Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, August 7, 1994 TAG: 9408080007
SECTION: CURRENT PAGE: NRV-17 EDITION: NEW RIVER VALLEY
SOURCE: By ROBERT FREIS STAFF WRITER
DATELINE: LENGTH: Long
He's a man-child with a mature body and the mentality of a 5-year-old - and sometimes temperamentally hard to handle.
For the rest of his life, 21-year-old William will exist in the shadow of a stroke he suffered as an infant, an episode that destroyed part of his brain.
His parents, Lind and Debbie Farley, live with William in their brick ranch house in Pulaski County. They want him there instead of in an institution.
That means William must be cared for and watched over constantly, a demanding, wearisome process. Sometimes, as Lind Farley says, the couple feel like they've been "rubbed with steel wool."
This is why the Farleys and more than 30 other area families believe in the New River Valley Respite Care program. "It's really a blessing," said Debbie Farley.
For the past year, the program has offered funds and a list of trained care providers to give families a break. The Respite Care workers come to homes and allow families to take an afternoon, an evening or several days off.
Otherwise, the Farleys wouldn't be able to do the simple things most people take for granted - go to a movie, shop, take a vacation at the beach. William Farley is likely to make a scene if they take him along. Additionally, Lind Farley says, "We have to take time for ourselves."
"It's not a situation where I can just call the kid down the street to come help. Other people can do that. I can't," said Karen Brown.
Her 13-year-old daughter, Renee, has spina bifida and must sleep with a monitor that records breathing and heart rate. As with other families, Brown has helpful - if untrained - relatives, but "I always felt like I was imposing."
With Respite Care, there's general relief: the handicapped get to know the care providers and their families can spend some guilt-free time away. "I feel comfortable because I know they won't let anything slip by," Brown said.
People involved with the program would like more people to know about Respite Care. Only a tenth of the 300 New River Valley families estimated to be eligible participate, said Deb Schwabe, who runs the program.
There's a catch, however. If more people seek to participate, the program's modest pie must be sliced even thinner. Already, some families that value Respite Care say they'd use it more if they could - but they don't want to siphon provider's time or funds away from others who need the program.
The answer - in this era of shrinking public money for social services - may be grant funds or donations from civic organizations. Without them, the program won't be totally effective, and could altogether disappear, Schwabe said.
That's an anxious prospect for Respite Care families, who have been making the rounds of area governmental bodies recently, asking not for money but for resolutions of support to help them in applying for grant funds. "This is the best program in existence for families. It's an answer to a prayer," parent Darlene Jones recently told the Pulaski County Board of Supervisors.
The fact that a Respite Care provider was with her 22-year-old son enabled Jones to attend the supervisors' meeting, she said.
Respite Care began several years ago with a grant from the New River Community Services Board to Virginia Tech's Institute of Family and Child Development. The notion of caring for the disabled at home individually rather than clustered in an institution fits in with the current philosophy for handling these special people.
The opportunity to set up a local respite program was of particular interest to Ann Francis, the institute's director of resources and referral. Francis said she and her husband moved to Roanoke from rural Montgomery County because they could not get respite care for their 18-year-old disabled daughter here.
"She's more like an 18-month-old baby. We needed help. We could not stay isolated," Francis said.
The program began to expand after Schwabe came on as director and referrals from social service agencies increased. Still, many parents who use Respite Care say they learned of the program by word-of-mouth.
Families are allowed a budget of program funds to draw upon for provider services. The budget pays a percentage of the costs scaled to fit family income.
The program maintains a list of trained providers who can be hired as often as the family's budget allows, for as little as an afternoon or long enough to take a vacation. Their family members must have developed the disability before age 25 to be eligible.
Getting away - even for a night - was something many couples hadn't been able to do in years.
"We love William tremendously. But I've felt complete despair at times," said Lind Farley. He credits Respite Care breaks for virtually saving his marriage.
Brown, who works with the disabled, says the strain of caring for handicapped family members too often fractures marriages.
Burned-out and frustrated family members can also fall into verbal or physical abuse of the disabled, Schwabe said.
Still, with all the program's benefits, Schwabe said its long-term existence - much less its expansion - is not assured.
The original grant was nearly depleted when the program recently obtained a new grant, funds that will keep Respite Care going for a while longer.
Meanwhile, parents who see the program as a ray of sunshine - and who want others to have the opportunity to use Respite Care - will be looking for community support.
"We realize how badly it's needed," Brown said. "It would be such a shame to see it go down."
You can contact New River Valley Respite Care or make donations through its office at 404 Clay St. in Blacksburg. The phone numbers are (800) 368-0722, 231-8789 or 231-3213.
by CNB