The Three Most Dangerous Words for Family Caregivers: “I Was Told”

If you're caring for a disabled loved one, there's one phrase you may want to strike from your vocabulary right away: “I was told.”

"I was told Appendix K ended in late 2020."

"I was told I have to submit to unannounced home searches."

"I was told there are no waivers for children under 18."

"I was told there are no exceptions to Ohio Shared Living."

We hear this over and over again. And every time, it makes our hearts sink. Because when you share an “I was told” statement, you’re not just repeating false information that someone else might accidentally believe, you’re putting your family in a passive position in a system where passive acceptance can lead to trouble.

From a grammar perspective, “I was told” is in the passive voice. The “I” is the object of the sentence, the one being acted upon by the person doing the telling. And that’s a dangerous place to be when you’re the one responsible for securing services that could mean the difference between safety and crisis.

When it comes to understanding how Medicaid home and community-based services work, you need to be the subject of the sentence, the person actively investigating and verifying the law.

Let’s be blunt: home and community-based services are expensive, and county boards are under enormous pressure to keep costs down. County board workers have qualified immunity (at least for now) and can lie to you, often without consequence. So why stake your loved one’s health on something “told” to you by someone with no legal duty to tell you the truth and every incentive to turn you away?

And let’s not forget: some of these workers were caught on tape cackling in laughter as they called families “greedy,” “lazy,” and “mental.” The Ohio Department of Developmental Disabilities said nothing against this even as hundreds of Ohioans protested. Is that who you want to trust?

Years ago, you might not have had any choice but to trust what you were "told." You had to depend on government gatekeepers to explain the system because your only alternative was digging through books at a law library, and who has time to do that? But that’s not true anymore.

Today, every single law and administrative rule is available online, 24 hours a day, for free. You can look up any rule from your smartphone in under a minute.

• Ohio Medicaid Rules (OAC 5160)

• Ohio DODD Rules (OAC 5123)

If you read a rule and it seems confusing, try uploading it to ChatGPT and asking for a plain-language explanation. Yes, AI can get things wrong, but it’s still far more reliable than an entry-level SSA who was trained to “just say no” and hope you give up, especially if that SSA already believes families like yours are greedy, lazy, or "mental."

Let’s put it this way: if you were buying a used car, would you take the salesman’s word that it’s in good shape, or would you check the Carfax report yourself?

When your loved one’s entire care plan is on the line, it's worth doing some extra legwork to verify what you were "told." That's especially true these days, knowing what we now know about how the county boards view disability families and how the DeWine administration has silently condoned their atrocious behavior.

Here’s what it comes down to: county board workers are not required to tell you the truth. They are not responsible for whether your loved one thrives or declines. But you are.

You are the one your loved one is counting on. So take the wheel. Be active. Be curious. Be relentless.

Instead of saying,“I was told," say, “I looked up the law, and I found out for sure.”

Your loved one will thank you!