A Court Just Said What Every Family Caregiver Needed to Hear: Guidance Is Not Law

It is easy to lose hope when you are fighting a system that seems to make its own rules as it goes. County boards invoke policies without citing statutes. State agencies issue "requirements" that exist nowhere in the law. Families ask for the legal authority behind a decision and receive silence, or worse, hostility.

But a court in Pennsylvania just delivered a ruling that cuts through all of that with unusual clarity: government agencies cannot turn guidance into law.

What the Court Decided

In Dunkelberger v. Department of Human Services, a mother was being paid to care for her disabled adult son through a Medicaid waiver program. A limit on hours delivered by family caregivers was buried in a manual. It was not adopted through formal rulemaking, not codified in state law, and not subject to public notice or comment. It was just a policy someone wrote and began enforcing as if it were law.

The Commonwealth Court of Pennsylvania disagreed. It declared the anti-family caregiver policy null and void.

The reasoning is simple: if a state agency wants to impose a mandatory, enforceable rule that affects the rights and services of real people, it must go through the formal rulemaking process. Online “FAQs” do not qualify. “Administrative manuals” do not qualify. Internal “guidance” documents do not qualify. Informal "expectations" do not qualify. Those things are not laws, and they cannot strip disabled people of services.

This is the difference between a government of laws and a government of whatever someone typed up in Microsoft Word and posted on the internet.

Why This Matters for Ohio Families

Ohio family caregivers have lived this problem for years.

The same Medicaid waiver regulation means completely different things in different counties. Some families are told a certain practice is required; others are told it is optional. Policies shift depending on the SSA, the county board, or the moment. When families ask for written authority, they rarely receive a statute or an administrative rule. They receive a vague answer like “according to DODD,” “ODM wants this,” or perhaps no response at all.

That inconsistency is not accidental and it is not benign. When agencies enforce informal guidance as though it were binding law, they strip disabled folks of the due process protections that actual rulemaking requires: public notice, comment periods, clear standards, and meaningful appeal rights. People with disabilities and their families are left guessing what the rules are, with no reliable way to challenge them.

Dunkelberger names this for what it is: an unlawful exercise of agency power.

What Ohio Families Should Take Away From This

The services that keep people with developmental disabilities safe at home cannot rest on documents that bypassed the lawmaking process. When your county board tells you something is required, you are entitled to ask: Where is that in the law? When the answer is an online FAQ, memo, or “DODD said so,” that answer is not good enough.

Courts are not always friendly territory for families. Litigation is slow, expensive, and challenging. But Dunkelberger is a reminder that the judicial system still exists to check unlawful agency action… and that disabled folks who fight back sometimes win.

People with developmental disabilities and their family caregivers deserve lawful, transparent, consistently administered services. When agencies forget that, the courts are still there to remember it for them.

Congratulations to our Pennsylvania friends on a hard-fought and genuinely important legal win!