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Hundreds of toy trucks line the walls of Monty Sweitzer's bedroom. Some are holiday presents. Others are bribes for him to behave at doctor's appointment.
Sweitzer is 45 and severely intellectually disabled. Each of the trucks represents a milepost of his long haul at the Idaho State School and Hospital. Institutionalized since age 11, he cannot tie his shoelaces, and he communicates with one-word sentences, grunts and a pocket-sized picture book.
Now Idaho is making a new push to close his home of 29 years, its only institution for the developmentally disabled, as part of budget-cutting efforts. His family is praying it will not happen.
"What would I do? I couldn't take him into my home," says Monty's sister and guardian, Dona Butler. "I don't have any programs for him to do during the day, so he would just sit there. I wouldn't have time to take him on outings or run programs like they do at ISSH. He could give up - just sit there and waste away."
Her family's story has played out numerous times since the de-institutionalization movement began roughly 40 years ago as advocates pushed to give people with disabilities a place in America's communities.
IN THE MIDDLE: FAMILIES
The families of residents must learn to navigate a new system and come to terms with the idea of privately run care.
"You're going to disrupt him out of a home he's lived in for 30 years," Sweitzer's sister said. "That change would probably increase his behaviors, and he'll go back to destroying property."
Earlier this year, the Legislature directed ISSH administrators to study closing the school.
Built in 1919, ISSH once had more than 1,000 clients living on a 600-acre campus resembling a working farm. Most are mentally ill, medically fragile or have behavioral problems in addition to developmental delays.
When Sweitzer arrived in 1980, about 800 people lived there. Today, about 78 people live at ISSH, at an average cost of $770 per person, per day.
The facility - a collection of buildings, some empty, some under renovation - isn't locked. Some residents work in an aging elementary school building on the campus, shredding paper for recycling and earning minimum wage.
ADVOCATE: BETTER CARE NEEDED
Some clients, however, are violent, needing one-on-one staffing to keep them in the rooms and the buildings where they live, said Michelle Britton, the administrator of Idaho's Division of Family and Community Services, which oversees ISSH.
Some residents have been ordered there by the court after being charged with violent or sexual crimes.
Idaho needs a better infrastructure for the developmentally disabled community before de-institutionalization will work, said Marilyn Sword, the executive director of the Idaho Council on Developmental Disabilities. She hopes the budget crisis could be the incentive states need to de-institutionalize, shifting spending from public facilities to community care.
Idaho is one of five states with just one large state-run institution for the developmentally delayed, said David Braddock, the lead author of "The State of the States in Developmental Disabilities." The others are Utah, Delaware, Nebraska and Wyoming.
Those states have a greater challenge than most when it comes to de-institutionalizing, Braddock said.
"The political forces that support the continuation of an institution - the families - are going to be strong under any circumstances, but they're going to be particularly strong when you're talking about closing the only one," Braddock said.
U.S. AVERAGE COST PER RESIDENT: $469 A DAY
Nearly $6.6 billion was spent nationwide on large public institutions for the intellectually and developmentally disabled in 2006, Braddock said. Nationally, the number of people living in large public institutions is dropping. In 2004, more than 41,000 people lived in public institutions with more than 16 beds, Braddock's report says. In 2006, more than 38,000 did.
As the population drops, the spending for those left behind increases. Between 1997 and 2006, public spending per person in large public institutions - adjusted for inflation - increased from $154 per day to $469 per day, according to Braddock.
That's partly because the staff isn't downsized at the same rate as the patient population, Britton said.
Specialized therapists and medical professionals are still needed at the institutions whether there are 150 residents or 50, she said. Facility maintenance costs don't decline based on the number of empty rooms. The increasing cost of medical care, prescription medicines and other treatment also plays a role.
FAMILY WORRIES ABOUT PRIVATE CARE
Whether community care is cheaper than public institutions depends on the state and the services offered. In Idaho, where the yearly cost of housing one person at ISSH nears $284,000, community care would more than likely save the state some money, Sword said.
At ISSH, Butler knows her brother gets to go horseback riding once a month in the summer, and in the winter goes cross-country skiing four times each month. She also knows the employees get benefits and are paid more than the standard $10 or $12 hourly wages paid in many private group homes.
"I've looked and when I ask, 'Can you guarantee me that your business will be here in five or 10 or 15 years, that you won't bottom out or burn out and give up?' they never can promise," Butler said. "When I ask if he'll be taken horseback riding or bowling, they say they don't know, it depends. I'm sorry, but that's not good enough."
Butler credits the stability and programs at ISSH, as well as her own advocacy, with helping to calm her brother's sometimes violent outbursts. Still, she believes he's not safe in the community. He runs toward any kind of truck he sees, without stopping to check for traffic. He doesn't have the vocabulary to tell someone if he's been hurt or abused.
"I used to ask dad, 'What will happen to Monty when we're older?' And he said, 'He'll always be taken care of,' " Butler said. "He was talking about the institution - the institution will always be there. And that's not true."
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