Thread by @thinkingautism

Hearing story after story re: non-speaking patients presenting w/significant behavior changes and urgent symptoms, and being dismissed or told they'll get eventual care. After advocacy resulting in faster care, turns out they had bad cavities, kidney stones, etc.

#SafeInitiative

Too many high-support and nonspeaking disabled patients have their basic rights ignored, and are essentially incarcerated in hospital beds because informed and accommodating care is not available/training has not happened.

#SafeInitiative

Now: @DonnieTCDenome is talking about how disabled people being mistreated and mis-accommodated in medical settings can lead to trauma, which in turn can lead to avoiding needed future medical care. This is a significant problem for healthcare access. #SAFEInitiative

@HariSri108's describes how he once almost had 911 called on him, when in fact he was experiencing acute ear pain. Thankfully a doctor thought to look at his ear, and he got antibiotics instead. #SAFEInitiative

Another medical care consideration from @HariSri108
is that often autistic people cannot tolerate the sight of medical implements like syringes. Providers can take simple steps like covering implements with towels until they are actually used.
#SAFEInitiative

Autistic and other high-support disabled people often need full sedation to access procedures like regular dental care, yet such procedures are rarely covered by insurance—which means people aren't getting the care they need, says @HariSri108.

#SAFEInitiative

One thing ANY health care provider can do, says @DonnieTCDenome, is to just SLOW DOWN and give your disabled patients time to process and respond. Ask yes/no questions. Giving people the time they need is crucial for patients with communication differences.

#SAFEInitiative

Consent is also crucial for patients with disabilities, says @DonnieTCDenome. There are a number of ways to communicate consent, including with body movements. Also consider spacing out overwhelming procedures like shots instead of lumping them together. #SAFEInitiative

It's important not to gate keep accessibility requests. It doesn't matter if you don't think a person "needs" an ASL interpreter. If they request one, medical professionals need to do their best to accommodate such requests, says @DonnieTCDenome.

#SAFEInitiative

Disabled people do not owe medical professionals their entire life story in order to access care, they deserve privacy and respect. Testimony from @DonnieTCDenome.

#SAFEInitiative

Overall, there just aren't enough medical professionals who serve patients w/neurodevelopmental disabilities like autism, & COVID attrition has made it worse. But we CAN train existing professionals to understand how to accommodate those patients.

#SAFEInitiative #Neurodiversity

Even if medical centers only look at disability and autism accommodations and training from a perspective of self-interest: Better training for supporting disabled patients can save hospitals and professionals money, time, and also protect staff from injuries.

#SAFEInitiative

Disabled patients have the rights to autonomy and choice, regardless of how they are able to (or opt to) communicate. -Patrick Forgey

#SAFEInitiative

Conversely, it is **extremely uncool and unprofessional** to spend ANY time of an autistic patient's medical appointment second-guessing their autism diagnosis just because they don't fit your preconceived autism notions. -Autistic self-advocate Patrick Forgey

#SAFEInitiative

Diagnostic overshadowing is a huge problem for autistic patients: Legitimate medical conditions like appendicitis, sprains, gallstones, migraines, etc. get chalked up to "autistic behaviors" or "autistic sensory issues."

#SAFEInitiative

Now hearing from AAC user Bob Williams from @Communica1st about how many more people have access to AAC, and how many more still need it (and how many gain AAC access only through accident).

#SAFEInitiative

@Communica1st We need strategies to ensure that all toddlers who might need AAC have access to it by the time they are six months old.

Lack of AAC access for those who need it endangers health, well being, and lives. It leads to life-long ostracism.

#SAFEInitiative