Darlene Borré had run out of options to get her 20-year-old autistic son Ben a COVID-19 vaccine before his beloved two-week summer camp that catered to all of his special needs.
There were two unsuccessful attempts at the Connecticut Children’s Medical Center, when Ben became distressed and agitated at the first touch of the needle, and then a failed effort to get someone from the state’s homebound program to come to their West Hartford home and vaccinate him in his sleep in the middle of the night, but officials refused to accommodate that request.
Then she heard about clinics the Town of Vernon was going to be offering for developmentally disabled people like Ben, who is severely autistic and intellectually disabled, meaning he cannot talk, read, spell or say his name, and communicates mostly through his trusted iPad. Ben, like a lot of people, is also afraid of needles.
Last week, after two hours of preparing a back room at the Vernon Senior Center by doing everything from removing lights to having medical staff not wear their medical garb to appear less frightening, Ben finally got his Johnson & Johnson vaccine – in the back of their car.
Despite the staff’s best efforts to make the experience less frightening for him, Ben — who is 6’1 and 260 pounds — couldn’t stay still when they tried to give him the shot. So the team improvised and moved the whole endeavor to the car, where Ben was more comfortable.
“People do not understand how difficult it is to give a shot to someone like Ben,” Borré said. “You know you hear people say it was so hard to get vaccinated and they say ‘my son was so scared’ but yet they walked into CVS and a few minutes later walked out with a band aid on their arm. That was never happening here.”
The clinic where Ben was vaccinated was funded by a $40,000 federal grant to the Connecticut Council on Developmental Disabilities. The council is one of 13 agencies in the state that received money through the grant to vaccinate developmentally disabled people who live independently or with their families. (More information for people in need of this special service is available here.)
Advocates say this group — of which Ben is a part — got pushed to the back of the line when the state changed to an age-based vaccine rollout in January. Under CDC guidelines, people with disabilities like Ben’s would have been in one of the first groups eligible for the vaccine after the initial wave of health care workers, nursing home residents and first responders.
“The state’s approach has done very well overall and if you look at the total numbers the strategy has worked, but when they announced that they weren’t going to follow the CDC guidelines I was naturally disappointed,” said Walter Glomb, executive director of the Council. “Connecticut is in a great place except for these groups.”
Not walking into Walgreens
When the state changed to an age-based vaccine schedule they also unveiled a plan to vaccinate everyone in congregate settings, such as Southbury Training School and group homes operated or licensed by the state Department of Developmental Services.
But several advocates said that plan missed a significant portion of disabled people who either live independently or with family.
While no one could say exactly how large that population is in Connecticut, advocates said it’s likely thousands of people with anxiety disorders, severe autism, and other disabilities such deafness or blindness.
“We knew the vaccines were coming in December and we had some discussions with state officials but nobody wanted to do anything,” said Brynn Hickey, program director at the Disabilities Network of Eastern Connecticut.
Hickey said special clinics for the deaf were eventually scheduled as advocates partnered with both Hartford HealthCare and Griffin Hospital, mostly in the New Haven and Naugatuck Valley areas, after federal funding from the Department of Health and Human Services came through in March.
Several counselors adept at sign language attended those special clinics to assist deaf people through the process.
“By the time the funding came through I think the majority of our people had already just gone on their own and tried to figure it out,” Hickey said.
Vernon officials held a second clinic for developmentally disabled residents last Thursday. They set aside five hours and planned five vaccinations, although only two spots were filled. Officials are trying to get the word out to families with developmentally disabled family members that vaccines are available and they will work with them.
“In the amount of time that it takes to prepare our clinic to make it sensory appropriate and safe and effective we would normally vaccinate at least 100 people,” said Vernon Town Administrator Micheal Purcaro said.
Purcaro said a lot of precautions need to be taken. There needs to be limited sound, very few items on tables or in the room at all, the staff, including medical personnel, must dress informally, and there must be a separate handicapped entrance.
“The amount of time, effort and care that goes into giving one vaccination is likely the reason why not a lot of other organizations are offering this service,” Purcaro said.
Glomb said he has sent a letter to every health director in the state informing them about the special clinics, encouraging them to refer anyone who has inquired to either his office or Purcaro.
