How We Are Failing Special Needs Kids During COVID-19

For today’s post I’m going to get up on to my soapbox. I apologize in advance if any of my opinions differ from yours, but after a day spent talking parents off of a ledge, I have some things to say.

5 months ago, the Governor of California placed a stay-at-home order for the state. Schools and businesses closed, and all instruction moved to remote instruction. For the most part, it was a mess. Teachers were working harder than they ever have to make sure our kids continued to learn despite being stuck inside looking at a computer all day, and kids sacrificed in-person instruction, play time with their friends, birthday parties, end-of-year celebrations, and essentially 5 months of their childhoods (and counting). Everyone was working the hardest they’ve ever worked, yet the ability to learn new skills was still seriously lacking. Since the school year ended school officials and teachers have worked hard to improve remote instruction techniques in the event that schools do not reopen at the beginning of the next school year, and in that time, we have witnessed a complete restructuring of our society as a whole. Companies have moved as many workers as possible to working from home, public spaces are the cleanest I’ve ever seen them, and teaching social boundaries is no longer a lesson just for kids on the spectrum, it is a lesson for all.

Now let’s talk about the reality that parents of children with special needs encountered at the end of the last school year and will likely encounter at the beginning of the next one. Our kids have been left behind. Take, for example, a child on the autism spectrum who is high functioning and in a mainstreamed classroom with a dedicated aide, or a classroom aide. Now that kid is expected to sit at home in front of a computer and sit at a table doing worksheets without that aide. I have spoken to so many parents who thought to themselves, “well, it’s the end of the school year, they’ll catch up next year”, and completely abandoned forcing their kids to attend class and let them be, in order to keep the peace and maintain sanity. Now, looking ahead to doing this for the start of the school year all over again, parents *in our area* are getting little to no information on how the school day is going to be structured, and how kids with special needs are going to be supported.

Who is going to sit with our special needs children and make sure they can attend to a computer screen, that they can sit and respond to their teacher, that they can get anything out of the instruction being offered? Is it a parent who is also trying to work from home? Is it a parent who may not have a great grasp of the English language? Is it a grandmother who is now a primary caregiver to children because both parents are essential workers who work outside of the home? This absolutely cannot be the answer. This is where applied behavior analysis needs to come in to play, but unfortunately, we cannot. I have been informed by several insurance companies, who largely fund the services I provide, that they will not be funding services during “instruction”, meaning when the zoom video goes live, we are not allowed to provide support.

I bring this to you as a clinician, desperately trying to figure out how to support the families that depend on the service we provide, and also as a working parent of a child with autism, who has been told that his speech therapy, occupational therapy, and developmental pre-k will be provided to him via zoom. He’s 3. He has an amazing team of ABA therapists who work with him 30 hours per week and have made amazing strides in his communication, socialization, and behavior, and they are being pushed out of his additional therapies and educational experience by the insurance company funding a portion of his program.

Insurance companies used to have a leg to stand on, school was school, home and community were separate. Separate goals were worked on in separate settings. Given the current state of affairs (that’s my nice way of putting that the world is on fire), the line of school vs. home no longer exists, yet school districts and insurance companies have yet to see it this way. Don’t get me wrong, insurance companies quickly changed their tune regarding Telehealth and approved it across the board shortly into our stay at home orders, so I hope that by bringing this huge inequality to light, we may be able to move the needle once again in the direction of flexibility and support when parents and children need it the most.

Flexibility has to be the name of the game. Everyone has to be flexible; parents of school-aged children know this better than anyone else at this point, but the flexibility also has to extend to our school districts and insurance companies. Education is not just learning your math facts and how to win a spelling bee, it is about learning how to be a student. How to sit, be respectful of others, compromise, listen, and engage. Without these essential skills being addressed during the educational experience, we are doing a major disservice to the future educational potential of our special needs kiddos.