Disabled residents in CT demand justice as they await vaccine eligibility

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Equity falls short as Gov. Lamont’s age-based vaccine plan negatively impacts long-term care patients

By Sarah Canseco
Newswrit­ing 2 / Uni­ver­si­ty of Connecticut
March 2021

Weeks into Con­necti­cut’s COVID-19 vac­cine roll­out, dis­abled res­i­dents con­tin­ue to feel angry, anx­ious and left behind as many voice con­cerns that Gov. Ned Lamont’s age-based vac­cine plan under­val­ues the impor­tance of equity.

Sylvia Nor­ton, a 25-year-old Plainville res­i­dent with down syn­drome was hop­ing she would be among the lucky 608,000 res­i­dents who have been vac­ci­nat­ed by now.

Orig­i­nal­ly sched­uled to be eli­gi­ble for the vac­cine by March 1, Nor­ton was forced to change her plans after the state decid­ed to base pri­or­i­ti­za­tion on age as opposed to those with under­ly­ing med­ical con­di­tions, as rec­om­mend­ed by the Cen­ter for Dis­ease Con­trol and Prevention.

Put behind elder­ly patients, health­care work­ers and teach­ers, Sylvia Nor­ton now remains part of the 26% of young, dis­abled indi­vid­u­als forced to wait anoth­er two months.

“It’s dis­heart­en­ing real­ly and just very, very sad,” said Sylvia Norton’s moth­er, Car­rie Nor­ton. “She was so close to get­ting it and now she has to wait even longer. All I can real­ly tell you is that I am scared as hell. I’m scared for her to leave the house still, scared she still hasn’t got­ten this— scared for her to do any­thing until then. That has been the past year of my life—constantly feel­ing like she’s some sort of tick­ing time bomb while try­ing my best to make sure she’s as safe as pos­si­ble. It just isn’t fair; she could die with­out this.”

Since the start of the pan­dem­ic, dis­abled indi­vid­u­als have been some of the most sus­cep­ti­ble indi­vid­u­als to COVID-19, remain­ing three times more like­ly to con­tract the virus in com­par­i­son to the gen­er­al public. 

Across all states, a total of 182,228 COVID-19 relat­ed deaths have been those with at least one phys­i­cal, intel­lec­tu­al, or cog­ni­tive dis­abil­i­ty, allo­cat­ing for almost 32% of total deaths seen in the last year. 

“We feel so invisible—so help­less,” says Car­rie Nor­ton. “I have friends in Wisconsin—thousands of miles away ques­tion­ing the val­ue of their autis­tic child’s life because no one seems to be lis­ten­ing to them. I don’t under­stand why we have to try and prove why we deserve it as if my child’s entire life sto­ry isn’t proof enough. She doesn’t have the same health priv­i­leges as every­one else and trust me, this isn’t about spe­cial treat­ment, it’s about facts—it’s about life or death.”

Saad Omer, a Yale Uni­ver­si­ty epi­demi­ol­o­gist has also ques­tioned the state’s last-minute change.

As a mem­ber of the Nation­al Acad­e­my of Medicine’s com­mit­tee for equi­table vac­cine allo­ca­tion, Omer claims that Lamont’s lack of focus on equi­table vac­cine allo­ca­tion severe­ly harms the long-term effects of COVID-19.

“I’ll admit, bas­ing vac­ci­na­tion roll­outs on age does make things quick­er,” said Omer. “But what hap­pens when we ignore these younger pop­u­la­tions who are at a high­er risk for comor­bidi­ties is that we begin to dis­re­gard the peo­ple who have been dying the fastest, when real­ly, they need to be our focus. They don’t have time to wait, so when we pro­vide them with acces­si­bil­i­ty, every­thing else in the future becomes faster and more effi­cient. We elim­i­nate the big­ger issues and get to focus on the small­er ones. That is when we acquire speed, equi­ty, and bal­ance.”

With around 55% of the state’s COVID-19 relat­ed deaths being dis­abled res­i­dents in long-term care facil­i­ties, Omer argues that by putting these indi­vid­u­als first, mor­tal­i­ty and infec­tion rates can dra­mat­i­cal­ly decrease in the long run.

By allo­cat­ing COVID-19 vac­ci­na­tions to the largest and most vul­ner­a­ble com­mu­ni­ties, this would elim­i­nate imme­di­ate health risks with­in these larg­er pop­u­la­tions while also pre­vent­ing risk of trans­mis­sion into small­er communities.

“Dis­abled res­i­dents make up about 11% of the pop­u­la­tion,” says Omer. “Their pop­u­la­tion is almost just as big as elder­ly res­i­dents, yet they are dying at least two times faster than they are. If we put these indi­vid­u­als at the back of the line, we aren’t just putting them at risk, but we’re putting oth­ers in harm’s way too. Mor­tal­i­ty and infec­tion rates will only con­tin­ue to rise and that’s when this goes beyond health, but it becomes a social issue because no one is ask­ing about 400,000 peo­ple what they need.”

Accord­ing to Omer, mor­tal­i­ty and infec­tion rates attached to COVID-19 are not caused by the pan­dem­ic itself, but decades of dis­pro­por­tion­ate access to health­care resources.

For years, many dis­abled res­i­dents have faced phys­i­cal bar­ri­ers, lack of access to trans­porta­tion, lit­tle guid­ance in book­ing appoint­ments, inad­e­quate knowl­edge of health work­ers, pro­hib­i­tive costs and lim­it­ed avail­abil­i­ty of ser­vices among a vari­ety of oth­er challenges.

Many fam­i­lies like Car­rie Norton’s feel alone and ‘left to fend for them­selves.’ She believes that by lis­ten­ing to fam­i­lies and broad­en­ing access to resources, many chal­lenges may dis­solve as vac­ci­na­tion appoint­ments become more read­i­ly available.

“If we can help elder­ly indi­vid­u­als get the treat­ment they need, then we can do it for dis­abled indi­vid­u­als too,” says Omer. Dis­crim­i­na­tion in health­care is all too real and it’s a virus of its own espe­cial­ly when the tools we need to tar­get these mar­gin­al­ized pop­u­la­tions are right in front of us. By direct­ly remov­ing the bar­ri­ers that pre­vent these peo­ple from receiv­ing life­sav­ing treat­ment, not only can equi­table health­care begin to take space, but we’ll see death rates low­er, and rate of trans­mis­sion begin to slow down. Help­ing those most vul­ner­a­ble is a win for every­one, we just need to put our foot in the water.”