Photograph by Steven Higgs

Direct Support Professional John Willman says impending cuts in the Medicaid Autism Waiver will devastate the lives of Indiana citizens with autism and other disabilities who receive services under the federal program.

If you think you're going to hike with Ron Habney, you'd better be prepared. The 6-foot-tall, 130-pound, 25-year-old treks an average four to six miles a day on some of the most challenging trails in Southern Indiana's Upland regions. Not everyday, to his chagrin, but multiple times a week. Last summer, on one 96-degree day, Ron hiked 9.4 miles through the Charles Deam Wilderness Area in two hours and 20 minutes.

So says John Willman, who knows. He's been Ron's hiking companion and caregiver for almost eight years now. "He's truly an athlete," John says of Ron. "His hiking skills are almost unmatched." Beneath close-cropped, thick, black hair, Willman's blue-green eyes beam proud-parent-like as he recounts Ron's on-trail achievements. But they're just a footnote to this rainy-gray November afternoon interview.

Ron has autism, and John, who is not Ron's parent, is preoccupied with his fate.


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Ron has a history of violence, Willman says. "Property damage, breaking out almost every window in this house at one point," is how he begins the history. He mentions broken bones and exceptional strength. "I'm 5'11" and weigh 190, and during his worst aggressions ... his strength is comparable to mine."

It's been two years since Ron's last violent outburst, he adds. But when cutbacks in state funding for his Medicaid/Autism Waiver alter his hikes and well-honed routines in January, the slope back to the bad old days will be "very short."

Despite Ron's progress vis-a-vis violence, minor incidents still occur, for example, when John takes time off or on days when intervening factors preclude their hiking time in Pate Hollow, or Shades State Park, or Leonard Springs Trail, or Yellowwood State Forest, etc.

"He didn't get to go on the outings he wanted," Willman explains, "he didn't get to do the long hike, he didn't get to do what he knows is his daily routine, and at the end of those days, it resulted in aggression toward the staff."

***

John Willman works for the Monroe County-based nonprofit Options for Better Living. His title "these days" is "direct support professional." He's been at it since March 2003, when he and Ron met.

According to its Web site, Options' mission is to provide "customized, holistic services to assist individuals achieve their desired lifestyle, including housing, rewarding employment, fulfilling relationships and active citizenship in communities throughout Southern Indiana."
"The Medicaid Waiver ... permits federal funds to be used for 'an array of home and community-based services that an individual needs to avoid institutionalization.'"
Options has been around since 1982, when it was called Better Living for Special People and served 22 families. By the time the name changed in 1990, the agency operated two group homes. The Ida Lane Home, opened in 1986, for example, housed six men, "some of whom were assimilating back into the community after having lived in institutions."

In the early 1990s, Options started providing services to those with developmental disabilities through the Medicaid Waiver, which permits federal funds to be used for "an array of home and community-based services that an individual needs to avoid institutionalization." Among the requirements for assistance: "The recipient would require institutionalization in the absence of the waiver and/or other home-based services."

Medicaid has five waiver types, which are administered through state governments. In Indiana, the responsibility falls to the Indiana Family & Social Services Administration (FSSA), which distributes the federal funds to agencies like Options to hire professionals like Willman to care for folks like Ron.

The bulk of individuals served by Options falls under the Autism Waiver and the Developmental Disabilities Waiver, which includes conditions like cerebral palsy, Down syndrome, Angelman syndrome and others, Willman says. Most of the rest are covered by the Traumatic Brain Injury Waiver.

FSSA says the Autism Waiver helps individuals living with their families or in other community settings to "gain and maintain optimum levels of self determination and community integration."

The Developmental Disabilities Waiver helps individuals stay in their own homes or in community settings and assists those who "transition from state operated facilities or other institutions to community settings."

On Nov. 10, the State announced $34 million in new budget cuts, which includes a 5 percent cut in reimbursements to hospitals serving patients on Medicaid. The Associated Press reported the reductions came "in response to state revenue shortfalls and growth in the state Medicaid rolls."

The article also quoted then-FSSA Secretary Anne Murphy as saying the cuts and other measures would "avoid reducing vital services to the 1.2 million Indiana residents to whom the agency provides benefits."

***

From almost the minute Willman positioned himself on the plush, green couch facing the kitchen for a 35-minute conversation in the living room of a circa 1960s Bloomington subdivision, Ron repeatedly paced into the room. He'd turn left just inside the door, walk to a window and adjacent bookshelf and gently tap them. He'd exit as rapidly as he arrived.
"FSSA says the Autism Waiver helps individuals living with their families or in other community settings to 'gain and maintain optimum levels of self determination and community integration.'"
He occasionally detoured to the couch to give Willman "high-fives," which were actually gentle, almost slow-motion taps, fingertips to fingertips. Ron held an 8.5X11 binder opened to a photo of a car, which meant he wanted to go for a drive.

"I understand that you want to go for your outing," Willman says during one such interaction. "We're just going to wait a little bit more, and then we're going to go, okay? You're doing a great job waiting. If you want something to eat, you show me, okay?"

Ron has autism and requires professional care, 24 hours a day, 365 days a year, most but not all of which Willman provides. He was born in Bloomington and attended special education in the Monroe County Community Schools until early high school, when his violent tendencies overtaxed the system, Willman says.

Ron is the only one of triplets with autism. He'd been living in group homes for four years when he and Willman began their ongoing eight-year partnership.

