Contributed photo

As a state advisory group prepares to make recommendations for the next phase of Connecticut’s COVID-19 vaccine rollout, advocates for people with intellectual disabilities are competing for inclusion in a crowded second phase.

Frontline health care workers were expected Monday to begin receiving the second of two shots necessary to protect against the coronavirus. They, along with nursing home residents and emergency medical responders, were included in Connecticut’s first wave of vaccinations.

Who’s next in line is up to Gov. Ned Lamont, who has signalled he plans to adhere closely to guidance from the allocations subcommittee of the state’s COVID-19 Vaccine Advisory Group. The group is expected to make recommendations on Phase 1b of the rollout when it meets Tuesday.

Advocates are hoping that residents with intellectual and developmental disabilities are included on that list. They argue the move makes sense from a human rights perspective. COVID-19 patients with intellectual disabilities are three times more likely to die from the disease than patients without disabilities, a November analysis concluded.

Families also say it would benefit public health since it can be hard or impossible for some people with intellectual disabilities to adhere to pandemic health guidelines. As a result, many families have been shut inside for the duration of the pandemic.

“We’ve sort of been in crisis,” said Kate Haaland, a mom from Waterford whose 26-year-old son has CHARGE syndrome. “I recognize a lot of people have been in that same situation, but I feel like it should be acknowledged that there are a small group of people that really can’t adhere to the guidelines in terms of mask-wearing, hand-washing, and social distancing. They have to stay home.”

Contributed photo Haaland said her family has been “locked in” at home since March. Her son Chris Horwath is deaf and has visual impairment. He is non-verbal and has significant intellectual disabilities. Before the pandemic, Chris participated in a day program through the Department of Developmental Services. Although the program has resumed, Chris is now unable to attend due to his underlying health conditions and his inability to follow public health guidelines.

“He doesn’t understand why everything changed. He’s a community guy. He used to spend his time out with family and friends, out in stores and restaurants. That’s where he thrived. It’s been really difficult because his whole life sort of shut down and he doesn’t understand why it happened.” Haaland said.

Chris is not alone. Kathleen Stauffer, CEO of The Arc of Eastern Connecticut, estimated there are around 50,000 people with intellectual disabilities living in Connecticut. Some may become eligible for vaccination sooner than others depending on what services they receive from the state.

Stauffer said much of the population may live at home with their families and receive no services. She said the allocation subcommittee should recommend a blanket inclusion for all residents with intellectual or developmental disabilities as well as their primary caregivers.

“We need to make sure the people with I/DD are not forgotten,” Stauffer said. “Based on experience, we have grave concerns that when prioritization is being made, the people we serve, they’re not even in the decision-making pipeline.”

Asked Monday whether people with intellectual disabilities should be given priority during the vaccine rollout, Lamont said he would rely on the judgement of the advisory panel.

“We thought long and hard about who’s on our vaccine advisory board, made sure that there are people there who are advocates for those with disabilities, intellectual disabilities, physical disabilities, and make sure that’s a voice heard,” the governor said.

The allocation panel is weighing several groups for inclusion in the next phase of the rollout, including the state’s critical workforce and people in congregate settings. Advocates for some groups, like people incarcerated in the state’s prison system, have been pushing to make the next phase, which is expected to begin near the end of the month. Other groups, like people over the age of 65, may be included in the third phase, known as 1c.

Haaland said she’s worried Chris will be relegated to that phase, leaving her without a clear estimate of when he may be vaccinated.

“I feel like we could be looking at summer or something like that and I just—I’m not sure how we’re going to keep this up, being locked in here,” she said.

At the moment, she doesn’t have a lot of options. She tries not to think of what would happen if Chris contracted the disease. Treatment would be a challenge, she said.

“He’s never stayed overnight in a hospital. He doesn’t lay in a hospital bed. Any time he has to get blood work or something like that, it takes multiple people, a lot of planning… He’s not somebody who would tolerate oxygen,” she said. “He has never been able to receive any sort of medical intervention without general anesthesia. It’s scary.”