Two years ago, Blake Misura, a single father, moved out of the A-frame house that he built and shared with his 21-year-old autistic son. His new home: a used camper 150 feet away. Mr. Misura now sleeps and eats in the cramped trailer, cooking on a two-burner hot plate, or the gas grill outside. Then he walks over to visit his only child, Andy, who still lives in their family home. The arrangement was set up so Mr. Misura could get the state to provide someone to stay with Andy while he worked an overnight shift at the local water-treatment plant. The state said people with disabilities who live alone get top priority for in-home help.
"I'm allowed to go over there," says the 47-year-old Mr. Misura, who has been taking care of Andy since he and his wife divorced a few years ago. "I just can't live there."
Faced with the difficulty of getting scarce help for their mentally or physically frail children, some parents are resorting to measures they once considered unthinkable. A Chicago mother dropped off her adult daughter, who has the mental functioning of a 7-year-old, at a shelter, after being told only the homeless or orphans could get into a supervised group home. A couple in Georgia, raising four other children, went to court and let their autistic son become a ward of the state in a bid to get him into therapeutic foster care.
Nationwide, an estimated 80,000 developmentally disabled people are waiting for in-home help or an opening in a group home. Some have been on waiting lists for more than a decade. In Texas, there are 46,000 people waiting for such help -- or about four times the number of people actually receiving assistance.
Requests are increasing as the nation's 4.6 million developmentally disabled, like the rest of the population, are living longer. Meanwhile, their parents are aging too, making it harder to keep up with caretaking. Many parents want to avoid sending their children away to big public institutions, where they fear their children won't thrive. Over the past 30 years, there's been a largely successful effort to move people out of institutions and into smaller settings. Only 44,000 people now live in big public institutions, about a quarter of the number that lived in them in the peak year of 1967.
That change has saved millions of dollars. The average cost to care for a person in a state institution is about $135,000 a year, according to David Braddock, a professor at the University of Colorado, who compiles an annual report called "The State of States in Developmental Disabilities." Care in a privately owned, smaller group home costs about half that. An even less expensive option is providing in-home help, which costs an average of $19,000 a year, assuming care isn't around-the-clock, the report says. But low wages and the often-difficult tasks involved have created a shortage of home-care workers.
Long waits for help have prompted lawsuits in two dozen states, charging violations of a 1999 Supreme Court decision requiring states to make diligent efforts to serve disabled individuals in their community. Florida settled one suit in 2001, promising services to 17,000 people on waiting lists. By increasing spending, it did. Since then, the waiting list has ballooned again, to more than 15,000.
Indeed, even though public spending to provide community services to people with developmental disabilities grew by 17% between 2000 and 2002 -- to about $27 billion -- demand for those services continues to outpace availability. Federal funds, primarily Medicaid, provide 50% of that $27 billion, with states kicking in 46% and local funds the remaining 4%. "Unless you're in a crisis, you don't get services. I'm sure that's the case in most states," says Tony Paulauski, executive director of ARC of Illinois, part of a national, nonprofit organization for the developmentally disabled.
Kathi and James Chandler of Atlanta thought they were in a crisis.
Two of their five children, twin boys, have cerebral palsy. One of the twins, 10-year-old Jeff, is also autistic. A few years ago, he started biting and scratching himself until he bled, and then began hurting his siblings. Ms. Chandler, who works in information technology, and her husband, an accountant, say they couldn't afford around-the-clock trained help on their own. They tried to get in-home help for Jeff through the state, but say the waiting list was too long.
After doing research, they heard about a special foster-home program available through the state. But to qualify, they had to agree to have themselves declared unfit parents. "I never thought we would have to give up our child," says Mr. Chandler. Privately, they hoped that if they said they were willing to do that, someone would intervene, and suggest an alternative.
No one did. The Chandlers went to court, agreed to be classified as negligent parents and turned their son over to the state. They say they accepted the designation voluntarily, for no other reason than their hope to get him into special foster care.
Jeff ended up in two foster homes, for a total of about 11 months. His parents were allowed one visit per month. They didn't tell friends or co-workers about the arrangement. "I couldn't talk about it without crying," Ms. Chandler says. Finally, she asked the court to let her son come home. The judge agreed. "I'll never forgive myself for doing what I did," she says.
Georgia officials wouldn't comment on the Chandlers' case. While rare, there have been similar situations, the state says. "We're increasing our resources to make sure no family has to relinquish their rights," says Kenya Bello, a spokeswoman with the Georgia Division of Mental Health, Developmental Disabilities and Addictive Diseases.
The Chandlers are still on a state waiting list to get in-home help. They have hired a live-in au pair, who helps care for Jeff and change his diapers. They refinanced their home and bought a $20,000 chamber-like device containing pressurized oxygen that reaches different parts of the brain. Some doctors recommend it for people with cerebral palsy and autism. Many families can't afford to get their children into a private-care facility, which can cost more than $50,000 a year, far exceeding what the child would receive in Social Security disability payments.
