The COVID-19 virus is taking a disproportionate toll on our most vulnerable population. The New York times, in a recent article, reported that, as of Monday, April 7, 1,100 of the 140,000 people with developmental disabilities had tested positive for the virus; 105 people had died. This rate is much higher than in the general population and similar to the toll in some nursing homes. New York Disability Advocates similarly reported that residents of group homes and similar facilities in New York City and surrounding areas were 5.34 times more likely than the general population to develop Covid-19 and 4.86 times more likely to die from it. What’s more, nearly 10 percent of the homes’ residents were displaying Covid-like symptoms but had not yet been tested, according to the consortium. National news reports indicate even more concerns
To assist, the Office for People with Developmental Disabilities (OPWDD) has released guidance documents to staff and voluntary provider agencies regarding visitation and quarantine protocols at their facilities. Yet the guidance had proven ineffective to protect individuals, as the system is inherently flawed due to a shortage of qualified workers, insufficient supplies and not enough monitoring. In this crisis, it is even more challenging, as due to the state of emergency, most facilities limit or preclude family member visits. Most family members can only bring their loved ones home, if they are willing to agree to an indefinite and uncertain date of return. Due to the New York State of emergency, unfortunately, certain OPWDD regulations may have been temporarily suspended, such as increased flexibility on written treatment plans for individuals. It is important for family members to monitor situations as closely possible.
Federal and State Law Prohibit Discrimination in Health Care
Even more concerning, family members report concerns that their loved ones may face rationing in care, due to scarce ventilators or other needed equipment. New York Disability Rights has filed a complaint against New York State, due to the lack of clear guidelines on ventilator use. Currently, a 2015 Task Force Report on Ventilator Allocation Guidelines provides detailed analysis which relies on clinical judgment and assessment of patient responses. As difficult as the situation is in New York due to the spread of the virus, the guidelines in other states are even less clear. The Office for Civil Rights, in a bulletin, has cautioned that federal laws prevent discrimination in any allocation of needed health care or support. Specifically, OCR, enforces Section 1557 of the Affordable Care Act and Section 504 of the Rehabilitation Act which prohibit discrimination on the basis of disability in HHS funded health programs or activities. Under these laws, facilities and programs must not deny medical care to any person on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities or age.
NYS Clarifies Visitation Guidelines
There is some good news on guidelines: Just this past Friday, April 10th, the NYS Department of Health, in a Health Advisory has stated that for individuals with cognitive impairments, including intellectual or developmental disabilities one support person at a time may accompany the individual, as a support person, in the emergency room or during hospitalization. For these hospitalized patients, especially with prolonged hospitalizations, the patient or family/caregiver may designate two support people; but only one support person may be present at a time.
What to Do
What can be done? This crisis has affected all but we cannot stand for disproportionate or discriminatory treatment for individuals with disabilities. The measure of a just society is how it cares for its most vulnerable members. Family members can help and prepare as much as possible. Any guidance seems inadequate in a crisis, but here are some steps to take:
- Get Information to Educate All. Educate yourself on what you can do to protect your loved one and talk to his or her caregivers about best practices.
- Ensure you Have and Guardianship Papers. When a person with a developmental disability turns 18, remember that he or she is legally an adult, and absent appropriate guardianship, parents will not have automatic authority to step to obtain information or make decisions. If you have guardianship, make sure to have papers and also draft any updates to a person’s health care status, medication or needs.
- Advocate and Speak Out. Advocate with your Senator, Governor Cuomo and OPWDD for greater oversight and monitoring, as well as supplies.
- Support Worthy Causes. Many organizations are working to ensure that our state and federal governments protect our vulnerable members. Many are seeking financial support.
We at Littman Krooks are here to assist with any questions. Contact us here.