The One COVID-19 Response Needed Most, That Never Came.

In the last couple of weeks, we have all received COVID-19-specific emails from companies we have interacted with as customers or clients. I've even heard from that one company I bought that one shampoo online from once three years ago. I have even written several of these letters for my own clients to distribute to their customer base

The goal of such communications is simple: inform clientele about what to expect in terms of workflow, services, communication channels, and timelines and provide assurance that they are complying with recommended COVID-19 protocols. It is all about staying connected and reassuring clients that their needs and safety remain paramount.

Do you know whom I did not receive an email from?

1. The Local Integrated Health Network (LIHN) that approves what services our daughter with special needs receives
2. Our case manager
3. The agency that sends me personal support workers or nurses
4. The Children's Treatment Network (CTN) or any of the therapists we work with through our region

If there was ever a context in which it was crucial to understand how services have, are, or will be adapted to mitigate risk for high-risk populations during a pandemic, this is it.

And yet, there has been no communication informing me of the measures being taken by the LHIN, CTN, and the agencies that schedule nurses and support to ensure families like ours who receive in-home nursing and support are as safe as possible. To be clear, they have my contact information: email address, cell phone number, and landline. These are three reliable ways to reach me.

So, let me share why it matters and what protocols need to be considered and communicated. Whether you’re a professional in an agency or government department or a parent who needs to make some calls, the ideas at the bottom of this article can facilitate a dialogue that will help outline how to best care for and support a fantastic and fantastically at-risk population.

My daughter has Rett Syndrome. There is no cure. In the “Really Crappy Disorders” category, Rett is a heavyweight. It affects mostly girls though boys too, robbing them of skills little by little and sometimes lots by lots by around the age of 18 months-2 yrs. In place of those skills, it gives breathing irregularities, intestinal issues, cardiac disorders, apraxia, seizures, dystonia, and something no one can figure out that we all just call “Rett episodes”.

It robs the nearly 1 in 10,000 of independent living, of speech, the ability to walk or use their hands. My daughter, Téa, isn’t able to talk, even though she knows how to and what she wants to say. She can’t call for help, make a joke, tell us to bug off. She uses a communication device to express thoughts and feelings; the catch is, if one of us hasn’t remembered to place it in front of her, she can’t tell us anything. What infants do routinely to gesture that they need comforting, she can no longer do. She can’t grasp, write, or point reliably. She had skills, and she was robbed of them. Now, daily, she works valiantly to regain balance and strength, to train her eye to stare at her device long enough to spell out the words she wants to say.

What Living with Rett Means

It means help with all aspects of daily living. Left alone, Téa would starve to death, soiled. To give you a glimpse of what that looks like in reality, it means her dad and I and her sisters, who are 11 and 13 years old, clothe, bathe, feed and toilet our 9-year-old. We monitor and reassure her during seizures and give rescue meds for seizures that require intervention. We run her G-tube feed and administer medications throughout the day. We practice PT, OT, and literacy exercises, too. For years until we finally qualified for personal support worker (PSW) hours and nursing hours we did it alone, without help, 24hrs a day. It means her welfare and ours are tied to the respite services that are available through government agencies in our area.

What Living with Rett Means During the COVID-19 Pandemic

For families like ours, social distancing (or sheltering in place), flattening the curve, isolation, and self-quarantine is achievable only by severely restricting supports we use to care for our daughter safely. It means taking on the full burden of care and education for Téa while working from home and educating two other children who are themselves experiencing the changes, stress, and uncertainty you and I feel.

It also means that because of her disorder, Téa is more susceptible to catching an infectious illness and more likely to be broadly and gravely impacted when she does.

If she gets sick during this time of COVID-19, and if we find ourselves short of ventilators, she doesn't make the cut. Our smart, connected, humorous, loving, and fierce daughter who has survived so very many traumas doesn't meet the newly defined criteria to qualify for the best to save her.

Lacking any communication about COVID-19 from the support agencies we depend on, I reached out to them myself. I charted the contingency plan that will increase the odds of my daughter's safety as we live and work with the least support possible and still have the respite we need to make sure we don't make life-or-death mistakes. I called because the one nurse we do let come in (protected to the nines) let me know she was being assigned more hours elsewhere.

Elsewhere equals danger in my world.

The more people our nurse comes into contact with, the more people our immunologically vulnerable 9-yr-old comes into contact with. People who are themselves in contact with others; people who must work outside the home; people who disregard safety recommendations; people who lack common-sense...or decency. This can devolve quickly, so I'll stop there.

What Special Needs Families Require Today

Even during the best of times, the pressures placed on special needs families are herculean. During a pandemic, we absolutely require informative and reassuring communication about how the LIHN, the agencies who send us support workers and nurses, Paramed, St. Elizabeth Health, SRT MedSTaff, and the CTN are responding to COVID-19.

This should be a no-brainer, but apparently no one at any level of any of these publicly-funded organizations and agencies thought that a letter to families would be something to do.

To keep Téa safe, we have cut off virtually all respite services during this all-important isolation period. But that isn't something all families can do. Many children require round-the-clock care. They require suctioning because they can't swallow without choking or swallow at all. They can't move on their own, eat on their own, go to the bathroom on their own. They need meds and feeds throughout the day. Many rely on TPN (total parenteral nutrition), meaning a line is run into their vein or via a G-tube, dressing changes, oxygen. The list is endless--as endless as the effort and love their parents have.

This means that communication from support agencies must clearly and specifically address a framework for public health intervention as it applies to individuals with complex and medical needs receiving services.

For starters, communication must address:

1. Rigorous protocols for the deployment of community nurses and PSWs that prioritize assigning individual care workers to one family at a time, or two at the most. In other words, my nursing hours would ideally be filled by the same nurse, and only that nurse, so I don't have multiple people in my home.
2. Exploring the need to reduce the number of hours nurses work, so they are rested and able to care for their families and our loved ones. Taking care of our healthcare workforce is a priority in other settings. Why not this one?
3. Establishing criteria to determine the level of risk to the person they are supporting, so that a child who is receiving treatment for cancer and therefore at high risk does not share a nurse with a family where members are required to work outside the home or have high-risk jobs.
4. Supplying community nurses with the necessary PPE to care for our children without placing them in danger or adding to the danger our children already face.

For almost all of us, living a pandemic is a new and perhaps terrifying experience. No one knows what tomorrow will bring.