Petition to Reform Home Caregiver Policies in Ohio

Urgent Appeal for Legislative Reform: A Voice for At-Home Family/Friends Caregivers

Dear Esteemed State Representatives,

I, Milo Naaman Miller II, a 49-year-old resident of Groveport, Ohio, submit this petition not only on behalf of my own family, but as a voice for countless Ohioans silently struggling under restrictive caregiving policies that are outdated, unjust, and detrimental to the well-being of our most vulnerable citizens.

 

📌 TOP POLICY PRIORITIES AT A GLANCE

These are the most urgent areas of reform we urge state and national leaders to prioritize. Each issue is expanded upon later in this petition. We respectfully request your full and immediate attention to these matters. 

🕒 Reform the 40-hour PCA cap—it leaves critical gaps in care.

💍 Allow spouses to be compensated caregivers without giving up legal rights.

💼 Recognize unpaid caregiving as essential labor that saves the state millions.

🚗 Count commute and travel time when assessing caregiver hours and needs.

🗓️ Increase flexibility in scheduling and support real-life family routines.

🚌 Improve access to safe, reliable, disability-accessible transportation.

🔧 Help families maintain and repair wheelchair vans—not just convert them.

🛡️ Improve Power Lift Accessibility and Functionality for In-Home Care

♿ Require inclusive, height-adjustable adult changing tables in public spaces.

🚨 Create a voluntary emergency disability registry for first responders.

📣 Bridge the information gap—families need clear, consistent outreach and support.

OUR STORY ISN’T UNIQUE

For over 26 years, I have been married to a wonderful wife, Lisa M. Milligan-Miller, now 53 years of age. A courageous and resilient woman who, due to misdiagnosed and untreated Moyamoya disease, has suffered multiple strokes, lost both legs, and now requires 24/7 total care. Her condition was worsened by years of delayed medical attention and denied insurance coverage. What should have been preventable has turned into a life-altering crisis for her and our family. How many other families are like ours—and who is counting on someone to be there for them?

 

This is my first time stepping out like this—writing to leaders, sharing my family’s experience, and asking for reform. But I’m doing it because we can’t stay silent anymore. The last four years have been a painful, stressful journey—trying to learn how this system works while holding our household together. In the process, our family has fallen apart in ways that never would have happened if the right support had been there from the beginning.

At the very beginning of my wife’s condition, we didn’t know if she was going to live or die—or even what was truly happening. After some frightening discoveries, we were rushed out of the hospital and into a nursing home with no real direction. I was told insurance would no longer cover her stay and that no additional testing or investigation would be done. The most painful part is that this came from a facility we trusted—The Ohio State University hospital system, a place known as a teaching hospital, which we assumed meant ongoing learning, innovation, and deeper care. While we continue to receive care there, it’s hard not to question whether our healthcare system delivers the full level of support our communities deserve. Do we offer the same depth of care here in America that other countries, like many across Europe, have already committed to? 

It was like they were hiding the truth from us, that home care was even possible. No one mentioned that Medicare could help. The nursing home stood to gain more by keeping her there—and unless I could get her approved for Medicaid, I was told I’d have to pay out of pocket. Her application was denied until I reached out to State Rep. Sharon Brown for help.

Inside that facility, my wife would cry every single day. I could hear her sobbing from the lobby—an entire hallway and a half away, around two corners, through two sets of doors. When I got to her room after work, (3 pm or later) her lunch food would be cold and untouched. It hadn’t even been cut up so she could eat and she was learning to us her left hand since her dominant hand is now paralyzed. Her diet didn’t match her condition even many days. She needed assistance moving away from a feeding tube, and instead was left neglected. It was heartbreaking and enraging as I saw others suffering also.

Finally, after talking to one of my aunts, I learned Medicare could support home health care. I made phone calls on a Sunday afternoon and one even got back to within a hour or so on Sunday. By Monday, a provider came for approval. By Tuesday, my wife was back home where she belonged. But to get her there, our entire family had to sacrifice and reorganize our lives. And even once we got Medicaid assistance, COVID made it nearly impossible to find staff trained and willing to work with her complex needs. If not for OSU pushing me out of my job over covid by firing me. My wife would be home alone many hours and yet I was not jobless with a side job based on commissions that helped some. For a year it was hard to have an PCA show up and no call off. 

