A few months ago in Challenges of Non-verbal Patients and Communication Solutions, I recounted my experience during a recent hospital stay where communication barriers made it a nightmare. I wrote how having a caregiver or friend there would have alleviated those problems. They would have helped care for me and showed nurses how to do so. Yet, the hospital didn’t allow any visitors due to COVID-19. Consequently, I had trouble eating, sleeping, and going to the bathroom.
Other patients with communication or cognitive impairments have similar or worse experiences. For instance, Shane Sessa, who has cerebral palsy and is non-verbal, became confused and scared when the hospital prohibited his mom from visiting during his 3-week hospitalization. A woman in Massachusetts who had Down syndrome died because she kept pulling I.V. tubes out of her arm because she didn’t understand their purpose. If the hospital had allowed a family member or caregiver to be there with her, this wouldn’t have happened.
Some hospitals have denied ventilators to patients with disabilities and given the lifesaving machines to patients without disabilities. Alabama, Kansas, Tennessee, and Washington have had rationing policies that permit hospitals to dedicate who gets treatment during an emergency crisis. It’s like The Brave New World or the Holocaust where the strongest must live and the weakest must die. According to The Atlantic Monthly’s People with Disabilities are Terrified, the rationing nightmare could extend to other states like New York where ventilators are scarce, resulting in more lives of more persons with disabilities being threatened. Ventilators even have been removed from persons with disabilities who had used them for daily living to give them to non-disabled patients who have COVID-19.
Perhaps many states didn’t know that the Americans with Disabilities Act (ADA) and Section 504 of the 1973 Rehabilitation prohibits hospitals from discriminating against patients with disabilities. Failure to provide the same level of care (i.e. services) to patients with disabilities violates these laws. This wonderful fact is highlighted in a video called Know Your Rights: People with Disabilities Can Have a Supporter in the Hospital during COVID-19.
As the video pointed out, hospitals are public places, therefore, are covered under Title II and Title III of the ADA. Since hospitals receive government funds, they also fall under Section 504 of the Rehabilitation Act. Medical entities must provide persons with disabilities equal access to their services and facilities. Equal access doesn’t mean only providing diagnostics to patients with disabilities. It means explaining those tests, the results, and allowing us to ask questions. Equal access entails not only providing hospital beds and meals to us, it also requires hospitals to make us feel as comfortable as possible and ensure they feed us properly. Equal access is providing patients with disabilities the necessary equipment to help us continue to live productive, happy lives. According to a Harvard study conducted by Dr. Lisa Lezzoni, many doctors think to the contrary, assuming the quality of our lives is poor.
Equal access entails not only providing hospital beds and meals to us, it also requires hospitals to make us feel as comfortable as possible.
Although these laws exist to protect our civil rights, the Office of Civil Rights (OCR) published a bulletin on March 28, 2020 to enforce them. The bulletin states that medical professionals should treat all patients based on current medical assessment, not on pre-existing medical conditions, disabilities, or age. It also says that health care providers should make every effort to communicate with patients with speech and/or hearing impairments. Furthermore, the bulletin stresses that hospitals meet the needs of all patients, implying they provide care assistance.
On June 9, 2020, the OCR helped resolve an issue involving Connecticut hospitals that were not allowing “support persons” to visit patients with disabilities. One of the complaints included a 73-year-old patient who has aphasia and thus couldn’t communicate her needs. OCR convinced the state to change hospitals non-visitation policies. Connecticut issued an executive order to “ensure that people with disabilities have reasonable access to support personnel in hospital settings in a manner that is consistent with disability rights laws and the health and safety of patients, health care providers, and support persons.” The order states that if a hospital stay is longer than a day, patients can have two support personnel alternating shifts.
A few weeks later the OCR helped resolve complaints against a Tennessee policy that prevented patients with disabilities access to ventilators during a health crisis, such as a pandemic. Thanks to OCR intervention, Tennessee updated its crisis standards of care (CSC). The CSC basically states that hospitals can’t deny ventilators and other lifesaving medical resources based on disability, age, or life expectancy. Furthermore, if these medical resources are already in use, they shouldn’t be re-allocated to other patients.
Due to these resolutions, Illinois, New York, Oregon, and Ohio (where I live), have established policies allowing patients with disabilities to have visitors to assist with caregiving and communication needs and access to lifesaving equipment. Hopefully, other states will follow suit, honoring and enforcing our civil rights to live healthy, happy lives.
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