By Hal Walter
When we last left off in the continuing saga of our efforts to get Harrison on Medicaid coverage through the Children’s Extended Support (CES) Waiver, his application had been denied by the state, and I was determined to raise hell about it.
As background, Harrison is diagnosed with autism and ADHD, and he also exhibits a complex of other labels such as obsessive-compulsive disorder, Tourette syndrome, sensory integration disorder, and discalculia, which together result in random frequent outbursts, sleep disturbances and behavioral issues, sometimes violent.
In contrast, he is an inquisitive learner, runs on the Custer County track and cross-country teams, plays the drums in band concerts, and displays talent as an artist and woodworker. He was one of only two students in his class to run in every track and cross-country meet – 34 total – during his middle school running career, and has a solid B average in his classwork.
Now he’s going into high school next year. As his parents, Mary and I wish to enroll him in behavioral therapy, but the cost is prohibitive even with insurance. We make “too much money” (whatever that means) to qualify for Medicaid coverage, so we sought out the CES Waiver.
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According to the Colorado Department of Health Care Policy and Finance website:
The Children’s Extensive Support Waiver helps children and families by providing services and supports that will help children establish a long-term foundation for community inclusion as they grow into adulthood.
While the website mentions nothing about this being a program specifically for the sleep-deprived, after more than a year of jumping though hoops just to apply for the CES Waiver, his application was quickly denied based on what they call “nighttime criteria.” Mary and I decided to appeal this decision to the state administrative courts, and also I took the cause to the press, resulting in a front-page article in The Pueblo Chieftain.
Meanwhile, the court hearing was set for March 21, and my experience with successful appearances before a judge was limited to speeding tickets. I had my “case” outlined in my head – mainly that Harrison’s wildly erratic sleep habits and random nighttime outbursts were the least of my worries – but decided a few weeks beforehand that perhaps I should get some legal assistance.
Gary, a family friend and well-respected attorney, was glad to help out but was straight-up that his expertise is land, and he had no experience in this area of the law. I told him that I just wanted to make it clear we are serious by having legal representation, and also really needed someone to keep me on a leash and establish an air of decorum as I tend to lack respect for authority and due process.
I provided Gary with some of the various documentations of the case. He called one day and said that after looking over the documentation, he felt the discussion would be limited by the judge to “nighttime criteria.” I expressed my concern that despite many, many instances of documented sleep disruption, the nighttime criteria thing was merely the excuse they were using to deny, and that there were other much more serious criteria that Harrison clearly met. For example, being “behaviorally at risk” and also needing “near-constant line of sight supervision.”
Gary listened to me but gently said the way the documents read, he was sure the judge would focus on nighttime criteria in this hearing. In the weeks running up to the hearing, Gary called several times, leafing through the papers on the other end of the line and asking me a few questions pertaining to the documents, nighttime incidents and sleep habits. These incidents are, of course, random and do not fit neatly into the state’s checkbox forms.
Meanwhile, I set about outlining my own argument and lining up a couple of witnesses – namely Harrison’s school principal and cross-country coach – who could attest to his value to the community and also his swings in behavior and supervision requirements.
Finally the day arrived, and after a tardy start Mary, Gary and I, along with our case manager and local human services chief, huddled around a speaker phone at the courthouse. The judge and the state’s witness were on the other ends. After the introductions, the judge made it clear that nighttime criteria was the only topic for discussion. I clenched my teeth and went out to thank my witnesses and tell them they were free to go. And then I sat back and watched Gary go to work.
What we witnessed was a textbook case for why – despite what Shakespeare says – when you are dealing in matters of the law, you need a lawyer. Gary set about grilling the state’s witness and picking apart the case, leaving little doubt that Harrison does indeed meet the nighttime criteria. To put it in strictly legal terms: It was an epic ass-whipping.
While in awe of Gary’s skill, I also was humbled by the thought that I’d considered going into this without an attorney. In the closing statements to the judge, I did manage to squeeze in that I would gladly stay up all night reading a book to Harrison if we could help him find some way to self-regulate some of his more-extreme behaviors.
Several weeks later, we received a several-page write-up from the judge in our favor. However, her decision was not a ruling per se, but rather a recommendation to the state. Several more weeks followed in which the state had the opportunity to appeal, but did not. I subsequently went back to the Human Services office and filled out the same papers I did months ago.
The upshot: This may have been a pyrrhic victory. We still have not heard back from the state and it’s almost July. Harrison is still not on Medicaid. Phone calls go unreturned. We’re still not able to take him to a behavioral therapist. We continue paying for overpriced, lame corporate healthcare insurance. What’s more, we’ve been told that we may have to reapply for the CES Waiver in October, the anniversary of our original application, and start this entire process all over again.
Meanwhile, the months keep on clicking away while we all know the earlier the intervention the better.
We may need to call our attorney again.
Hal Walter is the author of “Endurance and Selected Essays on Autism, Neurodiversity and Deep Sport,” available at the Book Haven in Salida and online at amazon.com.
