Tag: Life with a Disability

Personal experiences, challenges, and triumphs of living with a disability, from daily routines to navigating societal barriers.

  • Kalo’s Ninth Life: A Cat’s Perspective on Dogs and Destiny

    Kalo’s Ninth Life: A Cat’s Perspective on Dogs and Destiny

    Dogs—you can’t live with them, and you can’t live without them.

    Kalo the cat had been living with Surley for over a year now, ever since the silly human on wheels brought the dog home. From the moment Surley arrived, Kalo knew he was going to have to put up with this big, clunky creature.

    The Dog Problem

    This wasn’t the first dog Kalo had to endure. The one before, Dempsey, had been just as bad—loud, clumsy, and completely unaware of personal space. When Dempsey was gone, Kalo had the house to himself for a blissful year, but then Surley arrived, shattering his peace. Dogs never seemed to learn. They stomped around without watching where they were going, their massive paws a constant threat. And when they got excited, whatever few brain cells they had seemed to vanish entirely.

    From the very first visit, Kalo knew Surley would be trouble. This dog was unlike any he’d seen before. Yes, he seemed like a better working dog than Dempsey, but he always had something in his mouth—his favorite blue turtle, a bone, or whatever else he could find. Kalo feared the day Surley might decide he looked like a chew toy.

    Surley also loved playing fetch. The humans would throw almost anything, and the dog would chase it. If the ball bounced, Surley would leap into the air and catch it mid-flight. Watching Surley’s obsession with fetching gave Kalo an idea—one that could rid him of the dog once and for all.

    Putting the Plan into Action

    The human who frequently stepped on Kalo was gone for the day. Good riddance. That one constantly yelled at him for being on the table or getting in the way. What the human didn’t realize was that Kalo was actively working on getting rid of him, too. The human made him earn his tiny can of wet food every morning. The audacity.

    With that human gone, it was just Kalo, Surley, and the human on wheels. That human never left Surley home alone with Kalo—not for long, anyway. Either Surley was with him, or he was locked away in what Kalo called doggy jail.

    Kalo suspected the human knew the truth: if given the chance, Kalo would absolutely take out the dog. The only time he ever left the two alone was when he had to run downstairs for a quick errand.

    Today was that day.

    As the human wheeled out of the apartment to retrieve a package (hopefully something for him for once), Kalo put his plan into motion. The window was open, and the weather was nice. Surley’s ball, recently used in another endless round of fetch, sat conveniently on the coffee table.

    Perfect.

    Kalo batted the ball with casual interest, knowing it would grab Surley’s attention. The dog, ever the fool, perked up immediately. Finally, the cat wants to play!

    Kalo knocked the ball toward the window.

    Surley launched after it.

    The ball hit the window screen and tumbled through. Just as Kalo had predicted, the dumb dog lunged after it without hesitation.

    The Moment of Truth

    For a moment, time seemed to freeze. Surley’s goofy, horrified face was suspended in midair, just like those silly cartoons with the fast bird and the clueless coyote. His paws flailed, scrabbling against empty air. Then, instinct kicked in. He twisted just in time to catch the window sill with his front paws, his back legs kicking desperately.

    Kalo sat on the coffee table, tail twitching, watching Surley struggle. “This is it. No more being stepped on. No more drool-covered toys. No more giant oaf knocking over everything in his path.”

    Then something strange happened. A feeling Kalo had never experienced before crept in.

    Guilt.

    He remembered the humans’ sadness when Spaz, the other cat, had gotten sick. He remembered how heartbroken the human on wheels had been when Dempsey passed away. For an entire year, the human had been lost in grief. Kalo had felt their sorrow, and though he’d never admit it, he had wished there was a way to make it go away.

    If Surley fell, the humans would feel that same pain all over again.

    Kalo groaned. “This is going to cost me.

    Kalo’s Ninth Life: A Cat’s Sacrifice

    Cats had nine lives. Humans joked about it, but if they only knew the truth. It was rare for a cat to use one, but this situation called for something drastic.

    Kalo slowed his breathing, calming his heart rate until the world itself seemed to slow. Then, he reached deep within himself, feeling the delicate thread of time. He grasped one of his lives and began unraveling the ball of fate.

    Even with his eyes closed, he could feel what was happening. Time reversed. The ball flew backward through the air, re-entering the apartment. Surley’s paws moved in reverse, dragging him safely back inside. When Kalo opened his eyes, Surley was sitting next to him, looking slightly dazed but unharmed.

    Exhausted, Kalo stumbled off the coffee table. Right before he passed out, he felt Surley curl around him, warm and protective, just as the door opened and the human returned.

    As Kalo drifted into unconsciousness, one thought crossed his mind.

    Maybe the dog wasn’t so bad after all.


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  • How Policy Changes Could Impact Disability Support Services

    How Policy Changes Could Impact Disability Support Services

    I have been receiving support services through personal care assistant (PCA) hours for over twenty years. Over this time, I have worked with many different PCAs, each bringing unique skills and compassion to their work.

    My first PCA, Colleen, was a warm face every morning and evening. She helped to keep my apartment looking clean. She made sure I had plenty of food in the refrigerator. I could easily grab it after coming home from a long day of college classes. She had been a PCA for a long time and knew the ins and outs. She even helped me find resources to cover medical supplies. Until then, I had been paying for these out of my own pocket.

    Towards the end of our two years working together, I was finishing my two-year degree. We grew close and became good friends. I don’t keep in touch as much as I’d like. However, I think about her from time to time. I thank her for everything she did.

    My current PCA, Jason, and I came to work together in a unique way. He has been a longtime friend and now current partner. When I could no longer afford to cover the cost of my apartment, I asked him to move in.