The poverty rate among families whose children have developmental disabilities is nearly twice the national average, according to a 1998 study by Glenn Fujiura, an associate professor at the University of Illinois. Parents often have difficulty progressing in their careers, he said, because of great demands at home. They also have high expenses related to their child's disability. One parent typically stays home, limiting income. The vast majority of developmentally disabled people -- about 75% -- don't receive any publicly funded residential support, such as in-home help. But requests for assistance are expected to increase, as aging parents reach physical and financial limits. To stem the tide, states are capping the number of people they serve and raising eligibility requirements.
Installing an Alarm
Sharon Lambert, who lives near Chicago, says she needed someone to help watch her then 24-year-old daughter, Regina, who has the mental functioning of a 7-year-old. To remind Regina that she wasn't supposed to leave the house while her mother was at work, Ms. Lambert installed an alarm that sounded if Regina tried to leave.
"I felt like I was caging her," says Ms. Lambert, who feared for her vulnerable daughter. Once, she says two women convinced Regina to steal for them at a department store, by loading her cart with goods and then asking her to go outside. She did, and was arrested, her mother says. Another time, she says a man convinced Regina to live with him, then used her small paycheck from a grocery-store bakery to pay his rent. Ms. Lambert tried to get Regina into a supervised-living program, but was told there wasn't anything available in her area.
"They said she has to be homeless or both parents deceased," says Ms. Lambert.
State officials wouldn't comment on Ms. Lambert's case, but say each situation must be evaluated individually to determine whether it is an emergency. An emergency case, which would involve a person who didn't have a guardian or a home, would prompt a more immediate placement, a spokesman said.
Just before Christmas 2003, Ms. Lambert drove Regina to a shelter and told her to go inside and say she needed a place to live. Ms. Lambert sat in her car into the night, she says, crying and watching the door to make sure her daughter wasn't kicked out or didn't leave with strangers. "She knew I was trying to get help for her. She didn't understand it had to be done that way," says Ms. Lambert. "It was what I had to do in order to keep my daughter safe."
Regina has since been placed in a group home.
Blake Misura and his son, Andy, stand by the camper where Blake lives. As parents age, they sometimes agree to housing that places their child far from home. Margaret Gardner and her husband, Alfred, who has had two heart attacks, drive four hours round trip on weekends to visit their 43-year-old autistic son, Ronald, in an Illinois state facility. It had become impossible for them to keep their son at home, Mrs. Gardner says, because he gets upset easily and acts out. Years ago, he lived in a facility near their home that has since closed.
"It's not like he has a girlfriend or job or life," says Mrs. Gardner. "We are all he has. We don't want him to feel like he's been abandoned." Because there were few options in their part of West Virginia, Mike and Helen Cornell sent their 32-year-old daughter, Katie, to a state-funded, privately run home 150 miles away. Their daughter, who was diagnosed with severe mental retardation and mild cerebral palsy, is allowed to come home only 21 nights a year, because officials at the center believe prolonged visits would be disruptive to her treatment.
"We try to stretch visits to every five weeks, so she can be home at Christmas for three nights," says her mother. In between, Mrs. Cornell mails her daughter dragonfly stickers and recordings of Marvin Gaye and the Rolling Stones.
It's been two years since Blake Misura packed his clothes in a duffel bag and black garbage bags, and left his home. That fulfilled a promise he made that he would leave if the state would help him with his son, Andy. Andy is autistic and has pica, which means he will eat inappropriate things, like bolts and coins. He has never talked, but has a few distinguishable hand signals. One signal means that he wants something to eat, another means he is thirsty. He might hit his head when he has a headache. Noises, crowds and strangers bother him. He grew up on a quiet, four-acre plot outside of Gainesville. As a boy, he rode the family's two horses, Prince and Desmore, with his mother or father behind him, arms wrapped around his waist.
Inside his living room are pictures of him as a child, sitting in an inflatable pool and crawling on the floor. Nearby is the wood carving of a unicorn that his father made for him when he was a baby.
Anxious at School
Andy was in and out of schools, in classes designed for students both with and without disabilities. He was often sent home because he would get anxious when bells rang or hallways filled with students. His mother, Sherri, home-schooled him for a while when he was a teen. After reading that special diets could help people with autism, she ordered sorghum flour from Idaho and made fresh bread daily for him. Nothing worked, she says. As he got bigger, towering over her at 6 feet 2 inches and close to 300 pounds, he grew more uncooperative, biting and head-butting her and tearing at her clothes.
