Six years after it commenced and with funding in place for several hundred more waivers to help people with developmental disabilities live in the community, a federal lawsuit alleging Ohio didn’t do enough to enable people to leave institutional care has ended, though settlement obligations stretch through this year. Related litigation brought by guardians of people in intermediate care facilities (ICFs) is still to be resolved.

U.S. District Court Judge Edmund Sargus officially ended Ball v. DeWine -- known as Ball v. Kasich when it was filed in the spring of 2016 -- after approving a settlement agreement in 2020. Disability Rights Ohio (DRO), the nonprofit designated under federal law to advocate for people with disabilities, helped to lead the class action lawsuit on behalf of individuals, families and the Ability Center of Greater Toledo. The litigation alleged systemic violations of the state’s obligation under disability law and the U.S. Supreme Court’s Olmstead decision to allow people with disabilities to get services and care in the most integrated, least restrictive setting.

The plaintiffs in Ball launched the litigation to address a years-long waiting list for people looking to leave institutions. Kevin Truitt, legal advocacy director for DRO, said one study pegged the median wait time at 14 years. “People literally were stuck, and so our lawsuit changed that, made structural changes to the system and actually started funding programs, these waiver programs, for this population,” he said.

Since March 2016, when the litigation launched, more than 1,300 people who were in institutional care are now living in community settings. “We think the vast majority of those 1,300 are due to our lawsuit. The change in the system that we got through our litigation helped those people transition into the community. There’s going to be a certain number … of people who maybe got out of an institution independent of our lawsuit.”

As part of the lawsuit settlement, the state funded an additional 700 waiver slots, and also committed to providing counseling to people on the availability of alternatives to institutional care.

The waivers allow people to get services that enable them to live in the community, including personal care aides, meals, employment help, home-delivered meals or assistive technology.

“It’s cheaper. There’s also a lot of research … about the benefit of being integrated in one’s community instead of being isolated in a facility -- just the benefits to a person’s happiness and emotional wellbeing, and strengthening family relationships, expanding their social networks, being in their community,” Truitt said.

The settlement agreement for the litigation extends until January 2023. “Is the state going to continue moving in the direction of funding waivers for this population? It’s not clear what’s going to happen at that point. We hope the progress continues, but we’ll have to wait and see,” he said.

DRO provides its own counseling to people on their options in addition to what the state offers. Truitt said DRO decided to do this after seeing the relatively high rate of people declining to have the conversations. “That concerns us, we were worried that people were not getting all the information that they needed,” he said, noting the state’s contractor for this counseling was contacting legal guardians for clients in facilities. “It may be the person in the facility doesn’t even know about the waivers,” he said.

DRO wants to maximize waiver participation before enforcement of the settlement ends. Once a person starts taking a waiver, it becomes an entitlement.

Still pending before Sargus are claims filed by guardians who intervened in the lawsuit, who argued there’s been a systematic attempt to deny access to ICFs, even though institutional care is an entitlement under Medicaid.

The Ohio Department of Developmental Disabilities (DODD) noted this continuing litigation in a statement on the end of the lawsuit.

“In accordance with the settlement agreement between Disability Rights Ohio and the state of Ohio, Judge Sargus has dismissed all claims brought by Disability Rights Ohio in a 2016 lawsuit. A group of guardians of people who reside in intermediate care facilities (ICFs) intervened in the lawsuit in 2017 because of fears that DRO’s claims in the lawsuit meant that ICFs would be targeted for closure. The guardians claims are still pending and trial is scheduled on those claims later this year. Most of the requirements under the settlement agreement finalized in 2020 have been completed, although a few obligations continue through January 2023. The 2020 agreement maintained and expanded existing initiatives and provided waiver funding without harming the ICF program, ICF funding, or a family’s right to choose an ICF for their loved one. DODD has and will continue to implement the settlement agreement and will continue to support the ICF program, which is not adversely impacted by the settlement agreement,” said the department.

A major source of uncertainty about the future is not the pending end of settlement enforcement next year, but the workforce crisis affecting the developmental disabilities sector and other care fields, Truitt said.

“That workforce is not stable right now. It’s hasn’t been for years. It’s a workforce that has very low wages, high turnover. It’s very hard for people, even if they’re enrolled in a waiver program, to find the providers that they need,” he said.

“That’s a major challenge going forward, and the pandemic has made all of this so much worse,” he said.

Truitt said the increased pay for direct support professionals the state provided in recent years was welcome but relatively modest.

“It’s very much appreciated. Any new funding for this workforce is something that we appreciate, but nowhere close to what’s needed to fix this crisis. That’s just the reality,” he said.

“So many people in this field make the remark that you can go work in fast food and make more money,” he said. “That’s the reality right now, and it’s been that way for years, and it’s getting worse during the pandemic.”

“There’s more to it, but it’s never going to be fixed unless we increase wages for this workforce,” he said.