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Saturday, August 1, 2020

Denial of Treatment

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

People with autism and other disabilities have faced discrimination in organ transplants.  Now they face discrimination in the availability of lifesaving care.

From the National Council on Independent Living:
On the eve of the thirtieth anniversary of the Americans with Disabilities Act (ADA) and in the midst of an unprecedented global pandemic, the National Council on Independent Living (NCIL) mourns the deaths of those who have died as a result of the denial of medical services, braces itself for more casualties to come, and condemns the inhumane practice of rationing healthcare that, although it has always been a concern for the disability community, has become an all-too-grim reality during this era of COVID-19.
The recent demise in Austin, TX, of Michael Hickson, a Black father of five who lived as the result of a cardiac incident with both spinal cord and traumatic brain injuries, has spearheaded a necessary conversation regarding the value placed upon life in the US. Hickson, who was taken to the hospital as a result of contracting COVID-19 in the nursing facility where he resided, was denied medical care, food, and water, ultimately starving to death, alone, on June 11th, 2020. The decision to deny Mr. Hickson treatment was made by his medical team and his court-appointed guardian and against the wishes of his family, who weren’t notified of Mr. Hickson’s death until a day after he passed away.
Michael Hickson’s life mattered – to his wife, to his children, and to his community. It should have mattered to the medical professionals charged to care for him. It didn’t – audio recordings of Mr. Hickson’s medical team clearly reflect that, because of his disabilities, they felt Mr. Hickson would be a waste of treatment. As states throughout the US move forward with initiatives intended to prioritize who during the pandemic will get care and rationalize about who will be denied, people with disabilities – who are disproportionately being impacted by COVID-19 at alarming rates – are left to grapple with the grim reality that healthcare settings, which are intended to provide care, are both a system of inequity and, as is the case with Mr. Hickson, an instrument of death.
The disability community deserves better, Michael Hickson and his family deserved better, and because of this, NCIL intends to file a complaint with the Office of Civil Rights (OCR) that will entail a request that they conduct a thorough investigation into the circumstances – and the myriad ADA violations that occurred – leading up to Mr. Hickson’s death. NCIL also seeks out legislative and organizational partners in the interest of joining forces on behalf of the disability community to ensure that, not only is the unfortunate trend towards medical rationing curtailed during the pandemic, it is seen for what it is by the general public: an unethical and barbaric practice that has no place in the US, moving forward.
NCIL filed the complaint yesterday.

Joseph Shapiro at NPR:
Disability groups have seen the Office for Civil Rights as an agency that will protect access to medical care during the pandemic. Groups in multiple states have filed complaints about state triage policies — often called "crisis standards of care plans" — that they feel allow medical providers to give lesser care to the elderly and people with disabilities.
One of the most recent complaints, filed July 22, comes from national and Texas disability groups, led by Disability Rights Texas. It asks the Office for Civil Rights to tell Texas to modify guidelines that allow hospitals to use a point scale to determine who is most likely to benefit from care when it is scarce. The point system, the complaint says, discriminates against people with disabilities because they lose points for their disabilities and underlying medical conditions.
The Office for Civil Rights has investigated complaints in other states and forced changes. Pennsylvania modified a system similar to the one now challenged in Texas; Alabama and Tennessee rewrote their rules to ensure that people with dementia, intellectual disabilities, traumatic brain injuries, advanced neuromuscular disease and other disabilities would not be denied ventilator and other care simply because of those conditions.
Now, the death of Michael Hickson, at that hospital in Austin, could be the next test of how doctors and hospitals, stressed by the coronavirus pandemic, provide medical care and whether they do it in a way that values the lives of people with disabilities.