Parents, including Mason resident Lindsey Sodano, argue that DODD’s policy was created without following Ohio law and procedure for rulemaking. Sodano’s family and two other parents filed a lawsuit in the Ohio Supreme Court this month.
Sodano is the mother of Mimi, who has a rare neurodevelopmental disorder and receives homemaker care services through a Medicaid waiver. Sodano has been working as her child’s direct caregiver since 2022, and she’s also the leader of the advocacy group End Ohio’s Parent Penalty.
“There’s a huge caregiver shortage, and when there are people to hire, they don’t want to work with these most medically complex kids. These are the hardest cases in the state, so it usually makes sense for the parents who are experts on those kids to fill in and take those roles,” Sodano said.
Other parents participating in the lawsuit are Ohio residents Jennifer Dietsch and Theresa Grant.
The Ohio Department of Developmental Disabilities declined to comment on the lawsuit.
Under Ohio’s administrative code, parents can be employed as the direct care workers for their children through the Medicaid home and community-based waivers. But for the child’s parent to be eligible, there must be “not other willing and able provider or direct care worker available” to provide the waiver services, according to state code.
The state expects county boards of developmental disabilities to engage in a search for “willing and able” care providers. During the search process, the board continues authorizing services to the parent, according to an Ohio Department of Developmental Disabilities fact sheet for parents.
If a provider is identified, the county board of developmental disabilities will begin the transition.
Although the provider search for Sodano’s family did not find any replacements to care for Mimi, Sodano said the search was a scary process. According to Sodano, several people applied to work with her daughter. One of the applicants had a listed business address of “123 Main Street, Suite 101, Anytown, USA, 12345.”
If Sodano were to reject her proposed replacement, she would be disqualified as a care worker herself, she said.
“The ‘four to six month’ replacement direct care worker provider search that DODD has imposed through its administrative guidance places an enormous strain on struggling Ohio families and the provider agencies that wish to employ them,” the lawsuit states.
Families included in the lawsuit are asking the state’s highest court to rescind the 4-6 month provider replacement search policy and allow parents who meet the requirements to continue working as paid direct care workers for their children.
“Ohio law is clear: Administrative agencies cannot create new legal obligations without public input and transparency,” said Michela Huth, the attorney representing the families, in a press release. “(The Ohio Department of Developmental Disabilities) bypassed these safeguards, and now families and children are paying the price.”
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