Published: November 03, 2009 03:02 pm      

Boy fights for life while mother fights red tape

Just two months after Laney Hall had a severe allergic reaction after unknowingly drinking a milk by-product, his life is completely changed. Rather than spending time with his friends and helping out his mom, the 14-year-old lies in bed at Hillcrest Nursing Home. He has a tracheostomy in his throat, he can’t move willingly, his eyes remain glazed over, and he gets his food through a feeding tube. Every few seconds his body jerks with painful-looking spasms, and his forehead beads with sweat from the effort.

Watching over him, dabbing his brow, is Hall’s mother Donna Cravens, whose eyes show the strain of the last 61 days.

“They’re telling me he’s not going to recover,” she said. “In all of the thinking parts of his brain, the cells went too long without oxygen and died. Brain cells can’t recover themselves.”

But as difficult as her situation is, Cravens is now battling a new fight. Ten days ago, she got a letter from the Cabinet for Health and Family Services saying Hall’s Medicaid benefits will be terminated as of Jan. 1.

Hall fell sick at a friend’s house when he ingested whey, a milk by-product, in a powdered drink mix. Sensing he was going into anaphylactic shock, Hall immediately called his mother, who raced to the friend’s home with an EpiPen. She found her son shaking in a chair and struggling to breathe.

Cravens gave her son a shot of adrenaline to open up his airways, but it didn’t have any effect. By the time first responders arrived on scene, Hall had gone into cardiac arrest. In the coming hours, he also suffered several strokes.

Doctors were able to stabilize Hall, but his health continues to be extremely precarious. He needs constant care, both by nurses and, Cravens feels, by her.

“I can’t leave him,” she said. “It’s a 24-hour a day job.”

Before Hall suffered his brain injury, he received a monthly check for Supplemental Security Income by the Social Security Administration. Hall was eligible to receive the monthly payment because of his allergies.

Cravens also received child support from Hall’s dad. The SSI payment increased and decreased according to whether Hall’s dad paid the child support each month.

“Now through forever, he gets zero,” Cravens said. “They’re saying he’s got an income because he gets child support. But he had that before he got sick.”

Frank Viera, public affairs specialist with the Social Security Administration’s regional office in Atlanta, said the change is due to the fact that Hall is now living in an institution and not on his own.

“If they’re living in an institution, then the most they can get from SSI is $30 a month,” Viera explained, adding because Hall is considered to have an income (i.e. his child support) the SSI payment is zero.

“SSI is a needs-based program,” he said. “If they’re in an institution, then their needs are being met by that institution.”

Because Hall no longer qualifies for SSI, he also does not qualify for Medicaid.

“It’s like a domino effect,” Cravens said. “And he doesn’t qualify for Medicare because he’s too young ... Before when he was at home, he was getting SSI, Medicaid and child support. And now that he needs help, they’re going to take it all away.”

Caught between this rock and a hard place, Cravens has written a letter asking the child support court order be terminated.

“Obviously, it’s doing more harm than good, which doesn’t make any sense,” she said.

While she understands that’s what she needs to do, Cravens said she doesn’t understand the rationale. On an exceptionally limited income herself — a cancer survivor with ongoing health problems, she’s on disability — she relied on the child support money to buy special things for her son.

“What if I want to go and buy him something?” she said. “What if I want to get him a nice pair of pajamas?”

Already dealing with the fact that her son won’t recover and now sinking under this added pressure, Cravens is near her breaking point.

“He’s laying there helpless,” she said in tears. “I can’t get any help anywhere.”

Staff writer Tara Kaprowy can be reached by e-mail at tkaprowy@sentinel-echo.com.