SPARTA, Tenn. (WTVF) — The parents of a severely disabled child say they are in a life and death battle with TennCare to keep their daughter in their home.
Jenna Passons was born with cerebral palsy and is on a ventilator.
She is now 24-years-old and currently receives round the clock, in-home nursing care, but the state says the nursing hours must be reduced because Jenna is no longer a child and must transition to adult benefits.
Her parents Jennifer and J.M. Passons of Sparta, have private insurance but rely on TennCare as secondary support for Jenna's complex needs.
TennCare paused moving children to adult benefits during the pandemic, but now they are notifying families across the state, like the Passons, of cuts.
The Passons say if Jenna can no longer get 24-hour nursing care she will have to leave their home for the first time and go to a facility, which will put her life in danger.
"This is her life, don't take her life away," her dad, J.M. Passons said.
Look around their home, and their priorities are clear.
"The most important thing is God. The next thing is family," J.M. Passons said.
During 32 years of marriage, Jennifer and J.M. Passons have built a life based on family.
Two of their children have kids of their own.
But their youngest daughter, Jenna, is still at home.
"She's a very dependent child and requires a lot of care," Jennifer Passons said.
Jenna is unable to walk or speak, and needs a ventilator to breath, but her parents see her personality every day.
"When she's happy she'll grin. She'll raise her arms up and reach for you and hug you. When she starts hugging you she don't want to let go," J.M. Passons said.
Both the Passons work, J.M. runs the family farm and Jennifer at a hospital where she gets health insurance for the family.
Jenna relies on round the clock nursing care paid for by TennCare, but they just got devastating news.
"We received a letter in the mail stating that she is up for a reduction in care," Jennifer Passons said.
The move to adult benefits would cut her in home nursing care by 8 hours a day or require her to move into a facility.
Emily Jenkins with the Tennessee Justice Center said any cut in nursing care would put Jenna's life in danger.
"We claim to value the right to every life including people with disabilities. What we claim our values to be is surface level deep at best, and you scratch a little bit and you see it's all about the money," Jenkins said.
TennCare said it paused moving people to adult benefits during the pandemic, but now families like the Passons are being notified.
A records request revealed at least 90 families with severely disabled children received adult benefits last year.
"Essentially the state is saying, 'Oops you lived too long,'" Jenkins said. "They're no longer worth it to care for, because they've turned 21."
TennCare said could not comment on Jenna's specific case due to privacy protections.
But TennCare said in a statement, "Per state law, TennCare must provide necessary care in a manner that represents the least costly option. This provides the proper balance between TennCare spending on services and TennCare's responsibility to the entire state budget and the taxpayers that fund it."
TennCare further stated it "provides education and support to members and their families to help them prepare to transition to adult benefits."
The Passons have fought hard to keep Jenna alive and said this change would be life threatening and heartbreaking.
"We are better than this, and I just feel like our government needs to really open their eyes and see what's going on, because it hurts a lot of families," J.M. Passons said.
If Jennifer quit her job to care for Jenna, the family would lose her health insurance, and they doubt they can even find a qualified facility.
Jenna's needs are so severe that many places cannot take her.
Last year Newschannel 5 Investigates reported that the state was closing community homes for the severely disabled - using them instead for disabled children in the custody of the Department of Children's Services.
The state has so far kept the homes open, but Jenkins said they are not accepting new patients like Jenna.
"The state has severely restricted the number of beds for people with intellectual and developmental disabilities," attorney Emily Jenkins said.
That leaves a nursing home as the only other out of home option for Jenna.
The family worries nurses with multiple residents, working different shifts will not be able to meet Jenna's severe needs.
The Passons have defied the odds, and kept Jenna alive.
They just want to keep her at home, but they can't do it alone.
"If you are blessed to have healthy children you are blessed every day. These children that are disabled their families are blessed, but they need help," J.M. Passons said.
Here is the full statement from TennCare:
TennCare is unable to comment on an individual’s circumstances due to federal and state privacy protections. Additionally, we cannot speculate about future needs for any specific member.
Private duty nursing is an optional benefit that TennCare has chosen to provide to adults needing a certain high-level of care. Approximately half of states do not provide this benefit to their adult members and those that do place limits on that care. Per state law, TennCare must provide necessary care in a manner that represents the least costly option. This provides the proper balance between TennCare spending on services and TennCare’s responsibility to the entire state budget and the taxpayers that fund it. This means TennCare can only provide the amount of private duty nursing hours that represents the least costly way to meet the member’s needs; however, this does not mean that a member must receive care in a facility or other institutional setting.
It is incorrect to say that TennCare stops providing care to its members when they turn 21. Beginning at age 18, TennCare provides education and support to members and their families to help them prepare for the transition to adult benefits at age 21. This includes information about the various ways individuals can continue to receive care in the community such as through TennCare’s long-term services and supports programs. Many members successfully transition to one of these programs, where they may continue to receive a similar level of hands-on care they received as children. In addition, TennCare temporarily paused transitioning members to the adult benefit during the pandemic, which is why we currently have members receiving PDN above the adult coverage criteria.
