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Critical Care Resource Rationing

During the height of the COVID-19 pandemic, there were real concerns that there would not be enough ventilators and equipment for all the individuals who needed medical care, and such care would have to be rationed.

Disability Rights New Jersey was especially concerned that individuals would be discriminated against in the rationing of medical equipment and critical care resources. Because of this concern, Disability Rights NJ raised this issue with the Governor’s office and demanded that individuals with disabilities have an equal right to treatment. After writing the letter, New Jersey’s Department of Health drafted a critical care resource allocation policy for all hospitals that specifically forbade discrimination of individuals with disabilities in the allocation of critical care resources. However, the Department’s policy relied on a scoring system that took into consideration long-term survivability. Individuals with disabilities are likely to score lower on this system because of assumptions about life expectancy that do not correlat with the immediate illness. In addition, there was nothing in the original policy that permitted individuals to use their own personal equipment.

Disability Rights NJ raised these issues with the Governor’s office, and in December 2020, the Department of Health revised the policy to permit individuals with disabilities to use their own equipment and prohibited the redistribution of that equipment to other patients. However, the policy’s scoring system continue to use long-term survivability as a factor. Disability Rights NJ has continued to challenge the use of long-term survivability in the critical care resource allocation scoring system.

Currently, we have written to the Governor’s office with our concerns and provided guidance from the U.S. Department of Health and Human Services Office of Civil Rights regarding excluding long-term survivability in any scoring system. We are also working with legislators regarding possible legislation that will also prohibit long-term survivability in any scoring system for critical care resource allocation. Although the emergency of COVID-19 is coming to an end, it remains important that this issue be addressed before any future emergency arises that will require the allocation of critical care resources.

June 15, 2022

Disability Rights New Jersey filed a complaint with the US Department of Health and Human Services Office of Civil Rights (OCR) stating that New Jersey’s Department of Health’s Critical Care Resource Allocation policy discriminated against individuals with disabilities because the policy takes into consideration long-term survivability.  Individuals with disabilities are likely to be determined to have shortened life spans, and therefore, are at a disadvantage when considering who gets access to critical care under the policy.  On June 15, 2022, OCR issued its findings regarding the complaint.  OCR reviewed the policy and noted the following concerns:  1) the allocation policy deprioritizes patients with disabilities believed to impact long-term survival; 2) the allocation policy does not extend protections for adult chronic ventilator users to pediatric chronic ventilator users; 3) the allocation policy does not explicitly provide for reasonable modifications to the use of the Sequential Organ Failure Assessment (SOFA) for assessing likelihood of short-term survival when necessary for accurate use with patients with underlying disabilities; and 4) the allocation policy does not articulate reasonable modifications to permit some additional time when necessary to evaluate effectiveness for individuals with disabilities.  

After setting forth OCR’s concerns, OCR chose to provide technical assistance, including guidance regarding critical care resource allocation, to NJ DOH to help them comply voluntarily.  Specifically, OCR advises NJDOH to review their policy to determine any noncompliance, and if so, to take steps to remedy the noncompliance.  OCR also advises that should there be another complaint in the future, OCR may initiate a formal investigation or conduct a compliance review of NJ DOH.  Disability Rights New Jersey will continue to monitor NJ DOH’s policy to ensure that NJ DOH addresses the concerns that we have raised as well as OCR.

June 18, 2021

Disability Rights NJ appreciates that the New Jersey Legislature enacted this law as part of a package of bills designed to improve the safety and quality of care of residents in all nursing facilities that resulted from the recommendations of the Manatt Report. New Jersey is the first state in the nation to statutorily require a patient care ratio to ensure that a nursing home expends 90% of its revenue on direct patient care. However, we are concerned that the proposed rules, as drafted, improperly narrows the scope of the statute, and undermines the purpose of the law. As detailed below, the proposed rules, as drafted, improperly limit the scope of the rule to only cover Medicaid revenue instead of all aggregate revenue and fails to address reimbursement for other payers of services, thus failing to ensure that the patient care ratio applies to all residents.