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

November 16, 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: Preparation for the Second COVID-19 Wave

Individuals with intellectual and/or developmental disabilities (I/DD) have disproportionately suffered the effects of the pandemic. As members of the Family Advisory Board of Care Design NY, a Care Coordination Organization/Health Home (CCO/HH) serving approximately 27,000 adults and children in New York State with (I/DD), we believe it is essential to learn from and apply the painful lessons of the last seven months.

We applaud OPWDD’s convening ofthe Second COVID-19 Wave Workgroup and wish to contribute our voice to this discussion.

We are encouraged that DOH and OPWDD developed early guidance for programs in the designated Red, Orange and Yellow Zones. However, we believe the recommended actions fall short of a truly proactive public health plan for our community. We strongly advocate for the following measures:

• OPWDD must facilitate access to PPE and compensate the excess costs for providers, families, and Fiscal Intermediaries. The OPWDD community cannot be subjected to the same financial burden in obtaining adequate PPE we endured last spring to the present. Itis the government’s responsibility to ensure that all individuals and staff are effectively protected.
• OPWDD must facilitate the process of creating safe residential alternatives for individuals with I/DD to assure the health and safety of all residents in the case of a COVID outbreak. Certified and supportive residences lack adequate bedrooms and bathrooms to effectively quarantine infected individuals and prevent the transmission to other residents. Providers should be encouraged to provide alternative housing or isolation facilities that are safe, emotionally supportive environments, and be compensated for the additional costs incurred. OPWDD must also facilitate establishment of respite arrangements for individuals with I/DD living in the community who need a safe place to stay when they or their family or caretakers are impacted by COVID. Providers must be compensated for the additional costs incurred.
• It is incumbent on the State government to ensure that infectious staff do not endanger the health and lives of vulnerable individuals with I/DD receiving any services under the auspices of OPWDD. In the guidance document issued on 10/10/20, OPWDD indicated that all providers must strongly encourage/facilitate COVID-19 testing of individuals and staff and that weekly testing is recommended for services provided within Red/Orange and Yellow zones. It is not sufficient to only “strongly encourage” or “recommend” testing. Staff testing in the affected zones must be mandatory and accompanied by compensation to providers to pay for leave for staff members who test positive.

Those who reside in congregate settings have already experienced a higher mortality rate than the general population. We believe the rationale for mandated staff testing in nursing homes also applies to I/DD congregate care settings, as well as those served in the community. Those individuals living in the community, reliant on itinerant staff for their essential services must also be protected, and testing should be required in non-certified housing, day programs, as well as for other community-based services.

Thank you for the opportunity to voice our concerns. We respectfully request the opportunity to discuss these critical issues with OPWDD and DOH leadership.

Sincerely,

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