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The Medicaid Waiver Waiting Game

Louisiana Developmental Disabilities Council

Last year, groups advocating for Louisianians with developmental disabilities sought and won an expansion of supports through Medicaid waivers. But when mid-year cuts to the state budget were enacted, those waiver slots were frozen. Rhiannon Traigle is one of many parents asking the legislature to lift the freeze.

Credit Louisiana Developmental Disabilities Council

Traigle'sson, Riley, was just five years old when he was diagnosed withDuchenneMuscular Dystrophy, a fast-progressing developmental disability.  He was born without a protein calleddystrophin, meaning that Riley can't maintain thecreatinethat makes our muscles grow.  Instead, as he ages, his muscles will deteriorate."Boys with Duchenne like my Riley tend to lose their ability to walk around ten to twelve years old.  They lose their ability to use their arms then, to hold up their own heads, and to have any control over their bodies. And since the heart and lungs are also muscles, around the age of twenty my son will lose his life," explains Traigle.

 

Children and adults with extreme developmental disabilities can ask the state to waive Medicaid restrictions, giving them access to support, such as motorized wheelchairs, transportation for doctors visits, or in-home nursing. 

 

The Traigles applied for a waiver immediately after Riley's diagnosis.  That was seven years ago.  They've been on the waiting list ever since.

 

Riley is one of 13,000 people on the waiver waiting list.  Most end up waiting ten years or longer.

 

"My husband is a police officer," says Traigle, "and I work in non-profit helping families with children like my own." They provide all of the care for Riley themselves, paying for all of his medical expenses either with personal insurance or out of pocket.

 

As a result of the 2015 mid-year budget cuts, over 1,000 waiver spots were frozen, or left unfilled.  Traigle says that is making it even harder for her family to remain hopeful for helping Riley.  

 

"Without waiver services, we will risk losing our jobs and financial means to provide the round-the-clock care he will need.  If we continue to have to wait for waiver services, Riley may not be here to receive them," she says.

 

The freeze on waiver spots is also included in Gov. Jindal's Fiscal Year 2016 budget proposal.

Copyright 2021 WRKF. To see more, visit WRKF.

Wallis Watkins is a Baton Rouge native. She received her Bachelor of Arts in Political Science and Philosophy from Louisiana State University in 2013. Soon after, she joined WRKF as an intern and is now reporting on health and health policy for Louisiana's Prescription.

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