SEVIERVILLE, Tenn. (WATE) - A young family in Sevier County had to fight to keep a ventilator for their disabled child. It's a portable ventilator the couple uses when they travel with their son.
Oliver Hopewell, now 2 and a half, was born in July 2015 with a severe chronic lung disease, heart problems, and Down syndrome. His twin brother Tristan was born with no health issues.
Oliver is on a ventilator that allows him to breathe. Doctors tell Amy and Melvin Hopewell that Oliver's health is very fragile.
Aware of his condition, the Hopewells adopted him and his brother shortly after the boys were born. It took the couple three months of negotiations with the state to acquire a portable ventilator that they use when they take Oliver on trips in their van. But last month, they received a letter from TennCare that said the back-up portable ventilator was no longer medically necessary.
Oliver's parents disagree with the decision.
"I believe that he definitely needs it, that it is medically necessary,"said Amy Hopewell.
The January 22 letter from TennCare says the provider Lincare will no longer pay for the ventilator and that TennCare only pays for care that is medically necessary.
In its letter, TennCare wrote that Oliver's nurse could provide him with breathing care if the primary ventilator stopped working.
"His primary ventilator is a piece of equipment. It's not 100 percent. We've had issues with it twice in the past,"said Amy Hopewell.
"These medically fragile children are already fighting for their lives. Don't make it any harder for them,"said Melvin Hopewell.
The state also wrote that if Oliver's primary ventilator developed a problem, there's a medical center nearby.
"The facts show Parkway Medical Center can provide you care if your ventilator stops,"reads the letter.
"Parkway Medical Center is no longer in existence. It was never a hospital, but a clinic that closes after 5 on Monday through Friday,"said Amy Hopewell.
The couple's only option was to appeal TennCare's decision, according to this letter.
"I have filed an appeal with TennCare solutions. That was denied. His doctor at Vanderbilt has also filed an appeal and she was denied,"said Oliver's mother.
Payment for Oliver's back up ventilator, approximately $50,000, is scheduled to end next month.
"This kid, he has a terminal prognosis. Let's make him as comfortable as long as we can for as long as we have him,"said Oliver's father.
WATE 6 On Your Side contacted TennCare concerning the issues raised by Oliver's parents. Within days, TennCare said they had worked with BlueCare and the "back-up ventilator for Oliver was approved." After reviewing the case, it was agreed the "travel concerns warranted approval of the back-up device."
"It's just relieved a lot of worry for us, knowing that we have this back up if something were to happen,"said Amy Hopewell.
"We're ecstatic about it. We hope that through this case that someone else won't have to go through this. His already hard life, it's going to make it easier, make it easier for him to go places. It's just going to make it easier for him in general,"said Melvin Hopewell.
Tennessee is a state that pays for private-duty nurses to maintain ventilators and monitor the people who use them in their homes. The Hopewells have a private-duty nurse for Oliver, but not round-the-clock, seven days a week.
TennCare, however, has coverage limits, just as most state Medicaid programs do that offer ventilators. Oliver's primary ventilator was not in jeopardy of being taken away, just the back-up unit.
Under TennCare rules, there is a process for families to appeal adverse decisions. While their first appeal was denied, the Hopewells were pleased that someone finally listened.