by Brigitta Hebdron
My son has Fragile X Syndrome, a genetic cause of autism. One of the first challenges we faced was disrupted sleep patterns. He was up crying loudly many nights long after the family was asleep. By the time he was eighteen months old, he shared a room with his older sister. When he awoke, I ran to their second-floor bedroom, swept him up in my arms, and carried him quickly down to my bedroom on the first floor, attempting to keep him from waking his sisters who required a good night’s sleep for school. Once, I dropped him in my sluggish attempt to hurry down the dark stairs in the middle of the night. To this day, that’s the only concussion he has ever had.
When he finally slept through the night, at seven, and after being on meds for months, I was ready to throw a party! A “sleepover” with one guest… me! We didn’t live in Colorado during most of those early years. When we moved here, I was shocked to find out that, after years of dealing with the exhaustion of disrupted sleep, his acquired ability to sleep through the night could have prevented him from qualifying for the CES Waiver.
The Code of Colorado Regulations found on the Colorado Secretary of State website states the following about CES Waiver Eligibility:
“The individual demonstrates a behavior or has a medical condition that requires direct human intervention, more intense than a verbal reminder, redirection or brief observation of status, at least once every two hours during the day and on a weekly average of once every three hours during the night.”*
*10 CCR 2505-10 8.503.30 (pp.60 8.a)
So, if you have a child with disabilities, regardless of diagnosis, severity of needs, physical or behavioral challenges, if he does not require you to be up with him every three hours during the night he doesn’t qualify for a much-needed waiver, according to the State of Colorado? Yep, that’s right. Regardless of the child’s cognitive or adaptive IQ, regardless of his daytime behaviors, regardless of incontinence, vomiting, or seizures.
I am not an expert in all disabilities, but I am an expert in being a mom of kids with special needs. I think I can easily speak for all of us when I say, at the very least, it’s an exhausting life, even on the best days. Often, our only respite comes when our children finally go to sleep. My son is eighteen now, and l still threaten the life of anyone who wakes him up after I finally get him to sleep. I have spoken to many moms of children with disabilities, sometimes truly debilitating disabilities, who say their kids sleep through the night. Isn’t that the mark of good mommying, when children are comfortable and sleeping soundly in their own beds at night?
To add salt to this wound, I have been advised that wakefulness due to incontinence “isn’t enough to fulfill the state’s requirement.” What? You’re joking. It wasn’t enough that he was up, and I had to repeat the bedtime routine as I cleaned him up, made up a clean place for him to sleep (admittedly, not always his bed, sometimes just a palette on the floor,) and get him to calm down and go back to sleep at 3AM? Bed-wetting wasn’t a good enough reason?
This narrow, archaic, and frankly, uneducated policy that is strictly enforced in Colorado must be revised. Disabilities are as diverse as all the people on earth. What affects one, does not affect all, even among those who have the same diagnosis. Not all kids with autism have disrupted sleep patterns. Many, like my son, experience that symptom when they are young, but eventually manage it through meds.
I tried to research the history of the CES Waiver to figure out how this policy originated. I found nothing on the internet. So, who decided it? And why? Why sleep? Why not seizures, perseverating, incontinence, immobility, IQ, etc? I could go on and on… What determines which “symptom” should outweigh the others? My dear friend, whose son is nonverbal probably wouldn’t trade places with me on the day my son put his fist through my windshield. Whose need is greater? If both boys sleep through the night are both families undeserving of the interventions the CES Waiver enables?
Dear Colorado Medicaid, it’s 2019, we expect you to contemporize your views on raising children with disabilities. The one thing families like mine deserve is a good night’s sleep!
**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.