Life is expensive. Living with a disability such as a spinal cord injury (SCI) carries an even higher price tag. There’s durable medical equipment, accessible transportation, personal care attendants. Medical insurance doesn’t always pay for these expenses. In fact, Medicaid is the only insurance that covers long term care at all. “If you’re not broke enough to qualify for Medicaid, you soon will be,” I recall one of my friends in a spinal cord injury support group only half-joking.
My quadriplegic friend was right. People with high level spinal cord injuries require a great deal of assistance with daily living. Our options include in-home care, skilled nursing facility care, and assisted living care. This care is not cheap. A nursing home can cost between 5 and $10,000 a month and assisted living between 3 and $6000. In-home care is not much cheaper, if you need a substantial amount of it. 40 hours a week runs about $2,400 per month.
I qualified for Medicaid when I injured my C3 vertebrae and became paralyzed from the shoulders down in a car accident a few years ago.
I went home to live with family and had caregivers come and to my house for five years, before going into assisted living in 2020. The state would only allow me 40 hours and I just needed more.
Living with a complete, high level spinal cord injury shouldn’t render an able-minded individual unable to live independently but it isn’t uncommon for even young people with spinal cord injuries to be left with no options but institutionalization.
Although Medicaid picks up my bill here I have to chip in. The state requires me to fork over the majority of my Social Security Disability check, allowing me to keep only a personal needs allowance of $115 per month. This meager amount varies from one state to another and is even less if you live in a skilled nursing facility.
I went from paying $1000 monthly on rent for a three bedroom house to $1100 for half a bedroom in an assisted living home. My personal needs allowance isn’t even enough to pay for a storage facility so I sold most of my belongings. Many people with spinal cord injuries find themselves in the position of leaving the comfort of their homes for facility living.
Many skilled nursing facilities and assisted living homes are for-profit, and commonplace cut corners like understaffing and lack of regulation and transparency are a problem in these institutions. I experienced this firsthand in a skilled nursing facility a couple summers ago and I live it daily in an assisted living home now, as I await my turn on a list for a better place.
We must advocate for ourselves to get the care we need. If you need long term care but you don’t think you can afford it, research Medicaid in your state. Medicaid will require your assets and income to be pretty low, but if you own your home they make an asset exception, and you are allowed some income from work.
Once you’re approved to receive services, sign up for the self-directed plan which allows you to hire your own personal care attendants- in most states you can even hire your family members. If you need more care than the hours provided by Medicaid and you find yourself in search of a facility instead, read the reviews carefully, and the fine print of your contract.
If you find yourself in a facility which is not meeting your needs, contact Medicaid, an ombudsman or even Adult Protective Services.
Living with a spinal cord injury is difficult enough. Being financially unstable is hard, too. If we don’t advocate for adequate care despite that financial status, our lives will only be more rife with challenge, getting in the way of our living of quality lives.