    He saw firsthand the struggles I had keeping staff. He was there when a PCA quit on her first day. She quit because she saw we had a cat. We explicitly told the agency that any person who works in my home must be okay with cats.

    Jason was there when the staff would show up late or not show up at all. He often filled in without being paid. I was getting frustrated with the issues. He needed the extra cash. So I asked him to officially work with me, and we’ve been doing great ever since.

    These experiences highlight the invaluable role PCAs play in my life. They make it possible for me to live independently. I can focus on the things that truly matter. These hours have allowed me to live independently and use my energy in meaningful ways.

    The Importance of Personal Care Assistants (PCAs)

    Before I had PCA hours, I had to complete a vast majority of the housework on my own. For most people, this is not a huge problem, but for me, some of these tasks can be extremely draining.

    The Challenges of Daily Tasks Without PCA Support

    Take laundry, for example. Before I had PCA services, I had to drag the laundry basket to the washing machine down the hall. Then, I struggled to load a basket’s worth of clothes into the machine. Once it was finished, I had to stand next to the machine to unload the clothes into the dryer. The easiest part was getting them out of the dryer and back into the basket. Then came the long drag back to my apartment. By the time I got everything folded and put away, I was ready for a nap. Many times, I would get the clothes washed and dried. However, they might have to wait to be folded. I had more pressing tasks, such as getting groceries for the following week.

    Out of all the household tasks, grocery shopping was by far the hardest. This was before online ordering and home delivery became widely available. I would have to take the paratransit to the local grocery store. I could only purchase what I could carry on my lap. If paratransit was not an option, I would wheel my manual wheelchair to the store.

    By the time I got back home, I was exhausted. I would often develop blisters on my hands. This happened even though my dad gave me a pair of fingerless gloves to use.

    My family would sometimes make the hour-and-a-half drive to see me. Most of the time, they would also take me to the store. This allowed me to buy a large supply of food.

    Now that I have PCA hours, I worry about losing them. If they were cut back, it would significantly impact my overall well-being. However, I do not foresee this happening for me.

    Unlike many who rely on PCA hours, my PCA lives in the home with me. This means I do not have to worry about whether they will show up. I do not have to worry if the agency can find someone to fill in. This is important if the usual staff is unavailable.

    The Impact of Immigration Policies on Caregiver Availability

    Minnesota Star Tribune article highlights a critical issue. Minnesota relies on immigrant and refugee workers to provide essential care. These individuals care for those with disabilities, chronic illnesses, and the elderly.

    A 2024 study by the Minnesota Department of Employment and Economic Development states an important fact. Over 20% of direct support professionals in the state are immigrants.

    The demand for home health aides and personal care assistants is projected to grow by 25% over the next decade. However, workforce shortages persist. High turnover rates exceeding 50% annually contribute to these shortages.

    Many current and potential caregivers are immigrants. They come from countries such as Liberia, the Democratic Republic of the Congo, Ethiopia, and Somalia. Restricting new entrants from these regions could severely impact the availability of qualified personnel in the caregiving sector. It would worsen the existing workforce crisis. This could leave thousands of individuals without critical support. Many individuals would not receive essential care for disabilities, chronic illnesses, and the elderly.

    These direct support professionals are indispensable in delivering daily assistance and ensuring the well-being of vulnerable populations. However, recent federal immigration policies, including increased deportations and the suspension of refugee resettlement, pose significant challenges to this workforce.

    Medicaid Waiver Cuts and the Risk to Independent Living

    Another Minnesota Star Tribune article highlights concerns among Minnesotans with disabilities. These concerns are about proposed state budget cuts to Medicaid waivers. These waivers are essential for funding services that enable individuals to live independently. They cover costs for personal care assistants, specialized equipment, and transportation not typically covered by insurance.

    Governor Tim Walz has proposed capping annual inflationary increases for these waivers at 2%. This is a significant reduction from the current 6% growth rate. This proposal aims to address a looming budget deficit projected for 2028. The shortfall is partly due to higher-than-anticipated Medicaid spending on disability services.

    However, advocates argue that such cuts could compromise the quality of care. They could force individuals into institutional settings. This would reverse progress made in supporting independent living for people with disabilities.

    “My brother sacrificed his limbs to the caregiver shortage”

    Real-Life Consequences of the Caregiver Shortage

    These staffing shortages are more than just an inconvenience for those who rely on these services. They can be a matter of life and death. In the fall of 2022, Dennis Prothero lost his legs due to a shortage of care workers.

    Paralyzed from an accident in 2004, Dennis required assistance with daily living skills. In the summer of 2022, he lost his vital caregiving support. As a result, he was forced to spend 24 hours a day in his wheelchair. The constant pressure led to severe sores. These sores went untreated due to the lack of available staff. Ultimately, this resulted in an emergency amputation to stop the spread of infection. Dennis’s older sister, Gayle King, told the Minnesota Star Tribune, “My brother sacrificed his limbs to the caregiver shortage.”

    Unhappy Ending

    Tragically, this was not the end of Dennis’s story. He was weakened by surgery and a prolonged hospital stay. Then he contracted bacterial pneumonia and COVID-19. These illnesses ultimately claimed his life in early December 2022. He was 68 years old.

    Dennis was more than just a statistic. He was a son, a brother, a father, and a friend to many, including me. We never met in person. However, we chatted online over the years. We bonded over our shared love of photography, cars, and our service dogs from Can Do Canines.

    What Can Be Done to Address These Issues?

    If these changes at both the state and federal levels were enacted, I would not likely be affected. I have live-in staffing. I do not rely on any of the programs the governor is looking to trim. However, I know that countless friends and loved ones could be affected.

    Changes are necessary to ensure financial sustainability. However, those changes should not come at the cost of some of our most vulnerable citizens.

    Sources