As state closes mental disability centers, local agencies brace for flood of need

Virginia will close its training centers for people with intellectual and developmental disabilities in the next 10 years, putting more than 1,000 individuals into community-based programs that already have lengthy waiting lists for their services.

Residents in state institutions will return to their communities and to a system of group homes and day programs by 2021 as part of an agreement between the state and the U.S. Department of Justice. The agreement ends legal action against the state started by department. The agreement will phase out four of five state institutions, which currently house about 1,000 residents total.

The state has agreed to provide funding for more than 4,000 additional people to be treated by community services agencies by 2021. But officials admit that will not cover all of the need. Thousands of people across the state have qualified for care in community programs but are receiving minimal treatment because no state funding is available.

“Right now there are more than 6,000 people on the waiting list and of those there are 3,661 on the urgent list,” said Martha Maltais, of the adult developmental services division of Region Ten, the local community-based service provider for mental health services.

“The number of waivers the state is committed to won’t address the need we’ve got today with the additional people who will be added by the closures,” said Maltais. “That’s the basement level of service they are committed to providing. We haven’t hit the first floor yet, the need is just so great.”

“People are excited that the state has to do something about the people in the institutions, but there are more people waiting and who will be waiting than the state is going to be able to address,” said John Santoski, of Arc of the Piedmont, which provides programs and advocates for infants, children and adults with intellectual and developmental disabilities. “There’s a lot that needs to be done.”

State officials admit the agreement doesn’t go far enough, but they say it’s a good start in the right direction.

“While Virginia is unable to provide funds for every person on the waiting list to receive services, the settlement agreement takes a significant step forward toward improving the system,” said Megan McGuire of the Virginia Department of Behavioral Health and Developmental Service. “It will ultimately enable more individuals with intellectual and developmental disabilities to be more integrated in the local community and it results in more effective use of public funds.”

According to the American Association on Intellectual and Developmental Disabilities, an intellectual disability creates “significant limitations in intellectual functions and adaptive behavior.” Down syndrome is an example.

Federal law defines a developmental disability as “neurological or other conditions … that require treatment similar to that required for individuals with intellectual disabilities.” Cerebral palsy, epilepsy and autism are examples.

Virginia’s institutions for intellectually and developmentally disabled citizens began in the early 20th century. By the 1970s, more than 5,000 people lived 24 hours a day in the centers.

The state currently operates five training centers; Central Virginia Training Center in Lynchburg, Northern Virginia Training Center in Fairfax, Southside Virginia Training Center in Petersburg, Southwestern Virginia Training Center in Hillsville and Southeastern Virginia Training Center in Chesapeake.

In the past 40 years, emphasis in treatment, care and education — and legal rulings — have increased community treatment for intellectually and developmentally disabled people. Over time the centers’ populations decreased to where the state institutions serve primarily as a safety net for those individuals who cannot be treated in the community for a variety of reasons.

In 2008, the justice department began an investigation at Central Virginia Training Center regarding compliance with the Americans with Disabilities Act and Supreme Court decisions. The investigation expanded to include the entire state system. In February 2011, the department found that Virginia “did not provide services in integrated and appropriate settings, had not developed sufficient community services and had a flawed discharge process at its training centers.”

Virginia began negotiating with the Justice Department, focusing on providing “the best possible outcomes for Virginians with intellectual and developmental disabilities and to ensure the agreement is fiscally responsible,” state officials said.

The negotiated settlement, signed Jan. 26 by Gov. Bob McDonnell, agrees to phase out the residential centers and create 4,170 Medicaid waivers, the documents that provide state funding to pay for an individual’s treatment in the community. Although the agreed-to funding levels will likely not meet the commonwealth’s needs, state officials say it’s a start.

“These waivers will be used for individuals transitioning from training centers to the community and for the planned growth in the number of waiver slots for those on the waiting list,” McGuire said. “That means that over the period of the agreement, those waiting for community services can rely on additional slots to be available every year. In addition, the number of slots is a floor that can be added to. It represents the minimum of what Virginia must do to respond to [the Justice Department] findings in its investigation.”

State officials estimate that it costs more than $210,000 to treat an individual in a state institution annually, compared with about $75,000 in the community-based programs. Closing the institutions could make that money available to community programs, but only if the state legislature, which sets the level of funding, doesn’t use the money for other programs in the state budget.

“There’s no guarantee that the funding currently paying for the institutions would be placed into the community,” Santoski said. “It’s going to take the community going to Richmond and contacting legislators. We really need parents and caregivers to talk to their representatives and we need to start right away. We really want to help make sure the legislators do the right thing.”

McGuire said closing the institutions over a decade will help give the private sector and community service boards such as Region Ten time to expand their programs to accept more clients with a wider spectrum of needs.

“Traditionally, the provider community has responded to [increased funding] by current providers expanding existing capacity and by new providers opening up services,” McGuire said, noting that local agencies will provide the care ranging from group homes to respite facilities to support needed to live with family at home.

“All of these services are provided by community providers and there must be an expansion of community providers for the whole range of services to accommodate individuals transitioning from training centers and individuals coming off of the community waiver waiting list,” McGuire said. “The gradual transition of residents will correspond with building services in the community. Families, training center staff and community providers will have the opportunity to plan together throughout this process.”

McGuire said the agreement also creates a state-run support program for those on the waiting list but not receiving support. The state is also creating a community crisis response system called START — Systemic Therapeutic Assessment Respite and Treatment — that will begin operating in all five regions of the state by late spring.

Employees at the four training centers that will be phased out will lose their jobs, officials said. Center staff will not be guaranteed state jobs, but are eligible to apply for other openings. State officials will also help the newly unemployed identify “workforce options” and make the former employees “aware of resources such as skill building and career counseling.”

McGuire said some center staff could wind up as community service providers.

“Training center staff are among the most skilled and qualified individuals to support those with intellectual disability,” McGuire said. “We hope in the coming years staff will transition to work in other facilities, community services boards, community providers, or even become providers themselves.”

Advocates worry that increased state funding is not guaranteed and that the state is not required to fund services beyond what is called for in the agreement. They also worry that, although more slots will be available to treat the disabled, reimbursement may not meet the costs of providing services. They expect costs to increase as people with more “profound disabilities” fall into the community programs.

“Nowhere is there any suggestion in the agreement or by the state that the Medicaid waiver rates should be adjusted to take into account the more profoundly disabled coming into the system,” Maltais said. “Rates have to become an integral part of the equation. There’s recognition that we can serve our people in the community, but private providers can’t serve if the reimbursement doesn’t meet their costs.”

“We want more people treated in the community, but you have to pay for the services for that to happen. We’ll believe it happens when we see it. We don’t like to be doubting Thomases, but …” Santoski said. “Let’s say we’re guardedly optimistic.”