On May7, New York Assemblywoman Melissa “Missy” Miller (R, Atlantic Beach) held a virtual press conference about the continued—and inexcusable—neglect of the rights of the state’s disabled population and their loved ones. She appealed directly to Howard Zucker, Commissioner of the New York State Department of Health, to rectify this frustrating situation: On April 27, the CDC updated its Covid guidelines to say “Fully vaccinated residents of non-healthcare congregate settings no longer need to quarantine following a known exposure.” This was great news for disabled individuals who have been locked down and for their families—except it wasn’t. The New York State Department of Health has not instructed the Office for People with Developmental Disabilities (OPWDD) to update its outdated (6 months old) guidance; “rolling quarantines” of group homes continue and family members are prohibited from seeing their loved ones. Even without a quarantine in place, many residences either keep family out completely or require members to make an appointment to see their child or sibling. Repeated pleas for action to the state health department and OPWDD have been answered with “we’re reviewing it” or ignored altogether.

Enough is enough says Miller. “‘We’re reviewing it’ is not an answer. We can’t get the attention of the administration to do what’s right. . . . Once again, our population of loved ones is being completely disregarded, we’re the last thought in everything.”

Why are people in residential homes now experiencing these “rolling quarantines”? Because, though families and advocates fought hard and gained priority vaccine status for their loved ones and themselves as caretakers, it’s not making a difference. The infamous April 10 memo that mandated the same deadly polices as the nursing homes has not been rescinded, nor have outdated visitation restrictions been lifted. (Legislation to rescind the order has been introduced by NY state senators Mike Martucci and Anthony Palumbo and is now in committee.)

While the outdated guidelines have loads of do’s and don’ts for residents and their families, staff members at residential homes are not tested, and aren’t required to be vaccinated. While fully vaccinated residents are locked in, and fully vaccinated family members are locked out, staff are free to come and go, often to more than one residence. The latest data from OPWDD, cited at the press conference, shows that as of May 5, 38 residents from five homes tested positive for COVID, compared to 117 staff members at 102 locations.

NY State Assemblyman Thomas Abinanti (D, Greenburg and Mt. Pleasant), Chairman of the Committee on People with Disabilities, also spoke at the press conference. “I find it appalling that there hasn’t been a change in the visitation guidance since October.”  he said. “These are residences, these are people’s homes, why are we treating them like the long-banned institutions?”

“Family members are the connection to the outside world,” Abinanti continued, “they are the eyes and ears to ensure that the residents are healthy and safe.” Exasperated family members who are part of the advocacy organization New York Alliance for Developmental Disabilities (NYADD) spoke of their experiences. Susan Havko’s 31-year-old-son is autistic and nonverbal. She and her husband are not allowed to visit him. “Parents are essential to our son’s mental and physical health,” she said, and being excluded from his house means “we don’t know how he’s doing in his own home.” She is not informed when new staff members come in and has no way of knowing how her son is being treated. “I want full access to my son, and I want him to have full access to everything every New Yorker is allowed.”

In addition to lockdowns at group homes, many day programs—essential to the well-being of the disabled—have not reopened. Why? Dave Guerrera’s fully-vaccinated 36-year-old son sits at home all day. His day program is closed, and the staff at his residence won’t even take him to people-watch at a store (a favorite activity of many autistic individuals) because the agencies are so scared of the OPWDD guidelines. But, says Guerrera, “they are disregarding the Americans with Disabilities Act.”

Laura Tobias has two disabled brothers in group homes. Both were confined to their residences with no programs for a year, and while one brother is back in a day program, the other is not. “I’m scratching my head, repeatedly trying to find out why there are theaters opening and fairs about to happen, and festivals, and sporting events and music events, and my brother has been sitting at home since March of last year,” Tobias said. She cannot believe the “rules, red tape and hoops” she has to go through just to be able to see her brothers and comfort them in their isolation. “I have never seen a period in my lifetime,” she said, when a “population has been so neglected.”

Why are New York citizens, who are fully vaccinated and supposedly have rights, locked up? Have we institutionalized the disabled, again?

“Daily the governor gives us new guidance on restaurants and sports stadiums, etc.,” said Abinanti. “But there has been no OPWDD update on guidance in six months. People with disabilities are clearly more important than sports stadiums. But unfortunately, it seems, not in the eyes of the governor.”

How about you, Dr. Zucker?