In late April 2020, while field hospitals built with millions of dollars stood empty and the USNS Comfort prepared to leave NYC after having only treated 182 patients, Governor Cuomo announced that further construction on such sites would halt, because they were unnecessary. “Thank God New Yorkers listened, and the projection turned out to be incorrect, because we reduced the spread of the virus with the closings, NY PAUSE, etc.,” Cuomo said on April 21. “Did you need the beds? Yes. You needed the beds because that was the projections. We stopped any new construction when we saw the rate starting to stabilize.”
We know now that this “stabilization” for hospitals involved sending contagious individuals back to nursing homes, where they would infect others. But it wasn’t just nursing homes. Cuomo’s edicts put another vulnerable population in inexcusable peril: New Yorkers with intellectual and developmental disabilities (IDD) living in group homes. A study released in June in Disability and Health Journal titled “Covid-19 outcomes among people with intellectual and developmental disabilities living in residential homes in New York state” found that people with IDD living in residential group homes were more than twice as likely to have severe outcomes and deaths as the state’s general population.
The study’s authors write that “circumstances and decisions made early in the pandemic may have contributed to the higher case rate of people living with IDD in residential group homes. Those who tested positive for Covid-19 or who had presumed infection (during the time of limited testing availability) were required to return to their residential setting with instructions to sequester.” You know that notorious March 25 order, sending contagious nursing-home patients back to their homes from hospitals? Well, it had a twin. An April 10 memo from the Office of People with Developmental Disabilities (OPWDD) to operators of certified residential facilities had identical language to the nursing-home memo, to wit: “No individual shall be denied re-admission or admission to a Certified Residential Facility based solely on a confirmed or suspected diagnosis of Covid-19. Additionally, providers of Certified Residential Facilities are prohibited from requiring a hospitalized individual, who is determined medically stable, to be tested for Covid-19 prior to admission or readmission.”
This dangerous directive ignored the realities of typical group-home setups— small homes with shared facilities and no place to isolate. And, adding insult to injury, such “congregate settings” for the disabled were not designated as “priority recipients” of desperately needed PPE. Under New York State’s Emergency Management Policies, “hospitals, EMS, nursing facilities, and dialysis centers” were eligible for aid with PPE, but not residences for the disabled. A watchdog group, Disability Rights New York, filed a complaint on April 9 with the U.S. Department of Health and Human Services, stating that “New Yorkers with ID/DD living in New York State licensed or certified group homes and other congregate settings are at serious risk of contracting and succumbing to Covid-19. Direct Service Providers who provide essential care for individuals in congregate care settings do not have access to PPE to prevent the spread of Covid-19 to the individuals residing in these settings and many individuals residing in these settings are unable to protect themselves from contracting the disease.”
Meanwhile, families of the disabled had heart-rending choices to make at the start of the pandemic: take their family member out of a residential setting and lose their spot there permanently, or leave them there with no chance of visiting or bringing them home for a visit. For those with intellectual and developmental disabilities, for whom any change in routine can be traumatic, this sudden isolation was terrifying. Many of them were not able to understand the sudden absence of those dearest to them, and many started to regress.
And then, once the rate of infection started to slow and New York began its “unpause” in phases, the special-needs community was once again ignored. Families desperate to reunite with their loved ones were told that there was as yet no plan for them and were given the runaround by both OPWDD and the governor’s office as to when they could reunite with their loved ones.
Ignored by the governor and his administration, distraught families had to take matters into their own hands to help their loved ones and discover the true extent of their plight. The result was the New York Alliance for Developmental Disabilities (NYADD), an advocacy group that now has over 5,000 members. Beginning in May 2020, members wrote letters begging for action to Governor Cuomo, health commissioner Howard Zucker, and the head of OPWDD, Thomas Kastner. Soon they were aided by state legislators, such as Assemblywoman Melissa Miller (R., Atlantic Beach), who led a virtual press conference on June 15, joined by Assemblywoman Mary Beth Walsh (R., Ballston), Assemblyman Ed Ra (R., Franklin Square), and Dutchess County executive Marc Molinaro, to plead for Governor Cuomo to allow family visits at group homes. OPWDD finally came out with guidance and protocols to start opening up the homes in mid-July.
The Disability and Health Journal study that tracked Covid-19 outcomes for the disabled relied on voluntary reporting from advocacy organizations because OPWDD had not as yet shared any data publicly. In their calculations, by the end of May, out of 20,431 group-home residents statewide, 1,602 had tested positive, and 240 had died. While there is still no official count, I learned from the Facebook page of NYADD that at a virtual OPWDD stakeholder meeting in November, the number of deaths was stated as 483, and the number of individuals testing positive over 3,000. Similar numbers were reported in the Albany Times Union.
As with the elderly, these deaths may be quite underreported. Whatever the number may be, it sadly reflects a state government that has basically no plan to protect those with special needs. For all of Governor Cuomo’s words in his press conferences about the worth of each human life, his administration’s actual treatment of one of the most vulnerable groups in New York State suggests that his words were just that.