A fierce advocate says that the common excuse that "no one wants to work with those behaviors” is just cover for “we don’t want to pay good people to work with your kids.”
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By Jacquelyne Kancir
"Of course we're trying to staff the case, but honestly it's going to be hard due to the behaviors."
"Maybe we should change the wording of the PCSP (Person Centered Service Plan). If people see the behaviors, no one will want to take the case."
"Was she hospitalized for this before? Why did they let her out?"
These are just some of the statements I’ve heard from officials as I spend day after day trying to manage crisis-level behaviors with nowhere to turn.
So, hiding the symptoms will help us to find treatment … for those same symptoms? This is absurd. When parents request services to ameliorate severe behaviors, they are asking for treatment of a medical condition. Why are these symptoms so stigmatized? Why must they be hidden? I am no more ashamed when my daughter has a behavior episode as when she has a seizure. Neither are within her control. Both are simply physical manifestations of the biological "misfiring" within the synapses in her brain.
What 𝘪𝘴 shameful to me is the pervasive discrimination against severe autism. It is shameful to me that our children are treated like biblical lepers. They're cast out of society, with no one to treat their symptoms, begging for their basic needs.
A police officer asked me about the hospitalization. Apparently, we're supposed to lock disabled kids away somewhere and toss the key?
But here’s the rub. Despite all the protests I hear from our local officials and administrators, I have found that there are people who want to work with this population. There are compassionate, driven people who don't consider our kids a "dirty job.” They see challenge and cause, a way to make a real difference, a person full of untapped potential. They are solutions-oriented people who crave that type of case.
We have built a team of such people.
Her CNA had never worked with this demographic before, and during the first few behavior episodes, she had to leave the room to cry because it was so hard watching my daughter go through that. She dug in and asked questions and learned, though, becoming one of the highest valued relationships in my daughter's life.
When we are in a crisis episode, we now have a team to call, and are met not with disgust on their faces and asking me why she was ever "let out,” but with calm friendly demeanors and sensory toys, who sit and ensure my daughter feels validated and heard, who sit in long meetings over the following week to tweak plans to try to prevent future crises.
Though injured during one of my daughter’s aggressions yesterday, her RBT (registered behavior technician) returned to work at my house the same day after leaving school to have her nose set and bandaged. She finished her shift out by painting butterflies at the table and dancing to Taylor Swift in the kitchen with my joy-filled daughter.
The proof is in her behavioral data. My daughter is making huge strides of progress. She never was some disposable creature like she'd been treated for so long. She was always a vibrant, fun, compassionate young lady capable of progress with appropriate support.
You will hear "no one wants to work with those behaviors." I'm here to tell you, that is a lie. The MCOs and legislators just don't want to 𝘱𝘢𝘺 those who do. These services do cost more than in-clinic sessions for small children playing with blocks and bubbles, as they should. EPSDT (Early and Periodic Screening, Diagnostic, and Treatment Services, a Medicaid benefit for children) is there to take the cost cap factor off the table, but states are failing to inform parents of it, or worse, lying and denying eligibility of services.
My best advice to parents is to become obsessive in policy and law. An informed parent is the kryptonite for this systemic abhorrent discrimination against children suffering from symptoms of medical conditions. Don't ever let them cause you to view your child as broken or incapable of progress. Invoke EPSDT and find the providers who have the courage, audacity, drive, and skill to see your child beyond their symptoms and to stand beside you as you build a world that breaks down their barriers to care and community.
Those people exist. I promise you.
Jacquelyne Kancir is a mom and tireless advocate based in Tenessee.
#authenticawareness #disabilityadvocate #severebehaviors #abatherapy #EPSDT #developmentaldisorders #severeautism #syngap1 #crisiscare
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