Advocacy
October 25, 2017 By Samantha Roth
Why the disability tax credit matters to my family

We are on the Alberta insulin pump therapy program, so we are very lucky to have pump and supplies covered for our four-year-old son, Liam (pictured above). However, we spend well over $100 every month in additional adhesives, pads, wipes, creams for rashes and more. This doesn’t include constant expenditures for treatments when he experiences a blood sugar low, and the food that we need to buy often when we are out because the direction of Liam's blood sugars changes swiftly and he cannot wait until we get home to eat. We buy food scales, pump belts, numbing creams, extra parts for makeshift medical devices, alcohol swabs, glucagon and more. We pay completely out of pocket for his continuous glucose monitor (CGM), which costs in the $400 to $500 per month range when new receivers and transmitters are factored in. And again that doesn’t include the numerous other wipes, patches and products we need to use to make the device work on Liam’s tender skin.

We spend hours every week pouring over his data to spot patterns, decipher possible pump adjustments and work through trial and error to keep up with his growing body, hormonal changes, activity changes and countless other things to keep him in a safe blood sugar range as often as humanly possible. We make all of his pump adjustments ourselves because as wonderful as the nurses at Stollery Children’s Hospital are, they cannot be in our home, observing and monitoring him daily. I've spent hundreds of dollars on books and countless hours on the Internet researching, learning and absorbing every bit of info I can find to help me better understand how to deal with each new curveball type 1 diabetes throws our way.

Liam started soccer and swimming again two weeks ago and we haven't slept through the night since, because the activity has caused his blood sugar to plummet during the night, and no real pattern has emerged as to when the drops will happen. He puts in different amounts of effort at each activity each week, so depending on how hard he went, he can go low anytime after midnight and before 6 a.m. Without the CGM that we pay out of pocket for, we would have no way of knowing and treating these lows effectively.

Perhaps the government also needs to be reminded of the time required to treat lows. At night it often takes us 45 minutes from start to finish. We have to poke, treat, wait for Liam’s levels to come back up and then wait for the CGM to catch up and come above the low line again so that we can sleep knowing it will alarm again if another low happens. This often takes an additional 10 to 15 minutes. If he's not in safe range after one treatment, add 15 to 20 minutes to my initial time estimate. And being a typical active four-year-old, we have been dealing with nights like this for weeks with no break, no solid rest and no reprieve. And we still spend around 20 minutes on each low during the day as well. This is normal life for us and other people with type 1 diabetes.

We spend countless hours on the phone with medical device and insurance companies, troubleshooting, fighting for our rights and getting bounced from department to department. Every activity must be carefully planned and prepared for in advance, and we must always have our stocked d bag with us, even for a quick trip to the park. We have to work with parents, schools and friends to pre-plan even birthday parties and holiday get-togethers, so that we can try to keep Liam’s blood sugars in range while he’s having fun, because otherwise he feels sick and can't partake in the fun like everyone else.

It's a never-ending chase where we always feel one step behind. And each of the struggles I face as a parent today will not go away when my child turns 18. They will only be passed on to Liam, so that as he tries to navigate this world in all the normal ways young adults do, he will have to deal with type 1 diabetes on top of it all.

Samantha Roth is a small business owner who lives in Alberta.

http://www.diabetes.ca/getmedia/482890c9-9f91-400b-9083-1942ed865202/index_03.jpg.aspx

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