CLARKSVILLE, Tenn. (WKRN) — Odds are, you’ve probably never heard of SYNGAP1, a rare genetic disorder caused by a gene variant.
“Our kids typically have intellectual disabilities, hypotonia, seizure disorders, severe behaviors, a whole slew of challenges,” Jackie Kancir said.
Kancir had been taking her daughter Jadyne to specialists for years. Prior to diagnosis, Jadyne had over 100 seizures a day and several episodes or outbreaks every year. Those episodes would often result in hospitalization for Jadyne.
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“You or I, if we see that the stove is red, we know that it’s hot and so we know that hot hurts and not to touch it,” Jackie said. “But for her, she might see that the stove is red and think ‘apples,’ and apples are good and sweet and so she would touch it.”
But the over-connection in her brain would be muting pain response, so she wouldn’t even know that she was searing her hand on the stove.”
After a proper diagnosis, the Kancirs found the Tennessee START(TennStart) program, housed within the Dept. of Intellectual and Developmental Disabilities (DIDD).
An acronym that spells out Systemic, Therapeutic, Assessment, Resources, & Treatment, it provides a plethora of resources, most notably a 24/7 crisis response team.
“We may provide some coaching or telehealth while we’re en route, which is super important and helpful not only to the person but also to the system, to make sure that they know that help is on the way, that we’re trying to come and bring oxygen to that situation,” said Michelle Bagby, DIDD Director of Behavioral Health & Crisis Services.
So, if and when Jadyne does have an episode, instead of law enforcement showing up, the response is community-based instead.
“Typically, the medical model focuses on what’s wrong, what’s the diagnosis, what’s the problem,” Bagby said. “We focus more on the strengths that that person and their system have.”
It’s a model of consistency – every single time Jackie and Jadyne call, it’s a rotation of the same four people who answer. Those four know Jadyne’s case, her personality, and solutions on how to handle her.
Since they began, Jadyne has yet to go to the hospital for an episode, and Jackie has become an advocate for the program that changed their lives.
“Our experiences, though they might be challenging, they are being used to make it a little easier for the next person who comes in,” Jackie said.
In fact, she’s become a leader in pushing reform, particularly within hospitals.
Prior to the creation of TennStart, when law enforcement would bring Jadyne to the hospital, they’d often put her in the psychiatric ward, especially if she had some self-inflicted wounds.
“They were looking at that as self-harm,” Jackie said. “I was trying to explain that self-injury, in this case, wasn’t the same as self-harm because of that difference in intent. The results don’t define intent.”
In late 2022, the protocol in handling cases like Jadyne’s changed, thanks to lobbying from TennStart.
“Oftentimes, clinicians and other professions in the emergency services area do not get IDD (Intellectual and Developmental Disabilities) training,” Bagby said. “[It’s] led to initiatives such as our emergency room stabilization protocol, which has the do’s and don’ts of how to support someone with IDD who may come to your emergency room.”
Those changes surround things like environmental considerations, treating each patient with dignity and respect, and not assuming each case might be routine for that patient.
The program is available statewide after a phased rollout, starting with people enrolled in Medicaid services and now to people who aren’t enrolled but are eligible. Part of the DIDD’s budget request this year was for money to continue expanding TennStart.
If you or someone you know could benefit from TennStart, the DIDD encourages you to make a referral on its website.