Recently, we took a major step to protect the rights of Ohio kids with disabilities by filing a legal action, called a mandamus, in the Supreme Court of Ohio. While the legal language can be complex, the issue at the heart of this action is simple: children with profound disabilities deserve consistent, safe, and qualified care—and families deserve respect and fair treatment. And both of those goals happen to be 100% cost neutral!
Here’s what’s happening and why we had to take this step.
What Is the Problem?
The Ohio Department of Developmental Disabilities (DODD) has issued a harmful and unlawful “guidance” that disrupts the care children with disabilities receive through Medicaid waivers. DODD requires county boards of developmental disabilities to search for replacement caregivers every 4-6 months to take the place of parents who are already providing care.
This means that even after a parent has gone through the rigorous process of qualifying as their child’s direct care worker under existing state law, the county board is still required to try to replace them with strangers every few months. If the parent or child finds the replacement applicants unsuitable, the parent loses their eligibility to be the care worker, leaving the child unable to access his or her Medicaid waiver care.
Here’s the catch: this 4-6 month replacement mandate isn’t in any Ohio law or administrative rule. It was introduced through a “guidance” document—essentially a policy DODD created without following Ohio’s required process for making new rules. That means it was never reviewed publicly or open for comment. And yet, it’s being enforced as if it were law.
Why Is This Harmful?
Children with profound disabilities need consistent, qualified care provided by someone they trust and who knows their needs intimately. The American Academy of Pediatrics agrees that for many children, that person is a parent. By forcing families to repeatedly interview and accept a revolving door parade of strangers as caregivers, this policy creates serious problems:
Unqualified Replacements: Many applicants aren’t suitable for the job. Families have reported replacements who lack basic CPR/First Aid certification, can’t speak English, or even behave unprofessionally—like one applicant who arrived at his interview wearing a hat that said “F*** You.”
Disruption of Care: For children who rely on intimate personal care (such as bathing, menstrual care, and diapering), being exposed to a revolving door of unfamiliar caregivers is distressing, undignified, and unsafe. DODD Deputy Director Allan Showalter claims there’s “no limit” to how many strangers they can bring in to replace a parent.
Disrespect for Families: This policy sends a clear message: Ohio doesn’t trust parents, even when they are highly qualified to provide the critical care their children need to avoid institutionalization. Ohio's service coordinators have laughingly mocked family caregivers as “greedy,” “lazy,” and “mental.”
What Are We Fighting For?
We believe DODD’s 4-6 month parent replacement mandate violates the rights of children with disabilities and all the citizens of Ohio in two key ways:
Free Choice of Provider: Federal Medicaid law guarantees kids and adults the right to choose who provides their care. This policy undermines that right by forcing kids to accept strangers, regardless of their qualifications, or lose their approved care hours when their parent’s eligibility is revoked.
Accountability in Rulemaking: Ohio law requires state agencies to follow a transparent process when making new rules, including public hearings and opportunities for comment. DODD bypassed this process entirely, enforcing the 4-6 month replacement policy as if it were law when it was never reviewed or approved. That means every citizen of Ohio lost the chance to speak up against this harmful and absurd policy.
What Happens Next?
Our legal filing asks the Supreme Court of Ohio to step in and order DODD to stop enforcing this unlawful policy. Specifically, we’re asking the court to:
Rescind the 4-6 month replacement requirement
Require DODD to follow Ohio’s formal rulemaking process before imposing policies that affect families’ lives
Protect the right of children with disabilities to consistent, stable, and qualified care
Why This Matters
This fight isn’t just about one policy—it’s about holding state agencies accountable and ensuring that Ohio’s children are treated with dignity and respect. Caregiving for a child with profound disabilities is a 24/7 job, and families need policies that support them, not punish them.
We’re standing up for every family that’s been forced to jump through unnecessary hoops just to give their child the care they were already promised by their county board. And we’re standing up for children who rely on Medicaid waivers to stay out of institutions and live at home with their families.
How You Can Help
If this resonates with you, there are a few ways to get involved:
Share Our Story: Help us spread the word by sharing this story on social media.
Follow Our Advocacy: Stay updated on this case and join our broader efforts. You can enter your email at the bottom of this page to subscribe to our email updates.
Contact Your Representatives: Urge your state legislators to demand that DODD stop pushing anti-family ideology on waiver recipients. State legislators have the power to create a fair and reasonable family caregiver policy in Ohio.
Thank you for standing with us. Together, we can fight for a better, fairer system for Ohioans with developmental disabilities and the family caregivers who support them.
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