I know I’m getting old, but I’m not there yet. 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. In addition to the nursing shortage, it’s also difficult for me to find a home that is accessible for wheelchair users. The reality for many in my situation is a nursing home, where your freedom is stripped from you. 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. In between their shifts, my parents care for me – but they are pushing 70. It’s impossible to find people, and our nursing agency continues to look without luck. When you can make triple working at a hospital, why would you do home care? That means I only have 2 nurses. Due to lack of funds going to Medicaid, they are unable to pay skilled nurses enough for home care. 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. I can’t live on my own because I always need a nurse or family member nearby due to my medical needs. Why should we have to decide between getting out of bed in morning and having a job?Įven 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. Disabled people are often forced to choose between having their basic healthcare needs met and being able to afford a home, entertainment, and socialization. This is incredible, as many states do not have such a program. 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. 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). 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. My life is pretty normal, as I work full time, have a romantic partner, and spend too much money on books and DoorDash. Since I’ve been disabled my whole life, this is not a big deal to me. 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. At 13, after contracting pneumonia, I spent four months in rehab and got a trach. At age 3, I got my first wheelchair – and my folks ensured our home was accessible by widening doorways and building a ramp. When I was a year old, I was diagnosed with Muscular Dystrophy, a disability that weakens your skeletal muscles greatly over time. In fact, it may have to remain a dream since, as a disabled person, the Medicaid crisis impacts my choices greatly. While I love my folks and adore my bedroom, my own place would be a dream. But at almost 40 years old, I am still living with my parents. 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. One day, I would love to have my own home – 2 bedrooms and an office I’d turn into a library.
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