Waiver settlement is blessing for mother, son

RELATED: What’s best for disabled?

BY AMY FLOWERS  UMBLE

Colena Jones was driving home on Feb. 2 when she got the phone call that changed her life.

“You’d better pull over,” Virginia McSwain said.

And then the Rappahannock Area Community Services Board’s support coordinator gave Jones the news: Her son had just been approved for a Medicaid waiver.

That waiver would pay for nurses to take care of Vernon Jones Jr., who can’t swallow, breathe or eat on his own.

And it will provide peace of mind for Colena Jones.

But the Stafford County mom wants that same peace of mind for other parents in her position—more than 300 area residents are waiting for the intellectual disabilities Medicaid waiver that’s helping Vernon.

“Even though Vernon was blessed with this waiver, there are so many other children out there who need it,” she said.

A recent settlement between Virginia and the U.S. Department of Justice would open more waiver slots for those families—and the more than 6,000 waiting statewide.

But 13 families with loved ones in state institutions worry that the settlement will mean closing those training centers. They recently filed a court challenge to the agreement.

Jones sent a letter to U.S. District Judge John A. Gibney Jr., sharing her story as an example that people with severe disabilities can be cared for outside of an institution—as long as 

they have the support the waivers provide.

“It’s important that [the judge] makes the right decision for all of these children,” she said.

VERNON’S STORY 

Vernon was born premature in 1991. He weighed little more than a pound. Vernon, who goes by “Junior” or “Junbug” to those closest to him, was a little fighter. He spent six months in the neonatal intensive care unit.

From the beginning, doctors and hospital social workers would ask Vernon’s parents about putting him in an institution.

“They never used that word,” Colena Jones said. “But they would ask, ‘Have you ever considered putting him in extended care or long-term care?’”

Her answer was always the same: Absolutely not.

Vernon was raised at home with two brothers and a sister. He had hydrocephalus, a seizure disorder and intellectual disabilities.

Over the years, Vernon needed several surgeries to repair a shunt that kept fluid off his brain. 

 But he remained upbeat and charming. Vernon had limited language, but he could talk and used a wheelchair.

And everyone at school knew him by his beaming smile, loud laugh and independent streak.

He would often wheel himself down the hallways of Mountain View High School, squealing with delight.

That is how McSwain first met Vernon. He had been on the waiting list for an intellectual disability waiver since his teen years. As he prepared to leave high school, McSwain became his case manager.

 Jones wanted the waiver because it would pay for day support services after her son left school. Those services cost more than $100 per day, and few families can afford that. Most day-support clients have a waiver.

In October, Vernon went in for his 18th shunt surgery.

“These were just a part of life for us,” his mother said, “It was like getting a tetanus shot.”

She doesn’t know exactly what went wrong. But Vernon never quite recovered from the surgery.

 He lost his speech and his ability to move his limbs.

He also lost the ability to swallow or breathe on his own. Vernon stayed in the hospital for three months.

During that time, Jones watched the nurses like a hawk, writing down everything she saw them do. She turned to the Internet.

And she created a manual of how to take care of Vernon.

She had no medical training, but Jones was convinced that Vernon needed to be at home.

“The doctors recommended a long-term facility,” she said. “But it wasn’t even an option for us. We didn’t even think about it. We were bringing our son home.”

They revamped his bedroom with a hospital bed and filled it with the supplies he would need: rolls of gauze, syringes, diapers, tubes, medicine. But they also put up cheerful posters and plastered the room with family pictures.

Despite the handwritten manual and the refurbished bedroom, Jones was unprepared for the toll Vernon’s care would take.

She, her sister and her husband carried out most of the duties. Vernon needed round-the-clock care. His mother  slept on a couch outside his bedroom, sleeping in brief snatches of time.

By January, she was burned out. Around her husband, her sister and her other children, she put up a good front.

But alone, she turned to fervent prayer—screaming, crying and pleading for help.

“I don’t know if I can do this anymore,” she prayed frequently.

A CHANCE FOR A WAIVER

Jones knew that the RACSB had two waiver slots available and that McSwain planned to present Vernon’s case to the committee that would decide who would get those waivers.

She put her church, her family and her friends on prayer detail during the time the committee met.

Still, she couldn’t believe it when McSwain called with the news.

It’s a reaction McSwain is used to. She likens the call to telling a financially strapped parent that her teenager is getting a full scholarship to college—the news will give that child a future she didn’t have before.

“The best part of my job is to call parents and say, ‘You have the waiver,’” McSwain said. “This could change their lives forever.”

It has made a huge difference to the Jones family. Now, four trained nurses come into the home to take care of Vernon, 24 hours a day.

The Jones’ insurance  covered only one weekly home checkup from a nurse.

Vernon also receives support from a personal attendant who can help with the nonmedical care he needs, such as diaper changes and socialization.

The nurses adore Vernon and his family, said Esther Selli, who works with him on weekdays. She cleans his tubes, gives him his medicine, bathes him.

But she also keeps a running dialogue with Vernon, who seems to enjoy her musical African accent. She spends a large part of her shift trying to coax smiles and laughs from him.

It’s easy to see why. The smile transforms his long, thin face and shows up in his dark brown eyes. When Vernon laughs, you can still see the vestiges of the teen who wheeled down his high school hallway, chortling with glee.

Selli is convinced that Vernon wouldn’t smile or laugh so much if he were in a training center or nursing home.

“You can see that he is happy to be home,” she said. “I just hope the Lord blesses the judge’s heart so he can see that other children need to be with their families, too.”

Amy Flowers Umble:   540/735-1973

aumble@freelancestar.com

THE ISSUE: In 2011, the U.S. Department of Justice filed a complaint that Virginia violated the civil rights of its residents with intellectual disabilities by not providing adequate services. The state settled the case Jan. 26, offering more community support for residents with intellectual disabilities. In March, 13 families of residents in training centers challenged the settlement, saying that the agreement would close the institutions and displace their loved ones.

WHAT IT MEANS: More than 6,000 Virginians wait for waiver slots that would pay for respite care, job training, day support, nurses and more. The settlement would provide at least 4,170 new waiver slots by June 10, 2021. But the 13 families argue that if the state focuses money toward waivers, institutions would have to close.

WHAT’S NEXT: U.S. District Court Judge John A. Gibney Jr. will now consider the families’ challenge and briefs filed in the case.

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