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Article of Interest - Transition

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Beyond Special Education, a Fragile Future: Virginia Budget Gaps Diminish Transition Options
by William Branigin, Washington Post, September 15, 2003
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Ted Nigh wants his friends to know that life in the nursing home is all right and that they shouldn't hesitate to visit him. He is getting good care and gets along well with the staff.

The problem is, he has difficulty relating to most of the other residents.

Nigh is 20 years old, a 2002 graduate of Falls Church High School. He is also a quadriplegic with cerebral palsy. With no programs available to help Nigh after graduation, his father, a single parent, felt he had little choice but to put his son in a nursing home that accepts Medicaid patients. Sam Nigh, 54, who was recently laid off from his job at an insurance company, said he hopes that some alternative will come through next year.

"They're doing a good job taking care of me," Ted Nigh said of the 180-bed nursing home in Manassas where he has lived since May. But his stay "is becoming too long," he added. "You just get aggravated. . . . I don't want nursing home life to become a regular habit."

Like all states, Virginia is required by federal law to provide special education to disabled students such as Nigh. But increasingly, advocates say, the millions of dollars spent on this education are going to waste as budget cuts whittle down the programs that allow special education graduates to transition to jobs and more independent lives. This creates added burdens for parents, who sometimes must sacrifice their own jobs to stay home and care for their disabled children.

"Recent budget crunches and tax cuts have further stressed a system that is already very inadequate," said Kathy May, lead advocate for The Arc of Northern Virginia, a local affiliate of the national advocacy group The Arc, which promotes the rights of people with mental retardation and other developmental disabilities.

More than 4,000 mentally retarded people are on waiting lists for services in Virginia, and nearly 1,000 need urgent care under Medicaid, according to Teja Stokes, executive director of the group's state chapter in Richmond, The Arc of Virginia. Although the state's per capita income is 14th highest in the nation, Virginia ranks 45th in spending and 47th in the growth of community placements per capita for people with mental retardation and developmental disabilities, Stokes said.

To call attention to the situation, The Arc of Virginia is organizing a march on the state Capitol on Saturday and expects thousands to participate.

"Virginia has failed her citizens with disabilities year after year, never fully realizing federal matching monies available to provide meaningful residential and employment options," Stokes said in a news release announcing the march. Because the state "has failed to build and sustain an adequate community-based support system for [special education] graduates," she said, "millions of dollars are wasted on students who complete high school to find no support with job transition and independent living."

The Arc of Virginia wants the state to spend $28 million for 1,300 new "Medicaid waiver slots" in its next two-year budget so that people with mental retardation and developmental disabilities can receive services paid for in part by federal matching funds. The group is also urging Virginia to raise its Medicaid reimbursement rate for the first time in 12 years, at a cost of $15 million in fiscal 2005, to encourage more private providers to offer services to the mentally retarded.

According to a study last year by the University of Colorado, Virginia was one of 13 states that recorded increases in the number of people with mental retardation or developmental disabilities living in nursing homes between 1996 and 2000. Virginia's total grew by 17 percent -- to 1,272, or about 18 per 100,000 people. By comparison, the rate dropped by 3 percent in the District, to 7 per 100,000 people, and by 74 percent in Maryland, to 2 per 100,000 people.

In Fairfax County, the Community Services Board -- which serves people with mental illness, mental retardation and substance abuse problems -- was hit by more than $7.8 million in state and local budget cuts in fiscal 2003 and 2004. Faced with the prospect that scores of mentally disabled students would have nowhere to go after completing high school, families and board members scrambled. Some of the disabled were kept in school (federal law allows them to stay until age 22), while others were placed in transition programs that the county und funded for one year.

Among the beneficiaries was Karen Leutner, 22, who is mentally retarded and has muscular dystrophy. She graduated from George C. Marshall High School in June and, "at the last minute," was placed in a county-funded day program at St. Coletta School in Alexandria, said her mother, Nancy.

"Right now we have funding till June 30 . . . but after that I'm not sure what's going to happen," Nancy Leutner said. "She's on a waiting list for everything, like group homes, but that's just like . . . forget it. Parents have to die for their adult disabled child to be eligible for anything."

Sarah Temple, 22, a graduate of Centreville High School who has moderate mental retardation, faces a similar dilemma. Funding for her job-training program is secure for this year only. "We did a lot of advocating to get this funding," said her mother, Cheryl. "I guess we'll be doing it again."

No such help was available for Ted Nigh, who is not mentally retarded and thus not eligible for Community Services Board programs under Virginia's system. Instead, he comes under the state's Department of Rehabilitative Services, which has not been able to find an alternative to a nursing home for him.

Sitting in a wheelchair at the Birmingham Green residential care center one day last week, Nigh said he stayed in high school an extra year, but finally decided he needed to graduate. Case workers had that entire time to develop a post-graduation plan for him, "and they came up with nothing," he said. "That was a really frustrating point in my life."

An avid hockey fan, Nigh said his ambition is to find a public relations job, preferably involving sports. "I'm looking for an employer to step up and take a chance on a person like me," he said.

But he said he worries that case workers' efforts so far may amount to "a smoke screen" and that his dreams could wither at the nursing home.

"I don't think there is a plan," he told his father at one point. "I feel kind of duped. . . . The more days go by and you don't hear anything, that's when you start to wonder, 'Am I really in here for good?' " 

   

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