Intellectually disabled Virginians get new homes

CHESAPEAKE

Within the next few months, Sandra Arnold will move to a new home.

The 57-year-old woman has lived in state institutions for the mentally disabled since she was 5, and at Southeastern Virginia Training Center in Chesapeake since it opened nearly four decades ago.

She's now part of a wave of intellectually disabled residents who are moving out of the state's five training centers in an unprecedented downsizing effort, which could eventually lead to closing some entirely.

The effort is fueled in part by a U.S. Department of Justice investigation that last February found the settings violated residents' civil rights because they were restrictive and segregated from the rest of society.

During the past year, the number of people in training centers across the state has dropped by 105, leaving 1,018 residents. Sixteen have left the Chesapeake facility, and during the next six months, 35 more will leave the cottages tucked behind an industrial strip off Military Highway in Greenbrier.

Most, like Arnold, will move into group homes and smaller facilities in communities.

"I do a good job," the woman with a sunny smile said one day last week as she shredded paper at the training center.

Her parents, Bobbie Jean and Samuel Beale, fought the move for years, but recently accepted the inevitable. Arnold is intellectually disabled and has epilepsy, but other residents at the center have far more complicated medical conditions. Only 75 can stay at the center, which once housed 200.

"All I can do is pray about it, pray that she'll be safe and happy," Jean Beale said. "That's what we're asking for."

Still, the number of disabled people already in the community and waiting for services is growing.

There are about 7,000 people in Virginia with intellectual disabilities and developmental delays who have requested what's called a Medicaid waiver, which is state and federal money that helps people with disabilities live in the community rather than in long-term care facilities.

That's about 1,000 more than last year at this time.

Part of the difficulty has been the intense scrutiny of the state's training centers, and the drive to move those residents to smaller, community-oriented facilities. Some will use a Medicaid waiver to live in group homes or other housing with supportive services.

Gov. Bob McDonnell put $30 million in a trust fund last year to move people from training centers to community-based housing. Sixty Medicaid waivers have been created for them. In the budget he just proposed, another $30 million is allocated to that effort.

Lacking in the proposed budget, though, is funding for people on the waiting list.

Jamie Liban, executive director of The Arc of Virginia, said that organization's members, who advocate for the disabled, support moving residents out of training centers, but are also concerned about those waiting in the community.

According to the organization's calculations, the list grows by about 900 people a year. These are often people with disabilities graduating from public schools and those whose families can no longer care for them without help, along with families who have recently had children with disabilities.

With no additional Medicaid waiver slots, the waiting list will reach 8,000 by July 2014.

"We've been concerned about the lack of focus on the waiting list," Liban said. "That's a huge issue for us." 

Addressing both issues at the same time has been a challenge for state officials who have spent the past year negotiating with the Department of Justice to avoid a lawsuit.

"If it were easy, we would have been done by now," Secretary of Health and Human Resources Bill Hazel said in a phone interview. "We're tackling the last few issues. It's been a longer process than either us or the Justice Department expected it to be. It's costly and disruptive to make change. We need to pace it in a way that the state can afford it, and in a way that we can do a good job for the individuals who have been there."

The Justice Department is responsible for enforcing the landmark 1999 Olmstead decision by the Supreme Court, which found that unnecessary institutionalization of people is a form of discrimination. In some states, Justice Department investigations have resulted in closing state institutions. A department spokeswoman said the negotiations were ongoing, but declined to comment any further.

Hazel said there's no timetable, but he believes that the state institutions eventually will be closed in favor of community-based care.

"It's unlikely the state can afford two simultaneous systems without some modification," Hazel said. Admissions to the centers have dropped over the years, and the current population is aging. "At some point, it becomes cost-prohibitive to keep them open."

Many of the relatives of the people left in the centers want them to stay because of the medical care and concerns that community-based homes will not have proper oversight. They cite instances of abuse, such as a case in Virginia Beach where the owners of a group home were charged with neglect last month after a resident was allegedly hurt by another person living there.

Jean Beale and her husband, Samuel, were part of the movement to keep training centers open. Jean, who's 75, directed Parents & Associates of the Institutionalized Retarded of Virginia at one time, and spoke before various Olmstead committees, advocating that parents have the right to determine where their children are placed.

Her daughter, Sandra Arnold, was 5 when she first went to a state institution. Beale said her daughter hit and scratched her three younger sisters in their Portsmouth home so much that a pediatrician recommended sending her to a state institution. That was a fairly common recommendation for the time, so Sandra was sent to a training center in Lynchburg.

In an effort to keep residents closer to their families, Virginia began building training centers in other parts of the state in the 1970s. When Southeastern Virginia Training Center opened in 1975, Beale asked that Arnold be moved there.

She said Arnold was happy at the facility and treated with care. When debate about downsizing or closing training centers began, Beale and her husband, who is Arnold's stepfather, and other parents fought the idea because their relatives had lived there for so long that they considered it home. They also worried that group homes and smaller facilities would not have proper oversight and funding.

Beale, who lives in Chesapeake now, said Southeastern administrators began telling her five years ago that Arnold could move to the community. At first Beale resisted, but gradually she came to realize that Arnold could manage the move. She knew the training centers were being downsized and that Arnold had fewer medical issues than most of the other residents.

Two intermediate care facilities were being built just a mile down the road where 10 people will live. One is right next to a fire station, so she knew emergency care would be nearby if Arnold had a seizure. She decided it was time.

It's a decision that other families have also made. In 2010, April Wright moved from the Chesapeake training center to an intermediate care facility in Hampton called Winburn Place. The 41-year-old woman has her own bedroom in a facility where five others live.

"She's very happy where she is," said Candace Wright, April Wright's sister. "She was happy at Southeastern, too, so it's been a smooth adjustment."

In Arnold's case, four others will share the facility where she will live, and five residents will live in a similar home next door. Beale hopes her daughter is the first to move in.

"I asked for Sandy to be the first one there, like it would be her home, and she will welcome the others."

Robert Shrewsberry, director of Southeastern Virginia Training Center, said he hopes to honor that request: "I'll fight like the dickens to make that happen."

Elizabeth Simpson, 757-446-2635, elizabeth.simpson@pilotonline.com