This is why I’m speaking up. This is why reform matters—not just for my wife, but for every family like ours. Too many Americans are disabled because of failures in our own healthcare system. Yet we still don’t have a preventative model—or a compassionate one. At one point, they put my paralyzed wife on a standard foam mattress. Within 24 hours, she had developed bedsores. That happened repeatedly in hospitals, in the ER, and even once at home before I had to get mad at them the importance of air mattresses for a person that is not able to move on their own and they still gave me a hard time about replacing it when it broke down. (3 times in total now as they don’t make them to last) The tissue in some areas is now so thin that we have to babysit pressure spots constantly.

These problems weren’t caused by her illness—they were caused by a system that refused to adapt to her needs. And that refusal continues today, every time families like ours are denied care, blocked from pay, or told to separate in order to survive.

We are not alone. Our story isn’t unique: Across Ohio—and across the country—other families are navigating these same barriers. And many of them don’t have the resources or support we’ve had. We’re sharing this petition not just on behalf of our family, but for all Ohioans and Americans caught in this system. Change has to start somewhere. Let it start here.

 

📋 Policy Issues and Solutions

SYSTEMIC BARRIERS HURTING OHIO FAMILIES:

➤ 40-Hour PCA Limit: Families are being punished by an artificial cap. Caregivers must work full-time jobs to support their homes—but they also need help caring for a loved one who requires full care around the clock. Ohio’s current 40-hour limit for PCA support doesn’t account for commute time, emergencies, or overtime. Many caregivers are forced to patch together help from others (if they can even find it), or their own children must pause their lives or jobs. If families are expected to do more, the system should meet them halfway. If the system won’t increase hours, then it must support families with other cost-of-living relief. Otherwise, it’s setting working families up to fail.

➤ Spousal Caregiver Compensation: In Ohio, if you are legally married to the person you care for, you are denied the ability to be paid for your labor—no matter how demanding the care. Worse, if you hold Power of Attorney (POA), you must give it up to become eligible for paid care, even if you’re the best-suited person to provide it. This forces impossible choices: give up the legal ability to advocate for your spouse’s care, or sacrifice income. Families are being divided just to qualify for basic support. This is degrading, destabilizing, and unfair. Caregivers who are spouses should be eligible for pay just like any other qualified aide. Love should not disqualify you from help. Spousal caregivers are saving the state millions and promoting better health outcomes than nursing homes. It's time we recognize that—and provide support accordingly.

➤ Recognize Caregivers as Workers: Many caregivers—especially spouses—are blocked from being paid, even while working harder than some agency staff. This is labor. We are saving the state millions of dollars by keeping our loved ones out of institutions. Many individuals live longer, healthier lives at home compared to institutional settings. Caregivers should not be forced into poverty to provide care the state depends on. If we are going to save the system money, the system should treat our role with dignity and respect.

➤ Travel and Job Commute: Caregivers aren’t just gone for 8 hours—they’re gone for 9 to 12 when factoring traffic, travel, or shift changes. Yet the system only counts care hours against a standard 8-hour workday. This ignores reality and punishes caregivers trying to work outside the home. Without policies that consider commute time and job demands, families are left to fail. This structure pushes caregivers into poverty or dependence. And if we are setting families up to fail, we are setting up our communities to collapse. If caregivers can’t work, they can’t support their families, and can’t contribute economically. Support structures must match real-world conditions.

➤ Scheduling Rigidity: Agencies often require rigid scheduling with no flexibility—even when the person receiving care has unpredictable health conditions. We’ve experienced this first-hand: if our schedule shifts by just one hour, it can create major gaps in care. Families shouldn’t be punished for needing flexibility. And neither should workers—who also struggle to take shifts because of this inflexibility. Families need adaptive solutions that reflect real-life unpredictability.

➤ Disability Transportation Failures: While waiver programs can provide scheduling support with public transport, fixed routes and wait times don’t fit the reality of disability. Medical conditions don’t run on exact schedules—and when transport companies won’t wait, people are left stranded. They book ride back to back to be able to make the most profits to their business as they can and we all can understand why. My wife and I have waited for hours. Drivers often aren’t trained to handle wheelchairs safely, which has led to damage. Repairs are slow and can remove access to the only mobility tool they have for days or weeks. Our community deserves timely, respectful, properly trained transportation options.

