AJC article

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Hello everyone,I have attached a copy of an article that appeared today in the AJC. It is about a family who has a son with autism and because of not being able to access appropriate services for their son. The parents turned custody over to the state. This angers me and is an example of how this system has failed this family. No parent should have to be forced to make this choice just so their son could receive services. We as parents must speak out and the system has to and must change.Thanks, Heidi FernandezA family's nightmareKathi and Jim Chandler searched everywhere for the around-the-clock care their autistic son needed. They found only one painful, life-changing solution.By JANE O. HANSENAtlanta Journal-ConstitutionPublished on: 03/13/04Moments before Kathi Chandler was ushered into the courtroom, a lawyer tried to brace her for what she was about to do.Kathi Chandler's long odyssey to find suitable care for her son Jeff led her to Juvenile Court and a wrenching choice.In the past year, her son Jeff's behavior had become uncontrollable because of his autism. The 8-year-old had started to bite and scratch himself until he bled. He was biting and knocking down his 2-year-old sister, hitting and biting his brothers or anyone else within reach. Then there was the bookcase incident when he fell in the middle of the night, cutting his head open.The Chandlers had wanted to care for Jeff at their Alpharetta home, but their insurance wouldn't cover around-the-clock nursing aid. They'd called, researched and pleaded with every public and private agency they could find, without success.The only way the state of Georgia could help her and her husband, Jim, was for them to participate in a legal charade. They would have to agree to be declared unfit parents, then watch their son be turned over to the child welfare system as if he were an abused child rather than a beloved one.Inside the courtroom, the 38-year-old mother rose from the defense table and, standing alone, faced the judge. Her voice trembling, Kathi explained they had nowhere else to turn.The judge sympathized. But Georgia law does not allow Juvenile Court judges to order specific care for a child in need. They can only find a child "deprived" or "delinquent" and order him into the child welfare or juvenile justice system.So the judge declared the Chandlers — successful professionals and the loving parents of five — unfit parents. Like a modern-day King , she severed the parents' ties to their child. They were no longer his parents. The state was."Nobody should have to make this decision," Kathi said less than an hour later, crying. "I've handed my child over to somebody else."But there would be more than just the pain of handing Jeff over to child welfare. Kathi had no way of comprehending that day what would happen once the state took her child.Across Georgia, some families unable to find or afford mental health care for their children are going to court and giving them up to the state, according to Juvenile Court judges.No one tracks how many parents in Georgia have given up their children. But nationwide, parents handed over an estimated 3,680 children to child welfare agencies in 2001 for the sole purpose of getting them mental health treatment, according to the General Accounting Office, the research arm of Congress.Jeff's autism is considered a developmental disability, but it caused behavioral problems of the sort that are often treated by mental health professionals.Georgia pays for residential treatment for some emotionally disturbed and developmentally disabled children and teens, but hundreds more are turned away because of a shortage of beds. With no help at home, parents say they have had to give up their livelihood to care for a child, store a baseball bat under their bed to protect themselves against a disturbed adolescent, or lock up kitchen knives to protect a child from self-injury."The real commentary in this state is the terrible condition of mental health services for children," said Fulton Juvenile Court Judge Sanford .'It's just hard'For the Chandlers and families like them, mental health care for their children comes at the cost of a supreme sacrifice.Jeff qualified for one state program that might have paid for home nursing care. But that program doesn't have enough money, and Jeff remains on a waiting list. Another state program under the same agency did have funding for therapeutic foster care for Jeff, but only if the Chandlers gave him up as their son. That's the path the Chandlers took.In the half-year he has been in therapeutic foster care, Jeff has gained weight and looked well when they've seen him. They say they are grateful to the woman who runs the home."She's impressive. I don't know how she does it," Kathi said of the Stone Mountain woman. But their visits have been infrequent — no more than once a month — and the Chandlers have to go by the foster mother's schedule, "which I hate, because he's my child," Kathi said. Still, they're grateful for every chance to see Jeff. Until it comes time to say goodbye."It's just hard," Kathi said, her voice breaking.Jeff rarely speaks in a logical manner, if at all. But his mother recalls one painful moment last fall when he did speak.The family had piled into their SUV and driven to the Stone Mountain foster home to spend a few hours with Jeff and take him to a nearby Taco Bell for lunch. When they arrived to pick him up, Kathi walked into the house."OK, Mommy," he said when he spotted his mother. "I'm ready to