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Natalie Gregory, a Southlake resident, whose daughter Christina Gregory has Congenital Central Hypoventilation Syndrome (CCHS) says, “Our daughter’s condition is so rare that only about 400 people in the United States have this genetic disorder. There are a limited number of doctors who have even heard of her disorder, CCHS, let alone are willing to take her on as a patient. Since her birth, we have searched for the right physicians and hospitals who are able to help my family and I care for Christina’s rare medical needs and keep her healthy. With help from the MDCP program, alongside our primary private insurance, we have been able to see physicians who can care for children with complex medical conditions like CCHS. That is priceless to us.”
Texas Children’s Lives & Medical Care are on the Line
(DALLAS, TX) – This fall, thousands of Texas' most medically fragile children will no longer be allowed to see their current doctors and therapists who have been caring for their delicate lives and medical needs. In order to remain healthy and stay out of the hospital, these children require immediate access to highly specialized doctors in their fields. Beginning November 1, these children will no longer have that option.
Special needs children in the state’s Medically Dependent Children's Program (MDCP) will be forced to transition to restrictive private regional managed care insurance plans which act similar to an HMO. These children currently have health plans similar to a PPO which allow them to see the doctors and specialists they need for their conditions.
As a result of a mandatory change in policy, many children will lose access to highly specialized doctors who are essential to treating their complex conditions.
With Christina’s medical condition being so rare, Gregory is concerned that the doctors she will be forced to choose from under this new state program will not be as familiar with CCHS as her current team of doctors.
Families should be able to make their own decisions in the best interests of their child’s well-being, especially when it comes to their medical needs.
“To lose our doctors because of this restrictive program would be disastrous and have life-threatening repercussions for my daughter,” explains Gregory. This is just one family of thousands in the state of Texas whose child’s medical care is set to change in the fall, unless something is done to protect these vulnerable children.
Please help these children and their families by visiting http://www.protecttxfragilekids.org/what-you-can-do.html to sign a letter saying that you support the right for these families to make the decisions when it comes to their child’s medical needs. For more information, visit: www.protectTXfragilekids.org, “Protect TX Fragile Kids” on Facebook, or @fragilechildTX on Twitter.