"Tennesseans with developmental disabilities have a total waiting list of more than 11,000, leaving families to care for loved ones as best they can."

There is something morally and ethically repugnant with a government that can muster up hundreds of billions of dollars at the drop of a hat to wage war but cannot find itself fit to provide essential - essential - services to her citizens in need.... Sunday, 01/06/08 Services for disabilities elude many in Tennessee More than 11,000 people are on state, federal waiting lists By CLAUDIA PINTO Staff Writer Programs to help Tennesseans with developmental disabilities have a total waiting list of more than 11,000, leaving families to care for loved ones as best they can. The federal Medicaid Waiver program, with a waiting list of 6,000, offers services such as nursing care, transportation and home modifications, such as wheelchair ramps. In Tennessee, the program is not open to people with developmental disabilities such as autism, spina bifida and cerebral palsy who don't have an IQ lower than 70. Their primary option is the state-funded Family Support program, which provides similar services, but with much less frequency. Family Support also has a waiting list of nearly 5,400 people.It's estimated that as many as 39,000 Tennesseans have developmental disabilities other than mental retardation. "It's a tough situation for both groups," said William Edington, public policy director for the Tennessee Council on Developmental Disabilities. "But if you have mental retardation, at least you can put your name on a list to get comprehensive services." There's no monetary cap for most participants enrolled in the Medicaid Waiver program,while the Family Support program has a cap of $4,000 per client each year. "That doesn't go very far," Edington said. "You can't assume that because someone doesn't have an intellectual disability that their need isn't as great." State officials say there isn't much hope of immediate help because funding for both programs is tight. State waiting list grows Cory Hood, a 22-year-old Franklin man with cerebral palsy, has been on a waiting list to receive Medicaid Waiver health-care services at home for four years. The program adds 50 people each month. Hood's situation will worsen in May, when he is too old to attend the Tennessee School for the Blind. He can't see, hear or talk and has the brain function of an 18-month-old baby. "Cory has been in school, so I've been able to work," said his mother, Debby Hood. "If he can't get services by May, I'll ask my aunt and my mother to help me until I'm ready to retire. My mother is 71 years old. There's only so much she can do." People like Christina Chambers of Murfreesboro can't wait for her sons to get on the Family Support program, even though it doesn't go very far. Chambers has two sons with autism. Her 9-year-old is high-functioning but has trouble with social interactions. Her 7-year-old, who has mild to moderate autism, has difficulty with verbal communication. "It's very difficult for him to express himself," she said. "He ends up being pushy, grunting or pointing. Sometimes he gets frustrated and hits himself." Chambers signed up for the Family Support program last summer to get the boys speech and behavioral therapy, but she has no idea how long the wait will be. "It's frustrating," she said. "We've got to do stuff yesterday." The waiting list for Family Support is growing. In 2004 there were 4,440 people on the waiting list, compared with 5,371 in 2007. Edington, of the Tennessee Council on Developmental Disabilities, said the reason for the increase isn't clear. He speculates that the program is becoming better known and said there may be more people with developmental disabilities. For example, it's estimated that one in 150 children now have autism, according to the Centers for Disease Control and Prevention. While it's not uncommon for states to have long waiting lists for Medicaid Waiver programs, Tennessee's program backed up after the Centers for Medicare and Medicaid Services placed a moratorium on new enrollees from 2001 to 2005, according to Steve Norris, deputy commissioner with the state's division of mental retardation services. The moratorium was put in place after a CMS review found that the state had not protected the health and safety of its participants. Funding is main culprit The primary reason for the long waiting lists for at-home services is a familiar one: funding. The state pays $7.7 million a year to help the 4,170 people in the Family Support program. And although the federal government pays for the bulk of the Medicaid Waiverservices, the state still pays out $196 million per year for the roughly 7,000 people enrolled. The division of mental retardation services had to implement a 6.1 percent rate reduction inpayment to its Medicaid Waiver provider agencies on Jan. 1 to stay within budget for the year. Norris said funding isn't likely to improve any time soon. "Anyone who's paid attention to the state's budget situation knows it's not looking too good this year," he said, adding that programs shouldn't be expanded too quickly because it could jeopardize quality care.

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