Chapel Haven Appeals To Lamont To Reconsider Vaccination Changes

Chapel Haven registered disappointment Monday with Gov. Ned Lamont’s updated statewide vaccine rollout plan, saying the agency’s off-campus residents and their families are dealing with mental anguish as a result of changed rules delaying their shots.

Residents and staff of congregate settings like Chapel Haven are eligible for the vaccine. However those living off-campus independently while still depending on the facility’s care daily are not eligible under the revised rules, which now go by age rather than medical condition. As of Monday all people in Connecticut 55 or older, as well as all teachers, are eligible for vaccination.

Chapel Haven serves individuals with intellectual and developmental disabilities.

This past week Chapel Haven has circulated a petition calling for Lamont to revisit his newly shifted plan for vaccine allowance to include people with comorbidities and other high-risk individuals like those with disabilities.

Chapel Haven members and staff gathered Monday for a press conference to express their concerns.

This past Thursday Disability Rights Connecticut (DRCT) filed a formal complaint with the U.S. Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services claiming the new state policy discriminates against those with disabilities.

“We are writing to express our urgency that all of our adults and staff be vaccinated now, as was originally planned in phase 1b by your administration,” Chapel Haven President Michael Storz wrote in a letter to Lamont. (Read full letter here.)

Gubernatorial spokesperson Max Reiss told the Independent Monday the governor has no plan to amend the updated vaccination allowance program.

The governor said he made the change to simplify the vaccination process, avoid confusion, and vaccinate as many people as quickly as possible while targeting populations most at risk of death or hospitalization.

Reiss reported that 98 percent of the state’s Covid deaths have been individuals over the age of 40.

“Over the year the data has shown that the older that you are, the more likely you are to suffer from severe Covid complications,” he said. ​“This is the best, most equitable and fair way to get the vaccine in as many arms as possible.”

Of the estimated 250 Chapel Haven adults, 150 live independently off campus.

Storz argued that Chapel Haven’s community of individuals with intellectual and developmental disabilities are far more susceptible to the Covid virus than the general population, so off-campus members should also be prioritized.

Adam Boekman, 25, has been at Chapel Haven for six years. Boekman hasn’t seen his family in New York in person in over a year. Residents like Adam had to cancel his travel plans to visit his family because he has not been eligible to get vaccinated.

Adam said it took him some time to get used to using Zoom. It ​“feels awkward because we can’t hug or talk one on one,” he said.

Adam used to grocery shop weekly. Now he gets his groceries delivered from Walmart.

Chapel Haven has been hosting virtual get-togethers and activities for all residents. For the past year, recreational trips and activites have been canceled or moved online due to the pandemic.

“For many of them their success is directly connected with being able to return back here to campus for resources,” Storz said.

Since the start of the pandemic, Storz has hosted two community meetings a week to engage with residents to discuss personal concerns. During many meetings, residents would express their excitement to get the vaccine in March to be able to return to in-person gatherings sooner, he said.

“They depend on this hub for support, entertainment, socialization. This is their home base,” Storz said.

Karl Arezzini, 30, has been at Chapel Haven for eight years. Karl’s parents Lynn and David Arezzini joined the Monday event in support of the petition.

Residents like Karl and Adam have become active in Chapel Haven’s virtual events to keep connected with the community. When there are technical glitches, Karl can get physically and mentally frustrated, Lynn said. ​“When that little bit of a glimpse of the world on the iPad goes away, we have to try and keep him calm.”

Karl has several aides in and out his home during the week. Karl and his family have no way of being sure if his helpers have been vaccinated because of the Health Insurance Portability and Accountability Act.

The change in the vaccine plan came ​“without any chance for advocacy” from facilities like Chapel Haven, Storz said.

“I think they’re doing their absolute best, but it’s a misunderstanding on their part of the horrendous impact it has on this population,” Lynn said. ​“Their structure has been taken away, and that’s what they thrive on.”

For their own and their staff’s safety, residents have avoided independent actives like grocery shopping, using public transportation, and working.

Karl learned how to take a taxi to and from work just before the pandemic hit. That ​“gave him a huge sense of pride” his parents said. Lynn and David now drive from Guilford three times a week to bring and pick him up from work at East Street Arts.

Karl can no longer participate in his church choir or do cello performances in person. ​“I miss indoor church” he said.

Karl received four years of transition education at Chapel Haven learning independence skills.

“These independent skills took him a long time to develop, and there’s starting to be regression,” Lynn said. Karl’s parents worry about the difficult process to come for Karl to get back on an independent routine again.

“There is a very very big difference [between] a 30-year-old neurotypical person that has to wait until May to get a shot, and a 30-year-old individual like Karl,” Storz said. 

A Chapel Haven resident was recently hospitalized due to an outburst caused from high stress over and fear of not getting vaccinated, Storz said. ​“Many are spiraling out of control at this point because they don’t get it.”