The parents of a disabled 14-year-old in Newport have been told their son is no longer disabled. As a result, he’s losing his Social Security Disability and eventually his insurance from TennCare.
The family went through the same difficult process four years ago. Twice in his lifetime, Isayah Lewis has undergone open heart surgery. The first time, he almost died. He underwent the same procedure two years ago.
Then a few months ago, his parents received notice Isayah is losing his Social Security.
Isayah looks like any other boy his age, but he’s disabled. The eighth-grader has faced quite a few medical hurdles in his life, including two open heart surgeries and three other heart surgeries. The second open heart procedure was a year and a half ago.
It’s still difficult for his parents to look at the pictures.
“While he was in the recovery room, he passed away from complications. Then they did emergency surgery to hook him up to a machine up to him to where his heart would beat,” said his dad Daryl Lewis.
“I hardly, rarely do anything that normal kids do,” said Isayah.
He says he’s afraid of needing another surgery.
Jessica Lewis says her son is on a regimen of medications to maintain his health – blood thinners, medicine for his kidneys, and heart meds. If he loses SSI, Isayah’s TennCare coverage stops, creating a financial burden on the family. Jessica Lewis is a stay-at-home mom, Daryl Lewis is a lab technician.
“He had six hospital stays in 2017,” said Daryl Lewis.
“He still has limitations. We were told if he gets a bump, he could bleed internally and we wouldn’t know nothing about it,” said Jessica Lewis.
A letter from Social Security in May 2015 claimed Isayah was no longer disabled. Jessica Lewis and her husband fought the decision, went through a lengthy appeal, and hired an attorney. It took a year and a half before an administrative judge said Isayah was disabled and restored his disability.
Regarding this latest decision, WATE 6 On Your Side contacted Social Security and asked why Isayah is considered no longer disabled again. In its response, a spokesperson wrote: “In our evaluation there can be significant changes as children age in their condition and limitations,” and that, “medical records do not support that Isayah Lewis has significant limitations.”
Social Security also said it’s in contact with the Lewis’ providing assistance. After losing another appeal last fall, the couple called with encouraging news the other day.
“The case is going to get pushed through the appeals process straight to the judge,” said Daryl Lewis.
Appearing directly before an administrative judge will speed up the process.
Social Security also said that qualifying for disability benefits for minor children not only depends on being found medically disabled but on the parents’ income. They said Isayah’s father made too much money in 2017. However, that notice ending Isayah’s disability was overturned by the administrative judge.
These cases are complicated and emotional for families. They’re now waiting on a date to appear before a judge in Morristown.