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Legislature must help families like the Ledfords

Johnson City Press • Dec 8, 2018 at 7:30 AM

A choice between your job, your marriage or your child’s life is really no choice at all.

Yet that’s the impossible dilemma some Tennessee families are facing every day.

Johnson City Press Staff Writer Zach Vance brought us the heartrending plight this week of the Ledford family. Jeff and Jennifer are supporting their 1-year-old son, Noah, who was born with a rare genetic condition called CDKL5, which requires constant care.

The problem for the Ledfords — and many other working parents in the state with children suffering from disabilities — is that Tennessee is the only state in the country that has not adopted a program allowing Medicaid to pick up the costs of those children’s in-home care, regardless of household income.

Jeff, a financial adviser, and Jennifer, an optometrist, can’t privately pay hundreds of thousands of dollars a year for private, in-home care, nor can they afford the expensive equipment raising Noah will need. Those specialized things aren’t covered in the medical insurance they receive through their employers, and they’ve repeatedly been denied coverage by TennCare’s CHOICES in-home care program, because their income is too high to qualify for benefits.

The Ledfords said they’ve been advised to get a divorce or quit their jobs to meet the income requirements of the TennCare program, but it should be that way and it doesn’t have to be. Washington, D.C., and 49 other states have adopted waiver programs to extend Medicaid coverage to severely disabled children without consideration of parental income and resources.

A provision of the Tax Equity and Fiscal Responsibility Act signed by President Ronald Reagan in 1982, the Katie Beckett waiver, if adopted by the Tennessee General Assembly, would be a lifeline for children like Noah and keep them at home instead of condemning them to lifetimes of hospitalization.

These families have not chosen to have the disabilities they face, and they shouldn’t be penalized because of they financial circumstances by an arbitrary measure of poverty. Parents should not be encouraged to separate or be forced into financial ruin in order to care for their children.

Our lawmakers should act immediately to approve the Katie Beckett waiver to keep Tennessee families healthy, happy and secure.

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