I had a busy week recently. I attended six meetings, sat on a presentation panel in Fairfax County, juggled phone calls, wrote several letters and worked on four cases in which families were initiating the process of releasing custody of their children to the Commonwealth of Virginia.
I don't work for the Fairfax Department of Family Services or for an agency involved with child protective services. The children in my cases, 4 months to 16 years, are not criminals, and their families are not abusive, drug addicted, uneducated or evil. But all of the children in question have significant, challenging disabilities.
I work for the Arc of Northern Virginia, an organization that is an advocate for persons with mental retardation, autism and related cognitive disabilities. The families that ferret out my agency usually are resourceful, caring -- and terribly tired.
In the five years that I have worked for the Arc, I have received many calls from families that are sleep-deprived, emotionally drained, financially stretched, physically beaten and hurting. They have done all they can to care for their children at home but have had inadequate support from Virginia.
Some parents have watched their children suffer from as many as 2,000 seizures in a week. Some have changed thousands of diapers over many years and have cleaned excrement off walls, carpets, clothing and upholstery after a child's violent mood. Others have raced between soccer games for one child and emergency room visits for another. All these parents have attempted to give their children the best care they can while balancing the needs of other children, jobs, spouses, friends and -- not often enough -- their own needs.
The problem is that Virginia does not adequately support families of children with disabilities. What money it does set aside for disability support is spent on large, institutional facilities rather than on community-based supports or respite group homes. Yet without some in-home care, respite care, nursing relief, diapers for children older than 3, and help in obtaining wheelchairs, orthotics as well as speech, physical and occupational therapies, families become tapped out.
Sometimes the only option such families have is to release custody of their children to the state, thereby forcing Virginia to find an adequate placement for the child. Most of these children are not candidates for foster care or adoption and are sent to hospitals or institutions far from home. The process is heartbreaking.
Several years ago, a friend traveled this difficult road. Her son's disability was severe, and the constant seizures he suffered, starting at age 2, were robbing him of what functions he did have. Each night, my friend was awake almost constantly to make sure that her son survived his seizures. She also was trying to raise her son's twin and her younger daughter. This woman got no help for her situation from Virginia.
After nine years, my friend and her husband made the painful decision to give up custody to other family members who lived in a state where the boy would have access to the services of a children's group home.
Sad as this story is, it does not end there. The son died peacefully but suddenly in the group home three years later, miles away from his parents and siblings. The family has fallen apart since, the aftermath of years of strain.
According to Rufus H. Stark II of the North Carolina Advisory Committee on Family Centered Services [letters, May 2], his state has embraced a policy that recognizes that family preservation is an essential part of the continuum of care. In his letter, he wrote, rightly, that the "termination of parental rights without the ability to do intensive in-home crisis intervention where indicated will lead to inappropriate placement of children, which can have disastrous long-term results."
It is time for Virginia to recognize the wisdom of its neighboring state and to take a look at its own support system for families. If Virginia believes in the value of families, it must address holes in its system that force families such as the ones I see every week to have their children placed in institutional settings.
-- Kathy May
is director of child and family services for the nonprofit Arc of Northern Virginia.