go home."Jeff's twinKathi and Jim Chandler built what many would consider an idyllic life. The handsome couple met in Ohio, where both went to college. Today she works as an information technology manager; he's an inventory accounting manager.In the years before Jeff's behavior worsened, they bought their sprawling stucco and stone house in a middle-class Alpharetta development.It wasn't their plan to have so many children, but today they have five: Matt, 13; 12; Jeff and his twin, Tim, now 9; and tiny 2-year-old blond Jacki.Jeff and his twin were born premature, with cerebral palsy. Tim today is an outgoing child working at grade level in school, and unlike Jeff, he can walk short distances without aid. From the beginning, Jeff's life was the greater struggle.At 3 he began showing signs of autism. "He'd put his hand in his mouth and bang repeatedly on his wrist," Kathi said. "He'd echo back whatever you'd say."Gradually Jeff's behavior got worse. By the time he was 7, he could no longer tolerate crowds. At a baseball game, he repeatedly bit himself and ripped the skin on his arm. He moaned and screamed. At a Cub Scout picnic where Tim was to receive an award, Kathi had to sit in the car with Jeff after his moaning disrupted the ceremony.The Chandlers eventually stopped going out as a family.Kathi and her husband talked about one of them quitting work, about selling their house, their two cars."We're successful, we have money, we have a family, we should be able to provide him everything he needs," she said.Yearlong struggleA large box of blue file folders documents the Chandlers' yearlong odyssey seeking help — the letters Kathi wrote, the names and numbers of organizations she called, the rejections.First they became excited about a state-of-the-art treatment program for autism. But they couldn't afford the cost — $1,800 a week — and insurance wouldn't cover it.A few months later they heard about the Georgia Academy for the Blind in Macon, where Jeff could board during the week and autism and special needs experts could work with him day and night. "I said, 'How do we get our son here?' " Kathi said.But school officials in Fulton County, where Jeff had been attending special education classes, refused to allow him to transfer to Macon, saying they were meeting his needs, at least his educational ones, school records show."I said, 'But there's more to it than that,' " Kathi said. " 'He comes home, and we don't know what we're doing.' "They also had heard about another program, funded through the state, that might pay for nursing care so the Chandlers could keep Jeff at home. Kathi's hopes rose when staff at the Fulton mental health board contacted her and, after a two-hour interview, told her they would recommend the Chandlers for funding under the Mental Retardation Waiver Program."I was excited to think I'd finally found the key to unlock the door," she said.After several weeks, she began leaving messages for people who never called back.Eventually a woman from the mental health board told Kathi that her son had been placed on a waiting list.What she didn't tell Kathi was that nearly 4,000 others were waiting, too.'Got to do something'The breaking point came last spring. While his family slept, Jeff climbed the bookcase in his room and fell backward. They found him the next morning in a pool of blood."We finally said, we're not doing what he needs," Kathi said. "We're not doing anything for the family. We've got to do something."A neighbor recommended that the Chandlers call the Department of Family and Children Services and ask whether Jeff could be placed in a therapeutic foster home. The call would launch a chain of events that would put Kathi in a courtroom, consenting to give up her son to get him help.Today she wonders how they could have been so naive. "My husband always felt that because we initiated it, we could go in and change it," she said.But once they got that train moving, there was no stopping it. What was initially a legal fiction would become their reality. Within days, the child protection agency took steps to remove Jeff from his home, sending Kathi a form letter used to open child abuse investigations. "I am writing to inform you that our agency has received a complaint regarding you and your family," the letter said.On Oct. 15, Jim and Kathi Chandler went to Juvenile Court to formally give up their son to therapeutic foster care. Jim had to leave before the hearing began to pick up the couple's other children.When Kathi walked into court alone, she realized there would be no turning back.She'd been told a formal finding had to be made that her child was "deprived." The judge had no other legal option. According to the General Accounting Office, only 11 states allow parents to retain custody when they voluntarily place their children in the child welfare system or juvenile justice system. Georgia is not one of them."They did try to soften the blow to me in how they worded it," Kathi said. "But the bottom line is, that's what their argument is — we've deprived him."Fulton Juvenile Court Judge Nina Hickson said she would prefer not to have had to make that ruling. "It is like this concept of legal fiction," Hickson said. "In this instance, you have parents who, because of their great love and concern for this child, are having to give up their legal rights to this child because it's the only way for him to get the care he needs."The judge agreed to place Jeff in state custody with the understanding she would return Jeff to the Chandlers if they found help.Kathi broke down in court that