INSTITUTIONALIZED LIVING
If you don’t have the support at home, or the financial means to survive the economy independently, you might have to look into a facility. Unfortunately this is the case for many of us complete quadriplegics. While we do have a constitutional right to community-based care, a lack of accessible and affordable housing units still forces many into nursing homes against our will. Financial burden is cited by many many quads as a primary barrier to maintaining independent home-based care.
Skilled nursing facilities
SNFs are typically the last option for quadriplegics, or anyone really. They’re a lot like living in a hospital. They’re always understaffed, noisy, and if you’re young, the environment can feel particularly depressing. Wait times for help can be very long, and living in a nursing home increases the risk of experiencing a pressure wound too.
There are a few pros despite the cons. With nurses on every shift, there’s always professional help if something goes wrong. A staff member is always awake to assist you. You don’t need to buy supplies or food.
Skilled nursing facilities are expensive. The national median monthly cost for a private nursing home is more than 100K per year. Private insurance isn’t cheap either and Medicare typically doesn’t even pay for a whole month. The majority of nursing home residents pay with Medicaid.
Medicaid recipients are typically charged their whole SSI or SSDI check with the exception of the first $60 each month. (2026 data)
In some states it’s a little more. Medicaid pays the rest and allows few exceptions. You may be able to show that your income is needed by your spouse or a dependent child, or to pay off old medical bills.
If you’re going to live in a skilled nursing facility as a quadriplegic you’ll have to advocate for yourself and the care you need. Don’t allow your care to be compromised by overworked aides. Reach out to the director of nursing if you’re worried about the quality of your care. If problems persist you may want to contact your state’s ombudsman.
A nursing home ombudsman advocates for residents by investigating and resolving complaints about abuse, neglect, and poor care, ensuring their rights are protected, and working to improve facility conditions through education, advocacy, and sometimes reporting serious issues to outside agencies. They offer free, confidential help with issues like staffing, dietary needs, dignity, and discharge problems, acting as a liaison between residents, families, and facility management.
I once stayed in a skilled nursing facility where I was denied my Range of Motion exercising with the excuse of understaffing. When I expressed my contracture concerns to the director of nursing she told me, “You do know that you are going to deteriorate anyway.” I told her I was pretty informed about spinal cord injury and with adequate therapy I didn’t have to suffer severe spasms and contracture. I asked for a mere 15 minutes a day.
Our lives and our bodies still matter. You must be your own advocate! Do NOT settle for subpar care. (Take it to the top though. The industry is exploiting low wage workers, too.) The skilled nursing industry doesn’t have our best interests in mind. The vast majority are out to make a profit and the few that are not take much better care of their residents.
Assisted Living
In between in-home care and nursing home care are community-based services. Every state is different, and your State Medical Assistance office will be the best source for specific eligibility information.
Assisted-living homes are community-based services and a much better alternative for long-term living, though they are not without their own (and some of the same) issues.a
In assisted living homes the personal care attendants cook, clean, and provide personal care. You may be able to come and go as you please though the house will probably have a curfew. You will likely have more quiet and privacy then in a skilled nursing facility though this varies greatly. Assisted living homes typically do not have nurses on-site, but Medicaid will pay for home health nurses to regularly visit those who are on Medicaid.
Some assisted living homes offer more one-on-one care. However, other assisted living homes are not equipped to work with residents who require a high level of care. In some assisted living homes owners employ staff with the intention of overworking them. In many cases they live in the home as well. Homes in which caregivers don’t live on-site tend to run smoother for residents, as staff come in for work rested. Exploitation of live-in caregivers, particularly migrant women, is unfortunately very commonplace in the US.
Like skilled nursing facilities, most assisted living homes seek to turn profits and may cut many corners in resident care to that end.
If you’re on Medicaid, private rooms in both nursing facilities and assisted living homes require physician orders and must be medically necessary, unless a facility makes an exception.
No matter where you end up, most insurance plans do not cover any additional occupational or physical therapy beyond the first year post-injury. You’ll have to advocate for yourself and persuade the facility to provide that care. A physician note may help.
Tour some homes and apply for those that may work for you.
“I moved into Assisted Living after my mom, who was my main caregiver, started experiencing health problems in her early sixties. I’d had caregivers coming in too but I couldn’t pay for the hours I needed. The first place wasn’t great because they were under-staffed and their food was bad. The place I’m at now is better but the residents are all elderly. I imagine if I had my own room it would be better.” Celeste, C6
“Group home life isn’t bad if you find one that’s a good fit for you. Just remember you have a right to good care and if you’re not getting it you can call your ombudsman. I lived in one [assisted living] home where I wasn’t getting help at night because they wouldn’t hire a night attendant. I found out that the law in my state says a night shift aid has to be awake.” Stephen, C5
“I live in an assisted living home. It’s stress free because there are live in caregivers, visiting nurses, and just the one bill to pay. I can come and go as I please except I can’t stay out late because the caregivers need to sleep.” Kevin, C4