------------------------------------------------------------------------------ The Tennessean - 1999 - Article with Citation ------------------------------------------------------------------------------ Headline: Disabled young get little help Date: Thursday, August 12, 1999 Edition: Final Author: Bill Snyder Tennessean Staff Writer Photo caption: Nancy Crone strokes the head of her foster son, Jim Crone, 22, while visiting him at Franklin Manor Nursing Center in Franklin, where he has lived since July 16. (Jared Lazarus / Tennessean Staff) Producer Earl Greenburg, left, and Charlie Chase meet Jim Crone, then known by the last name Criswell, when he was 6 years old in 1983 on the TV program Fantasy. (Nancy Rhoda / Tennessean Staff File) Text: Sixteen years ago, he was a little boy in a wheelchair featured on NBC's Fantasy TV program, which helped ordinary people fulfill their dreams. He'd just been given an electronic communications device that could break the bounds of silence imposed by cerebral palsy, a speech-blocking, paralyzing brain injury he'd suffered at birth. Today, at 22 years old, James Neil Crone is the youngest resident of Franklin Manor Nursing Center in Franklin. He shares a tiny room with a 64-year-old roommate. He has no computer, no communicator, only a small TV to link him to the outside world. Although he cannot speak, Jim, as he prefers to be called, can communicate through a transparent letter board on which are pasted the letters of the alphabet. His foster mother, Nancy Crone, who is his strongest advocate, holds the board between them and watches his clear brown eyes dart demandingly from one letter to another. "I," she says. He nods, almost imperceptibly, before moving his gaze to the next letter. "h ... a .... v ... "I have a brain," he spells out. He's asked: "What would you do if you had a computer?" "I would work for pay." He's here, say advocates for disabled people, because he's indigent, and because Tennessee nursing homes get the bulk of the state's Medicaid dollars for long-term care. Of the $735 million budgeted for 1999- 2000, two-thirds of which are federal dollars, only about 1% -- $7.8 million -- will go for home- and community-based living arrangements for the elderly and people with physical disabilities. "You've hit on a big problem in Tennessee," said Wanda Willis, executive director of the Tennessee Developmental Disabilities Council. "There are really no services ... no state agency that is responsible for services to (adults) who have developmental disabilities other than mental retardation." Crone, who was born Aug. 29, 1976, grew up in foster care. He attended Duncanwood and Harris-Hillman schools for children with disabilities in Nashville, and later Grassland Middle School in Williamson County, his foster mother said. When he was 17, Crone was moved to a series of out-of-state residential centers for people with severe disabilities because there were no appropriate facilities to meet his needs in Tennessee, she said. Two years later, he was transferred to Crotched Mountain Rehabilitation Center in Greenfield, N.H., a rehabilitation hospital and private special-education school for children and adults with multiple disabilities. There he learned to use a computer and, with the help of an aide whopushed his wheelchair, he delivered mail around the campus, said his case manager, Lori-Ann Tessier. "He had to communicate that it was time to get the mail," Tessier said. "We wouldn't remind him. He was very good with that." Nancy Crone said he also changed his birth name, Criswell, to the name of his foster family. Tessier said she felt Crone had the potential to live and work in the community. "We felt he could go to community placement like an apartment or some other place with supportive staff," she said. But when Crone turned 22 in August, he became ineligible for services through the Tennessee Department of Education or the Department of Children's Services. Officials at Crotched Mountain said they offered to enroll Crone in their adult program, and to help him establish residency in New Hampshire so he could eventually qualify for state-funded services. "He really wanted to stay in New Hampshire," said Bonnie Meyers, his transition and discharge coordinator at Crotched Mountain. Meyers said it could take three years for Crone to qualify for New Hampshire services. In the meantime, Tennessee would have to pay for the Crotched Mountain program, which costs about $106,000 a year. Tennessee officials declined the offer. "It was time to bring him back here," explained Randy Griggs, spokesman for the Tennessee Department of Children's Services. Griggs said state officials tried to find appropriate services for Crone in Tennessee. But in June, he was placed in a Nashville nursing home that Griggs described as "one of the better places to put him." "It all takes time," the spokesman added. "We've done everything we could possibly do to make it as painless as possible." But Nancy Crone, who later moved her foster son to the Franklin nursing home nearer her home, said she received few calls or offers of assistance from state officials, and she doesn't know where to turn. Crotched Mountain officials and advocates for people with disabilities