Judy Dunbar moved from Richmond to Burke, thinking she and her husband would improve opportunities they could provide to their son Michael, 16, a student with developmental disabilities.
"We moved from Richmond to Fairfax, thinking, 'This is great. We're moving to a county where there will be great services,'" Dunbar said. "These schools are great, but that's where it stops.
"As far as the services we expected when we got here, it never materialized," Dunbar said. "We're on every waiting list there is."
More than 4,000 people with disabilities in Virginia are currently on waiting lists to receive services such as day support programs, occupational opportunities, transportation services or residential housing.
Planning for adulthood can't start too early. When Michael was 13, Dunbar signed her son up for the waiting list to move to a group home when he becomes an adult.
"I have a daughter; I don't want for her to feel this is her responsibility," Dunbar said. "It's not fair to her or any of the siblings to think that their future is dependent on where their sibling is going to be."
Even advance planning is no assurance that people will disabilities will have housing choices as their parents age.
Tony Garcia's sister Linda, 49, still lives with their parents, now 83 and 73 years old. She is also on a waiting list to be in a group home.
Linda, Garcia says, loves animals, loves 'Seinfeld,' and loves to laugh. "She loves to be around people," said Garcia, 44, an art director who lives in Arlington.
"Once my parents go away, I want her to be safe."
But more than 800 families in need of urgent and emergency care services are on waiting lists, for services designed for people with disabilities who are living with parents who are getting older or in weakening states of health.
DESPITE HURRICANE ISABEL, the Dunbars, Garcia and 1,000 other people with disabilities across Virginia marched or wheeled one-mile from Mayo Island in Richmond to the capitol steps. The ArcMarch was "a call to action," a campaign designed to urge change in the state system that serves people with mental retardation and related developmental disabilities, according to Teja Stokes, executive director of The Arc of Virginia.
The Arc of Northern Virginia almost canceled its participation in the march due to the damage Hurricane Isabel caused to families throughout Virginia, including Richmond, said Nancy Mercer, executive director.
The final decision didn’t come until 8 p.m. the night before to go ahead.
Tom Gavin, of Tysons Towers in Vienna, outweighed Hurricane Isabel when Mercer made her decision to go. Gavin, who trekked up the streets of Richmond in his wheelchair, called Mercer three times on Friday to urge her to go ahead with the march.
John Burke, board president of the Northern Virginia Arc, supported the decision. Burke said he hoped that the hundreds of thousands of people in the Washington area who endured living without basic necessities such as power and water in the wake of Isabel would feel solidarity with people with disabilities who live their entire lives without many things others take for granted.
"We have thousands of people who will continue to live in emergency situations," said Burke, of Alexandria. "There are thousands who do not have the support they need for day-to-day activities, who do not have transportation support, do not have occupational opportunities, do not have counseling and don't have the residential setting of their choice," said Burke.
Burke's brother Bill Burke, 48, a man with Down's syndrome, lived with their mother until three years ago. His mother is now 88 years old.
"I don't believe the community is aware of the limited options that people with disabilities have once they leave the public educational system," Burke said.
Public schools are mandated by Federal law to provide schooling that prepares students with disabilities for the transition from school to work and to living in the community. However, once students with disabilities leave the school system — often at 21 years of age — they are sometimes left with few options and few services.
"I don't believe they appreciate the demands on parents who will manage their children's lives, not for the first 15 to 18 years of their lives, but for 45 to 50 years," Burke said.
Worrying about his son Craig's future is always on the mind of Mike Arens, 58. "That's obviously a very big concern for my wife and me at this point. What's going to happen to Craig in the long-run after we're gone?" he said.
JON AND Kathy Weber's 22-year-old daughter Gwendolyn recently graduated from Key Center. She now runs a paper shredder at Central Fairfax Services.
"She likes a routine," Kathy Weber said. "She likes having a place to go and having other people to be with. She doesn't like staying at home."
Gwendolyn receives funding for transitional services this year, but her parents are fearful of future options for their daughter. Her job is in jeopardy because lack of funding. "The state needs to do more," Jon Weber said.
"They spend all this time learning basic skills and self help in the school system," he said. "To just throw them out once they graduate doesn't quite make it. We're not always going to be there for her."
"Here we are the 12th wealthiest state and we rank 47th providing support services," he said.
"FAIRFAX HAS to make up for what the state does not give,” said Mike Arens, of Springfield. “It is past time for the state to do its part."
His son, Craig Arens, 27, likes sports such as ice skating, roller blading and bicycling. He just learned to swim on his own.
"We've become dependent somewhat on the programs that exist in Fairfax County," Arens said. "We're very fortunate for the services we do have. It upsets me to see that we are now starting to ration these things."
The march will launch a lobbying effort for an increase of $80 million for services for people with developmental disabilities this legislative session.
"It makes me angry that when we're in budget time, they're balancing it on our backs," Dunbar said. "We are becoming very exasperated with the system."
"WE REALLY ought to be ashamed of what we're not doing in human services," said Del. Ken Plum (D-Reston), as he marched the one mile from Mayo Island to the capitol steps in Richmond.
There, Plum spoke through a megaphone to the 1,000 people throughout Virginia who marched.
"Virginia, you ought to be ashamed. For one of the wealthiest states in the country, we can do better. Do you hear us Virginia? Do you hear us?"