ID: The words New Blog Post in the upper right hand corner, beside the title What it’s like to work with a caregiver. Beneath is a graphic of a person of color with short, white hair using a cane beside a white person wearing white scrubs.
Support systems are essential for chronically ill and disabled people. Sometimes this support can come from family and friends, other times from personal care attendants and caregivers. With little media representation, it can be hard to imagine what a caregiving relationship is like, how it's formed, and how people access care. I hope this post helps to make this often vital relationship for disabled people a little clearer for everyone else.
When dealing with paid caregivers, chronically ill and disabled people are often paired with insurance approved agencies that provide caregiving, usually through Medicaid. As a disabled person with Medicaid in Washington state, I was sent a list of caregiving agencies in my area. A caregiving agency connects disabled and chronically ill people with trained caregivers. The agency usually works to staff as many hours as has been approved for their client. Any hours that have been approved that don’t get scheduled is money the caregiving agency is leaving on the table. Even before the pandemic, I have never been able to staff all of my hours. Now the situation seems much worse. This year, it took over a month to set up a meet and greet with a potential, new caregiver.
A meet and greet is a shortened shift, usually 30 minutes to an hour. Generally new caregivers come to your house to meet you, ask questions, see your home, and decide if they want to work with you. For four months I was working with an exceptional caregiver, after having to pause caregiving due to the COVID-19 pandemic. I had been without any caregiving services for about 20 months. Her support made it possible for me to focus on doing the things I needed to do to care for myself, like exercise, relaxation and meditation, socializing, and working toward my goals. Specifically, caregivers support me by doing difficult things that I cannot do like laundry, mopping, changing my sheets, driving me to certain appointments, and carrying groceries. They also do a lot of things that make my life better, like food preparation, medication reminders, behavior modification reminders, and general housekeeping. The sheer amount of things that I no longer have to think about has been a huge relief. And if you’re lucky, caregivers become friends. When you’re spending many hours a week together you swap stories, go on adventures together, and learn about each other. My last caregiver and I both love plants and our dogs. We often shared dog treats and natural pesticides. The difference in my quality of life was huge.
The lack of available, trained caregiving staff can put chronically ill and disabled people at risk. For many months, I was trying to get a caregiver 5 days a week. In August, I was told by the caregiving agency that they were advertising my needs to their caregivers, but as someone who was receiving any care, I was not a priority. For the entire month of September, the agency was able to staff 30% of the hours the state government has decided I need for support. My previous caregiver informed me that the agency keeps different lists of client advertisements based on region and that most lists are now more than fifteen pages long. That’s fifteen pages of people in a small region that need more care and support. In addition, the pandemic meant many places stopped in person training for new caregivers, exacerbating the issue. Mike Reardon, the executive director of the Area Agency on Aging & Disabilities of Southwest Washington said, “Now it is at the crisis level with individuals waiting two to four months for a caregiver.”
In the past, I have worked with five other caregivers. Some were excellent, some were less so. Unfortunately, caregiving doesn’t usually offer the competitive compensation and perks that these caregivers so deserve. All of my caregivers have been mothers repurposing their skills. Many caregiving companies report shortages in staffing due to low wages and high turnover rates that have only been exacerbated by the COVID-19 pandemic. This puts disabled people at increased risk. "This crisis is going to erupt into unsafe, unhealthy situations,” reported Whitney Fuchs of InCommunity, an Atlanta-based community services provider, in the previously linked article. He went on to say, “there have been adverse patient outcomes.” For example the person my caregiver was previously working with has not been able to find a new caregiver. That is four months without any support.
My previous caregiver split her week between me and another family. She also gave one older gentleman a weekly bath and picked up shifts getting groceries for other clients in need. Unfortunately, one of her other clients was diagnosed with cancer and began chemotherapy. Luckily, he is responding to treatment and his practitioners are hopeful. Due to this, she informed me that she would not be able to work with me for the next 4-6 months as she works to help him through chemo. This is a particularly dire situation, and her choice speaks to her caring soul. While I am truly heartbroken to see her go and unsure what the next half year might look like for me, I understand and respect her decision.
The caregiving agency updated my profile and posted my needs for new caregivers to find me. I was told they were hopeful that a caregiver would choose me because I am more “functional.” I don’t currently need physical mobility or hygiene assistance. Disability hierarchy is harmful to all of us. Labeling some people more “functional” than others is stigmatizing and dehumanizing. However it is true that different people have different support needs. As someone whose support needs are considered fairly easy to manage, I have a higher likelihood of receiving care. And even then, I have never been able to fully staff my hours. It’s been almost two months since my caregiver gave notice and the agency updated my advertised needs. They asked that I seek out other agencies to work with, going so far as to notify my state case manager that they were unable to give me the support I need and deserve. In addition to the added work I need to do to keep myself and my home functioning, I had to continue to seek out a caregiver by all possible avenues. Last week, I finally had a trial shift with a new caregiver. She is only able to work with me twice a week, which covers under 35% of the support hours that I need and am approved for. I am so grateful to have any support. However I am aware that having that support means that staffing my remaining hours will not be prioritized. 35% may be all the support I get for now.
For some, like stand up comedian, actor, and disability activist Steve Way, getting approved for the hours they need is the problem. Way has a form of muscular dystrophy that is so rare, he is the only documented case globally. While he was approved for 60 hours a week, it still leaves him alone for hours every day. He has been fighting for an additional 24 hours of care per week. “I’ll still be alone. I’ll still go without going to the bathroom or eating. There will be times where I’ll need suction or I might choke,” Way was quoted as saying. In an interview with GQ, Way described how challenging maintaining eligibility to access caregiving can be. “Private insurance does not cover personal-care assistance at all. You can only get the at-home care I need on Medicaid, which means I can't have more than $2,000 in my bank account at any given time.” Way is currently acting in Hulu’s Ramy and working on a show for Apple TV about navigating disability. He went on to say, “I have zero credit. The money I make goes into an LLC that's basically not attached to me. I just don't touch the money. To get out of this, I'd have to basically make enough money to where I could just pay my personal-care assistant out of pocket—and that's a lot of money.”
Some days I feel myself shutting down, like a slinky that stops to rest in completion only halfway down the stairs. It’s hard work fighting to get the care I have been approved for and need. But it can be especially hard to continue advocating for myself when I can plainly see how many people are also struggling, some with even less resources. For me, caregiving is a lifeline. It provides the support that allows me to actively engage with myself and my community. I’m lucky enough to be able to survive even without that necessary support. But that isn’t the case for everyone. Caregiving support is a vital part of accessibility and life for many disabled and chronically ill people. Caregivers deserve higher reimbursement rates and better job benefits. Chronically ill and disabled people deserve the support they need, both bureaucratically and tangibly. Please acknowledge and thank the caregivers in your life. Shifting the narrative around disability and caregiving is the first step toward building better care systems for us all.
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