Wheels On Down the Road

Category: Society & Politics

Discussions on politics, policies, and social issues at local and national levels.

  • 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

    A 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

  • The Cost of Love: SSI, Marriage, and Disabled Individuals

    The Cost of Love: SSI, Marriage, and Disabled Individuals

    First, I want to wish everyone a happy Valentine’s Day. It is a day for love and lovers, whether you’ve been in a relationship for five days or fifty years. Love is in the air today.

    A Personal Story

    I have been in a committed relationship with the same person for over a decade. Our journey together has not been linear. We started as friends. We dated for a while. We broke up and then reconnected. Eventually, we moved in together when I could no longer afford my apartment. One day, something clicked in my mind, and I realized we were meant to be together.

    From the start, we knew marriage was unlikely. It was not due to a fear of commitment or legal barriers—marriage equality is now the law of the land. Instead, it was because of an unfortunate and outdated reality that affects many disabled people in this country.

    The Marriage Penalty

    The reason we cannot marry is simple, yet infuriating. If we were to legally wed, I would risk losing medical and financial benefits. These benefits are crucial for my independent living. Programs like SSI (Supplemental Security Income), SSDI (Social Security Disability Insurance), Medicaid, and Medicare enforce strict asset limits. These limits make it nearly impossible to save money. They also make it hard to earn a living wage.

    SSI was established in the late 1970’s. It still enforces an asset limit of $2,000 for individuals. This limit is $3,000 for married couples. These limits have not been adjusted in nearly 50 years, despite inflation and rising living costs. According to an NPR report, the so-called ‘marriage penalty’ in Social Security’s Supplemental Security Income (SSI) program remains unchanged since 1989, despite rising costs of living. The outdated asset limits continue to force disabled individuals into difficult financial choices, penalizing them for marriage. (NPR, June 18, 2024)

    The Unfair Choice

    Would I love to marry the person I love? Yes. Would I also love to maintain the benefits that give me the independence to live my life? Absolutely. But under current laws, many disabled people who choose to marry face financial hardship. They constantly struggle to stay under the asset limits. Some even make the painful decision to divorce because the burden is simply too much to bear.

    People often ask if this situation upsets me. The answer is an unequivocal yes. I want the same rights as every other person in this country. I am not looking to exploit the system. Instead, I want to live without fear. I worry that the person I love could be left without the legal rights and protections afforded to married couples. Without a medical power of attorney, my partner would have no say in my care. They would have no control over my affairs if something were to happen to me. That is not fair—to me, or to them.

    The Need for Change

    The system needs to change. Disabled people should be able to live with and marry the person they love without fear of losing essential benefits. Even in 2025, we are treated as second-class citizens under these rules. It is time for reform.

    Think about your loved one as you celebrate this Valentine’s Day. Also, reflect on those who are still forced to hide their love. Some remain legally unmarried out of necessity. Love should not come with penalties—it should be celebrated and protected, equally, for all.

  • Help Wanted?

    Help Wanted?

    “Do you need help?”

    This is a question that many people with disabilities, including myself, face daily. While it is often asked with good intentions, it can be an awkward or even frustrating experience for both the person offering assistance and the one being asked.

    Understanding the Context

    I recognize that offers of help usually stem from a place of kindness. In most situations, I will either accept the assistance or politely decline. However, the decision is rarely a simple one. Various factors influence how I respond.

    Take, for example, the buttons that automatically open doors. When I am out with my service dog, I typically decline offers from others to open doors for me. The reason is straightforward. My dog is trained to perform that task. If people frequently intervene, he may start to expect others to do it for him.

    That does not mean I refuse all forms of assistance. If someone is already holding the door open as they walk through, I will pass through as well. I have also observed this: many people find it fascinating to watch a service dog. They enjoy seeing it complete tasks it has been trained to do.

    On the other hand, there are situations where assistance is both welcome and necessary. For instance, if something is out of my reach like an object on a high shelf I appreciate the help.

