Since the beginning of the COVID-19 pandemic in mid-March, disabilities advocacy groups have worked to ensure that hospitalized patients with disabilities receive the care they need and deserve.
Among advocates’ concerns were the strict visitation policies in hospitals that left intellectually and developmentally disabled patients hospitalized with COVID-19 or other conditions without the support of family members, interpreters or staff to advocate for them.  The policies were instituted to protect visitors from contracting the highly contagious COVID-19 virus, and to prevent its further spread. However, disabilities advocates contend that in some cases, the policies had negative health impacts on patients with disabilities and even hastened their deaths.
To remedy the situation, organizations including the The Arc, Connecticut, Disability Rights Connecticut, Communication FIRST, and the Center for Public Representation filed a complaint with the Office for Civil Rights of the U.S. Department of Health and Human Services in May.
On June 9, they were handed a victory in their fight for the civil liberties of people with disabilities when, according to the CPR, “the Office for Civil Rights at the U.S. Department of Health & Human Services announced a resolution [or order] making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic.” The order went into effect on June 15.
According to a report in the Hartford Courant, “under the order, all support people must not have COVID-19 symptoms and must follow hospital rules on social distancing and protective gear.”
While the order specifically pertained to patients in Connecticut, other states are taking similar steps to protect patients with disabilities.
In North Carolina, The Arc, North Carolina, and representatives from seven other organizations recently signed a letter to hospital and medical personnel that emphasized the need for patients with intellectual/developmental disabilities to be accompanied by “direct support professionals.” The letter cited Section 4111 of the federal CARES Act (S. 3548).
“It authorizes I/DD direct support professionals to accompany clients on acute care hospital visits,” and claims that “shutting out caregivers potentially violates federal laws.”
And in Maryland, disabilities advocates successfully petitioned Gov. Larry Hogan to allow hospitalized patients with disabilities to be accompanied by caregivers. As David Greenberg, president of the League for People with Disabilities, told the Baltimore Sun, “Cutting off this support during a stressful time of a hospitalization … is outright cruel.”
Likewise, the New York State Department of Health made an exception to its strict visitation regulations for “patients for whom a support person has been determined to be essential to the care of the patient (medically necessary) including patients with intellectual and/or developmental disabilities and patients with cognitive impairments, including dementia.”
To date, states including New Jersey, Illinois, Pennsylvania, Delaware, Rhode Island, California, Massachusetts, Ohio and Oregon have similar policies. Disabilities advocates are working diligently to overturn them across the country.
