Over the past week or so, the son of a friend—a person with Down Syndrome—had not been feeling well. It is common for Charlie to have sinusitis issues every spring, and typically the issue is managed with over-the-counter medications.
This year, Charlie seemed to be struggling more than normal. His breathing was labored. He had a runny nose and seemed to be “out of it” occasionally.
When he wasn’t feeling better after a few days, the family made the decision to take him to the emergency room at the local hospital.
Upon arrival, Charlie was immediately triaged by an emergency room nurse. It was instantly determined that he would bypass the waiting room, be placed in a bed within an isolation room, and be put on high-flow oxygen. He would receive a chest x-ray and be tested for Covid-19.
The x-ray showed the family’s worst fears confirmed: Charlie’s lungs had been ravaged by Covid-19.
People with Significant Disabilities Need a Personal Advocate During Hospitalization
Charlie doesn’t communicate very well. His oral output is limited. Articulation is low, and his sentence patterns are similar to that of a toddler. Charlie never shared that he was having a hard time breathing, mostly because he didn’t have the ability to articulate it.
His family is grieved that they didn’t catch it sooner.
Charlie’s dad decided to have him transferred to a bigger hospital where the care is more advanced. He made it clear to the ICU team that he would be staying in the room with Charlie. Personnel told Charlie’s dad that he could visit for 30 minutes twice daily. Dad knew better.
As a medical professional himself, dad knew well enough that the law did, indeed, permit Charlie to have someone with him in the room at all times, given his specific disability. Dad reminded the team, perhaps not so gently, of exactly how the law reads. Eventually they relented.
“I honestly don’t think anyone has ever pushed to stay with their person,” Charlies’ dad told us. “Rules and regs are changing all the time and it’s hard to keep up with them. If someone tells me updated information, all I ask for is a source so I can fact check. But to be told, straight up, that I’m not going to be allowed to stay with him just didn’t set well with me.”
Charlie has difficulty communicating with people outside his circle.
When someone is engaging with Charlie, there often needs to be someone close to him present to decipher what he is saying. Sometimes he can gesticulate his way through getting his meaning across.
More often than not, he says a hearty, “Yes!” to any question asked of him, mostly just to exit the situation quickly. While that can come across as super positive, it can—and has—led to dangerous outcomes. “Charlie, do you want to eat pizza?” “Yes!” or, “Hey Charlie, do you want to jump off the bridge?” “Yes!”
Charlie’s cognitive ability is equivalent to a person aged 3-6 years old. His father serves as his legal guardian and this guardianship extends to medical decisions.
A study published in The Lancet found that among patients with Down Syndrome who were admitted to the hospital with Covid-19, 50% were admitted directly to the ICU. Charlie fits this ticket.
Of that group in the ICU, 29% were hooked up to a ventilator. So far, that’s NOT Charlie.
With odds like these for people with profound disabilities hospitalized with Covid-19, should there really have to be an argument with staff about remaining with the person during hospitalization?
That person is already scared, probably nervous, definitely unsure of what’s going on. Are institutions committed to caring for the whole person justified in pushing back when parents feel they need to be there for their disabled child?
Do COVID-19 Hospital Protocols Supersede Guardianship Rights and Laws?
No. In fact, hospitals have been forced to amend protocols.
Over the courses of the past year of the pandemic, rules have changed. They’ve had to. Nothing is what it was. Healthcare entities have quite simply been forced to change the way they do things. In most cases, that means being more restrictive about visitation, but in the case of the profoundly disabled, there has been some give.
In my effort to be a supportive family member, I learned that there is, indeed, provisions in place. The law, as it reads in the Americans with Disabilities Act, is on the side of the person with disabilities. It provides that a support person can be by their side at all times. The support person is to be accommodated appropriately (food, water, etc.) and is not to be considered a visitor.
It’s clear that infection and hospitalization rates are higher for people with intellectual and physical disabilities. The big question is, have hospitals begun to make necessary policy changes using the federal rules as their guide?
Slowly maybe, but yes.
Other Ways and Ideas For Keeping Close Connection
Sometimes life is messy and being able to be onsite with a hospitalized person is not possible. Loving and caring for a person with significant disabilities overlaps a need to put food on the table. A lot of employers are not being compassionate during this pandemic. They claim their front-line/essential status requires them to keep moving; employees can either stay on the path with them or pack up their locker and move on.
If this scenario fits your situation, our hearts go out to you. This is an impossible scenario. Some would say they would quit their job to sit beside their loved one, implications be dashed. For others, especially those who live in communities where well paying jobs are not plentiful, this decision is complicated.
It is for the latter that these suggestions are offered:
*Create a book of information about your person. Make a simple list of any gesticulations or how words might be spoken and what they mean.
*Specify dietary needs should be notated and provided to the hospital team.
*Send a family photo
*Provide all emergency info—allergies, contact numbers, etc.
*Note what may create a calm atmosphere—music, specific TV show, stuffed toy, decks of cards, etc.
*Reach out to the hospital social worker and discuss how their support could be a valued resource to your loved one.
*Write a note/draw a picture for your loved one to have on their wall.
*Ask to FaceTime or Messenger Chat as often as able. There is no question that healthcare workers are incredibly busy but many are more than happy to take a minute or two to help make a connection.
What Will the Future Hold Upon Release From the Hospital Will Change His Life Forever Just As Covid-19 Has Done
Charlie, 29 years of age, lives at home with his dad and step-mother. He attends a day program in their community where currently nearly 20% of participants are out with the virus. Word came recently that one of the 20% had passed away as a direct result of Covid-19.
Charlie’s family members both work public service jobs—his step mother is a teacher and his dad is a paramedic/nurse/firefighter. Charlie has to have care provided during the day because he cannot stay alone in the home.
It is expected that once he returns home from the hospital and is cleared by the county’s health department, he will resume attendance at the day program center.
The center is taking “every precaution” to be as safe as possible and doing their best to instill the skills of hand-washing, mask wearing, and social distancing, the center director admits that there is always going to be a risk factor because clients and families are exposed to so many other people. The world knows this. It’s the same everywhere.
A vaccination clinic was held at Charlie’s day center; several clients and their families got their vaccinations. Many did not. Charlie’s dad opted out because he had read information indicating that people with Down’s may not respond well to the vaccine. He was trying to make the best decision given current information.
Charlie is one sick fellow. His oxygen saturation is not where it needs to be. His dad is committed to being by his side until Charlie comes home. Dad’s employer has been gracious in so many ways including continuing to pay dad’s full salary. This is a miracle.
Miracles happen every single day. Hopefully Charlie will continue to gain ground in his battle against this insidious virus. In the meantime, we send prayers and good thoughts to this young man, to his family, and to others around the world who are still fighting this virus.
For those of us in good health, be smart, avoid an attitude of arrogance about Covid-19, and be compassionate to others who still feel the need to be cautious.