Vicki Obee keeps a bright yellow folder on her desk. Scrawled on front in black marker: “Don’t give up the farm.”
It’s a mantra Ms. Obee, executive director of Bittersweet Farms, has adopted as she waits to learn how a federal rule issued earlier this year will affect the services Bittersweet provides for people with autism.
In January, the Centers for Medicare and Medicaid Services, or CMS, issued changes to its Home and Community-Based Services program, which provides waivers to Medicaid-eligible people with disabilities to live at home or in the community rather than in facilities the government deems institutional. The goal is to keep people out of settings with isolating qualities that keep them away from the broader community.
The rule states that waiver money cannot be given for programs in settings that aren’t considered “home and community based” or are institutional or isolating. It has the potential to affect the nearly 6,000 facilities in Ohio that offer waiver services. These institutional settings include nursing facilities, hospitals, and intermediate care facilities. Settings in the same building or “adjacent to” institutional-like settings are also not eligible for HCBS waivers.
Well-intentioned as it is, the rule has left care providers across Ohio wondering what it means for their programming.
Farmstead issue
Bittersweet Farms provides a variety of day and residential services for people with autism. Founded in 1983 in Whitehouse, it was the first farmstead of its kind in the United States. Since then, it has expanded to locations in Pemberville, Lima, and Middletown.
In addition to 55 people who come for day services, many funded by Medicaid waivers, there are two residential programs on the 80-acre Whitehouse campus. One is a 20-bed intermediate care facility with individual rooms and a common kitchen and living space. There are also 12 people living in one-bedroom apartments, funded by waivers from the U.S. Department of Housing and Urban Development. People with autism benefit from routine and structure, Ms. Obee said, and many residents have lived on-site for more than two decades. They don’t want to move, she said.
“My concern is they’ll say, ‘You can’t live where you work,’ ” she said. “If in their zealousness they’re losing choice, that’s not better either.”
Another potential problem for Bittersweet is the nature of its mission, as farmsteads are mentioned specifically in the federal rule. They aren’t explicitly deemed not HCBS-eligible but will be looked at with “heightened scrutiny.”
A Department of Medicaid document clarifying the HCBS rule states that because those living on rural parcels of land primarily interact with others with the disabilities and staff, “the setting does not facilitate individuals integrating into the greater community and has characteristics that isolate individuals receiving Medicaid HCBS from individuals not receiving Medicaid HCBS.”
Gary Tonks, CEO of the Arc Ohio, an advocacy group for people with disabilities and their families, said farms are singled out because of the way people with disabilities historically have been treated.
During the push in the mid-20th century to move people with disabilities out of harmful and restrictive institutions and asylums, farmsteads were also used as a way to segregate those with disabilities and came with “all the bad things you think about with institutions,” he said.
Feeling targeted
Ms. Obee said she feels Bittersweet has a target on its back.
“We’re quite clearly a campus-based, intentional community,” she said. “There are assumptions that we isolate.”
But, Ms. Obee contends, Bittersweet is anything but isolating. In addition to the barn where participants interact with the farm’s sheep, rabbits, goats, and horses, the campus runs a community-supported agriculture program, in which participants grow, harvest, and deliver boxes of produce. Participants in the art center often go out to fairs and art shows to sell their work and often interact with the broader community.
“I love it here,” said Ben DeVorrs, 30, who has come to Bittersweet for day programming for nearly three years. “I like staying busy and helping my co-workers out.”
Ms. Obee said Bittersweet offers meaningful tasks, and the farm gives participants, many of whom have sensory difficulties, enough room to move around.
State of concern
For parents and family members of special needs children across Ohio, the state of limbo is worrisome.
More than 100 parents, caregivers, and advocates packed a room at the Maumee Branch Library in late October to hear representatives from Disability Rights Ohio and the Arc of Ohio, who held meetings across the state in October. Most who attended the meeting in Maumee expressed confusion about how much, if at all, this rule will affect their personal situations.
“That meeting scared me to death,” said Brian Lenz, whose son Hunter attends the alternative school program at Bittersweet’s Pemberville campus. “I don’t know where to go next. He’s already 17.”
Hunter’s waiver is paid for by Perrysburg schools, so he isn’t at risk for losing the money, but Mr. Lenz worries about what will happen if Bittersweet has to cut back on services or close. Hunter has been at Bittersweet since March after a long search to find him an appropriate program.
“I don’t know why the ruling says farms aren’t community,” he said “That was a godsend for us. We didn’t know where to turn.”
Timetable for change
In response to the federal rule, the state of Ohio must create a transition plan, mapping out how it will make necessary changes so all facilities are in CMS compliance.
Lori Horvath is the deputy director of Medicaid development and administration for the Ohio Department of Developmental Disabilities. She said the current timetable is to publish the transition plan online by Dec. 1, where it will be open for public comment for at least 30 days.
The department also sent out a survey to providers, looking to figure out how many of them would need to make changes in light of the rule. It received about 2,000 responses.
“None said, ‘We are 100 percent in compliance,’ ” she said. “But the vast majority said, ‘We’re in pretty good shape and can make changes in one year.’ ” She said common changes include increased staff training and person-centered planning.
She said they have no answer yet as to who might have to move but said the goal is “to minimize disruption to lives of people receiving services.”
The plan must be submitted to CMS by March, including documentation of how the state’s department of disabilities, in conjunction with the Ohio departments of Medicaid and Aging, responded to the comments. Then CMS can approve it or ask for clarification or changes.
Beginning sometime early next year, the department will conduct visits to see which providers will have substantial barriers to compliance.
“We don’t want to make a blanket judgment about a type of setting,” Ms. Horvath said. “We haven’t made any decisions on a state level on settings that cannot be compliant.”
And so, Ms. Obee must wait. In the meantime, she’s organized meetings with parents and caregivers to provide information and encourage them to get involved.
“We need to get people out here and have them judge on the quality of its outcomes,” she said. “Families need to stand up.”
Contact Lauren Lindstrom at llindstrom@theblade.com, 419-724-6154, or on Twitter @lelindstrom.
First Published November 9, 2014, 5:00 a.m.