I Will Not Be Silent

I debated sharing this but I don’t want those of you in the same position to feel alone and those of you not in this position should know what is going on.

In short, due to policies put in place at this time, my son has been denied and is being further denied medical care.

For those who haven’t been following me long, my son is autistic and has multiple medical conditions. In January he had surgery on his spinal cord, and to this day we cannot follow up.

Like many families with someone with disabilities we have been unable to get proper therapies and supports at this time. My son is on the Medicaid Child with Extensive Services (CES) waiver and we cannot get a single service it is supposed to provide. Our own pediatritian’s office isn’t even seeing children if they are sick at all, COVID possible or not.

My son was supposed to have a follow up MRI for his medical conditions around his brain and spine back in March. This was immediately postponed before the Stay-At-Home even started. Now policies have made it so we are being denied this care and it has now been canceled. This MRI is supposed to provide answers to whether or not his surgery worked, if his related conditions are improving, not changing, or getting worse, and if he is in need of further surgery. If he is getting worse or in need of further surgery, every delay in getting there means potentially permanent brain and nerve damage.

Children’s Hospital Colorado is not letting anyone in the building over the age of 2 without a mask. Under 2 is exempt because of safety concerns around choking and breathing. While technically my son fits the exception rules, I have to fight it every time I speak with someone or show up. My son has multiple documented medical and developmental reasons wearing a mask is actually dangerous for him. Children’s Hospital Colorado Anschutz Campus is located in Aurora County/Tri-County and it is NOT a requirement (just an encouragement) for masks to be worn. The general age in the state of CO where masks are required is age 3 and up due to these same safety concerns, yet Children’s Hospital has dropped the age a full year.

The hospital is also not allowing more than one parent with the child at given time. Again we fit the exception, but just being on the phone trying to sort things out today I’ve already fought this multiple times. An MRI at my son’s age is required to be sedated and is already extremely traumatic.

My wee man helping make camp food.

These we can fight (albeit repeatedly) and still get care. The final part which lead to my son’s care being canceled (not even rescheduled at this point) is the policy around mandatory COVID testing. Because my son needs to be sedated, they refuse the MRI unless the following is met, no compromises.

  • Must be tested via swab for COVID within 24-48 hours before appointment
  • Testing must be done at a Children’s Hospital testing site. The only locations are Aurora or Colorado Springs, both over an hour drive one way for us. No testing from any other site will be accepted.
  • These testing sites are drive-up style to a “shed” (their description not mine). No one is allowed out of the vehicle. The child MUST remain in their car seat. You cannot hold your child. You cannot swaddle your child (this is how we managed his swab when he had RSV and Adenovirus last year)
  • The swab must be swirled in the nasal cavity for a full 15 second count (this actually left my mom with two black eyes)

This IS TORTURE!

This is unnecessary testing in the most torturous way. The person performing the test will be full gown and masked. That is scary to a child. For many with special needs the car is already a hard enough challenge. I literally just got him to stop trying to escape the car seat every time we drive. But the only way they will test is if he remains buckled in his seat?! My son and our entire family are healthy and have not been exposed and symptom free. They won’t blood type my son even when doing other labs even when he had surgery, but this is MANDATORY?!

This is traumatising and torturous. They already fail to provide and take into account the mental health of very young children and they want to add this on. There is no mental health support for these children or their parents. Getting ahold of a human being instead of a recording has proven to be near impossible (I only got ahold of one because they called me in regards to his eating restrictions for the appointment), so instead I am bringing it to the attention of everyone.

Below is the intial letter I sent my district congressman and senator. I have heard back from the senator’s office and will be continuing our conversation with them. I am actually impressed with the intial response from Senator Brittany Pettersen’s office. I am still waiting to hear from the office of Congressman Ed Perlmutter.

Home from surgery wagon nap.

I am writing in regards to the ongoing and new healthcare policies around COVID-19 and how it effects those with disabilities.

Both myself and my two year old son fall under this purview with multiple disabilities between us. I am now being told it is REQUIRED that all persons age of 2 and up wear a mask to any medical appointment. I fear being denied medical care (which we already have been denied critical care that very well may be resulting in permanent brain and nerve damage for my son) because my son cannot wear a mask.

Wearing a mask is not an option for many of us with disabilities for a variety of reasons; including, but not limited to: difficulties breathing when our lungs already work overtime, mental health issues such as extreme claustrophobia and panic attacks, sensory related issues where in anything near the face is intolerable and even painful, etc. For a young child it is impossible for them to understand or even try to navigate around these situations. They are not developmentally capable of having coping mechanisms. In many these situations can lead to self harm. In my son’s specific case this leads to self harm of the head often resulting in concussions.

I am now be faced with the decision to attempt to force my son to wear something that will likely lead to him harming himself and/or others or further postponing critical medical care that is the difference between further permanent brain and nerve damage or having the ability to get proper medical treatment.

Not only is this a physical issue but we are also in the realm of creating horrendous mental health issues for children and parents alike. Having severe and chronic medical issues has already proven to be traumatic to my son and many others. Now I’m being told I am required to further this trauma by adding this to it.

In addition the science being reported to the public is extremely conflicting on itself and does not make sense when one takes a look a the bigger picture. Masks (especially homemade cloth masks or face covers such as buffs and bandannas) do not provide any substantial prevention of spread of viruses. It is also conflicting to require them in a medical facility where many procedures and exams require that they be removed for the actual procedure or exam to take place.

I say further denied medical care as we have already had this critical medical care pushed back far past the recommended time frame. We have also lost all therapy services and all services provided under the Medicaid CES waiver. At this time we are being told they will not be allowed to resume for at least another month if not longer, meaning we have lost ALL medical care for 3 or more months due to the policies being put in place.

This is completely unacceptable. It is also a violation of constitutional and human rights. My family is now in serious danger of further being denied medical care due to disability.

So my question to you is:

What are you doing to protect the rights of those of us who are disabled in any way that this situation has prevented us from being treated fairly and getting proper medical care?