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Son’s Future Is ‘Constant Worry on Our Minds’

May 16, 2012

By Sherese A. Gore
Capital News Service

RICHMOND – “That’s a constant worry on our minds all the time. Constant. What’s going to happen to Justin when we’re gone?” asked Brenda Palmore of Mechanicsville.

While most parents of high school graduates celebrate the end of the school year, the atmosphere in the Palmore home is more subdued. Brenda’s 22-year-old son will leave the Hanover County public school system to face an uncertain future.

Justin Palmore is one of more than 7,000 Virginians whose civil rights have been threatened by Virginia’s failure to comply with the Americans with Disabilities Act, according to the U.S. Department of Justice.

Diagnosed with Fragile X Syndrome, a hereditary mutation of the X chromosome that is a leading cause of intellectual disability and autistic behaviors, Justin Palmore has limited communication and little concept of danger. He will require assistance his entire life.

But his primary caregivers are aging: Brenda Palmore is 58 years old and Justin’s father, Kenny Palmore, is 60.

Because of his disability, Justin is eligible for a Medicaid Home and Community-Based Services Intellectual Disability Waiver. The waiver would cover the cost of day support services or residential care when the time comes that Justin’s parents are no longer able to care for him.

But “ID waivers,” as they are known, are few and far between.

Statewide, more than 6,000 Virginians on the ID waiver waiting list – a number that the Justice Department considers to be a risk factor for “unnecessary institutionalization.”

Justin Palmore, with mother Brenda, is one of 6,000 Virginians waiting for a Medicaid waiver that would provide home or community-based services.

In Hanover County, 103 individuals are on the ID waiting list. Sixty-one of those residents are considered “urgent” because of risk factors such as having aging caregivers or being in possibly abusive situations.

Justin, who has been on the waiting list for nine years, is among those deemed “urgent,” because of his aging parents.

This backlog would be addressed by the 2012 settlement agreement filed by the federal government and Virginia. It calls for creating 4,170 new ID waiver slots by 2021.

“The priority will be to transition people in the training centers to come out of them,” said Tim Steller, executive director of Blue Ridge Behavioral Healthcare, a community service board in southwestern Virginia.

“The secondary priority will be to try to make sure that people waiting for services don’t need to go into those training centers. But not all of the people on the waiting list for a waiver are going to be automatically served.”

That is what makes the upcoming changes so troubling for Justin Palmore’s parents.

Many intellectually and developmentally disabled Virginians receive residential care in one of Virginia’s five “training centers.” Such institutionalization is considered less desirable and more costly than being served in the community.

Justin, meanwhile, has been a beneficiary of the “integration mandate” of the Americans with Disabilities Act.

Since his enrollment in a Hanover County infant intervention program, Justin has participated in special education programs that focused on inclusion within the larger community.

He has been taught independent living skills such as cooking and cleaning with other special education students but attends elective computer classes with non-disabled students.

Activities such as community trips, sports and volunteer duties around Hanover High School round out the emphasis on integration.

Unless a waiver becomes available, the prospect of a day support program, which would allow Justin to continue a semblance of normality, will be out of reach. In the meantime, Brenda Palmore says she would have to stop working to care for her son full time.

What concerns her is not the lost income but what will happen when she and her husband can no longer care for their son.

“Without the waiver, the only option would be an institution,” Brenda Palmore said. “Justin living in an institution would be devastating.”

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Advocates Laud Mental Health Settlement