INDIANAPOLIS— Indiana’s COVID-19 response plan does not include guidance on how doctors and nurses should decide to allocate ventilators if there’s a shortage, which is concerning to people with disabilities and groups who advocate for them.
An estimated one million people in Indiana are living with a disability, which can be anything that limits a person’s physical or mental condition.
Shawn Fulton is an adult with a disability living in Central Indiana.
“I do have slow learner and I have an anger issues," said Fulton.
Fulton is practicing social distancing but worries about getting COVID-19.
"I haven't gotten any symptoms, and I am just doing what they say," said Fulton.
Fulton works for the Arc of Indiana, an organization that is working to make sure that people with disabilities are treated fairly if they’re diagnosed with COVID-19.
Indiana has not had a shortage of ventilators yet, but COVID-19 has not yet peaked in Central Indiana, according to state health officials.
Kim Dodson, executive director of the Arc of Indiana, is concerned about what could happen if doctors and nurses have to make difficult decisions about who gets a ventilator.
"It’s the fear of what happens if and when the numbers start to surpass the existence of ventilators and true rationing has to happen,” said Kim Dodson, executive director at the Arc of Indiana. “History has shown the value of people with disabilities has not always been seen as strong and so I think some parents have some real concerns about what would happen."
Indiana Disability Rights and other groups wrote this letter April 16 to U.S. Health and Human Services urging them to put pressure on states and hospitals so that people with disabilities are not denied life saving treatments.
“Policies across the country give people with disabilities and older adults good cause for alarm,” read the letter.
Advocacy groups are also urging states to maintain data on whether a patient has a disability, much like states track race, age, gender and other information.
Call 6 Investigates reached out to Indiana’s Joint Information Center to find out whether they plan to track a patient’s disability status, and they responded that they continue to gather and analyze additional data, but do not have that specific breakdown at this time.
In an April 14 email to RTV6, Indiana’s Joint Information Center confirmed the state’s COVID-19 response plan doesn’t detail what hospitals should do if there’s a shortage of ventilators.
“It does not include ventilator triage guidance because those decisions are made within hospital systems,” the Joint Information Center responded. “ISDH monitors daily ventilator capacity as reported by hospitals around the state.”
The Arc of Indiana is working with the Indiana Hospital Association to better address the treatment of people with disabilities amid COVID-19.
"We need to make sure hospitals and medical personnel are making decisions from a medical perspective and not from a value based judgment perspective, so we are working with the hospital association to see if we can get some of the policies changed to reflect that," said Dodson.
Call 6 Investigates reached out to the Indiana Hospital Association.
IHA President Brian Tabor told RTV6 hospitals do not make decisions based on a person’s disability status.
“As always, hospitals remain committed to ensuring equitable resource allocation regardless of race, ethnicity, nationality, gender, socioeconomic status, religion, or sexual orientation,” said Tabor. “Additionally, this guidance does not base allocation decisions on any stereotypes, assessment of quality of life, or judgments about a person’s relative ‘worth’ based on the absence or presence of disabilities.”
Shawn Fulton hopes hospitals stick to a policy that treats people with disabilities just like everyone else.
"Being equal would be the key word there," said Fulton. “If anybody gets it, they should be treated the same. We’re just like you guys, we’re just a little different.”
If you or a loved one feels you’ve been discriminated against, you can reach out to Indiana Disability Rights.
They’ve created a page dedicated to COVID-19 and people with disabilities.
State data as of Thursday shows the state has 3,203—77% are available, and 10% of those in use are for COVID patients.
“The longer this goes on, our advocacy calls and contacts have significantly increased,” said Dodson. “ It’s largely due to the anxiety of – what if we are sick, what if something does happen and so I think that this conversation is really timely.”
FULL STATEMENT FROM INDIANA HOSPITAL ASSOCIATION
IHA President Brian Tabor’s Statement
“As the COVID-19 pandemic has unfolded, all local hospitals have worked extremely hard to increase capacity, so our community is equipped to care for all, especially the most critically ill. The good news is that Hoosiers’ collective mitigation actions appear to be working and there is currently adequate capacity in all Indianapolis-area hospitals.
In an attempt to update the Indiana State Department of Health's 2014 Crisis Standards of Patient Care Guidance with an Emphasis on Pandemic Influenza: Triage and Ventilator Allocation Guidelines, a dedicated team (including those working in ICUs, emergency rooms, palliative care, ethics, etc.) worked to provide guidance to front-line clinicians in the extremely unlikely event that, due to a huge patient surge, there was inadequate ventilator supply. As always, hospitals remain committed to ensuring equitable resource allocation regardless of race, ethnicity, nationality, gender, socioeconomic status, religion, or sexual orientation. Additionally, this guidance does not base allocation decisions on any stereotypes, assessment of quality of life, or judgments about a person’s relative ‘worth’ based on the absence or presence of disabilities.”