Source: The Ashburn Connection [Mike DiCicco]

ENDependence Center sets up in county, aims to help with independent living.

Mary Lou Werner said the budding Loudoun ENDependence Center has been "a lifesaver" for her and her son, Taylor, since the center opened up a temporary office in Leesburg in January.

ENDependence is a nonprofit network of centers manned largely by people with disabilities that works to "end dependence" among the elderly and disabled by helping them to live on their own. For 26 years, Loudoun has been served by the Northern Virginia ENDependence Center, based many miles away in Arlington, said its executive director, David Burds. However, about two years ago, two part-time employees, Elisa Graves of Cascades and Bill Ward of Manassas began working to establish a presence in the county, and Burds said the organization has found a location in Countryside that he hopes will be a permanent office and active sometime next month.

"We're out here in Loudoun County and there just aren't many support services for someone Taylor's age," said Mary Lou Werner. Taylor Werner, 17, suffered a brain aneurysm in his sleep when he was 11. He had just finished the fifth grade with straight As and played on a championship football team. He still has straight As — now at Stone Bridge High School where he is a rising senior — but the only football he's playing is the "Madden NFL" video game, which is one of his favorite pastimes. He has difficulty with speech and lost a lot of his eyesight and mobility.

GRAVES SAID disability services are uneven in Loudoun, which she said has superior services for substance abuse and intellectual disability, "but you can't go into Loudoun County and say, 'I have CP [cerebral palsy],' and get services."

Mary Lou Werner said the Loudoun ENDependence Center (LEND) was a source for information about all manner of resources available to the disabled, including a list of recommended caregivers she can hire through the Medicaid consumer-directed services program that is available to her son. "Whatever the need might be, I think she'd be able to point us in the right direction," she said of Graves, noting that this might mean questions about college services, doctors, independent living and others. "What do you do if you don't have somebody like that?"

However, what Taylor Werner said he wanted most was some companionship. "I'd like to have people my age or around my age, to come over here and help me work out or take me to the gym or just take me out to hang out somewhere, or just hang out here," he said. He added that he would also appreciate a sports club of peers with disabilities, perhaps with able-bodied young people to help them play.

"As parents, we'd like to meet other parents who've experienced something similar," his mother added. She said she had spoken with Graves about this, and one of the ideas they had come up with was to try to siphon students who need to fulfill community service hours toward disability services.

While ENDependence's primary goal is advocacy for services and accessibility for the disabled, Burds said, its next priority is peer counseling — "people with disabilities working with others with disabilities." However, the counseling has tended to focus more on teaching independent living skills like cooking or using the Metrorail, or helping each other find services, rather than socialization.

SINCE THE BEGINNING of the year, the organization has held community activities like a seniors fair, a transportation workshop and a "barriers awareness" event, in which participants found out what life was like in a wheelchair.

Burds said ENDependence has a particular focus on trying to get the elderly and disabled out of nursing homes and on their own in the community. "Many people are there because they don't have any money," he said. "Medicaid tells them, 'We'll take care of you in a nursing home.' Why not in the community, where it's cheaper?" While the average cost of nursing home care is $60,000 to $75,000, he said, the average cost of home care through the state is about $23,000. However, nursing homes have a powerful lobby, Burds said.

He said LEND currently had about 30 consumers on record and many more people who call wanting information. For those who sign on with the program, he said, Graves or Ward meet with those people, find out what they need and develop a set of goals.

"We don't just go out and do it for them," Graves said. "They do it with us." She said three new consumers had signed on last week alone and calls had been picking up over the last month or two.

Burds said he would like to have a full-time staff member working on affordable housing, the lack of which is a major impediment to independent living. However, he said, funding is a constant problem.

ENDependence Center of Northern Virginia, and therefore also its offshoot, LEND, receive some money from the state and federal governments, as well as Loudoun, the City of Alexandria and Arlington, but not Fairfax County, which the organization also serves. However, much of that funding must be renewed yearly, and Burds said he hoped to increase funding enough to make the Loudoun branch a fully staffed, independent center.

"We need community help, especially for fund raising," said Graves.

LEND MEETS TWICE a month at the Cascades Library and twice a month at the workforce center in Leesburg. It also has an advisory board of seven people with varying disabilities. "So you face everything and you have people exploring different options," Graves said.

Unlike many workers at ENDependence, Graves' disabilities of dyslexia and, possibly, attention deficit hyperactivity disorder (ADHD) have not threatened her independence. But she previously worked for the county, caring for people with disabilities living in the community, and prior to that, she worked at a regional center for the disabled in California. "It's just so rewarding and so humbling, because so much of my life I've taken for granted," she said. "I can go home and say I did something today to make somebody's life better."