One Can Only Dream: Medicaid Limits to Homeownership
by Erin
by Erin Hawley
One day, I would love to have my own home – 2 bedrooms and an office I’d turn into a library. The kitchen can be small, and there doesn’t really need to be a huge backyard since I hate going outside; I’d be fine with a big window to sit by while I read. But at almost 40 years old, I am still living with my parents. While I love my folks and adore my bedroom, my own place would be a dream. In fact, it may have to remain a dream since, as a disabled person, the Medicaid crisis impacts my choices greatly.
When I was a year old, I was diagnosed with Muscular Dystrophy, a disability that weakens your skeletal muscles greatly over time. At age 3, I got my first wheelchair – and my folks ensured our home was accessible by widening doorways and building a ramp. At 13, after contracting pneumonia, I spent four months in rehab and got a trach. Because I still have the trach, I am reliant on my family and skilled nurses to perform all activities of daily living, such as putting me on the ventilator every night, clearing my airway as needed, dressing me, bathing me, and toileting.
Since I’ve been disabled my whole life, this is not a big deal to me. My life is pretty normal, as I work full time, have a romantic partner, and spend too much money on books and DoorDash. Owning a home is something I want to add to that list; it’s within my budget, but I am still held back by systems in place that limit my choices.
New Jersey recently implemented changes to its WorkAbility program, which allows people receiving Medicaid to make over the income limit imposed by it normally (around $1600 per month). I can make much more ($78k/year) and have no limits on assets – meaning I can save money and buy a house without worrying about my benefits. This is incredible, as many states do not have such a program. Disabled people are often forced to choose between having their basic healthcare needs met and being able to afford a home, entertainment, and socialization. Why should we have to decide between getting out of bed in morning and having a job?
Even as someone who received Medicaid nurses through WorkAbility, and who has a job to sustain them, I am still living in my parent’s home. Why?
I can’t live on my own because I always need a nurse or family member nearby due to my medical needs. I have the nursing hours to cover waking me up and putting me in bed every day, but I don’t have the amount of nurses needed to cover those shifts. Due to lack of funds going to Medicaid, they are unable to pay skilled nurses enough for home care. When you can make triple working at a hospital, why would you do home care? That means I only have 2 nurses. It’s impossible to find people, and our nursing agency continues to look without luck. In between their shifts, my parents care for me – but they are pushing 70. What happens when they are unable to care for me? I have a romantic partner, and they will be able to do some of the care – but not all of it, due to their own disabilities. The reality for many in my situation is a nursing home, where your freedom is stripped from you.
In addition to the nursing shortage, it’s also difficult for me to find a home that is accessible for wheelchair users. Sure, I can buy a home, but can I get in the door? Can my wheelchair squeeze down a narrow hallway? Can I pull up to the sink? In my experience, the only homes that meet these needs that I could find are in 55+ communities. I know I’m getting old, but I’m not there yet. And if I were to buy a home and fix it up to make it accessible, that would add significant costs that I may not be able to afford.
For disabled people who don’t work, whether because of their disability or because their state does not have a program like WorkAbility, homeownership is near impossible due to costs and Medicaid income limits. According to a survey from FreddieMac, 51% of disabled people who want to buy a home said they do not have enough money for a down payment and closing costs. As housing prices continue to rise, everyone is struggling – but the additional burdens we put on the disability community make it even worse.
Even though everything seems to be working against me and other disabled people wanting to own a home, I believe we can enact changes in systems to make it a possible reality rather than something you can only imagine. We need to advocate and contact our representatives to let them know Medicaid needs funding, desperately. We need to ensure a percentage of new homes being built meet accessibility standards.
If you think this doesn’t apply to you, remember that anyone can acquire a disability at any time. And even if you never do, everyone benefits from having disabled people living in the community rather than a nursing home.
Everyone’s futures are uncertain, but for disabled people, the uncertainty and instability of Medicaid leads to greater limitations on our possibilities. It takes away our agency and joy. It means we are ostracized from communities and othered by society. We all deserve freedom and choice.
That freedom and choice we desperately need may one day be realized – and then I can bask in the glory of my dream personal library.
Erin Hawley is from Keyport, New Jersey, and works as the Communications and Digital Content Producer for Easterseals National. She is also a content producer for her YouTube channel From Erin’s Library, where she shares her bookish opinions, travels, and family life. Erin runs the Disability Readathon with her friend Anna, which focuses on authentic disability representation in media. She is also a gamer, and has worked with companies like Microsoft, Logitech, Adobe, and Electronic Arts to ensure accessibility and inclusivity is not an afterthought. Erin’s work has been featured in The New York Times, USA Today, HuffPost, and other publications.