day, but the judge could see the resolve in the mother's face. "It was devastating," said the judge, who is on leave while being investigated for leaving her own 4-year-old daughter home alone one night.Kathi drove herself home that day, crying most of the way.'Chose his needs'She still has a hard time grasping what they did."Our choice was to keep him home and give him our love, or give him what he needs," she recently said. "We basically chose his needs over our love."People have quit asking her where Jeff is, but she sometimes wonders what they think."I don't know how people could understand," she said. "Because they haven't lived it, they don't know what we went through on a day-to-day basis, the roller coaster of trying to get help and thinking we would and our hopes being dashed."Lately she has begun to worry they may never be able to undo what they've done. Her employer of 17 years has talked about moving her back to Ohio.She asked the child welfare agency what would happen if they had to move. Could they get Jeff back? "They said, 'We don't know. You've been found unfit,' " Kathi said.Not everyone down the line had been clued into the charade. The first caseworker assigned by the agency had been sympathetic. But the second was used to dealing with child abusers. When she heard the family had visited their son at the foster home, she told them that would have to stop. Child welfare policy prohibits it.Rather, she said, they'd be restricted to a one-hour supervised visit each month at the agency's office, just like everyone else on her caseload."I don't consider myself a child abuser," Kathi said. "I guess I was pretty stupid to think that because we'd chosen this route, that we wouldn't be held to the same rules."Beverly , the head of the Fulton Department of Family and Children Services, called the caseworker's position "unacceptable." "Most workers would be delighted that a family would want to see a child as often as possible," she said. pointed out, however, that the vast majority of children under her agency's supervision are victims of abuse or neglect.December reunionWhen learned from a reporter about the family's plight, she intervened, and just before Christmas, Jeff came home for a glorious, chaotic visit. Petite Jacki pushed him into the bright, airy kitchen in his wheelchair, surrounded by two barking dogs and a pack of kids.Everyone talked at once over lunch, while Jeff pulled the cheese off his pizza and gnawed at the crust. "He loves to eat," said his oldest brother, Matt.Occasionally his father wiped the sandy-haired boy's mouth with a cloth. When he slumped in his chair, Matt gently lifted him.They told Jeff he looked good in his dark pants and red sweater, and they teased him about his Backstreet Boys hairstyle, which his caretaker had carefully molded into little spikes.Jeff's brothers helped him unwrap a singalong keyboard, although Kathi had forgotten batteries. Jeff loves music, and when he lived at home, he'd listen for hours to a Madonna CD. "He listened to it real loud," Matt said. "It got to a point we had to tape down the volume control."The final gift was a robot, and Tim scooted to the floor, shoulder to shoulder with his twin. "Jeff, what do you want to do?" he asked. "You want to play with this?"Jeff was engrossed in the beeping, flashing robot, clapping his hands and hitting his left fist over and over with his right hand. "That's the autism," Kathi said. "It's just the stimulation he needs."At times that day Jeff sat on his mother's lap, hugging and cuddling with her. When he started smelling bad, she excused herself to change his diaper.When the seven crowded on the couch for a family portrait, laughing and squirming, the older boys arguing and pushing, the Chandlers were a picture of normalcy.But that too was fiction. At the end of the day, Jeff would return to his foster home.No ultimate solutionLast month, Jim Chandler had a brainstorm. The state had been sending Jeff to a second foster home for one weekend each month, to provide his foster mother some relief. Why not send him home to his family instead? The child welfare agency and the court tentatively agreed. Even the caseworker who was previously unsympathetic had become supportive.But the Chandlers see no ultimate solution. They're still on a waiting list with little hope of getting the support they need to bring Jeff home. Kathi heard Thursday that the state may move Jeff to yet another home. His Stone Mountain foster mother — with whom the Chandlers have a good relationship — said the money she got for Jeff was being reduced because he had done so well in her care. The state has been paying $170 per day for Jeff's care.Kathi later heard the matter had been resolved, at least this time.And what if someone decides that if the Chandlers are unfit to care for Jeff, they must also be unfit to care for their other children?"That's been an absolute fear of ours since we made that first call," Kathi said.But she said it would help if the court followed through and issued an order letting them bring their son home that one weekend a month."At least he'll still know that we're here," she said. "That we haven't abandoned him."She wants to believe she did what was best for him. "But when it comes down to it," she said, "I'm his mom. I should have done more."And she can't help but wonder what Jeff would say to her if he could. "If I were him, I think I would say, 'It would have been more important for me to be with my family,' " she said. "If he could talk, I think he'd tell us, 'It was terrible for you to leave me.' "