#EveryoneDeservesCare: Allie's Perspective

October 12, 2022 / #EveryoneDeservesCare

Allie enjoys the simple things in life. She loves concerts, her service pup, and helping others. Her days are filled with life and love and just like everyone else, she needs help. Allie is a C5, C6, and C7 paraplegic, and requires around an hour and a half of care in the morning and 20 minutes of care at night. These services are covered by Ohio’s Medicaid-funded waiver program and allow her to be a productive, happy person. Allie compares her relationship with her service providers to working as a team, for both of their benefit:

“At the end of the day, I’m just trying to do the same exact things that you’re trying to do. I’m trying to wake up and be productive and take advantage of every part of the day that I can–in the best way that I can. Just like they need help in certain departments of their lives, I need help in these departments of my life. So, if we can just take that at face value and we can negate those needs for each other it just makes for an easier working relationship.”

Allie does not see herself as a typical boss towards her service providers, but rather recognizes the many benefits of interacting with those with different life experiences.

“You’re not my worker, I’m not your boss. You help me; I’m going to help you gain perspective and see what it’s like (living with a spinal injury). Something like this doesn’t discriminate and something like this could happen to you or one of your people,” says Allie, while explaining her patient-care-worker relationship.

Allie’s direct care struggles really began when the COVID-19 pandemic swept the United States. Her main provider was forced to step down from her position to protect her family, leaving Allie scrambling to find help.

“If nobody comes, I become a depressed nightmare. Without that extra pair of hands, I can’t get out of bed,” remarks Allie, while recounting her lived reality without direct care.

To reiterate, if no one comes in the morning Allie is stuck in bed all day. Without her morning stretching, her mobility is extremely low, making it unsafe for her to move around her own home. Allie is fortunate to live with her parents; however, as her parents have aged, it has become more and more difficult for them to assist her.

A frustrated Allie notes, “the point of the waiver program was for me to still be at home and not affect my family relationships.”

Allie will usually have to wait for her friends to get off work to come get her out of bed. She expresses, “There’s nothing worse than feeling completely powerless. I can’t do it myself, and I’m at the mercy of a complete stranger or one of my friends.”

Allie is proactive in the fight to retain quality care workers. She works hard to befriend them early on, not only to make their job more pleasant, but to try and prevent them from leaving.

Allie is a major advocate for spinal cord injury research. She has found that involving “her girls,” as she affectionately refers to her care providers, increases their understanding of her life experiences. As a result, they become more invested in their work and their empathy towards those that they help increases. Allie believes this is a key part of long term, high-quality care.

But Allie also recognizes that more change is needed than just an increase in empathy. New care workers come to her extremely underprepared, with little to no real-world experience. One important shift she would like to see is an increase in paid meet-and-greets to allow providers and people who need direct care to get to know each other before officially starting work. “I just wish for a little more compassion and humanity … At the end of the day these are human beings that you are helping start their day, which is a part of their life.”

Despite the challenges of the direct care work crisis, Allie feels lucky: she recognizes her privilege compared to others with less support, access, or income.

“I’m very fortunate. I get to take a shower every day, get out of bed every day. I get to go outside and count the cars and watch my dog.”

Service providers keep people who need direct care, such as Allie, out of nursing homes; they play an integral role in the lives of disabled people. Through her spinal cord injury support group, she has met many people with negative nursing home experiences.

“It scares the living daylights out of me to think what life would be like [if I could not be at home],” says Allie.

Direct care workers allow Allie to stay in her home and community, and it is important to her well-being, that her life stays this way. “My days are filled with life and love with my service pup.”

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