STAR Kids Fails Kids

Managed Care Adversely Affects Medically Fragile Children


Ashley’s Story

Ashley has Apert’s Syndrome, which requires her to travel from Houston to Dallas for care from a specialized team of doctors. Of the 4 specialists she saw on a recent trip, only one is willing to work with the STAR Kids program for Ashley’s continuing care. The other three are unable to agree to the onerous terms and conditions required by the managed care organizations. The expensive medications prescribed by this team will also no longer be covered under STAR Kids because the providers will not be considered in-network. Ashley will require multiple surgeries in the future and her family does not know how they will provide for Ashley’s future needs.

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.

Aria’s Story

Aria was about 7 years old when her family received a letter from the State indicating they had to choose a managed care organization (MCO). They selected the one that seemed to have all of their providers in-network except for Aria’s pediatrician. They were told that since they had primary private insurance they could continue to see their current pediatrician–but then the managed care insurance company would no longer cover anything prescribed by their current doctor.

Aria’s mother spent full days on hold or playing phone tag with the MCO to get basic things Aria needed like feeding tube supplies, medical formula, and more covered. Her family was required to submit pictures, video, testimony, and more to prove medical necessity every time Aria’s docs, therapists, and specialists sent something to the MCO. It was nearly impossible to provide for Aria’s basic needs. After a tear-filled breakdown over the phone with a Medicaid customer service rep, Aria’s mother learned she could transfer back to Traditional Medicaid and that the difficulties obtaining Aria’s medical supplies would no longer be an issue.

It’s hard enough to keep fragile children at medical baseline without fighting constantly for basic needs.
Unfortunately, under the STAR Kids mandate, families are no longer allowed to opt out of managed care. These nightmares have now become commonplace and are inescapable.