Katie (pictured above) learned early to live with purpose and to seek all the help she could get.
“Excuse me, I have to take this call from my insurance company, so that I can stay alive at night,” Katie said with a smile as she rolled over to her cube to pick up her cellphone.
The conversation with Medicare has now run for several months, trying to get new masks for her BiPAP breathing machine, which keeps her lungs more open while she sleeps.
Katie patiently collected the new representative’s name and direct number before providing her own ID number, health insurance information, and story behind why she needs the life-giving masks. The call ended, unresolved, but Katie was unruffled.
“I’m used to this now. I’ll eventually get it worked out.”
And she did. Instead of a cheap new part, she told me happily, she had received a brand new BiPAP machine along with complex new parts. “It’s an inefficient use of tax dollars,” she explained, “But sometimes, you have to let the system do its thing.”
Katie was diagnosed with congenital muscular dystrophy (CMD) at the age of 4, and has been grappling with limited joint mobility, muscular degeneration, and difficulty maintaining flexibility. Regular physical therapy helps her achieve some level of normalcy.
But without a medical breakthrough, Katie expects that her ability to function on her own to last only into her late 40s, though her life expectancy could be several decades longer.
Since the age of 10, Katie has used a motorized wheelchair as her primary mode of transportation. She requires a personal care assistant for some everyday tasks like getting dressed, cooking, and reaching things that have fallen to the floor.
Despite her disability, Katie has created a largely independent lifestyle for herself. She graduated from college and financially supports herself through her work as a data analyst. She lives in a downtown apartment without full-time caregivers, and she serves as a ”Mustard Ambassador” to the state of Minnesota (yes, seriously).
Just like many young adults, Katie is learning to navigate the choppy waters of finance: health insurance, disability insurance, and budgeting.
Katie needs to prepare for high medical costs, a longer retirement, and hopefully to help her godson through college, in less than three decades, while she can still be productive.
The challenge is monumental, but Katie is up for it.
Or, perhaps it is better to say that Katie and her support network are up for it. Katie is quick to point out that her success in transitioning to independent adulthood isn’t her own. From the age of 2, when her parents noticed that she wasn’t walking or holding up her head well, they began advocating on her behalf.
When she received her CMD diagnosis at age 4, the first thing that her parents did was to get in touch with her Medicare caseworker. They stayed up to date via the Muscular Dystrophy Association (MDA) and the Social Security Administrations’ (SSA) websites and with online medical resource forums to be sure that they were giving the best care to their daughter.
Not only did Katie’s parents advocate for her, Katie’s parents taught her that self-advocacy needed to be her strength.
Even in kindergarten, Katie knew to explain to others that she needed help opening doors (they were too heavy for her), and that she needed to be at the front of the lunch line in order to finish her lunch in time.
Katie’s parents emphasized that seeking help wasn’t a weakness, and that asking for help was a strength.
They taught Katie not to assume that other people knew what she needed, and instead taught her to ask explicitly.
Katie’s tightly knit family including her sister, her cousins, and her aunts and uncles (along with close friends from her school and church) worked together to make sure that Katie has access to the best quality of life possible. From the time she was young, Katie always felt that she had a good chance to live a somewhat normal and healthy life, and so far that’s been the case.
In my next blog, I will share with you tips on navigating through the resources available to a disabled person and how to get the most from them.
