Medical care rationing and disability: What parents need to know

As soon as I heard that Italy was at a point where doctors were making decisions about who should live and who should die because of a shortage of ventilators, I started thinking it was just as matter of time. As soon I heard there was a ventilator shortage here, too, I knew that moment of danger had arrived. People with disabilities like my boy Max were at risk not just for contracting the coronavirus but for not being treated for it. Because the minute people have the power to play God, they may deem those with disabilities less worthy of living.

The bias is real—some state's triage plans specifically endanger people with physical and intellectual disabilities. Alabama's plan states that people with "severe or profound mental retardation" (yes, they actually used that term) would be considered "unlikely candidates for ventilator support" should ventilators get rationed. Kansas's Department of Health and Environment issued a protocol to health professionals stating that it would be OK to remove ventilators from patients with "advanced untreatable neuromuscular disease." And Washington State's plan prioritizes people with a better "baseline functional status" and also recommends that teams consider transferring patients with "loss of reserves in energy, physical ability, cognition and general health" to outpatient or palliative care. In that scenario, people with disabilities start at a disadvantage.

On Saturday, the director of the federal health departments' Office for Civil Rights (OCR) office announced that his office was opening several civil rights investigations to make sure that states did not allow medical providers to discriminate on the basis of disabilities, race or age. "Our civil rights protect the equal dignity of every human life from ruthless utilitarianism," Roger Severino said in a news release. "Persons with disabilities, with limited English skills and older persons should not be at the end of the line for health care during emergencies." (Here's the bulletin the OCR released.)

Having raised a child with disabilities for 17 years now, I am acutely aware of the discrimination that exists—this thinking that our children are less-thans. Last year, I wrote about a complaint received by the Office for Civil Rights involving an individual with disability who was initially denied a heart transplant. (There is a long history of bias in transplants for people with I.D. and autism.) Should our children contract the coronavirus and end up in the NICU or ICU in need of a ventilator when a hospital doesn't have enough to go around, there is a chance that hospital could give that ventilator to another person—or remove a ventilator from a child, teen or adult with severe disabilities and give it to someone else if wrongheaded people are making these decisions.

I wanted to find out what parents and families should know ahead of time, in the event their child or teen ends up in the hospital, and so I turned to Marcie Roth, the executive director and CEO of the World Institute on Disability. I interviewed Marcie back in 2013 about disaster preparation for special needs families when she was the director of the Office of Disability Integration Coordination for FEMA. 

The key thing you can do to safeguard your child

"The first and foremast thing to protect your child is, to use a crude term, stay the fuck home! It's actually a hashtag," says Marcie. "You want to eliminate any and all ways you can think of to avoid your child or someone in your family contracting the coronavirus."

Call a doctor you trust ahead of time

Yes, do this now. Have that worst-case scenario discussion and see what steps the doctor recommends you take—bonus points if they are associated with the local hospital where your child would likely end up should they need care for COVID-19. "That person may be likely to say, 'Oh, don't be silly, they're not going to remove the ventilator.' And you hope they're right, but press on," says Marcie. Perhaps you could get their phone number to call or text, in case of emergency. "If everything started to fall apart, you need someone who can think more clearly than you to handle this," says Marcie. "They may not have the ability to intervene at a hospital, but they may. Your trusted doctor is more likely to intervene than your trusted next door neighbor." If your child regularly uses a ventilator, create a plan now with their doctor about what will happen should the ventilator malfunction, due to the shortage.

And if the worst-case scenario happens....

...and a parent is in a situation in which a child is fighting for their life and the parent needs to fight for their child's right to life, there are resources you can turn to for an intervention. These are the ones Marcie recommends.

• If you believe your child is being being discriminated against or denied medical care because of their disability, file a complaint with the Office of Civil Rights here. You can also email the office at OCRMail@hhs.gov or call 1-800-368-1019.

• Find your local Center for Independent Living (you might want to look this up now). These centers perform a variety of functions, including referrals and information. It's worth a call now to ask if yours would be able to provide assistance in case of an emergency.

• Contact your state's protection and advocacy agency, which provides legal advocacy services for people with disabilities. (Look it up here.)

• Reach out to your state's Developmental Disabilities Council. (Here's a state by state listing.)

• You could also call the Disaster Hotline of the Partnership for Inclusive Disaster Strategies, whose mission is to achieve equal access to emergency programs before, during and after disasters for people with disabilities. The number is 800-626-4959.

• Ask a few friends if they would help advocate for your child should the need arise. Friends will always be there for you, of course, but it's good to make the ask now.

I hope beyond hope that you never need to act on the information above. But as we parents of children with disabilities well know, knowledge really is power.