Sophia DeLoatche,17, reads a birthday card her brother Charlie made. Charlie has Down syndrome and a host of other medical complications that require round-the-clock care. (Evelyn Hockstein/For The Washington Post)
The Justice Department is trying to increase the pressure on Virginia to comply with a 2012 court settlement mandating major changes to how the state cares for the severely disabled.
At a court hearing scheduled for Friday in Richmond, federal lawyers will seek hard deadlines for Virginia to fund more Medicaid vouchers that pay for care outside of institutional settings; boost construction of privately run group homes; and revamp what critics call an ineffective system of care for children with intellectual and developmental disabilities.
If the state does not speed up its efforts, the Justice Department says it will seek a contempt-of-court order.
The slow pace of change means Virginians with disabilities are “more likely to be institutionalized unnecessarily, to have to move far from their communities . . . [and] to experience crisis,” the Justice Department said in a recent court filing.
The 2012 settlement laid out a set of goals to achieve by 2022, including moving people out of the five state-run institutions for the disabled and creating more opportunities for adults in that population to find jobs.
Kymberly DeLoatche wakes up her son Charlie, 12. His family has been on a waiting list for years for Medicaid vouchers that would finance various aspects of health care. (Evelyn Hockstein/For The Washington Post) [Justice Dept. blasts Va. for not using land sale proceeds for disabled]
With seven years left, the state has moved about half of the 1,018 disabled residents who were institutionalized but has been sluggish in financing efforts to build group homes for those who remain behind.
Virginia also has delayed implementation of a crisis prevention program for children with disabilities and, according to the Justice Department, has not set aside enough money for the thousands of promised new Medicaid vouchers that were at the heart of the negotiated settlement.
Attorneys for the state say Virginia has spent $159 million to overhaul its services and has made significant progress, although they concede that more needs to be done, and done faster. “This is a 10-year Agreement with seven years still remaining,” said a filing from the office of Attorney General Mark R. Herring (D).
Federal and state officials declined to comment further.
Virginia is among the last states to initiate changes under a 1999 Supreme Court ruling that was based on the Americans With Disabilities Act and found that people with special needs are entitled to treatment in community-based — not institutional — settings.
[The boy with cerebral palsy who was blessed by Pope Francis]
Charlie DeLoatche,12, is fed through a tube by licensed practical nurse Mohamed Coly at the family’s home in Falls Church, Va. (Evelyn Hockstein/For The Washington Post) Many severely disabled Virginians remain segregated from the general population in large nursing facilities, and the state offers limited services to those who live in small group homes or with their families.
Some 10,000 Virginians with disabilities are on a waiting list for Medicaid vouchers, while Arizona — with roughly the same number of disabled people — has virtually no waiting list and is more aggressive about crisis prevention, advocates say.
“It’s just a cultural divide here,” said Lucy Beadnell, director of advocacy for the Northern Virginia chapter of The Arc, a national nonprofit group for people with disabilities. “We do have the money to offer better services.”
Since 2012, the state has increased the number of Medicaid vouchers it issues to people with disabilities from about 9,500 to about 11,500. The vouchers cover an average of $67,000 per year for people with intellectual disabilities and about $33,000 per year for those with developmental disabilities — rates that advocates and families argue are far too low to help with the total cost of care.
Demand for aid has continued to grow as disabled people live longer, diagnoses for autism and other conditions become more common and aging parents who have served as caretakers need additional help.
“Many people do not even have access to the basic community services that they need to function productively,” federal lawyers argued.
Kymberly DeLoatche and her family have waited for a voucher since her son Charlie, 12, was a baby. Charlie has several medical conditions, including Down syndrome and a rare form of pancreatic cancer. He has been hospitalized about 250 times.
“I’m paying just as much for my primary insurance as I am for my mortgage,” said DeLoatche, a travel training coordinator for The Arc of Northern Virginia. “We are living paycheck to paycheck, and it doesn’t cover.”
Virginia also has not implemented a network of state-financed crisis counselors for disabled children, more than a year after state officials said they would. The delay meant there was no one available to help Matty Pangle, an 8-year-old with autism who repeatedly struck his mother and baby sister and once climbed over the second-floor balcony rail of their Winchester home, seemingly ready to jump.
The boy’s family placed him in a state-run facility 100 miles away and later found a smaller program closer to home — a chain of events that federal lawyers say caused unnecessary trauma and could have been avoided with early crisis counseling.
“We miss him. We talk to him every night,” said his mother, Nichole Pangle. “Our family’s story is just one of the thousands that are out there.”
Another big problem cited by the Justice Department is that many severely disabled children spend months, even years, isolated inside large nursing homes and intermediate-care facilities, where care can be substandard.
The state has drafted a plan to begin moving some of those children to smaller treatment centers or back home to their families, with aid from visiting nurses. But those efforts are not scheduled to begin until spring, and many of the children would remain institutionalized until 2020 — “an extremely long time in the life of a child,” the Justice Department filing said.
Other states — including California, New York and Vermont — have programs that allow severely disabled children to live with their families or receive round-the-clock care in small facilities nearby, according to an annual survey of services produced by the United Cerebral Palsy organization.
Brooke Annessa, a social worker who has helped Virginia parents move their children home from large nursing facilities, said that at those institutions children “were not cared for in a way that I would think would be appropriate.”
Testifying in a wrongful-death lawsuit, she described seeing Mikayla Washington, a 7-year-old with Down syndrome, alone in her wheelchair and suffocating on her own mucus at the Iliff Nursing and Rehabilitation Center in Fairfax County. An apnea monitor that checked her breathing and heart rate had been disconnected, Annessa said.
Mikayla died a few months later. The family filed suit, alleging that a ventilator she relied on while sleeping had been cut off. The lawsuit was settled for $399,000, according to court records. Iliff did not acknowledge wrongdoing.
The Justice Department and state officials blame many of the system’s problems on insufficient funding.
Despite a 2009 vote to eliminate the waiting list for Medicaid vouchers by 2020, the GOP-controlled state legislature has approved only moderate increases in funding in recent years, advocates say.
During the most recent session, the General Assembly chose not to fund any extra vouchers, although it is expected to do so next year.
“This is a worse problem than it was seven or eight years ago,” said Del. Patrick A. Hope (D-Arlington), who each year proposes an amendment to the state budget requiring more funding for Medicaid waivers. “It’s a flat-out budget issue.”