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DOJ: Virginia fails citizens with intellectual and developmental disabilities

ASHLAND, Va. (WTVR) – It’s a pleasant fall afternoon at Randolph Macon College, and inside one of the rooms at the┬áDuncan United Methodist Church you’ll find Sharon Straus busy at work.

In between plucking beads from a weathered plastic bag and etching fluorescent yellow
marks on an empty white cap, Sharon looks up and flashes her signature smile.

It’s a big smile- the kind that spreads across her entire face, invading her cheeks and the rest of her features before finally resting in her eyes, which always seem to be expressing something amazing.

Suddenly, Sharon gushes, “I got one!”

She holds up a green bead, and waits for instructions from a nearby Randolph Macon student, a blond-haired freshman, about where the bead should go.

“Where do YOU want it to go, it’s your hat,” replies the girl.

The exchange is one of many Sharon will have with students as she cobbles together a custom-made hat with her name emblazoned in black foam stickers across the brim.

Sharon has an intellectual disability, and every other Friday she participates in a program offered through Randolph Macon that gives students and people living with disabilities the opportunity to learn and grow from each other.

But the classes at Randolph Macon are hardly the extent of Sharon’s community involvement.

Twice a week she works at American Family Fitness, where she scrubs the mats vigorously, wipes down the equipment and tends to towels and laundry. The one constant throughout it all is that the broad smile never seems to vanish from her face.

At one point, while Sharon kneels on the ground spraying disinfectant on a mat and preparing to clear it off, I ask her what stands out as the hardest part of her job.

“I love it,” Sharon responds, without even looking up.

Right now Sharon’s world functions in relative harmony, all things considered. She has a regular job, a creative outlet, a family that loves her and a sister who cares for her in a one-story home in Ashland.

The balance, though, is precarious.

“I pray, I pray every single day,” says Janet Straus, who’s been Sharon’s primary caretaker for 27 years.

“I pray and ask God- I ask him that before he takes me, to take her.”

The anxiety and fear that grip Janet Straus is not an isolated situation. Rather, it’s emblematic of how many families across Virginia feel who live with disabled loved ones.

Virginia has granted some 9,000 intellectual disability waivers that ensure people with disabilities can remain in the community, and not in an institution.

The waivers offer services like respite, supported employment and specialized care- but there simply aren’t enough of them to go around.

Sharon Straus is one of nearly 6,000 people on a waiting list for the ID waiver, provided through Medicaid.

Due to Janet’s own health problems and battle with hypertension, Sharon is listed as ‘urgent.’

“That’s why I panic,” says Janet, sitting in a puffy, white chair in her living room that almost seems to engulf her. “Because without the Medicaid waiver where would [Sharon] go? What would happen to her?”

The question borders on the rhetorical, because no one can say definitively where Sharon would end up- not Janet Straus, not the Secretary of Health and Human Services, Dr. Bill Hazel, not advocates for disabled Virginians.

A two-hour drive outside of Richmond, past numerous open fields, countless haystacks and an unending stream of fall foliage, sits the Central Virginia Training Center.

One of five Virginia institutions for the disabled, ‘CVTC’ lies nestled in a remote corner of Amherst County, just outside of Lynchburg.

On a recent drizzly morning, Director Dale Woods offers CBS 6 news a tour of the facility.

We crisscross the campus- large enough to pass for a small college or university- and stop by activities rooms, dining areas, living quarters and training areas.

The center’s residency is the largest in Virginia at 370 people, though that census has been nearly halved since 2000.

CVTC also employs a staff of 1,247 people as of October 1, 2011.

“The mission here is really two-fold,” explains Woods, as we pause in a room with green paint where staff members help residents prepare food items.

“The first is to ensure the disabled are cared for appropriately.”

After a brief pause, Woods continues, “the other part of the mission is to help people become more independent- to touch skills that people need, skills of independent living.”

My photographer and I observe examples of this from the second we enter the facility.

In the one of the activities rooms, a woman with visual impairment tones her senses by fitting metal rings into a box. Another person sits in a wheelchair, head bowed and headphones on, while a staff member gently rolls a massaging device over her shoulders.

And in the game room, several employees gather around a man in a wheelchair, and help him simulate a round of bowling on a makeshift lane.

“Our job is to provide whatever support a person needs in order to accomplish something,” says Woods, “but you don’t want to overdue the support.”

But is the CVTC offering the right kind of support?

Or more specifically, is Virginia’s approach to caring for people with intellectual and developmental disabilities appropriate, humane and in accordance with federal law?

Those questions were tackled by the Department of Justice in a report filed last February.

Following a mulit-year investigation into CVTC, as well as an examination of Virginia’s services for the disabled, the report found Virginia comes up well short of federal standards.

Virginia “fails to provide services to individuals with intellectual and developmental disabilities in the most integrated setting” possible, the report says, which stands in clear “violation” of the Americans With Disabilities Act.

Nearly all of the report’s criticism focuses on a lack of “community-based” services, and a reliance on institutionalization.

“Do we have enough waiver slots, no,” said Dr. Bill Hazel, Secretary of Virginia’s Health and Human Services. “Are we working to get them? Yes.”

As secretary, Hazel oversees twelve state agencies, including the Department of Behavioral Health and Developmental Services.

He says Virginia has made tremendous strides in recent years bolstering services for the intellectually and developmentally disabled, including a $30 million trust fund and 275 waiver slots passed in last year’s assembly.

But the secretary also acknowledges it’s not enough.

“Our goal is to keep people in the community,” Hazel said. “Our goal is to have the community resources so that there aren’t many people living long distances from home and in institutions.”

In the middle of a recession, however, money for all services is tight.

“Community care doesn’t just happen,” Hazel continued. “It doesn’t just spring up magically. It’s something that has to be created, and that’s a barrier in-and-of itself. The funding is an issue.”

Funding for the disabled is also an issue Virginia hasn’t quite reckoned with, yet.

In 2009, Virginia ranked 45th in the country in spending toward services for people with developmental disabilities, joined by states like Alabama, Florida and Texas at the bottom of the list.

By contrast, the Commonwealth also ranked 7th in the U.S. in per capita income.

“It’s complicated,” noted Hazel. “You can’t just throw money at problems. You also need to have a plan that makes it all work.”

Janet Straus says she understands the state’s fiscal situation, but also knows the disabled community has been underserved for a long time.

“Hopefully it will change,” says Janet, as she looks at her sister in the kitchen. “Most definitely it will change. We need a change.”

A settlement between Virginia and the DOJ would likely result in more spending on community-based services, and subsequently more waiver slots.

But families like the Strauses realized long ago that fixes won’t develop instantaneously. The road to addressing the nearly 7,000 people waiting for either the ID or DD waivers will almost certainly be a long one.

“These people who have intellectual disabilities, they are humans,” said Janet. “And they have a life, just like we have. They deserve a life, just like we have.”