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One year later: Woman with 'stone man syndrome' still waiting for relief

Federal lawsuit alleges discrimination under ADA
Posted: 5:32 AM, Dec 21, 2018
Updated: 2018-12-21 19:20:53-05
Jessica Scully

CINCINNATI -- It has been more than a year since a local woman with a rare, disabling genetic condition filed a federal lawsuit against Hamilton County officials and service providers, charging them with discrimination under the Americans with Disabilities Act.

In that time, things have only gotten worse for Jessica Scully, she told WCPO.

Scully still hasn’t gotten a new motorized wheelchair, she said. She needs it to replace the one she has now that is dotted with duct tape to cover exposed wires. The chair has become so uncomfortable, she said, that she can’t sit in it for long without experiencing pain. She also can’t go outside if it’s raining or snowing because the chair tends to stop working if it gets wet.

“It has really squashed my quality of life,” Scully said. “For the first time, my emotional health is at risk because of this.”

RELATED: Lawsuit says Hamilton Co. discriminated under ADA

A spokesman for Hamilton County Developmental Disabilities Services responded to WCPO’s questions by saying that the agency cannot comment on pending litigation and that privacy laws prevent the organization from talking about the specifics of any one client’s case.

“We always work to ensure that people we serve receive their identified support needs while working in compliance with all state and federal laws governing Medicaid waivers,” Ryan Braun, the director of community relations for Hamilton County DDS, wrote in an email to WCPO.

Jessica Scully's wheelchair. (Ramsay Fulbright | WCPO)

The lawsuit states Scully is seeking compensatory damages in excess of $100,000 for actual losses because of emotional distress, pain and suffering. The lawsuit also asks the court to order Hamilton County DDS to purchase a new wheelchair for Scully and seeks attorney fees and punitive damages in excess of $100,000 for “intentional discrimination.”

Scully has fibrodysplasia ossificans progressive, more commonly known as FOP. The rare, genetic condition causes bone to form in muscles, tendons, ligaments and other connective tissue.

Over time, the new bone restricts patients’ movement, fusing their bodies into static positions. That is why FOP is also called “stone man syndrome.”

Once the new bone forms, it can’t be removed because surgery triggers more bone to form. There is no treatment for FOP, and there are only 800 known cases of the condition known in the world, according to the International Fibrodysplasia Ossificans Progressiva Association.

Defendants respond in court filings

Scully, who is 57, was diagnosed with FOP when she was about three years old and diagnosed with scoliosis when she was 10. She was able to walk until she had surgery on her spine when she was 14. Ever since the surgery, she has had to use a wheelchair.

Even so, Scully graduated from high school and then from the University of Cincinnati with a degree in accounting in 1985.

She worked at UC until 1999 when she had to retire as her condition worsened. Scully funded the bulk of her own medical care as long as she could, she said, depleting her retirement savings.

In 2009, the began receiving aid through Hamilton County DDS. Her lawsuit alleges that the problems began soon after.
The lawsuit details problems Scully has had getting the type of bed she needs, getting a proper lift for her van that could handle the weight of her wheelchair and getting a new wheelchair itself, among other concerns.

A friend of Scully’s took out a second mortgage on his house to pay for the lawsuit. Scully’s lawyers helped her start a GoFundMe campaign to try to raise the money she would need to cover part of the cost of a new wheelchair.

Lawyers for Hamilton County DDS and M.C. Mobility Systems, a van modification and lift installation services named in the lawsuit, have filed responses in U.S. District Court.

Jessica Sully has to recline almost completely to get in her van because of her lift. (Ramsay Fulbright | WCPO)

The response from the lawyers for Hamilton County DDS said that Scully “has failed to take advantage of preventative or corrective opportunities provided by Defendants, or to avoid harm, if any harm occurred.” The response further stated: “The injuries and damages suffered by Plaintiff were the direct and proximate result of actions or omissions of Plaintiff or other individuals for whom these Defendants are not responsible or liable.”

Lawyers for M.C. Mobility wrote in their response to the lawsuit that: “Defendant specifically denies that any of its employees were negligent.”

None of the lawyers responded to WCPO’s requests for further comment.

'It's a society problem'

Shepherding the lawsuit through federal court has been time-consuming, said Susan Dunn, Scully’s lawyer and the major member at Dunn Law.

The original lawsuit listed 19 defendants, including members of the Hamilton County Board of Commissioners. Several were dismissed from the case, leaving 13 named defendants.

Because there are still so many people involved, taking depositions for the case and lining up expert witnesses will take time, Dunn said. The jury trial isn’t scheduled to start until October of 2020.

“I am hopeful that we’ll be able to get this case settled long before then,” Dunn said.

Susan Dunn (Ramsay Fulbright | WCPO)

The prospect of waiting for two more years frustrates Scully, she said.

“I might be dead in two years, and I know that,” Scully said. “Pneumonia might kill me. Disease might kill me. DDS might kill me first, though. The emotional aspect of being suicidal. I’ve been suicidal for three years because of this.”

Scully said what keeps her going is her belief that her lawsuit could shed light on what she believes are larger problems with the way people with disabilities receive services.

“The public needs to know what’s really going on,” she said. “It’s not my problem, it’s a society problem. It’s a disability problem in Hamilton County that needs to be addressed.”

More information about Scully is available on her GoFundMe page online .

Lucy May writes about the people, places and issues that define our region – to celebrate what makes the Tri-State great and shine a spotlight on issues we need to address. To reach Lucy, email lucy.may@wcpo.com. Follow her on Twitter @LucyMayCincy.