There are a lot of things people with a spinal cord injury worry about when their Medicaid is suddenly changed in any way. It could be suddenly more expensive, with the co-pays out of control. Or they could be deemed “not disabled enough.” And worse, this is a trend we’re seeing across the country. What’s a person with an SCI to do when they live in a state that’s greatly limiting their coverage or eligibility status?
It’s time to get creative; that’s what.
Life is all about out-of-the-box workarounds and the solutions we’ve seen from people with SCI can’t be beat, even in the world of health insurance. One of the smartest workarounds we’ve seen is from Jenny Weast, a C5 quadriplegic from California, who had her Medicaid cut two years ago due to an increasing salary at work. She refused to quit her job as a high school teacher, and as a result, she priced out of even California’s Medicaid Buy-In program.
Fundraising
Her level of injury makes her fully dependent on PCA's morning and night in order to get ready for work and to get in and out of bed. Without them, she cannot do her job or live alone in her home. Instead of looking to her family to help her with caregiving after her Medicaid was cut, the community at her school helped fundraise money for her caregivers, which paid for them for the entirety of last year. But even Jenny knows this generosity can’t last year after year and worries she won’t be able to raise the $50,000 needed each year to pay for them.
If you can swing a fundraiser like Jenny, definitely do so. Unfortunately, not everybody has access to such a generous community, and also this isn’t the most permanent solution. Even Jenny says she should talk to a special needs trust lawyer, which is something you should do as well when you find yourself in a similar situation. Special needs trust lawyers are adept at coming up with creative solutions to allow you to both keep your healthcare and work, which many quads want to do.
Trading Room & Board for Caregiver Services
Another option is to pay for your caregivers by allowing them to live in your home for free; a type of room and board/trading-for-work situation. While this isn't the most ideal since not everybody wants to share their home with their caregivers, it is an option that many people actually do. You can also search for candidates who are in nursing programs to be your live-in caregiver. Nursing students make great roommates.
And the loss of caregivers isn't the only worry that comes into play when a person with a spinal cord injury suddenly loses their Medicaid coverage. Many people have to put their wheelchair repairs on hold, as well as repairs of other medical equipment. Nobody will want to fix your wheelchair if you do not have the proper health insurance, and this can be highly problematic when your wheelchair suddenly breaks.
To be safe, always have a credit card on hand if you find yourself in a no-insurance situation when it comes to wheelchair repairs. This can be one of the scariest aspects of not having Medicaid. Our wheelchairs are our legs. Without them, we’re even more disabled.
How have you had to get creative after your Medicaid coverage was cut? Let us know in the comments below; we'd love to see some more ideas!
