Ohio's 91-Layer Disability System

If you are new to Ohio’s developmental disabilities (DD) waiver system, it can feel like you’ve stepped into a world where everyone speaks in acronyms and no one quite seems to be in charge. Families are told to call one office, only to be redirected to another. Questions get tossed back and forth with phrases like “that’s the state’s policy” or “that’s up to the county.”

It is a confusing system, and confusion has consequences. The more confusing a system is, the easier it becomes to deny benefits to people who are eligible. Some folks get so overwhelmed that they simply give up.

The truth is that Ohio’s DD waivers are administered through roughly 91 different layers of government authority at once. Each layer controls a small piece of the system. Understanding how those layers fit together doesn’t make the system simple, but it does help explain why things often feel inconsistent, arbitrary, or impossible to resolve.

At the top is the federal level: the Centers for Medicare & Medicaid Services, better known as CMS. CMS is the part of the federal government that oversees Medicaid nationwide. It decides what Medicaid is allowed to pay for and sets the basic rules states must follow if they want to use Medicaid money for home- and community-based services instead of institutions. When Ohio wants to make a change to a waiver for people with developmental disabilities, CMS has to approve that change.

But CMS does not decide what services you or your loved one receives, how many hours of care are approved, or who your service coordinator is. Once a waiver is approved, CMS steps back and expects the state to operate the program within federal rules.

In Ohio, the state agency responsible for Medicaid is the Ohio Department of Medicaid. ODM is the agency that formally operates Medicaid in Ohio and communicates with the federal government. However, ODM does not specialize in developmental disabilities, and it does not manage the day-to-day details of DD services.

ODM hands that responsibility down to another state agency: the Ohio Department of Developmental Disabilities, usually called DODD.

DODD is the agency that designs Ohio’s developmental disabilities system. It creates the waiver structures, writes the rules that explain how services are supposed to work, develops assessment tools, and issues “guidance” that shapes how services are delivered across the state. Even when families never speak directly with DODD, its fingerprints are everywhere. The forms families fill out, the language used in service plans, and the limits counties believe they must follow all trace back to decisions made at this level.

Still, DODD is not the agency most families interact with. That role belongs to county boards of developmental disabilities serving 88 different counties.*

County boards are local government agencies, and they are the face of the waiver system for most families. They determine whether someone is eligible for services, assign Service and Support Administrators, help write Individual Service Plans, and decide how (or whether) to apply state and federal rules and guidance. If a service is delayed, denied, reduced, or changed, the county board is usually the one making that decision.

Because each county board interprets the law differently, experiences can vary widely. Two people with the same diagnosis and the same care needs who live in different counties may receive wildly different services. One person might be granted a waiver while another is told they are not eligible. Even within a single county, individuals and families may notice major differences depending on who their assigned SSA is.

With four formal levels of oversight and about 91 separate government entities involved, disability rights can break down between layers. For example, CMS approved Ohio’s waivers with the explicit assurance that “the free choice of provider processes are adhered to and emphasize the right of individuals to choose any qualified provider of home and community-based services.” Yet in 2024, the Franklin County Board of Developmental Disabilities published a form stating, “Free Choice of Provider does not apply.” In this case, both the federal and state levels guaranteed disabled individuals the right to choose any qualified and willing provider, but a single county board declared that this right “does not apply.”

After this issue was documented and family caregivers spoke up, officials at DODD intervened, and Franklin County removed the statement from its form.

However, not every problem is noticed, documented, and challenged. Several parents have reported being told by their county boards that Medicaid waivers are only for people age 18 and older. This is false. Ohio’s DD waivers are available from birth, and age eligibility is set statewide, not by individual counties. But when families believe incorrect information, don’t get it in writing, or don’t know where to report it, the error often continues unchecked. There is no independent watchdog organization in Ohio paid to systematically identify and correct these system failures.

Ohio’s DD waiver system is not run by one agency. It is a shared system, spread across federal oversight, state responsibility, a second layer of state management, and 88 different flavors of county-level decision-making. That structure helps explain why the system can be so difficult to navigate.

Understanding who does what will not solve every problem, but it should change how families respond when they are told something. If you are told you are not eligible, that a right “does not apply,” or that a service is unavailable, take a moment to double check. Ohio’s waiver rules, policies, and laws are all publicly available online. You do not need to be a lawyer, a policy analyst, or a professional advocate to read them. You do not need special access, insider connections, or a trip to a law library. In a complicated system, confusion works against people with developmental disabilities, but information works in their favor. Knowing who is responsible for what and verifying claims instead of accepting them at face value is often the first and most important step toward protecting your rights.

*Note: There are a few smaller counties that share a county board between them.