Making Us Work For It

Katie was born with Ehlers-Danlos Syndrome, a condition that affects almost every system in the body and is extremely complex to treat.

Katie says that her joints are so prone to dislocation that she often doesn’t know that something has happened until much later. “I’ve dislocated shoulders turning over in my sleep, fingers squeezing a sponge, and my muscles overcompensate, causing severe nerve damage.”

After she graduated from UC Berkeley in 2005, she struggled to find any kind of job with insurance. She eventually landed a position with a lawyer who was on Medicare and he offered to pay for her premiums on the individual market. Unfortunately, Katie was deemed uninsurable because of her pre-existing condition. She then applied for coverage in California’s high-risk pool, where there was a 15 month waiting list. While she waited for coverage, she utilized Planned Parenthood and other health clinics in the San Francisco Bay Area, though she was often told she made “too much money” to be able to utilize their services.

Katie eventually decided to apply for graduate school and was accepted into a program in Wisconsin. She says that the demands of the program exacerbated her condition, causing her pain so extreme her flesh “felt like it was burning”, and she ultimately developed Postural Orthostatic Tachycardia Syndrome. She found herself increasingly needing to use a wheelchair to get around.

In 2015, Katie qualified for SSDI and Medicaid. Through Medicaid, she has been able to access doctors in Madison that finally have her condition somewhat manageable. She receives weekly lidocaine infusions at a clinic and she is scheduled to have an outpatient surgery in the coming months that doctors believe will provide her some relief.  “I finally have some hope for the first time,” she says.

Mostly, she’s thrilled that her condition is manageable enough that she is in a position to work part-time starting in September. She hopes to continue to improve enough that she can find full-time employment in the next couple of years. Then, maybe, she says she hopes that she can afford a plan on the private market.

All of her plans could be thrown into chaos if there are cuts to Medicaid. Katie says that she’s worried that changes will limit her access to her doctors or that she will no longer be able to receive treatment. If that happens, she says she will go back to constant, unbearable pain.

In 2019, Katie said the proposed work requirement for Medicaid recipients in Wisconsin worried her because she may not be able to work as many hours that may be required to keep Medicaid. Katie said she would love to work full-time if she could. But she said her doctors can only make that determination.

“This [Medicaid work] requirement is supposed to be aimed at helping people out of poverty and making people more self-sufficient. But I have multiple medical conditions that make it hard for me to work a set number of hours every month. And the requirement is an all-or-nothing thing. You either work those hours every month or they kick you off. I’m basically being forced out of work because of the way the program is being structured,” said Katie, who is awaiting a disability determination that could exempt her from the work requirement. “I don’t know what will happen to my Medicaid benefits in the interim, if this new rule goes into effect.”