Written by Cassandra Brandt, December 16, 2022 for Spinalpedia.com. (Cassandra Brandt is a C4 quadriplegic and mom from Arizona. She writes for Ability360.org and is the author of “Iron Girl: a memoir”)
When you have a spinal cord injury, your level of care depends on your level and severity of injury. In many cases, individuals who have sustained an SCI don’t have the family or finances to live independently. Our choices are assisted living homes and skilled nursing facilities. These institutions don’t have great reputations. Instead, under-staffing and compromised care is typical.
Before moving into a facility you can try having caregivers come into your home. Medicaid provides hours through their self directed care plan and you can get your family hired in most states. Often enough hours aren’t provided, or caregiver agencies don’t have the staff, though.
A skilled nursing facility has nurses on staff, which can be beneficial for an acute injury or high level, ventilator dependent quadriplegic. But skilled nursing facilities are infamous for being packed with people nearing the end of life, and it can feel cold and clinical as opposed to warm and homey. Most are intentionally understaffed because they’re for-profit institutions. Food quality is poor, wait time for help inadequate, social isolation dehumanizing.
Assisted living facilities are often better, but lack transparency and regulation, and exploitation of residents and their low-paid caregivers is apparent in their under-staffing practices as well.
How can we make sure we’re getting the care we need in these places?
Tips for moving into a care home
Talk to the admissions about your care plan. Explain in detail the kind of care you need and it’s frequency. Make sure your doctor signs everything. Here’s some things you might not want to forget to add:
• Passive range of motion exercises daily
• A call-system
• Two-person Hoyer lift transfers if needed
• Staff available 24/7
• Sufficient protein to prevent skin breakdown
• Sufficient fiber to regulate bowels
Read the online reviews and take a look at the facility. Make sure to ask a lot of questions.
How many caregivers are on staff? How much time off do they get? That’s important because caregiver burn-out leads to mistakes and compromises of resident care. Some assisted living homes maximize their profits by employing a live-in, salary-paid staff. Sometimes the staff is untrained and underpaid; often the caregivers are immigrants working temporarily in the U.S.
Ask about the schedule. What time will you be required to be transferred into bed? Live-in caregivers may want everyone in bed by 6pm so they can relax. Some assisted living homes may do bed changes every two hours. Others may stretch that time period out. Some may be able to transfer you from bed daily. Others may claim they don’t have the staff.
Some facilities might insist physical therapists should be responsible for passive exercise. Medicaid won’t cover it beyond a handful of visits, though. In order to maintain the body and avoid contracture, caregivers must be willing to exercise your arms, legs, hands and feet daily, if you’re unable to do so independently.
Ask about the other residents. Most people in the long term care system are elderly and on Hospice. People with disabilities are a minority in assisted living homes and skilled nursing facilities. You might want to look for a place with younger people if you’re not ready to room with a bunch of seniors yet.
Self advocacy in the institutions
Communicating our numerous needs can be exhausting. I’ve grown accustomed to that daunted look that creeps across caregiver faces when I begin to reveal my seemingly endless list of needs. Being told I’m “too much” used to burn a little but now I just remind myself it’s not about me. I’m too much for an underpaid caregiver in an understaffed institution. But in a more accommodating society that paid direct care workers well and didn’t exploit them, I’d never be “too much”, even as a C3 complete quadriplegic.
How do I respond? Hopefully gracious and humble for the most part because an entitled attitude doesn’t serve me.
But I do let them know why each part of my care is so essential. And I do ask management to back me up and require of them what I need.
I often say it’s a biped’s world and I’m just rolling in it and it rings true. Even the institutions in place for people in long term care don’t adequately meet our needs. For this reason we always have to be the squeaky wheels seeking grease, advocating for our needs.
Survival in this system is dependent on it.