When Protecting Medicaid Dollars Comes at the Expense of Protecting People with Disabilities

 

When Protecting Medicaid Dollars Comes at the Expense of Protecting People with Disabilities 

Ohio lawmakers have been working to crack down on Medicaid fraud. I understand the need for accountability. Fraud should be investigated, and taxpayer dollars should be protected. BUT I want to share what is happening to families like mine, because I believe the public needs to understand the other side of this conversation. 

I am the mother of a 13-year-old boy named Jude. He has a rare genetic disorder called 15q24 microdeletion syndrome, Witteveen-Kolk syndrome, severe intellectual and developmental disabilities, autism, immune deficiency, and multiple complex medical needs. Although Jude is 14 years old, his cognitive functioning is closer to that of an 18-month-old child. He is nonverbal, requires assistance with nearly every aspect of daily living, and has virtually no understanding of danger. He cannot safely be left alone. For years, I have been his primary caregiver, medical coordinator, advocate, and voice. 

Here is what navigating Ohio's developmental disability system has looked like for our family. 

1. We are being required to justify basic safety measures in our own home — with the ultimate goal of reducing or eliminating them. 

We use locks, cameras, tracker and a onesie for sleeping to protect Jude's safety and well-being. Yet under Ohio's "Restriction of Rights" process, I am required to collect daily behavioral data, meet with a Human Rights Committee every 90 days, and develop a plan with the goal of eventually fading or eliminating these safeguards. 

My biggest concern is that the data being collected is with interventions already in place. They never established a baseline. Collecting data after safeguards are implemented does not accurately demonstrate what would happen without them. If Jude isn't wandering outside, is it because he no longer needs the locks, or because the locks are working? 

Using incomplete or misleading data to justify removing safety measures could have devastating consequences. 

These safeguards give Jude more independence. The locks create a safe environment where he can move freely, while the cameras allow us to monitor him without requiring constant physical supervision. 

Yet even with these safeguards in place- he has eloped and been found in a house, the middle of the street and a neighbor’s driveway in the dark. He climbs into dryers, on top of cars and has even smashed his hand in a door never making a noise or showing any distress while waiting for us to find him.  

I fully support protecting the rights and independence of individuals with disabilities. But there must be a distinction between unnecessary restrictions and essential safety measures. The goal should not simply be to eliminate restrictions. It should be to create the least restrictive environment that is genuinely safe for the individual. For Jude, these safeguards are not barriers to independence. They are what make any independence possible. 

2. We have been denied the next level of Medicaid waiver support despite extensive documented needs. 

Jude currently receives support through Ohio's Level One Waiver. We requested the Individual Options (IO) Waiver because his needs have grown far beyond what his current waiver can adequately support. He requires constant supervision, assistance with personal care, medication management, specialized medical care, and behavioral and safety support. He has significant medical complexities, receives ongoing immunoglobulin treatment, and cannot independently manage basic daily activities. 

Our current waiver funding is expected to run out before the end of its funding year. That means we face months without adequate funding, while his needs remain exactly the same. 

We submitted professional documentation supporting his needs, including information from his behavioral specialist and medical providers. Our request for the next level of support was DENIED. Instead, we were directed toward additional assessments and community resources, including behavioral health organizations and OhioRISE-related services. Those resources may be helpful to some families, but many of these services explained to me how their services did not meet Jude’s needs at all.  

3. The assessments being used to make decisions about his future contain significant inaccuracies. 

Our recent waiver assessment included incorrect information about our family, incomplete documentation of Jude's daily care needs, missing medical information, and inaccurate descriptions of his abilities. For example, the assessment emphasized toileting assistance while failing to fully capture the extensive support he needs across daily living activities. It also described Jude as giving the assessor a high-five, without accurately reflecting that he required repeated prompting and did not independently initiate the interaction. That may sound like a small detail, but when a child's abilities are being evaluated to determine eligibility for critical services, those details matter! 

An inaccurate picture of independence can lead to an inaccurate determination of need. We are now having to spend additional time correcting information that should have been documented accurately in the first place. 

4. Families providing care are being placed under increasing scrutiny while struggling to obtain adequate support. 

Ohio lawmakers have considered changes that would restrict payments to family caregivers as part of broader Medicaid fraud legislation. For families like ours, paid family caregiving is not a loophole or an opportunity to exploit the system. It is a way to provide necessary care to individuals who cannot safely be left without support. My preference for care would be one of the registered HPC providers. As it stands, the portal for paid providers is closed, and we are unable to sign up capable and willing individuals to provide the care for Jude. Previous searches for HPC providers have entailed hours of interviews and contacts with providers who were not transparent about their capabilities and did not show. 

 Parents like me are not simply providing ordinary parenting. We are performing work that would otherwise require trained, paid caregivers, often for many hours every single day. We manage medical appointments, medications, therapies, behavioral needs, personal care, and emergencies. We are doing this while raising other children, maintaining households, and trying to have some semblance of a normal family life. 

And when we request additional help, we are met with more paperwork, more assessments, more scrutiny, and sometimes another denial. 

5. The system is supposed to help individuals with disabilities remain safely in their homes and communities. 

That is a purpose of a Medicaid home- and community-based waivers. Yet families are being forced to fight for the very services that make remaining at home possible. 

We are asked to demonstrate how unsafe our children are without supervision, while simultaneously being questioned about the safety measures we use! We are asked to prove how dependent they are, while assessments sometimes overstate their independence. We are asked to justify the hours of care they need, while the funding available to provide that care remains inadequate. I support stopping Medicaid fraud. But I also believe Ohio needs to distinguish between fraudulent providers and families providing legitimate, medically necessary care. 

I am asking for an accurate assessment of my son's needs, reasonable protections for his safety, and access to the level of support his disabilities require. 

I am asking policymakers to understand that a disability does not disappear when waiver funding runs out. A child does not suddenly become independent because an assessment fails to capture the full extent of his limitations. And a parent cannot simply stop providing care because the state has denied additional assistance.  

I hope Ohio's representatives, county boards, and state agencies will listen to families living this reality before making decisions that affect our children's safety, dignity, and futures. Behind every waiver application, assessment, and denial is a real person. For me, that person is Jude and I will continue advocating until his needs are accurately recognized and appropriately supported.