State facilities for the disabled called antiquated, but some rely on them

By Henri E. Cauvin
Washington Post Staff Writer
Thursday, July 22, 2010; B01

CHESAPEAKE, VA. -- On a barren tract that backs up to Interstate 64, past a street sign that says "Dead End," sits the entrance to a home that no parent would eagerly choose for a son or daughter.

The Southeastern Virginia Training Center houses some of the state's most profoundly disabled people, those who for decades had no option but to live in institutions.

Across the country, states have been closing such places for years, moving people with mental disabilities into community homes and out of the institutions that defined care of the developmentally disabled for much of the 20th century.

Yet the training centers, seen by some families as the only alternative for loved ones who have known little else, endure in Virginia, one of 11 states that have yet to close any of their institutions.

Southeastern, which houses 133 people ages 20 to 90, was going to be the first. But in a sign that Virginia's path to deinstitutionalization will continue to be slow, the state broke ground last month on a $23.7 million project to replace much of Southeastern's 36-year-old campus with a smaller, but still sizable, compound.

The fight to rebuild Southeastern has played out in painful, personal ways for families who have embraced the training center and families who want no part of it, all of them caught in a system with too many antiquated facilities and too little money for community care.

"We should close them all," said Charles Hall, a local mental health official in the Hampton Roads area. "But Virginia is very predictably conservative when it comes to things like this."

The state's pace suits some parents just fine. Gene Sivertson leads the Parents and Friends of Southeastern Virginia Training Center, and for years he and his wife, Ann Marie, have been among its most ardent defenders.

The couple would not speak on the record about their efforts to keep Southeastern open. But in a short essay submitted this year to an advisory committee on the training center's future, Ann Marie Sivertson argued that community care shouldn't be the only option available to families such as hers.

"Realistically," she wrote, "those of us who are blessed with abilities are tasked with the responsibility of providing care for those who cannot care for themselves. For SEVTC families, this Training Center is their 'Choice' for such care."

Barbara Kimble said she understands the sentiments of parents such as Sivertson -- even if she doesn't agree with them.

"I don't blame them," said Kimble, whose 25-year-old son, Michael Ward, is disabled and cannot speak. "If that's where my son was, if that's where he had been from an early age, I would be afraid to take him out."

Kimble, who lives in Chesapeake, has never visited the training center's 97-acre campus. Even so, she is adamant that her son never see the inside of Southeastern.

Since 2006, Ward has been on a state waiting list for community services, which would allow him to move into a group home. "I'm sure he'd like to live somewhere other than with his mom," Kimble said.

But with more than 5,000 on the waiting list, it's hard to say when a slot will open up for Ward, who bags welcome packs for new Cox Cable subscribers through a vocational program.

"If something happens to me and my husband, where would he go?" Kimble asked.

She doesn't have an answer. The idea of her child ending up in an institution just doesn't seem right to her: "I don't know, I guess in my mind, where is his right to have a life?"

Potent lobbyists

Nationwide, the number of developmentally disabled people in institutions has been falling for decades as the country's attitudes and laws have evolved. The shift culminated in a 1999 Supreme Court decision that said "confinement in an institution severely diminishes the everyday life activities of individuals."

Although several states have closed all of their large institutions, most still operate some. The number they house has fallen to about 33,000, from 186,743 in 1970 and 84,239 in 1990, according to the Research and Training Center on Community Living at the University of Minnesota. Virginia's institutionalized population has been falling, too, albeit more slowly than in some states. About 1,150 people with developmental disabilities are spread among the state's five training centers, including almost 170 at the Northern Virginia Training Center on Braddock Road. More than 400 are housed at the Central Virginia Training Center in Lynchburg, the largest of the state's institutions and the subject of a continuing U.S. Justice Department investigation into care and treatment.

In Maryland, by contrast, the number of people in institutions is down to about 150 after the state closed its largest remaining facility, the Rosewood Center in Owings Mills, last year. And the District largely stopped relying on large institutions for the disabled after the court ordered the closing of Forest Haven in 1991.

When Mark Warner (D) took office as governor 2002, "it was clear that Virginia was behind," recalled James Reinhard, who served as the commissioner of mental health under Warner and his successor, Timothy M. Kaine (D).

The Warner administration first proposed expanding community services and rebuilding Southeastern, which was the training center in the most disrepair. But Reinhard said that the sentiment shifted and that Warner and Kaine decided it should be closed.

Beyond the idea that the disabled shouldn't be shut away, the savings were compelling: Caring for a resident in a training center today costs Virginia on average of $181,000 a year, while providing care in the community costs $110,000 to $143,000, according to the state.

The Arc of Virginia, an advocacy group for the disabled, has said the state's limited resources could serve more people if the money was shifted to community services from institutions.

But Southeastern employs nearly 400, among them aides who help residents eat and bathe and therapists who help residents communicate. And the parents of those residents are a potent lobbying force. Some are in their 60s and 70s, and their children have been at Southeastern for decades.

When those parents walk among the brick buildings here, which are called cottages, they see homes, not an institution. When they drive the half-mile from the commercial bustle of South Military Highway to the quiet of Steppingstone Square, they see safety and privacy, not isolation.

They did everything they could to keep Southeastern open, contacting their state legislators and testifying at public hearings.

In the end, Kaine compromised, agreeing to a plan to build a smaller Southeastern that would house 75 people and to spend $8.4 million building new community care facilities in this part of the state.

A 'galling' outcome

For the training centers and their supporters, the outcome was a testament to the influence they have in Richmond. For families on the waiting list, it was a reminder of the obstacles they face in trying to change thinking and shift resources.

"It galls me," said Beth Troutman of Burke, whose 9-year-old daughter, Elaina, was born with a brain malformation that left her severely disabled.

With special education services in a Fairfax public school and private therapy at home, Elaina has made progress, her mother said. But aside from 10 hours a week of respite care that her parents receive, the family has had to foot the bill for Elaina's home therapy, which they estimate costs them about $25,000 a year.

Like hundreds of people in Northern Virginia and thousands statewide, Elaina is on the waiting list for services.

"What will happen when I am too old to do things for her?" Troutman asked. "If we don't have community-based services, she will go into an institution."

All, she said, because a small but vocal group of families isn't able to face a new reality. "I feel for them. I have a heart for them. I do understand," Troutman said. "But it seems they are not listening."

Lisa Lane wishes they would. Her daughter Sadie was born with a rare chromosomal disorder and is now 5. She has bright blue eyes and a mischievous smile, and she loves to help her mom stir the pancake batter. But she cannot talk and she can't be left alone. "She will probably always need 24-hour supervision," said Lane, who quit her job as a schoolteacher to care for Sadie.

Lane said she understands the decisions Southeastern parents made decades ago. But she can't make sense of the decisions the same families are making today.

"I have no doubt that they thought it was the best choice at the time, because there were no options," she said as Sadie sipped carrot juice near the kitchen of the family's Virginia Beach home. "But there are options today. There are community homes."