Families seek to retain right to care for disabled children

CINCINNATI (WKRC) – Parents of developmentally disabled children are suing the state of Ohio so they can continue caring for their children who cannot live on their own.

Many parents want to provide home care for their developmentally disabled children as opposed to putting them in institutions or hiring home care workers. Up until this year, parents could become qualified and then get paid by the state as caregivers. But the Ohio Department of Developmental Disabilities (DoDD) passed a rule in January that forces these parents to attempt to hire outside care workers for their children. That rule affects Maeve Sodano’s family and 40,000 other children like her in Ohio who need serious care.

“She needs help with all of her activities of daily living,” said Lindsey Sodano. “So that’s, you know, eating, drinking, bathing, dressing, toileting, all of that. And we’re helping her with just, you know, all of the time and just trying to keep her safe because she definitely likes to get into trouble.”

The rule, passed by the Ohio DoDD says, “A parent or spouse may only provide homecare services if there is no other willing and able provider.”

Then an addendum says parents must “Re-engage the provider search process every four to six months. If a parent chooses not to for whatever reason, they cannot continue as a paid provider.”

“They try to do a search to replace you with a stranger, even though everything’s going fine,” said Lindsey. “They just want to make sure- I don’t know. I don’t know what they’re trying to make sure of, but they’re trying to get the parents out of these positions and put other people in them.”

So, the Sodanos and two other families are suing to have the rule removed. Lindsay says the DoDD is influenced by the Ohio Association of County Boards of Developmental Disabilities (OACBDD), who she says has a bias against parents – a fact she believes is proven by a video of a recent association meeting, where caseworkers were asked what they think of the families they serve who they consider difficult.

“Still coming in,” says a woman leading the meeting, referring to a screen on the wall populating with terms caseworkers were sending her. “Got a couple more. ‘Greedy’, interesting. That’s a good one, ‘Greedy’ and ‘Entitled’. ‘Disrespectful’, ‘Off-base’. ‘Lazy’. ‘Mental’,” the crowd breaks out in laughter. “Somebody just wrote, ‘Ick’.”

We tried to contact the Ohio Association of County Boards of Developmental Disabilities to ask about that video. We also emailed the Ohio Department of Developmental Disabilities to ask why it does not want parents to continue caring for their developmentally disabled children. We did not hear back from either.

In a letter to the state, the OACBDD said it opposes parents as caregivers because caregiving would become “unsustainable fiscally”.