Like any young adult, Colleen Ganey, a 29-year-old student at George Mason University, wants to be as independent as possible.
Unlike others her age, however, she has a very real fear that she may someday have to go into a nursing home inhabited primarily by elderly people or into an institution.
Five years ago, Ganey started suffering from a muscle deterioration that still has no specific diagnosis and that has resulted in her losing the use of her arms and legs.
She has had to use a wheelchair for the past four years and needs help with basic functions, such as eating and showering.
So far, her parents have been able to take care of her, but she worries about what will happen when they no longer can.
"There is nothing at all available for me because of my need for full-time care," Ganey told a panel of Virginia officials and experts on disabilities at a hearing last week.
"I could just burst out crying thinking I might have to go to the nursing home."
Her testimony was among the first to be heard by the newly created Virginia Commission on the Coordination of the Delivery of Services to Facilitate the Self-Sufficiency and Support of Persons with Physical and Sensory Disabilities, headed by Lt. Gov. Donald S. Beyer Jr.
Sponsors of the commission are aiming at an overhaul and expansion of services to 350,000 to 400,000 disabled Virginians.
They hope the commission will have the same far-reaching impact for the physically disabled that the so-called Bagley Commission had for the mentally impaired after its 1979 report showing tremendous gaps in community services, said Judy P. Divers, special assistant to Beyer.
The new commission grew out of a study that looked specifically at the needs of people who have suffered head and spinal injuries.
Except for a few pilot programs, there are no group homes for the severely physically disabled who need full-time help with daily living needs, such as people with cerebral palsy, Divers said.
Many of these people are highly intelligent and could hold jobs given the proper support services, she said. "They are faced with the issue of going to some type of nursing home," Divers said. "It's not an appropriate placement, but there is no alternative."
Although advocates for the mentally disabled say there is still a huge gap between the need for and the availability of group homes for the mentally ill and retarded, the number of those facilities has grown significantly in recent years, and they now are found throughout the state.
Divers said the Beyer commission is "under the gun" to reach recommendations by early next year, so they can be considered as part of the budget planning for the next biennium.
Among states, Virginia ranks in about the middle in providing services, Divers added. Some states have virtually nothing; others, such as New Jersey, have extensive systems.
At the hearing in Northern Virginia last week, more than a dozen disabled people or their parents or advocates pointed to a lack of services and poor coordination between agencies. Many pointed particularly to the need for group homes.
Ruth Simmons, of Annandale, spoke of her 31-year-old daughter, Judy, who has cerebral palsy and who graduated from high school in Fairfax County and from Northern Virginia Community College.
Judy Simmons has gone to live at a group home in Ohio, where she is able to go to the grocery store and beauty parlor and volunteers at a college.
"She couldn't do that here," Ruth Simmons said, because that type of program isn't available near Annandale.
Cathy Dempsey, president of the Alliance for the Physically Disabled, told the panel that a small group of parents and teachers formed a nonprofit corporation in June 1989 to create group homes for 18- to 45-year-old disabled people. The group is looking to the state for funding assistance.
Suggesting the wide range of disabilities the commission will have to consider, others spoke of the needs of people with autism and head injuries, the deaf and hard of hearing, and the blind.
"There are places in this country where people with autism are served," said Marge DeBlaay, the mother of an autistic 18-year-old, adding that nothing has improved in Virginia since she started lobbying Richmond when her son was 8.
"I could move to Arkansas and within 17 months my son would be in a group home."