"I remember his mother saying Ron became stronger than her when he was 10 years old," he says. "I think that was a large part of the decision of why he had to go to a group home."

Due to his inability to cope with five roommates, Ron transitioned from the group home to a house owned by his family in March 2003, just about the time Willman started his Options training. He spent two weeks in the classroom before his first assignment sent him to Ron's new place.

"When I showed up here, I walked in the house, and the manager introduced me to Ron," Willman says. "He was working on some paperwork, and he looked up from the table and said, 'You can take off with Ron.'"

***

Almost eight years later, Willman knows Ron like a son. His distinctive qualities include hyper metabolism and energy levels that are off the chart. "These long hikes we do together, rarely does he ever show fatigue," Willman says. "He'll perspire a little. He drinks enough water to where dehydration is not an issue. But he does not show fatigue."

On the autism spectrum, Ron is in the Autistic Disorder range. While many children with the disorder begin speaking and then lose the ability, Ron has never spoken a word in his life.
"Ron has autism and requires professional care, 24 hours a day, 365 days a year."
His "outgoing expressions" are limited to "affective communication," Willman says. For example, tapping the pocket in which John keeps his keys means Ron wants to go somewhere. His "basic communication book" has pictures of household items or destination choices, like trailhead markers.

"That limitation in communication can be very frustrating for him," Willman says, "particularly with new staff or substitutes who don't know how to understand some of his affective, nonverbal communications."

Ron's "incoming communication skills," his ability to understand, are good, Willman says. "I can say, 'Ron, if you're ready for your bath, go in the bathroom and turn the water on.' Instant response. To me, that 's pretty clear evidence that he understands exactly what I'm saying."

Personality-wise, Ron can be extremely joyful. "He loves to dance to music," Willman says. "Lots of laughter, expressions of happiness like that." He's never more content than when riding in the car and listening to music. A Brittney Spears poster adorns one wall of his bedroom (a Sport Illustrated swimsuit model another).

While he may not vocalize his needs, Ron knows precisely what they are, Willman says. In addition to hiking, his outings include shopping for his groceries, going to Target and the mall, and occasionally eating out.

"More than anything his desire is to be able to leave the home during the day and participate in activities that are beneficial to him and that he enjoys," he says.

***

The Medicare Waiver cuts, at least as thus far interpreted for Ron, will most likely mean an end to the activities that keep him happy and nonviolent and a quick slide back down the short slope.

Ron's progress has paralleled the development of routines that suit his particular needs, Willman says. "For people with autism, that routine is comfort to them." For example, Ron awakens at 10 a.m., "almost exclusively," every day. But, he adds, with finger-clicking punctuation, Ron's pace, regardless of the activity, is hard to match.
"The Medicare Waiver cuts, at least as thus far interpreted for Ron, will most likely mean an end to the activities that keep him happy and non-violent."
"Basically I do not know of another individual in this community, period, regardless of the agency they're served by, that could participate in Ron's daily hiking activity," he says.

Willman can, and for the past eight years he has spent more time alone with Ron than many Americans work. "On average, I'm scheduled five days a week, 40 hours," he says, "but it often ends up many more than that."

In January, their time alone together, and by extension Ron's hikes, will most likely come to an end.

Like nearly all Options houses, Ron's place houses two roommates and one support provider for each of three shifts. Each roommate also has one-on-one time with individual providers every day. Ron and John's hikes are part of that routine.

As a result of the cutbacks, Willman says, each house will have three roommates, each classified on a scale of 1 through 6, with 1 needing the least support and 6 the most.

"When Ron's funding was reviewed recently, he was determined to be in a Category 3," Willman says, "which is kind of preposterous, given some of the behavioral issues he's had."

After an appeal process, Ron was reclassified to a 5, which Willman says leaves him wondering just what a 6 might be. But the chances that Ron will have any, let alone enough, time for riding in the car and hiking in the woods are slim.

"I can't stress enough what a catastrophe it's going to be for his life," Willman says. "I mean, basically his home will be his prison. He will not have freedom of choice. He will lose the routine."

Ron Habney's is but one story among dozens at Options, Willman notes. And the waiting list for others to even get services through the Medicaid Waiver is roughly seven years.

"In some ways he's still a lucky individual, when you consider how many people are on the seven-year waiting list, desperately trying to get these services," Willman says.

The Associated Press says some families have waited 10.

***

As Ron's high-five trips become more frequent this blustery, fall Indiana afternoon, the conditions outside are anything but hiker-friendly. But the intrepid trekkers are prepared.

"I have some pretty good expedition gear I brought for today," Willman says. "So, it's I think 34 degrees outside, with rain, and we will "The waiting list for others to even get services through the Medicaid Waiver is roughly seven years."hike in this. We will hike four to six miles today."

Their likely destination, he says, is the Pate Hollow Trail, a 7.7-mile path through mixed hardwoods just north of Lake Monroe and the Paynetown State Recreation Area.

Three minutes before the conversation ends, Ron makes his last entreaty. "I know you want to go, Ron," Willman responds. "You're doing a great job waiting. Okay? We're going to wait, just a little more, and then we're going to go, okay? You're the man."

Willman concludes his thoughts recalling a late-October Associated Press news story headlined "Indiana parents told drop disabled kids at shelters." FSSA denied such advice is given to families calling for help, but at least one mother said that's what she was told.

"That's a pretty scary thought," he says.

Steven Higgs can be reached at editor@BloomingtonAlternative.com.


Editor's note: Ron Habney is pseudonym.