Alex’s father, Jim Bode, and her personal care assistant, Rexhina Balliu, help Alex settle into heir wheelchair for a haircut at Studio Bella in North Haven. “I want to be vaccinated so much because I need a job so I can do things, so I can get back to live,” Alex said. Yehyun Kim / ctmirror.org
Lisa DiStasio, hair stylist at Studio Bella, asks Alex how she wants her hair  done. Yehyun Kim / ctmirror.org
Lisa DiStasio, hair stylist at Studio Bella, asks Alex how she wants her hair  done. Yehyun Kim / ctmirror.org

Every night, Mary Caruso sanitizes her house with bleach, to clean up after the four home care workers who were in her North Branford home earlier that day.

Caruso’s children, Sam, 34, and Alex, 30, were born with Friedreichs Ataxia, a genetic disorder that causes progressive nerve damage. The personal care attendants help them eat, shower and get around the house. Even though most of the personal care attendants who work with Sam and Alex have been vaccinated, Caruso still bleaches light switches, faucets and handles on the washing machine and dish washer every night, to keep everyone safe.

“Sam and Al have a lot of close contact with these people. They have to put pills in their mouth, they help them brush their teeth,” Caruso said, wondering aloud “If you’re going to allow vaccinations for the people that care for people in their homes, why wouldn’t you protect the people in the homes also, and vaccinate them?”

The question is especially timely this week. Gov. Ned Lamont announced Monday that he is shifting the state’s COVID-19 vaccine rollout program to be strictly based on age for everyone other than school employees and child care workers, leaving many younger people with chronic medical conditions feeling left behind. Under the previous plan, those age 16 and over with certain chronic medical conditions were next in line to get the vaccine.

Now, instead of registering next for their shots, younger people like Caruso’s children go to the back of the line. Under Lamont’s new plan, 16-34 year olds won’t be eligible for the vaccine until May 3.

I feel unsafe whenever I leave my house. I just feel constantly on edge because there’s a life-threatening pandemic outside, and I have illnesses that would make it more life-threatening, and nobody cares.”— Kayle Hill, 24

Lamont doubled-down on his age-based approach — which is not in line with the Centers for Disease Control and Prevention’s recommendation that states use co-morbidities and job descriptions to come up with eligibility for the next round of vaccinations — on Tuesday, saying that it was very difficult to follow the federal guidelines.

[Lamont committed to his age-based standard on COVID vaccinations]

“Once you start making exceptions, it gets really complicated,” Lamont said.

Max Reiss, the governor’s spokesperson, said Wednesday there is a lot of confusion over which conditions would make someone qualify for the shot and which wouldn’t, and said that confusion could have led to logistical problems if they made people with disabilities next in line for the vaccination.

“There is inconsistency between the CDC and even what the allocation subcommittee recommended,” Reiss said, referring to the vaccine allocation committee appointed by the governor.  “These were some of the incredibly difficult decisions the governor had to make.”

The administration contends that the age-based rollout will be speedier and more efficient, simplifying the process to quickly vaccinate as many people as possible. State officials also said it would be difficult to determine which conditions qualify someone to be included in an early vaccine cohort and even more cumbersome to obtain and then provide proof of a medical condition at a vaccination site.

Advocates are frustrated with the message that it’s simply too difficult to prioritize vaccinations for some of the most vulnerable residents of the state.

“We really thought Monday afternoon we were going to be getting an announcement that expanded coverage to people who are 16 to 64, who are high risk, and to those frontline essential workers in all different industries,” Kathy Flaherty, executive director of Connecticut Legal Rights Project, Inc., said on the CT Mirror’s Steady Habits podcast this week. Then, she read the governor’s press release. She was irked that Lamont’s main reasoning for nixing the rollout for people with disabilities seemed to be that that it was too complicated and difficult.

“So, I’m frustrated,” she said, “especially considering that you’re just going to be reinforcing and exacerbating the existing health disparities, because you’re doing people who are older, which means they’re the people who have the privilege to live longer, which people don’t when, you know, when they’re people who are Black or brown, indigenous, Asian, disabled — we don’t have the life expectancy, so we’re dying earlier anyway.”

Connecticut is largely alone in its age-based approach to the vaccine rollout, said Jennifer Tolbert, Kaiser Family Foundation’s director of state health reform. Nebraska officials recently announced they were shifting to a similar vaccine plan based on age; Rhode Island is also vaccinating residents by age, though their next phase includes people with high-risk medical conditions.

