Jeff Paprocki moves to Woodward: Jeff Paprocki moved to Woodward Tuesday morning after spending nearly six months in the psychiatric ward at Iowa Lutheran Hospital.
WOODWARD, IA. — This is what freedom means to Jeff Paprocki: When you’re hungry, you can go to Pizza Hut, pick out what you want from the buffet and sit at a table like anybody else.
Nobody will make you wear a helmet. Nobody will interrupt your meal to make you take more medication. If you want more pizza, a friend will help you walk back to the buffet to pick out another slice.
Paprocki, 23, reveled in such liberty on Tuesday, a few hours after he was released from a Des Moines hospital’s psychiatric ward. He’d been locked in the hospital for more than five months, even though everyone agreed he didn’t belong there. The hospital ward offered no therapy for his serious case of autism, but no other facility in Iowa’s overburdened mental health system would take him. Legislators this session are debating ways to improve the system.
Finally, he reached the top of the waiting list for the Woodward Resource Center, a state facility housing people with serious mental disabilities. An ambulance drove him 35 miles from the hospital to the state institution, which will be his home for at least a year.
His mother, Martha, smiled as Jeff chomped down his lunch a few hours later. Pizza is his absolute favorite thing, she said, and it was wonderful to watch him eat it at a public restaurant instead of in a windowless hospital room.
“He likes going out. He likes seeing people,” she said. “He likes choices. Choices are a big deal. Freedom’s a big deal.”
Jeff Paprocki won’t have what most people consider freedom, and his new home is more than two hours away from his family’s home in Waterloo. But he’s in a much better place than he was.
Little therapy, and no trips outside
Jeff suffers from a severe form of autism, a brain condition that can rob people of their ability to communicate with others. Some people with autism have fits of frustration, lashing out and hurting themselves, including banging their heads.
Jeff lived with his family until he was 15, when he became too much for his parents to handle. He lived in a Waterloo nursing home several years, then transferred to a group home in Nevada. Staff there sent him to the hospital last fall for what his parents thought would be a few days of medication adjustment. But the group home staff declined to take him back, saying they couldn’t handle his outbursts. The only viable option appeared to be the state institution at Woodward, which had a waiting list for its approximately 185 beds.
Woodward’s bed shortage is partly due to a steady decrease in capacity at such places under national efforts to move disabled people out of institutions and into smaller, community facilities. But critics say society hasn’t put enough resources into strengthening the smaller facilities so they can properly care for severe cases.
So Jeff sat for more than five months in the psychiatric ward at Iowa Lutheran Hospital, whose leaders agreed with the family that they had little to offer him besides room and board. The situation was particularly frustrating because Iowa has a severe shortage of psychiatric beds, which are meant for people with critical cases of schizophrenia, bipolar disorder or depression. Lutheran had to turn some of those patients away because Jeff was filling a bed.
Marsha Edgington-Bott, Woodward’s superintendent, said Jeff’s wait was unusually long. Part of the explanation, she said, was that despite its shortcomings, Iowa Lutheran gave him a safe place to stay. Some other prospective Woodward residents were in more precarious situations, she said, so they were bumped to the top of the waiting list.
The Paprockis believe Iowa Lutheran’s staff members did the best they could for Jeff. But because their program isn’t set up for autism, they offered him little therapy. They also didn’t take him outside a single time in more than five months, his parents said, and they gave him more medication than an autism facility would use.
Special steps taken for a tough case
Shortly after he arrived at Woodward on Tuesday morning, Jeff nearly fell over while walking across a living room at the house he’ll share with seven other disabled men. An aide caught him, and somebody asked his mother if he is usually so unstable.
“No, he’s not unstable,” she said. “He’s a little klutzy, but he’s not unstable.”
Also, she said, his speech usually is easier to understand. He can read at a sixth-grade level, and he routinely engages in simple conversations. When he arrived at Woodward, most of his moans and chortles were indecipherable.
“He’s drugged into oblivion,” his mother explained. His medical records confirmed it. Before putting him into the ambulance, hospital staff gave him a sedative on top of several powerful psychiatric drugs he’d been taking. Edgington-Bott assured the family that he would need less medication at Woodward, which has specially trained staff and a low-stress environment to help ease autistic patients’ anxiety.
Even by Woodward’s standards, Jeff is a tough case. The staff put padding on all the walls of his new bedroom, which is unusual these days. They also covered his window with Plexiglas, an unbreakable plastic, so that he couldn’t hurt himself if he banged his head into the window, as he has in the past. If he improves, as the staff hopes, those measures could be reversed.
Edgington-Bott expressed hope that Jeff could be stabilized enough that he could move to a smaller facility after a year or so. The state could offer such a facility extra help and money so that he could live outside the state institution and nearer to his parents.
“That’s what we want,” she said. “That’s what everyone wants.”
Martha Paprocki expressed skepticism later Tuesday. “Where else are you going to send him? There is no other facility that would guarantee they’d keep him,” she said, adding that he probably will stay at Woodward for years.
Two staffers begin getting to know him
The institution’s staff knows that big changes can create panic in people with autism, who crave order and predictability. That’s why they visited Jeff in the hospital in recent weeks, and they wore name tags Tuesday to help him remember who they were. Two aides, Frank Jacobs and Broc Logan, will be his main companions, and they made sure to both be there to greet him when he arrived. A couple of hours later, after the sedative wore off and Jeff perked up, Jacobs and Logan accompanied the family to the Pizza Hut in nearby Perry.
Jeff’s foam helmet, which he wore constantly at the hospital, had been replaced with a brand-new black-and-gold Hawkeyes cap. His look of bewilderment had been replaced with an expression of bliss as he ate salad and pizza and sucked down Diet Coke.
“He’s kind of a slob,” his mother told the aides, but they waved away her concern and watched their new client enjoy himself.
“Pizza’s the cure-all, huh?” Jacobs asked Martha. She gave him a thumbs-up, but then mentioned that her son sometimes chokes on hard vegetables, like raw carrots or broccoli. “You have to watch him,” she said.
“Has he ever had an incident where he chokes until he turns blue?” Logan asked her.
She shook her head. “No, he just coughs,” she said.
“Just coughs? That’s good,” Logan said, with a reassuring air.
After lunch, Jeff had a question: “Hy-Vee?” he said.
Yes, the aides said, there was a Hy-Vee store nearby, and they could take him there.
His mother gave the aides a $20 bill and told them to limit her son to two items, which probably would come down to a loaf of bread and a jar of peanut butter. Then she softened a bit. “Don’t let him talk you into more than three items,” she said. She smiled as he walked away with his new friends.
She remains upset that her son will be living 125 miles away from his family, who will be able to see him only every other week. But she said she was relieved that he at least was in a place that understands his needs.
After the Register wrote about Jeff’s situation in February, his parents heard from several families with similar tales of frustration. His father, Jim, said Tuesday that he appreciated those calls, but wished he’d also heard from state legislators.
He knows they’re working on a plan to reform the state’s mental health system, but he hasn’t seen them commit serious amounts of money for improvements. State leaders say the reforms will take time.
Jim Paprocki said they might feel differently if they had to see their children locked up inappropriately in a psych ward for five months.
“To say we’ll do this over a five-year period or a seven-year period?” he said of the reforms.
“To me, that’s just an eternity.”