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Jessica's Story

Advocacy for Durable Medical Equipment – VNS Devices

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Jessica Seager faced a health care related dilemma that potentially threatened her health, independence, and her life.  Jessica is a person with epilepsy and a neurological disability that requires her to use an electronic device called a VNS (Vagus Nerve Stimulator) to prevent debilitating seizures and to allow her to live a life of dignity, respect, and independence. The VNS device is similar to a heart pacemaker in size and electronically stimulates the vagus nerve to prevent seizures.

Medicaid originally paid for the VNS implant when Jessica was under 21 years of age through the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program, known in Kansas as Kan Be Healthy.  Later, the batteries in her unit needed to be replaced, but she was over the age of 21.  Kansas Medicaid claimed that it did not provide VNS treatment for children under the age 12 or adults over age 21, so Medicaid refused to replace the batteries for the unit it purchased just a few years earlier.  DRC staff felt this was a policy that just didn’t make sense.  Most Medicaid programs in other states as well as private insurance programs cover this treatment for persons of all ages. Without the replacement of these batteries, Jessica’s debilitating seizures would be uncontrollable and severely impact her daily functioning.

Brooke discussed her problem with the Disability Rights Center of Kansas (DRC) to obtain some help.  During legislative hearings on the budget, Jessica’s mother, Brooke Seager, and staff at the DRC talked with members of the House Social Services Budget Committee about the reasonableness of a policy that funds VNS implantation, but won’t replace the battery.  This advocacy along with the support of several key legislators caused Kansas Medicaid to make a formal review of their policy. As a result, the Kansas Medicaid office thankfully changed the policy and now covers VNS battery replacements for situations like Jessica’s.  Kansas Medicaid also changed its policy on VNS devices in general, which was a positive change for all people with disabilities who need this life saving device.  Jessica underwent her surgery to replace the batteries in her VNS on July 8, 2004, and Medicaid paid for the procedure.

Jessica’s story is an example of the huge impact that one family can have when they stand up for what’s right.  In this case, the Seager family was able to change Medicaid policy to the benefit of all Kansans.

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