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Families of Disabled Await Decision on Future

As a judge considers whether to close Virginia's institutions for persons with severe disabilities, families watch, hope, and mobilize.

In Richmond, a judge deliberates: should he accept a settlement between the U.S. Department of Justice and the Commonwealth of Virginia that would close the Fairfax-based Northern Virginia Training Center and three other institutions that care for persons with severe disabilities?

In Reston, Springfield, and Arlington - among other places across Virginia - families wait with hope… and dread.

The is a legal issue. U.S. District Court Judge John A. Gibney of Richmond has heard in writing from all interested parties and will set a date to allow some to speak at a public hearing before deciding whether the state has the right to close institutions and move the residents (about 1,000 persons would be moved) to community care.

But for families involved, some of whom believe persons should be cared for in the community and others who believe it is necessary to keep the training centers open, the legalities come second. It is deeply personal, about their children’s very lives, and emotions run high on each side. 

“There is no purpose in putting a person like this in a group home,” says Jane Anthony of Reston.  “He needs to be watched 24-7.  This is not going to happen in a four-person group home.”

Anthony, who is a co-president of NVTC Parents & Associates, is speaking of her adult son, Jason Kinzler, a severely disabled man who is a longtime resident of the Northern Virginia Training Center. 

Anthony and her group are not just waiting and hoping that their children won’t have to leave the place Anthony calls “their home, their safety.” 

They have filed suit to stop the settlement and have retained a Pennsylvania law firm that successful stopped the movement of persons out of Arkansas institutions. They have some powerful advocates on their side, including Virginia Reps. James P. Moran (D) and Robert W. Goodlatte, (R) who on March 26 wrote to U.S. Attorney General Eric H. Holder saying the proposed settlement will place “more than 1,000 Virginians with profound intellectual disabilities at grave risk of abuse, neglect, and even death.”

“If it [the judge’s decision] doesn’t go our way,” we will appeal, Anthony says.

But Brandy Nannini, whose six-year-old daughter Bella has severe and medically complex disabilities, sees it very differently.

“When she was born, one of my family members said, ‘I think you should consider institutionalizing her,’ says Nannini, of Arlington. “We said 'no.' It has been very hard, but [being cared for at home] has made such a difference in her life.”

Bella is able to attend a preschool, and goes out with her family despite being completely fed through a stomach tube and requiring extra oxygen at all times. Nannini says she recently took Bella to work, cuddling her on her lap.

“Everything about her just said, ‘I love this,’” Nannini says. “That’s a great example of how she is thriving in the community. I just can’t imagine [an institution] is a better place for anybody.”

Like Nannini, Springfield resident Kim Brown is caring for her 17-year-old son Andrew at home. Both mothers bring up a point they feel is sometimes lost in the battle of whether or not to close the training centers.  If the settlement is approved, it would also free up millions of dollars, in the form of Medicaid waivers, to allow parents to care for their children at home or to be awarded to group homes and other caregivers.

Brown, like Nannini, counts herself lucky – she has a waiver.

“There are 7,000 people waiting,” for waivers, Brown says. “This settlement would provide for 4,000 waivers in the next 10 years. That’s not enough, but better than what we have.”

Andrew requires such intense care that he has to have medication every hour around the clock, Brown says, which means that he probably couldn’t even be institutionalized.

“Without a waiver, I’d have to place him a nursing home,” Brown says.

The thought causes her pain, which is why she sent the judge a letter and pictures of Andrew urging him to approve the settlement.

“If he had to be somewhere else, he might not be alive,” Brown says of Andrew, noting that he goes to school and has been to concerts and baseball games. “If we didn’t have a Medicaid waiver, he wouldn’t have this life.”

Alan D. Wooten, director of community living services at the Fairfax/Falls Church Community Services Board,  has sympathy for both sides. He understands the concern of training center parents and makes the point that a huge transfer of resources will be necessary to ensure a successful transition over the next few years.

But when it comes to the settlement itself, “We’re very supportive of approval,” Wooten says.

“We really see it as a necessary step," he says. "We feel like people with disabilities, even the level of disabilities of people in the training center, can be provided for in the community if the funding is there. We have been using Medicaid waiver funding for years to find placements for people who can’t live at home… many have the same needs as people who are in the training centers.”

Wooten is also working with the Arc of Northern Virginia on placements. The Arc, too, is strongly supportive of the settlement.

“I think it’s a great chance for Virginia to unify,” says Lucy Beadnell, director of advocacy for the Arc.  “There are a number of providers who pride themselves on serving people with either severe medical or behavioral needs. We’re not re-inventing the wheel. Many states have been doing this for years.”

In Reston, training center parent Anthony has her doubts.

“The people who are left in the training center are hard to place,” she says. “I’m not even sure the providers want our children.”

But Holly Rhodenhizer, director of residential services for Chimes, VA, a company providing group homes and other supports says they do.

Rhodenhizer says her company recently hosted an open house and discussion with current and former training center families.

Says Rhodenhizer: “We want to work with them.”

Dayglo May 07, 2012 at 01:23 AM
P.S. Just noticed that the headline plays into this myth by calling them "institutions for persons with severe disabilities." No, these are the institutions that once housed people with even mild disabilities back when there was nothing for them in the community or for children at their own homes. They were never meant to be just for people with severe disabilities - those people deserve community support as much as anyone else. The institutions were supposed to shut down entirely, a long time ago, as most states have done/
The Convict May 07, 2012 at 01:45 PM
I'm not arguing against expanded funding, Nichols. I'm saying that we need to maintain the range of services that we have available for all of our citizens, some of whom (and their families) may actually benefit from such facilities. And, btw, while there are waiting lists for Medicaid waivers for community based care, there are also waiting lists for these institutions as well.
The Convict May 07, 2012 at 01:50 PM
I am very sorry for the loss of your goddaughter. It was, no doubt, a horrible tragedy. My condolences to you. While I'm not going to say that neglect doesn't happen in institutions, we also need to be mindful of the fact that neglect also happens in community based residential facilities as well. There have been several well documented instances of such neglect in the District. Of course, just because some operators of group homes have been less than diligent in providing care, nobody seems to be clamoring for shutting down the residential programs. Maybe the answer isn't to close the facilities. Perhaps the answer is better oversight.
Judith May 07, 2012 at 01:57 PM
http://www2.wsls.com/news/2012/may/05/mentally-disabled-chatham-twins-see-glimmer-hope-s-ar-1892411/
Other Options May 08, 2012 at 09:13 PM
Other Options I agree with the poster who said there needs to be a continuum of placements As currently presented, I see the DOJ Settlement as another No Child Left Behind with a "one goal outcome for all individuals" and that is not taking into consideration two things (1) the diversity of needs of individuals in the training centers and the abilities of service providers and families without a safety net; and (2) the lifespan needs of these individuals and of their aging caregivers. Why not take the time to as a training center population is reduced to develop a system of smaller Intermediate Care Facilities throughout a region which might: (1) be the appropriate long-term placement for some with complex medical, behavioral, physical and/or personal care needs with the specialized trained staff, numbers of staff and resources to serve them well and which are in or much closer to their families; (2) serve as a transitional placement for others who are moving out of the training centers for a period of time; (3) serve as an appropriate "safety net" short - or long term placement for when a service provider or family finds one is unable to meet the 24/7 demands of one with severe challenges AND a 30-day respite option is not available until other options can be found without bouncing back to an institution; (4) serve as an appropriate placement in the future as aging caregivers themselves must seek support services.

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