Letter to Department of Health Commissioner Zucker & Office for People With Developmental Disabilities Commissioner Kastner

November 18, 2020

TO: Dr. Howard Zucker, Commissioner, New York State Department of Health Dr. Theodore Kastner, Commissioner, New York State Office for People With Developmental Disabilities

CC: The Honorable Andrew Cuomo, New York State Governor

FROM: Care Design NY Family Advisory Board

SUBJECT: Protect People with Intellectual and Developmental Disabilities (I/DD) from COVID: Prioritize Prevention to Reduce Infections & Deaths

As members of the Family Advisory Board of Care Design NY, a Care Coordination Organization/Health Home (CCO/HH) serving 27,000 individuals in New York State with I/DD, we are compelled to respond to recent news and OPWDD measures that jeopardize the health and safety of our loved ones.

We now know from a new FAIR Health study of health insurance claims data that people with I/DD who contract COVID-19 are three times more likely to die than the rest of us. That’s the highest risk of any of the 15 conditions that the study looked at, including heart failure, chronic kidney disease, liver disease, and cancer.

Among individuals in New York State served by OPWDD, since March there have been almost 4,000 infections,with 80%(3,107) occurring in residential care settings, resulting in 477COVID-related deaths. This is a tragic mortality rate of over 12%. Yet the OPWDD just reissued guidance for the second wave of COVID-19 maintaining the same ineffective measures that failed to protect individuals with I/DD and their staff. How can they expect a better outcome this time? But they are.

These are our two biggest concerns:

1. OPWDD is permitting staff with known exposure to COVID to continue to work until they become symptomatic if their agencies say they are short-staffed. This ignores all scientific evidence about the lethal spread of infection from asymptomatic carriers. OPWDD does not even require testing to determine if the staff may actually be infected, even after close to 5,000 staff have had confirmed infections since March. Staff in nursing homes are required to isolate after a known exposure to protect vulnerable residents and must have weekly COVID tests. Why are our loved ones considered more expendable, even with a proven elevated mortality rate?

2.The Governor designated Direct Service Providers as essential workers in the spring yet has not included them or the vulnerable population of people with ID/D as priority groups for receiving the COVID vaccine when available. Our loved ones do not seem to count as valuable members of the New York State family.

We demand that...

• The State follows established public health practice and does not permit potentially infected staff to continue working. OPWDD should assist agencies to ensure adequate staffing without recklessly endangering health and safety.
• Staff in congregate care settings be tested weekly for COVID, just as in nursing homes.
• Individuals with I/DD are included as a priority group for the COVID vaccine when it is available.

Sincerely,

Rachelle Kivanoski, RN, BSN, MA
Susan Platkin, MD
Veronica Crawford
Bernadette Grey
Lisa Fleisher, PhD
Bin Feng