➤ Inconsistent Support for Wheelchair Vans: Families may get assistance converting a vehicle into a wheelchair accessibility, but not repairing a vehicle you have got, due to wording it is a personal vehicle. So is the one they converted. That contradiction is harmful. I went into debt to purchase a used van for my wife, and when a lift part broke, we were told we didn’t qualify for repair help because the van was privately purchased. That made no sense. If the state will help convert a vehicle, it should help maintain privately purchased as it saved the state some of the upfront cost—especially since without a van, families are back to unreliable transport with strict hours. Freedom of movement should be part of care.

➤ Improve Power Lift Accessibility and Functionality for In-Home Care: Transferring individuals from a bed to a wheelchair (and vice versa) is one of the most frequent and physically demanding caregiving tasks. Without an accessible or well-positioned power lift, caregivers must physically support the patient while awkwardly reaching behind or around the wheelchair to operate lowering controls. This creates a serious risk of back strain, injury, or patient instability. We urge the state to support funding or training for safer lift systems—particularly models with remote controls, foot pedals, or side-handle access. This will prevent injury and improve safety during daily transfers, one of the most critical and repetitive care activities.

➤ 📚 Evidence & Support for the Power Lift Accessibility and Functionality
Here are compelling real-world findings and expert references you can find reported:

The U.S. Bureau of Labor Statistics consistently ranks nursing assistants and home health aides among the top five professions for workplace injuries, primarily due to manual patient handling.

NIOSH (National Institute for Occupational Safety and Health) states that manual lifting of patients is unsafe in virtually all cases and recommends mechanical lifts for most transfers.

The Occupational Safety and Health Administration (OSHA) reports that one in five injuries among healthcare workers results from lifting or transferring patients—yet most home caregivers receive no formal training or ergonomic equipment.

A 2020 study published in "Home Health Care Management & Practice" found that home caregivers frequently report back and shoulder pain from lifting patients without proper equipment or with poor lift access.

Remote-controlled or powered ceiling lifts, which eliminate the need to reach across or behind the patient, are considered best practice in institutional settings—but are rarely funded or approved for home use.

➤ Lack of Inclusive Adult Changing Tables: Many Ohio public businesses lack adult-size changing tables for people with disabilities. Families are forced to change loved ones in unsafe or unhygienic conditions, or must travel all the way home just to change them—then go back out again. We’ve had to do this many times. Inclusive tables should be required in all major public facilities. These can be two-in-one designs with baby changing tables, and should accommodate wheelchairs, have adjustable heights, and allow space to transfer safely. Businesses that serve the public should serve all of us and the state could offer tax incentives in the year of installation to encourage participation they become more community friendly and have a label on their door showing this commitment.

➤ Emergency Readiness: Emergency services don’t always know who they’re responding to. Families should be able to voluntarily list their home address with local EMT or fire departments after a disability event. If 911 is called, responders should know in advance that a disabled person lives there, and what they may need (e.g. lifts, oxygen, mobility, none verbal person etc.). This helps prevent miscommunication, delays, or injury. Having that data helps first responders serve our families better—and gives caregivers peace of mind.

➤ Information Gaps: So much help exists—but families don’t know what’s out there. I’ve had to fight to find what I know today, and I’m still learning. Doctors, case managers, and job centers rarely mention these resources. When I lost work and tried to get unemployment, no one helped me understand how caregiving intersected with those benefits. The burden shouldn’t be on families to research it all on their own.

🤝 What Families Need—And How You Can Help:
We are calling on state and national leaders—including Governor DeWine and President Trump—I would love to speak with you and or to sit down with caregivers alike, listen to these stories, and create real policy solutions. These are not isolated cases. What’s happening in Ohio is happening across our country. We must build a more responsive, just, and compassionate system—one that honors families, empowers caregivers, and ensures dignity for those we love.

Please stand with us. Talk with us. Let us help fix what’s broken—for our state and for every family in America.

 

Sincerely,

Milo Naaman Miller II

Groveport, Ohio 43125

614-483-7215