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Rare genetic disorder case inspires new ER protocol, emphasizing empathy and respect

When 19-year-old Jadyne Kancir had to go to the ER in March 2021, her mother says she was treated like a psychiatric patient. Except she wasn't one.{p}{/p}
When 19-year-old Jadyne Kancir had to go to the ER in March 2021, her mother says she was treated like a psychiatric patient. Except she wasn't one.

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When 19-year-old Jadyne Kancir had to go to the ER in March 2021, her mother says she was treated like a psychiatric patient. Except she wasn’t one.

The problem was that doctors had protocols to follow that were not meant for people like Jadyne.

Jadyne has a rare genetic disorder called SYNGAP1. In fact, she was the first person to be diagnosed with the disorder in Nashville back in 2019. She was 16 years old.

Her mother says she knew within the few first weeks of Jadyne being born that something was wrong, and this concern only continued to increase for every milestone she missed. The diagnosis provided relief to Jackie Kancir, Jadyne's mom.

The true diagnosis helped me realize that it wasn’t something I did. It took the potential guilt out of the equation,” says Kancir.

The diagnosis came after years of searching for a potential disorder that could have been affecting Jadyne.

SYNGAP1 is characterized as an intellectual and developmental disorder with high rates of autism and epilepsy coupled with delays in language development and difficulties with fine and gross motor skills.

The problem is that someone with SYNGAP1 has significant behavioral issues, and can display aggression that can be unsafe to the other people around him or her. This can be easy to interpret as something of psychiatric nature, especially if the person trying to deal with the issue is unequipped to deal with SYNGAP1 or is not familiar with the disorder.

This is what happened when Jadyne had an incident at the dentist in 2021. She was displaying aggression, and the situation became unsafe very quickly. A trip to the ER was necessary. Unfortunately, there was no protocol in place for how to de-escalate situations involving those with developmental and intellectual disabilities at the time. They also were not designed for cases like Jadyne's.

In fact, she was given a psychological assessment and had psychological holds put on her, even though her mom and those taking care of Jadyne already knew what she needed.

The goal ideally for everyone was to get Jadyne home as soon as possible, yet ineffective policies were slowing the process down.

Eventually, Jaydne was able to go home.

Yet, her mom knew that she had to do something so that what Jadyne experienced would not happen to her or others again.

Kancir went on to email the Tennessee Council on Developmental Disabilities' main email inbox.

She explained what had happened.

Lauren Pearcy, Executive Director of the Tennessee Council on Developmental Disabilities, said that what made Kancir’s email stand out was that at the end of the message Kancir laid out exactly what she wanted to happen in response to Jadyne's ER experience.

She described how policymakers needed to make the ER a better experience for those with intellectual and developmental disabilities.

Pearcy says that after reading the email, the department showed the email to Michelle Bagby, DIDD Director of Behavioral Health & Crisis Services. They went on to collaborate with Jackie’s behavior analyst, Vanderbilt’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) teams (some of the nation’s top autism experts), as well as the Arc Tennessee (an advocacy organization). The goal was to create a concise, practical document that would help people like Jadyne receive effective care in an emergency situation.

Kancir's advocacy and the dedication of policymakers led to DIDD's recent release of the ER stabilization protocol.

The document that is out now is being used by Vanderbilt Medical Center and is available to all Tennessee hospitals. It has a list of "Do’s" and "Don’t's" for emergency services in the case of dealing with a patient like Jadyne.

The goal of the protocol is to give ER personnel the very basics of how to have a successful interaction with someone with disabilities,” says Pearcy.

From the list of "Do's," Kancir says that it is especially important that emergency services use the patient’s best method of communication when interacting with them. For example, a patient with certain disabilities might not be able to communicate verbally, so in that case the provider could then try using pictures to see what the patient has to say. Kancir also mentions that including the caregivers in the plan of care is imperative.

Pearcy points out how the "Do" column emphasizes treating the patient with kindness and affirmation, making sure the patient knows their feelings and thoughts about what they are experiencing are taken seriously,

Every human can sense disrespect. That feeling of insecurity can escalate a person’s crisis when they can sense they are not being addressed directly," she says. "I think sometimes we miss the simplest thing like connecting with another human in a validating way.”

There are also some important “don’ts” on the list. Pearcy stresses the importance of never speaking about a patient when that they are right there, even more so if it is in a negative or irritated manner.

Not all Tennessee hospitals have adopted the ER Stabilization protocol yet. Sometimes hospitals may have competing priorities, but both Pearcy and Kancir emphasize the importance of the document. Pearcy says,

This protocol is intuitive, and has easy-to-implement practices that will help keep people safe.”

Kancir ultimately said that this new protocol is important for parents of kids with SYNGAP1 and other intellectual and developmental disabilities in that,

One of the most common things is that parents don’t feel like they’re on an equal playing field when you’re talking to people with MDs and PHDs. The protocols give you some support walking in.

She adds,

I have heard other parents say they feel more empowered because of the new protocol
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