"He had periods when he was absolutely wonderful and then periods when he seemed ready to kill whoever walked through the room and I was always the one walking through the room," says Ms. Misura. "He just couldn't help it." The Misuras called the state, asking for in-home help. They were told it could take months, maybe a year, for assistance. Being home alone with Andy all day, on a country road by a cemetery and a field of grazing cows, took its toll on Ms. Misura. Finally, she left. "We wanted desperately to make things better and were never able to do anything. I thought it would never change. I'd always be right there with him, never knowing when something was going to happen," she says. "You just finally get to the point where you break. You absolutely break. Basically, that's what happened."
After she left, Mr. Misura cut back on his work, living on credit cards and loans, he says. He put in 16 hours a month maintaining computers at a water-treatment plant, his elderly parents coming overnight to stay with Andy.
"I worried about them, too, and not being able to get out of the way fast enough to avoid a head butt if Andy became upset," says Mr. Misura. After three months with no steady income, Mr. Misura reached his credit limit. He again asked the state for help, saying he needed someone to come to his house for nine to 12 hours a day, so he could go to work, pay bills and buy groceries. He was told no funding was available, and Andy was on the waiting list. At that point, he went on an email campaign, sending an estimated 7,000 emails a week to any one holding public office in the state, explaining his situation. "I knew somewhere, sometime, someone was going to tire of it," he says.
Finally, the state Department of Children and Families contacted him and said they could place Andy in an institution, only a few miles from their home. Mr. Misura said no. "I have sworn to myself that I would never put Andy in an institution," he says.
He believed his son would regress in an institution, mimicking behavior of those around him. He worried that Andy, a loner, would be overwhelmed by the facility's size and noise. He feared workers wouldn't be able to settle Andy down when he got upset.
Officials assured him it was only temporary, maybe 30 to 60 days, until funding came through for in-home help. Reluctantly, he agreed. The stay extended to a year. Andy lived in a sprawling state-owned complex, with about 600 people in various buildings. He was one of 16 people in his home, sleeping four to a room. At one point, Andy was found eating the wallpaper border he peeled off the wall and at another, dismantling a lamp and putting the screws in his mouth, his father says. State officials said they couldn't comment without a release from Andy Misura, who is old enough to be his own legal guardian. Andy locked himself in his room, sticking his fingers in his ears to block out noise, according to his father. On several occasions, he had to be restrained by staffers holding him on the floor. He would sit outside on a picnic table waiting for his father's arrival every evening, running with a lopsided gait to meet him. They would go to the mall to walk, to Wal-Mart or to Godfather's Pizza for a buffet special.
"Every time I'd see him waiting for me on the picnic table, it tore me up inside," says Mr. Misura. Goodbyes were difficult. Andy would refuse to get out of the car or let go of his father after long hugs. Mr. Misura kept calling state officials to see when Andy could come home. He went to Tallahassee to testify before a board created to help provide better services to the developmentally disabled.
Again, he was told his son was still on the waiting list for in-home help -- and that people requiring part-time help weren't priorities. Those who lived on their own, or needed 24-hour care, were top priorities. At that point, Mr. Misura said he would move out of his house so Andy would technically be living on his own -- and thus a priority.
Tom Barnes, spokesman for the Department of Children and Families, says he couldn't talk specifically about Andy Misura because of federal laws protecting privacy of health information. But he said the system isn't designed to force people to make drastic choices. "I'm not going to say that never happens, but it is not designed that way," he says. "There is a dilemma related to inadequate services and funding. That is always true."
Living in a Trailer
At first, Mr. Misura lived in an apartment five miles away. But Mr. Misura, who earns $40,000 a year with overtime, couldn't keep up with the $525-a-month rent, plus utilities, his $625 mortgage, and $17,000 in credit-card debt. To cut costs, he asked permission to live in a trailer on his property. He found a 1984 camper in a classified ad for $1,600. Now he sleeps on a mattress wedged in a small bedroom. There's a closet-size bathroom with a concrete floor. "I wouldn't call it a real home," he says.
Most afternoons, a bus brings Andy home from a school for the developmentally disabled. On a recent day, his father, who had been resting in his trailer after his shift, joined his son in the house. Andy rocked back and forth on the sofa. He hadn't had any outbursts in several months, his father said. Two trophies stood on the TV, honoring Andy as the 2003
Most Improved student at his school. Halloween and Christmas cards, made for his father, each with a photo of him inside and the words Love Andy, stand propped open on a shelf. Andy's mother visits, but not often. "I don't see him very much," she says. "It brings back a lot of bad memories."
Andy is now on his seventh caregiver in less than two years. Most of them left because the work was deemed too hard and the pay -- about $28,000 a year -- too little. His last caregiver put Andy on a vegetarian diet, helping him lose 60 pounds and get down to 310. She played with him, taking down his basket of toys, balls and xylophones. But she left this summer. Mr. Misura's brother, who is divorced and whose own children are grown, has taken over for now. He moved in with Andy, and receives payment from the state. Andy's father still lives in the camper.