A letter-writing and phone call campaign is underway after the State of Connecticut unexpectedly changed its vaccine prioritization to go on the basis of age.

On Monday, March 1, Chapel Haven sent a letter to CT Gov. Ned Lamont to decry the change in policy and to urge that all of Chapel Haven’s community members be allowed to receive their Covid-19 vaccinations as soon as possible.

Also, Chapel Haven created a short video and shared it on social media platforms to share how devastating the wait continues to be for our vulnerable population. Called “A Message to our Governor,” you can view that video here

Click here to see coverage of the issue by the New Haven Independent: Chapel Haven Appeals to Lamont to reconsider vaccination changes

Many Chapel Haven parents are calling the Governor’s office, writing letters and signing a Move On petition urging the state to take action.

“On behalf of the adults and their families served by Chapel Haven Schleifer Center, 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 mailed to the Governor. “We urge you to act now and not to wait. We are grateful that the State of Connecticut did prioritize vaccines for members of our staff who are direct care, and for adults who live residentially on our campus. This was critical in slowing the spread of the virus and keeping the severe medical complications in our community low. Regretfully, though, your new policy shuts the bulk of our community out of vaccination until May at the earliest, at a time when Covid fatigue and other considerations put our population most at risk.

“Over the last year, medical professionals and research studies have recognized that autism, neurological conditions, acquired brain injury, and I/DD, increase an individual risk of serious complications and death from COVID-19. Not only are individuals with autism or I/DD more susceptible to COVID-19, but many of these individuals have also disproportionally lost vital educational services, health care resources and experienced employment layoffs. Some individuals with autism or I/DD may also struggle with mask-wearing or adhering to social distancing guidelines. Taken together, the evidence emphasizes that it is critical to vaccinate this population as soon as possible to prevent further harm.

We thank you for your consideration of our time-sensitive concern. In addition, we hope you will take a moment to hear directly from our parents and adults about why this matter is so urgent on the attached page.” 

Parents and adults of Chapel Haven have the following messages for Gov. Lamont:
“The vaccine affects me by not allowing me to see my friends and go to work because where I work is a government site and I can’t go back without it. I also cannot go home to New York to see my family.”
Adam Boekman, Chapel Haven community member

“I don’t understand why I still can’t be with my Chapel Haven friends after one year. I need Chapel Haven to have my independent life in my own apartment. I need help and I need my vaccine. Governor Lamont, please help me.”
Karl Arezzini, Chapel Haven community member

Chapel Haven is a community of warriors, standing strong in making their lives rich, productive and powerful despite a wide variety of physical and developmental differences. Give them the armor they need to make them safe and prioritize vaccinations now for ALL these special needs residents; they rely daily on Chapel Haven for classes, enrichment, nutrition and exercise and each other for support and connection. Please protect your unique, vulnerable Connecticut constituents who have modeled flexible, positive behavior throughout and let them continue to show us what courage is.
Ann Foley, Nate Sapan’s mom

Governor Lamont, The change in your vaccine rollout has effected the many young adults at Chapel Haven who have been unable to live a normal life since last March. All of the young adults have some disability and due to their underling health condition, COVID -19 could have a more severe effect on the young adults. Most other states have included those over 18 with disabilities on the 1a list. These young adults have missed out on working off campus, Randomly changing the requirements to who may get the vaccine is affecting the residents of Chapel Haven. Please reconsider and add back the residents at Chapel Haven as well as any other people with disabilities under the age of 55 to the 1a list.
Kim Hildebrand parent of resident Bryn Hildebrand

I feel strongly that essential workers (like my son, Shane, who works at Stop & Shop) and all other Chapel Haven community members who work in community settings MUST be vaccinated ASAP. Shane has diligently gone to work assuming risk without complaint for close to one YEAR now as have many other front-line workers. His autism and the fact that he is on medication to prevent seizures may put him at greater risk than others in his age group (30). We don’t really know what could happen if he contracted coronavirus due to these underlying conditions. Although he is very careful and informed about what he needs to do there are still many questions and unknowns. I hope the advocacy from CH and other groups helps Gov. Lamont revisit this issue in a way that benefits Shane and others in the CH community.
Jayne Sardella, mother of Shane Sardella

Dear Governor Lamont:
We along with the rest of the Chapel Haven community were very disappointed with the decision to prioritize Covid vaccination by age. Our son Nicholas has Down Syndrome along with cardiac comorbidities that while repaired still result in mitral valve insufficiency. At age 30 he probably will not be eligible for vaccination until late May or June. While we all have been dramatically affected by this pandemic, for individuals with intellectual disabilities it had been particularly acute. Many members of Chapel Haven were pulled out of the community in March last year by parents or guardians to isolate them as best as possible from the pandemic and have yet to return. They have suffered from job loss as well as the wonderful social elements and independent living that makes Chapel Haven so valuable. Those who are present at Chapel Haven are still isolated from most of the activities they enjoyed prior to Covid, and are still an at risk population. My son Nicholas has been fortunate to be able to work since June of last year but is isolated on the weekends. We are concerned that many of the skills he has developed will erode as the need to isolate continues. We realize our son takes on risk each time he goes to work, and we have tried to balance that with his need to be active. Being vaccinated would be a big step towards returning him back to the life he had before Covid. I urge you to please reconsider your decision and to prioritize those with special needs to be vaccinated as soon as possible.
Gary Romeo, father of Nick Romeo

My daughter, Tracie, like all the other people in the disability community should not be ignored. Many have intellectual disabilities which make it more difficult to follow through on requirements to avoid contamination, or spread of the virus and many  have co morbidities that make them more susceptible to getting sicker and being hospitalized or dying. Tracie works at Goodwill where they have had many positive cases and she is at high risk for getting Covid and bringing it home to her roommates. Since Chapel Haven has been closed Tracie has been unable to connect with people and even though she has roommates, she is isolated and is more anxious, depressed and is falling apart. I was hoping that they would allow the disabled community to be vaccinated in the next group so that Chapel Haven could open and continue providing well needed services and companionship to their extended community.  Another problem is that the Passover and Easter holidays are coming up and many in the Chapel Haven community won’t be able to go home to be with their families because their parents or family members with co morbidities may not be vaccinated yet, leaving them isolated again. Thank you for your help.”  Diane Miller, mother of Tracie