“They are doing five shots in five hours. There’s just not any other clinics like that,” Glomb said. “But this is not a group of people that can walk into a Walgreen’s and just get a shot or go to Rentschler Field and sit in their car and wait in line.”
State Department of Developmental Services spokesman Kevin Bronson said Tuesday there are approximately 17,000 individuals with developmental disabilities in CT that receive services through DDS. Bronson said there are likely more individuals with developmental disabilities that have ever received state services.
“For the DDS specific population- In addition to the earlier efforts to vaccinate those at higher risk in congregate residential settings, DDS and DPH partnered with vaccine providers to offer a series of clinics for all DDS-eligible individuals in all types of residential settings. Including those that are at home with their families,” Bronson said.
Aging and Disability Services (ADS) and the Department of Public Health (DPH) partnered with vaccine providers to offer a series of clinics for the deaf and hard of hearing. To comply with various federal and state laws, all providers must offer accommodations including things like translators, he said.
It’s just a tiny pinch
Borré heard about the Vernon clinics through Glomb and immediately reached out to Vernon officials. By then the family had spent months trying to get Ben get vaccinated.
“So at the very beginning when the lines were long, there was less of an opportunity for people to kind of work with us,” Borré said. “We were going into the children’s hospital at the beginning to get some dental work done so he was going to be under … but they didn’t want to do that.”
Connecticut Children’s Medical Center scheduled an appointment for Ben to get the Johnson & Johnson vaccine, but the appointment was postponed after the federal government paused the use of the J&J vaccine after some patients developed blood clots.
While waiting for a new appointment the family shared “social stories” with Ben about the vaccine as a way of reassuring him.
“You just have to sit still and then they come in and they count 3,2,1 and it’s over. It’s just a tiny pinch,” Borré said.
But when the second appointment date arrived, Ben was nervous.
“They had a separate room for us and they have squishy things there for him to hold and they tried and tried to vaccinate him but he was so revved up because it’s a hospital and his anxiety was so out there that there was no working through it,” Borré said.
Borré then heard about the state’s homebound vaccination program and reached out to officials about possibly coming to their home late at night when Ben was asleep and quickly giving him the shot. But she said local officials didn’t want to commit to that schedule.
Purcaro said his staff met with Borré and other family members for several hours trying to establish protocols for the vaccine and came up with two plans.
Plan A was to try and distract Ben while the doctor waited behind a curtain and would then come out and give him the shot. Plan B was to bring in some professionals to restrain Ben while the doctor gave him the shot. Borré said it wasn’t something she really wanted to do.
“When the needle hit his arm he just jumped up, So there was no way you could do a sneak attack with him,” she said, adding that Plan B also made her nervous. “I was really scared because I thought of One Flew Over the Cuckoo’s Nest and how it’s just going to be these big guys who will just come in and be very intrusive and not caring.”
But she said she met with the two men who would be doing the restraints and even had them practice on her mother to prove it wouldn’t hurt Ben. They decided to move the vaccine to the car because he mentioned the car several times on his iPad while they were at the senior center.
“So that was the next step. They went into the car and they held his arms and it worked like a charm,” Borré said. “After he got it the guys let him go immediately. They were like ‘good job Ben’ and they high-fived him and he was smiling. He was so proud.”
Glomb hopes that word will spread about the clinics so more people will take advantage of them.
“This is a community that is chronically underserved,” Glomb said. “But also, in this case, a group that has been severely impacted by the virus because many developmentally disabled people have other comorbidities that make them vulnerable to this virus.”
Borré believes there are a lot of people like her son. She said statistics show that about one-third of people with autism are non-verbal with intellectual disabilities. Many of them also have comorbidities and, with the new Delta variant starting to spread, the threat of the virus still looms large for this group.
As for Ben, he’s getting ready to attend the summer camp he missed last year because of COVID. Borré said he’ll be able to swim, use the special obstacle course and enjoy being away from home.
“Our goal was not only to make sure he didn’t get sick, but also that he doesn’t get other people sick,” Borré said. “To me the important thing is they were willing to work with us and our family in a really humane way. We needed an hour, they gave us an hour. Where else can you get that, right?”