#EveryoneDeservesCare: Robert's Story
June 22, 2022 / #EveryoneDeservesCare
This story is one of many that will be part of our new series, #EveryoneDeservesCare.
#EveryoneDeservesCare shares real stories from disabled Ohioans that have been affected by the Direct Care Workforce Crisis in order to educate the population and those in power to make change on the dire nature of this issue. Direct Care Workers are people who provide home care services, such as certified nurses, home health aides, personal care aides, caregivers and companions. Factors contributing to a lack of care for disabled Ohioans range from low-pay, inadequate incentives to remain in a care field, and lack of sufficient funding for service systems. Due to the impact of the crisis, disabled Ohioans have gone without their basic needs and wants being met for years. Many have either been forced into nursing facilities or other institutions or have endured a lower quality of life and risks to their health and safety.
Born and raised in Ohio, Robert J. Doersam’s life has been guided by his dedication to learning and his passion for being an active member in the community.
Growing up in the 1950s and ’60s, well before the passage of the Americans with Disabilities Act, Robert had to navigate many barriers as a person with Spinal Muscular Atrophy Type 3 in order to get an education, including having to travel to a neighboring city to attend high school in a more accessible building. For Robert, the hardest part of college wasn’t difficult classes or the heavy workload, but inaccessible classrooms. Still, Robert graduated in 1976 with a bachelor of arts in political science from Ohio Dominican and later completed social studies teaching certification at The Ohio State University.
Robert’s first career was in the Franklin County Prosecutors Office. He’d dreamed of teaching history and eventually getting a law degree, but encountered too many accessibility barriers. Instead he went on to serve the state for over 20 years, first employing his analytic and communication skills as a training officer, and later by working in the IT department of the Ohio Office of Budget and Management.
In order to learn, live, and work in the community, Robert relies on direct care workers to help him with daily living tasks like showering, getting dressed, eating, etc. In order to get to his job in downtown Columbus at 8 a.m., Robert would wake up at 4 or 4:30 a.m.
“Those were the good old days,” Robert says of his time working in offices. “Getting ready took a long time, but I was willing to make the investment to get to work downtown every day.”
In the early 2000s, Robert was struggling to hire and retain enough qualified care workers. Additionally, he began to experience difficultly operating his van’s steering system, which lead to safety concerns in his ability to get to work. He asked his supervisor if he could work part time from home, but was denied, and instead ended up having to retire early in 2006.
As someone who truly enjoyed working – Robert describes the two joys of his life as “family and work” – the decision to retire was not easy.
“I like to think that in a better world, not a perfect world, in a better world, I could get enough care to take care of my medical needs and still be able to work at least part time, if nothing else, from home.”
Nearly 16 years later, Robert is still navigating problems with getting enough care – and they’ve only gotten worse, exacerbated, in part, by the COVID-19 pandemic. In 2020, his lack of care forced him out of his home and into a nursing home, but due to his individualized needs, the environment of a large care facility was dangerous for him.
“I was just left lay in bed until noon-ish, and I was missing meals. I had injuries to my joints because staff did not listen to my needs,” Robert shares. “The treatment you get in those facilities is not humane. People are just basically put in bed and left to rot. I know some facilities do better than others, and the one I was in was not the worst by any stretch, but it was still not able to care for me appropriately. There is a whole booklet on standard of care for people with my disability, and [the nursing home] didn’t even come close to it.”
“I ended up leaving because I was lucky enough to have family who said, ‘Obviously, [the nursing home] can’t provide your care.’”
These days, Robert is back in his home. He has three caregivers who cover daytime shifts while his wife is at work, and one who can cover some night hours. However, he’s not getting nearly enough care and new workers are impossible to find.
While his wife is able bodied and helps provide some care, as she gets older the tasks Robert needs help with become more difficult and dangerous for her.
In addition to leaving work early, Robert has also lost the ability to attend church, something his family did weekly, because it’s just too difficult without caregivers.
“[Not having enough direct care workers] is obviously very limiting” Robert says. “I think if it wasn’t for my wife and my son, I would rather exit this life.”
Then, of course, there’s the obvious health and safety risks that come with a lack of care. Yet, while this crisis persists, having profound impacts on Ohioans, little action seems to be taken by those in charge.
“Policymakers want to turn their heads the other way and pretend the problem doesn’t exist,” Robert says. “I’m here to tell you it’s very real, very real.”