Luke’s Story

This is Luke. Luke is a miracle, a blessing, and his parents live every moment of their lives for him.

He came home from the hospital on a ventilator which breathes for him 24/7. Luke’s parents followed the instructions in the letter they got from the State, choosing a managed care organization to provide care coordination and cover his supplies. A few weeks later, they got a letter from the MCO cutting Luke’s nursing hours. Two weeks later they got another letter cutting them more. Finally, they received a letter saying that the MCO would no longer cover Luke’s ventilator which keeps him alive.

How can you take a vent from a vent dependent child? Luke would have died without the vent. Thankfully, Luke’s equipment company fought the MCO and eventually won the right for Luke to keep his life saving vent. MCOs don’t always act in the best interest of the kids. It may not be intentional, but things like this do happen and children can die. Managed care is not a good fit for kids like Luke.

​*Luke passed away on January 1, 2017.

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