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Lost in the Bayou: You’re On Your Own

In July of this year, the home-based care Angelina Iles had worked to put in place for her brother Anthony Batiste began to unravel. Home care, which the Jindal administration was forced to provide to Anthony and other disabled, came as the result of a court challenge brought by patient advocates and home care advocates against the administration in the face of continuing cuts to the program.

Anthony Batiste, who suffered a major stroke in 2010, began suffering seizures and was hospitalized on July 12. By this time, the Jindal administration had rolled out Bayou Health, essentially a privatization plan that turns Medicaid dollars into funding streams for private insurance companies that then pay for the care of people who enroll with one of the five companies offering services under the program.

Angelina Iles spent the next few months fighting new battles to ensure that her brother received the care he needed in a setting close enough to her home to ensure that the care could be properly monitored. She’d learned from her earlier experience with nursing home care that this level of personal oversight was essential to keeping her brother (or any institutionalized person) alive.

She ultimately decided that caring for Anthony at home was the best option for him, despite the burden it placed on her. So, she set out to get Bayou Health to enable her to reach that goal.

What she discovered in this new system is that there is no help available for patients or their family members who attempt to navigate the system. DHH calls this “a message of empowerment.” What it really means is that if you or your family member is enrolled in Bayou Health, you are on your own.

Angelina worked the phones, pursued every option, explored every avenue, talked to anyone who would listen. She found the new system to be full of problems that had apparently not been thought through by its designers.

At one point, she had to change insurance plans so that Anthony could be eligible for home care. That plan, it turned out, would not provide the anti-seizure medicine Anthony needed to enable him to live at home. Finally, she turned to State Representative Herbert Dixon and others to get the prescription covered.

On November 28 — 140 days after he was hospitalized — Anthony Batiste returned to his sister’s home. His health is extremely fragile. When Angelina was interviewed on December 4, there was no assurance that the necessary medicines would be available beyond early January.

Angelina Iles refused to let her brother be sent away from her because she believed he would have died in a nursing home. That victory now requires her to be his primary care provider, with an allotment of nursing visits to use over the next year.

In August, Anthony will become eligible for Medicare. That federal program will offer him rehabilitative services that Louisiana Medicaid does not provide. Angelina’s battle over the next nine months will be to continue caring for her brother while battling Louisiana Medicaid and Bayou Health to ensure her brother has the medicine and care he needs to make it to Medicare.

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Originally published: Dec 14, 2012