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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.”

MichaEl Hirsch May 02, 2012 at 09:01 PM
It seems so appropriate that Judge Gibney hears this case. I have a feeling he may be hearing a few more in the near future. I am confident that the DOJ will do a great job on behalf of our disabled citizens and hopefully a suitable settlement to all will be reached to accomodate their needs. (Sadly, we have all however seen how quickly a settlement can be scuttled right here in hometown Fredericksburg.) Obviously if Judge Gibney rules against the disabled case brought by the DOJ it appears that he will see yet another one of his decisions on the disabled move up on appeal. It took Moses ten times to tell Pahroah, "Let my people go!" Maybe the mantra should be, "Let my children go!" (To Day School for Children with disabilities in a church, oh my! Or Federally protected housing, under the ADA) PS - Yes, I'm a Jewish believer in the Messiah, so please don't blast me for quoting Moses. "When you did it to the least of these..." Jesus Christ.
Michele May 02, 2012 at 09:45 PM
I have worked in both institutional settings as well as community settings. While I feel that anyone that can be served in the community should be, I also have seen people that have more personal freedoms in an institutional setting. If a family wants to care for someone at home, we NEED to give them the tools and support to do so. Many families fail in this because they are not given adequate tools, training and support. Likewise, I have seen some of the community agencies in Fairfax county and how they operate, and would never want my family member served here. Community service providers need to have the oversight to ensure that they are operating in the best interest of the residents that they serve. Another thought - there do not seem to be enough providers - residential or day/work programs to serve the residents who have waivers and are on waiting lists now... Kicking people out of an institution does not mean that there is an appropriate placement waiting for them in the community...
Mary Stachyra Lopez May 02, 2012 at 11:49 PM
Thanks for sharing, Michele. It's really useful to hear from people who have first-hand experience with this issue.
Mike May 03, 2012 at 01:32 AM
As the parent of a disabled child, I just wish Washington DC would stop telling me they know what my child needs better than I do.
Rachel May 03, 2012 at 01:35 AM
I can't tell you how many times people have asking when I will put my son into an institution. At this point, I am likely to say never. I will not cast out my own child. Caring for him, keeping him with us, is the right thing to do. But we can't continue forever without the IFFDS waiver, a waitlist we have been on for almost five years. I have heard people on the intellectually disabled list have waited decades and continue to wait. These two paths have been tied together not by the settlement itself, but Richmond's decision to move to community based care. The order doesn't say close the training centers. It's cheaper for the taxpayer, but for me, it will allow my son to live in a community where he has opportunity for a full life and is greatly cared for. Now those of us who continue to need long term, community based supports will wait even longer while this matter is litigated by the training center parents. I still have time now, but I see this matter outlasting the time we have before this situation gets truly critical for us. The DOJ settlement has provisions for transitions. No one is to be discharges without a placement. My child too would be hard to place in an institution, likely overmedicated, and would have no future in an institution. Why are there people who would rather see him ripped from me than allow this settlement to go forward and get so many off the waiting lists for help and care?
Rachel May 03, 2012 at 02:29 AM
Michele, my understanding is that the DOJ settlement doesn't kick anyone out. There have to be waivers and placements set up before discharge.
The Convict May 03, 2012 at 08:16 PM
I don't know the specifics of your situation, Rachel, but if this decision were to go against the DoJ, nobody would force you to give up your son. If you should choose to keep your son at home, you can do so. And, it's entirely likely that you will still retain the current funding and services which you already receive.
The Convict May 03, 2012 at 08:27 PM
Unless my understanding of this case is incorrect, this case is about the continuation of institutions in the Commonwealth. If the case is decided for the Commonwealth, then the Commonwealth will be able to continue the operation of its "Training Centers". However, if the DoJ prevails, these Training Centers will have to be shutdown (more appropriately, phased out) and, presumably, that funding would go into community based care. As the parent of a low-functioning child with Autism, I believe that the Commonwealth needs a spectrum of solutions in order to accommodate the spectrum of disabilities. Closing these Training Centers -- or institutions, if you will -- only deprives community and the families with special needs members of one more option for care. The bigger question is, are people "forced" into institutionalization? As it stands now, no. If you want to keep your child at home, you are free to do that. If you want to place them in a group home, you are free to do that too. And, if you think the level of care that your child requires is so profound that they require constant, unrelenting attention, then you can place the child in an institution. As much as it saddens me to say so, I know that, in the end, considering the level of attention that my son requires, he's never going to be safe in anything but a locked facility. While I am prepared to try community based care, I feel more secure knowing that we have Training Centers as an option.
Maria Koklanaris Bonaquist May 03, 2012 at 09:03 PM
Hi Convict, just wanted to clarify. The Commonwealth and the DOJ have *settled.* What's in the settlement --- phasing out of four of five training centers and freeing up of Medicaid money -- has been agreed to by both the parties. So the judge would not be finding for either side... he deciding whether the settlement itself should be accepted. Thanks for reading and for your thoughtful comments. MKB.
The Convict May 04, 2012 at 02:09 AM
Mark my words on this. This is not a zero-sum game. Only a fraction of the money that will be freed up by the dissolution of these training centers will actually be finding its way back into the community and additional waivers. And then we'll have even fewer options for our most vulnerable special needs citizens and less money to fund those few options.
TheTruth May 04, 2012 at 01:25 PM
Seeing as how my Goddaughter DIED in a Virginia nursing home as a result of neglect - it's pretty obvious which side I fall on. Everyone can live, and not just live, THRIVE, in the community. The things that go on in these facilities is horrendous. Children wasting away, neglect, abuse, death. Institutionalization goes against an individuals basic rights as a human being.
TheTruth May 04, 2012 at 01:28 PM
The point Rachel is making is that she does CHOSE that - but because we continue to fund an antiquated system of serving people with disabilities in institutional settings we don't have the ability to appropriately fund those waiting for services in the community. The cost of institutionalizing ONE person could provide several with supportive care in the community.
Eileen Nichols May 04, 2012 at 11:48 PM
Finding it ironic that "The Convict" is in favor of institutionalization. The Convict wrote, "...If you want to place them in a group home, you are free to do that too..." Wrong, Convict, there's no money for community services. The majority of the funding is funneled into the institutions. So while you may have succeeded in placing your child where you believe he needs to be, the majority of us do not have that option. I hope you are sleeping well at night, the rest of us are not.
Dayglo May 05, 2012 at 12:53 PM
But that's why we have a settlement! It says that the state must provide at least 4,200 new slots for people in the community, among many other things, and will be overseen by an independent expert and enforceable by the court. The settlement will prevent your fears from coming true.
Dayglo May 05, 2012 at 12:58 PM
It is a complete myth that institutions offer one level of care that the community can't. There is no need, no matter how severe, that can't be met in a community setting. The options go far beyond group homes. We do not need large state institutions to meet certain needs. The same level of care can, and is, replicated in the community. Many other states have closed all their institutions. Most people with disabilities in Virginia get community-based care, including many with severe needs. You are right that we need to offer a full spectrum of care - but we can do that without institutions.
Dayglo May 05, 2012 at 01:01 PM
The problem, Convict, is that more than 7,000 people can't choose anything in the community because the resources aren't there - because they are being sucked up by institutions. It costs 3 times as much per person to care for someone in an institution. Meanwhile, there is a huge waiting list to get any money in the community. That's not much of a choice.
Dayglo May 05, 2012 at 01:03 PM
Just wanted to note again that the settlement requires the state to provide community support in place of institutions, so that they aren't just "kicked out". As for oversight, I'm sure you know that every jurisdiction has a Community Services Board made up of community members who oversee services.
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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