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PUBLIC TESTIMONY
Testimony by Miranda DeNovo, Founder of Long COVID Safety Net
1:50:31
ยท
3 min
Miranda DeNovo, founder of Long COVID Safety Net, testified about communication access issues affecting people with long COVID and other chronic illnesses who are unable to make phone calls due to auditory or speech disabilities. She highlighted the need for healthcare providers to offer alternative communication methods like email or text messaging.
- DeNovo explained how symptoms like hyperacusis (extreme sensitivity to sound) and speech difficulties can make phone communication impossible for some patients.
- She emphasized that HIPAA does not prohibit written communication with patients, contrary to what some medical institutions claim.
- DeNovo stressed the importance of universal design in accommodations, noting that improvements for one community often benefit others as well.
Miranda DeNovo
1:50:31
Hi.
1:50:32
Good afternoon.
1:50:33
My name is Miranda Stinson De Novo, and I'm the founder of Long COVID Safety Net, which advocates for people with long COVID and other infection associated chronic illnesses such as MECFS to get better access to health care and social services.
1:50:45
I'm here today to testify about an overlooked issue that affects this growing population and many others, and that's communication access, specifically how healthcare in New York City continues to be inaccessible for people who are unable to make phone calls, whether because of an auditory disability or a speech disability.
1:51:02
For context on how I'm using these terms, auditory disabilities include being deaf or hard of hearing but can also include auditory processing disorders.
1:51:10
In my community of people with long COVID, a common and perhaps surprisingly disabling symptom is hyperacusis or extreme sensitivity to sound, which can make holding a telephone call extremely painful, if not downright impossible.
1:51:23
One person I have worked with has had such severe hyperacusis that she would sometimes experience seizure like episodes and lose her ability to speak, leading the person on the other end of the phone to inevitably hang up.
1:51:34
Speech disabilities, of course, can come in a myriad of shapes and sizes, so in the interest of time, I'm going to borrow the broad definition used by the advocacy of nonprofit Communication First to encompass anyone who, quote, cannot rely on speech alone to be heard and understood.
1:51:48
This can include people with developmental disabilities, including autism, brain injury and stroke survivors, people with neuromuscular disorders like cerebral palsy or ALS, and more.
1:51:57
In the context of long COVID, there are at least two common reasons why someone might have difficulty speaking, the first being cognitive symptoms that affect things like word recall and ability to structure a sentence, and the second being extreme fatigue and muscle weakness.
1:52:10
Even if a person can muster the energy to speak a few words, at this level of severe illness, it will almost certainly trigger debilitating symptoms after the fact, a phenomenon known in the MECFS community as post exertional malaise.
1:52:23
Just because someone is not able to speak does not mean that they do not have access to language or that they are not capable of self directing their own medical care if given the option to do so in writing.
1:52:32
Frustratingly, even when
Kristy Marmorato
1:52:34
it is explicitly requested
Christina Curry
1:52:35
Thank you.
Mercedes Narcisse
1:52:35
Your time expired.
1:52:36
ADA.
Linda Lee
1:52:38
Oh, no.
1:52:38
If you could just wrap up in a couple sentences.
1:52:40
Okay.
Mercedes Narcisse
1:52:40
Yeah.
1:52:41
Go ahead.
Kristy Marmorato
1:52:41
Yeah.
1:52:41
Yeah.
Miranda DeNovo
1:52:41
Even when it's explicitly requested as an accommodation under the ADA, many medical institutions and social services agencies refuse to communicate with patients via email or text message incorrectly citing HIPAA.
1:52:54
While appointing a loved one or caregiver as a health care proxy may be an option for some, this presents undue administrative burden and requires patients to give up a crucial piece of their autonomy, often at significant risk to their safety.
1:53:04
In the worst case scenario, this opens the door for caregiver abuse.
1:53:08
And I just want to reiterate, I'll send in the rest of the testimony, but there is no rule in HIPAA that says you can't communicate with patients in writing.
1:53:13
It's just something that takes some setup to do.
1:53:16
Long COVID might be a new phenomenon to some extent, but these are not new requests.
1:53:20
A lot of them are things the Deaf community and autistic community have been asking for for decades.
1:53:24
And in the spirit of universal design, want to remind you that if you make an accommodation that helps one community, you're going improve the lives of another community as well.
1:53:31
Thank you so much.
Linda Lee
1:53:31
Thank you so much.