also makes vaccines available to residents and staff at facilities for people with intellectual and developmental disabilities, but ABLE New Hampshire has asked the state to clarify the registration process “if one is an adult person with a developmental disability who would otherwise be in a residential/facility setting” if not for New Hampshire’s largely community-based support system.

When asked about the issue at a recent press conference, Sununu said he was aware of the concerns and working to address them, but also disputed ABLE New Hampshire’s claims.

“To be honest, I think there was some misinformation as part of that,” Sununu said. “But that's OK, we have a good relationship with them. We definitely appreciate the frustration of not just that population, but any population in New Hampshire that has maybe had trouble scheduling.”

Department of Health and Human Services Commissioner Lori Shibinette, at the same press conference, said the state has worked to get more consistent guidance out about the verification process to providers, including a notice to all state licensees that they must comply with the vaccine certification process. But she also emphasized that the state intentionally gave providers flexibility to determine whether a patient or caregiver is medically eligible for the vaccine.

“There will always be a dispute if someone is in the gray area of whether they're medically vulnerable or not,” Shibinette said. “And that could be part of the complaints that we're getting is that while the patient or the family feels like they're medically vulnerable, the physician doesn't agree.”

(Read more: Your Guide to Coronavirus Vaccines in New Hampshire)

Beaudoin, with ABLE New Hampshire, said Tuesday that she was disappointed with the state’s framing of the issue and said more needs to be done to ensure consistent standards in the registration process.

“The crux of the problem is that we are in a health care crisis, everyone is working as hard as they can, and the COVID operations folks have not been responsive to installing solutions to the identified problems,” Beaudoin said.

State health department Communications Director Jake Leon said in an email Tuesday that the state continues to work closely with agencies serving people with disabilities to resolve scheduling issues.

“We empathize with any member of the public, including members of the disability community, who had difficulties scheduling their vaccine appointment through” the online system, he said.

To-date, Leon said the state has provided scheduling assistance for more than 10,000 New Hampshire residents.

Casey McDermott is a senior news editor at New Hampshire Public Radio. Throughout her time as an NHPR reporter and editor, she has worked with colleagues across the newsroom to deepen the station’s accountability coverage, data journalism and audience engagement across platforms.

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