    One particular instance stands out: while walking my dog, he once relieved himself just beyond my safe grasp. Despite my best efforts, I could not reach the mess. A businessman in a three-piece suit walked past, saw my struggle, and offered to help. I gratefully accepted because I understood the physical exertion required to complete the task on my own.

    Individual Perspectives Vary

    It is important to recognize that not all disabled individuals feel the same way about receiving help. Some welcome assistance, while others strongly prefer independence. I have encountered individuals who become frustrated or even angry when assistance is offered. This reaction may stem from viewing help as a sign of weakness. They may also be newly disabled and still adjusting to their limitations.

    How Can You Help?

    People often ask me what they should do in these situations, but there is no universal answer. The best approach is simple: ask. If someone accepts your help, that is wonderful. If they decline or appear irritated by the offer, do not take it personally. More often than not, their reaction is based on their personal experiences rather than a reflection of you.

    What You Should NOT Do

    One crucial rule to remember is never assume someone needs help and act without asking. Walking up and intervening without permission can be disruptive, and in some cases, dangerous. For example, when I transfer from my wheelchair, balance is critical. If someone were to assist me without warning, they could unintentionally cause me to lose balance. This action might lead to a fall, putting both of us at risk.

    Conclusion

    Offering help is a kind and thoughtful gesture, but it must be done with consideration and respect. The best way to assist someone with a disability is to ask first and accept their response without judgment. Understanding that every individual has different needs and preferences will create a more inclusive and respectful environment for everyone.

    So, the next time you see someone who needs help, remember: a simple question—“Would you like some assistance?”—can go a long way in fostering understanding and respect.

  • An Invitation to the Table

    An Invitation to the Table

    Last week, I found myself at a local coffee shop, seated at one of the accessible tables. My belongings were spread out, coffee in hand, ready to tackle some work. The table bore a small marker—a symbol indicating it was designated for wheelchair users like me. But as I sat there, I began to ponder the true meaning of that symbol.

    The purpose of such designations is to ensure that people with disabilities have a space where they can comfortably work, eat, or simply exist in a public setting. It is an acknowledgment that accessibility matters. But here’s the thing: while the table may be designed with accessibility in mind, it is not a table just for me. It is a table for anyone who needs it.

    If someone had approached me and asked, “Can I sit here too?” my answer would have been a resounding yes. Because that table, while accessible, is not exclusive. It is a space for anyone—a place to rest, to gather thoughts, to work, or simply to breathe.

    I think about all the possibilities that table represents. It could be a refuge for someone needing a break from the rush of the day, setting down their burdens alongside their coffee cup. It could be a haven for a book lover, lost in a story. Or maybe it is where a casual conversation begins, sparked by the big, goofy yellow dog lying quietly beneath the table, tail wagging at the possibility of a friendly pet.

    We live in a world where our focus is often directed inward—our own lives, our own struggles. We sometimes forget to notice the people sitting just a few feet away. Too often, we see others as strangers, obstacles, or distractions instead of potential connections.

    But what if we shifted our perspective? What if we saw spaces like that accessible table not as individual territories, but as shared places, open to all? What if we recognized them as opportunities to connect?

    I believe we need more moments where we simply sit together, whether to chat or to exist quietly in each other’s company. There is something powerful about being present with another person, even if only for a short while.

    So, if you ever see me at a table like that, do not hesitate. Walk up, meet my eyes, and ask, “Can I sit here too?” And I will say yes, gladly inviting you to share the space. Because at the end of the day, that table is not just for me—it is for anyone who needs it.

    Maybe we will talk about life, about our mutual love for this coffee shop, or about the silly antics of our dogs. Or maybe we will simply sit in silence, each focused on our own tasks, comforted by the presence of another person nearby.

    In a world that often feels isolating, taking a seat at the table might just be the first step toward creating a little more connection, understanding, and community.