As a pediatrician, I treat many children with significant disabilities, and I see first-hand how hard their families struggle to take care of them.
Some of these families get help from TennCare, Tennessee’s Medicaid program, because they have very low incomes.
Those with incomes too high to qualify for TennCare have to make a terrible choice: they can place their children in institutions so that the children can qualify for TennCare without taking into account their parents’ income, or they can face the enormous financial burden of trying to provide care for their children at home without help from the state.
Federal Medicaid law provides a solution for these families facing this dilemma, if only Tennessee would adopt it.
In 1982, President Ronald Reagan heard about a three-year-old Iowa girl named Katie Beckett. Katie contracted viral encephalitis in the hospital soon after her birth, leaving her partially paralyzed and barely able to breath on her own.
Katie’s parents wanted to manage her care at home, but if they took her home, she would lose eligibility for Medicaid, and they could not afford to pay for her home care out of pocket. She could only stay on Medicaid if she stayed in the hospital—even though it cost six times as much as care at home would have cost.
After hearing about her predicament, President Reagan ordered his administration to create the “Katie Beckett Waiver,” which allows states to provide Medicaid for kids with severe disabilities at home if they would be eligible in an institution.
Tennessee is the only state that has not adopted some form of Katie Beckett waiver or a similar program known as the Tax Equity and Fiscal Responsibility Act (TEFRA) program that would allow children with severe disabilities the opportunity to receive home care, regardless of their families’ incomes.
Rather, TennCare has financial criteria that deem a lot of children with severe disabilities to be ineligible for Medicaid because of their household income.
The state is forcing families to face financial ruin to care for children at home or institutionalize them so that Medicaid pays for the care, even if that care can be provided at home at a lower price than institutional care.
Tennessee should implement a Katie Beckett Waiver or the TEFRA program for two obvious reasons.
First, if we value the lives of children with disabilities, we should give them the opportunity to live at home with their families. We know that children who live at home with their families have a far higher quality of life than those who live in institutions.
Second, children should not be penalized because of the financial circumstances of their family. Most parents’ whose income is too high for their children to qualify for TennCare still cannot afford the expensive care their children with special healthcare needs require and that commercial insurance policies don’t cover.
Children should not be forced into institutions because their parents’ make too much money to qualify for TennCare, and families should not be forced into bankruptcy to care for their children at home.
Children with disabilities will inevitably face hardships they did not choose. The least Tennessee could do is give these children the choice to live at home with their families and receive proper care.
Dr. Jason Yaun is a pediatrician at LeBonheur Children’s Hospital.