But there are also other states, like Florida, West Virginia and Vermont, that have not yet identified the groups they are prioritizing next for vaccination. They, too, could adopt an age-based model, Tolbert said.

As of Feb. 20, Tolbert said, 20 states were vaccinating young people with high-risk medical conditions. But their definition of what constitutes a “high-risk medical condition” can vary by state, and isn’t always based on the specific illnesses the CDC identified that put someone at a higher risk of contracting a severe case of COVID-19.

[Who can get vaccinated against COVID in Connecticut, and when? Here’s what you need to know.]

“States are doing very different things, and that is partly contributing to confusion among the public as to who is eligible, and what constitutes a qualifying medical condition,” said Tolbert.

Regardless of Connecticut’s rollout plan, Caruso felt the governor’s press conference announcing the news Monday was patronizing to young people with disabilities and their families. She was particularly frustrated by officials telling younger people who have chronic conditions to circle the date on their calendar so they know when they’re eligible to get the vaccine.

“Wait, that’s what you’re telling them? They haven’t left the house,” Caruso thought when she saw the news. “There could have been a better way to deliver it without making people with serious medical conditions feel they’re less than others.”

Mary Caruso, left, helps her daughter, Alex Bode, get into a car for a trip to a hair salon. Caruso was vaccinated as a caregiver for her children with disabilities. “Fear is still there,” Caruso said, adding that her children won’t be vaccinated until May or June under the state’s new vaccination plan. Yehyun Kim / ctmirror.org
Mary Caruso, left, helps her daughter, Alex Bode, get into a car for a trip to a hair salon. Caruso was vaccinated as a caregiver for her children with disabilities. “Fear is still there,” Caruso said, adding that her children won’t be vaccinated until May or June under the state’s new vaccination plan. Yehyun Kim / ctmirror.org

Like Caruso’s children, many younger people with disabilities and chronic medical issues have remained inside since last March, the pandemic’s onset. When they do go out, they have to plan extensively for how to stay safe so they don’t catch a virus they fear could be lethal.

“I have not gone anywhere unless it was for medically necessary reasons. I stayed in my house, hanging out in my bedroom with my pets,” said Emily Ball, a 28-year old who has cerebral palsy and neurological conditions she says place her in a high-risk category. She lives in Wallingford with her parents, two cats and two dogs. “I just feel that a lot of the general public does not really understand the planning in every aspect of living for a person with disabilities, so they don’t think disabled people are at risk. And they just think of the elderly because that’s the stock image of someone that’s ill.”

Others are distressed when they leave their homes and see people who aren’t wearing masks. Some feel robbed of security even when they head to the doctor.

Kayle Hill, a 24-year old Waterbury resident who has an auto-immune disease, musculoskeletal conditions, and a genetic disorder that affects her connective tissues, used to bring loved ones with her to medical appointments. She gets anxious when she goes alone a result of past trauma from her experiences with the medical system. But making the trek solo is necessary because of COVID rules that prohibit anyone but the patient from attending the appointment.

“I feel unsafe whenever I leave my house,” Hill said. “I just feel constantly on edge because there’s a life-threatening pandemic outside, and I have illnesses that would make it more life-threatening, and nobody cares.”

Parents of children with disabilities are struggling, too.

Trish Whitehouse’s 20-year-old son, Bobby Zabarsky, has a single-ventricle heart. Whitehouse has stayed at home with him full time since last year, taking him out only to go on hikes.

“We’re in the house with these kids all day long. We have no one to help us. We’re trying to keep them safe,” the Southbury resident said. “We’re exhausted.”

Whitehouse had hoped Zabarsky would be in the group next to get the vaccine, but under the governor’s new plan he will have to wait until May, along with Hill, Ball, and the Caruso siblings.

“[At] 20 years old, he’s now grouped in with kids that are athletes,” Whitehouse said. “It’s salt in the wound, really. I just want to get him vaccinated and feel like I’m not paranoid all the time.”

Kelan is a Report For America Corps Member who covers the intersection of mental health and criminal justice for CT Mirror. Before joining CT Mirror, Kelan was a staff writer for City Weekly, an alt weekly in Salt Lake City, Utah, and a courts reporter for The Bryan-College Station Eagle, in Texas. He is originally from Philadelphia.

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