in Tennessee expressed dismay at the nursing-home placement. "James' discharge to a nursing home was difficult for a lot of people here," Meyers said. "It makes me ill when I see and hear of young men and women trapped in nursing homes when they could easily be productive, tax-paying citizens with a little help and care," said Darren Jernigan, a 29-year-old Old Hickory man with quadriplegia who heads a consulting firm for people with disabilities. "I want to go back to New Hampshire," said Crone through his letter board. "I need a good home with full-time staff." The state does not keep statistics on the number of young people with physical disabilities who live in nursing homes. More than 90% of the state's 39,000 nursing home residents are age 65 or older; only about 2,000, or 5.2%, are younger than 60. But "we come in contact frequently with very young people who have been placed, we believe, highly inappropriately in nursing homes," said Deana Claiborne, executive director of United Cerebral Palsy of MiddleTennessee. Claiborne said she knows of 500 people with cerebral palsy in Middle Tennessee, many of whom live at home with family members. "There may be a lot more that we don't know about," she said. According to various estimates, "as many as one in five people may be affected with some sort of physical disability." As the population ages, increasing numbers of people will require special assistance in their homes. Yet, according to one study, Tennessee ranks 49th in the nation in the amount of money spent on home- and community-based programs for elderly and disabled people. Several pilot programs for people with physical disabilities are under way throughout the state, but their total caseload is limited to a little more than 800 people. Advocates for people with disabilities have tried to get the state legislature to trim the nursing-home budget so more money can be put into home- and community-based programs. The state's 350 nursing homes, represented by the Tennessee Health Care Association, have vigorously fought the move, arguing that the money is essential for patients who need nursing-home care. What is needed, nursing homes maintain, is additional state money for home- and community-based options. Earlier this year, Gov. Don Sundquist tried to provide that money. He proposed spending $11 million in state dollars, which, when matched with federal funds, could have created a $30 million pool to expand services for elderly and disabled people throughout the state. But that plan was tied to the governor's tax reform proposals. And when tax reform failed to pass the legislature this spring, so did his plan to expand services. Ironically, there are powerful economic arguments for providing home- and community-based services. Tennessee currently is paying $94 a day to provide nursing-home care for Crone, or roughly $34,000 a year. Assuming he lives for at least 25 more years and accounting for inflation, the total cost of his care to the taxpayer could exceed $1 million. The program at Crotchet Mountain was three times more expensive. But had Crone qualified for New Hampshire services as a resident of that state within three years, Tennessee's total tab would have been only about $318,000. Home- or community-based programs have the potential for even greater savings, experts say. A Memphis-based program that provides home- and community-based programs for about 400 Medicaid-eligible people saves the state at least $1 million a year, officials said. These are elderly and disabled people who otherwise would have to be in a nursing home, said Phyllis Jones, senior vice president for health services of Senior Services, a nonprofit agency that has run the program since 1986. "As our population continues to age, there is going to be a greater and greater need for options such as these," added agency spokesman John Carroll. "Our program does not in any shape, way or form try to replace a nursing home," Carroll said. "There are people for whom a nursing home is the only available option, and they're vital. But ... if a nursing home is not necessarily appropriate, we don't think that should be their only choice." Modern technology also is opening doors for people who previously may have had to go to a nursing home or other custodial setting, experts say. "It is possible for folks, through computer technology, to have a job and make their own living, even though they may be very severely disabled," United Cerebral Palsy's Claiborne said. Yet people with physical disabilities continue to face serious social stigmas, and government policymakers often are slow to appreciate their potential, advocates say. "Unfortunately the general population will look at somebody and see all the physical disabilities, and equate that with mental function," said Dan Suggs, of Tennessee Protection & Advocacy, a federally funded agency that protects the legal rights of people with disabilities. "It's so short-sighted -- such a waste of human potential," added Carol Westlake, executive director of the Tennessee Disability Coalition. If Crone already has worked, "he can have another job," Claiborne said. "He can be serving this community, and having a much more enjoyable life." c. Copyright 1999 The Tennessean