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Texas’ Medically ‘Fragile’ Kids Face Managed Care Crisis

Time may be running out in the fight to protect children in Texas considered medically fragile. Parents of the state’s most critically ill fear legislation that moves forward on November 1 will result in their children losing access to the specialists and medical treatments they need.

The Medically Dependent Children’s Program (MDCP), also known as the STAR Kids Managed Care mandate, is a Medicaid waiver program that has afforded the state’s 5,600 most medically-dependent children access to doctors and highly-skilled specialists. Many of these children were born with congenital birth defects or live with rare disorders like Laryngeal-tracheal cleft, Lissencephaly, Polymicrogyria, and Rett’s, PTEN Hamartoma Tumor and Fragile X syndromes, among many others.

On November 1, these “fragile” children will move from current PPO style health care plans to HMO managed care, according to Hannah Mehta, director of Protect TX Fragile Kids, a grassroots, non-profit organization that represents over 1,000 families statewide with children who are fighting to keep these life-saving services to their children in place.

Mehta told Breitbart Texas many of the families with children in this program have private insurance. Parents rely on the waiver program to offset the astronomical costs of healthcare services not covered or that exceed the allowable benefits of private health insurance for their medically dependent children. Mehta, also a parent of a medically fragile child, said even with private insurance, over 50 percent “have been forced to turn to the waiver program for help.”

This shift to managed care happened when the medically fragile were lumped into Senate Bill 7, passed during the 83rd legislative session. The law was intended to reduce fraud in the Medicaid system. It mandated all of the state’s 180,000 children on Medicaid to a Managed Care Organization, including the medically fragile population.

Parents fear they will no longer be able to see their children’s specialists under the new program and only be able to seek treatment from Medicaid registered physicians. A large cause for this concern stems from President Obama’s 2010 Affordable Care Act. Since its passage, doctors are reluctant to take Medicaid patients given low reimbursement fees and voluminous paperwork.

Said Mehta, “As a result of this mandatory change to highly restrictive regional county-based managed care, thousands of very medically fragile children will lose access to the highly specialized providers who are essential to treating their complex and rare conditions.”

Parent Jessica Coker, whose son sees 23 doctors for Apert Syndrome, says they may lose 16 of their physicians under managed care, according to Fox 26 Houston. The boy’s father fears kids will die. Across the state, affected families have implored state officials to rethink this move to managed care. So did the STAR Kids Advisory Committee, which oversees these medically fragile children. On October 4, the committee voted 12-4 to postpone any changes to the program for a year. While the committee advises the Texas Department of Health & Human Services Commission (HHSC), it does not have the authority to mandate a delay.

By email, Representative John Zerwas, M.D. (R-Katy) told Breitbart Texas that this summer he wrote a letter to HHSC Commissioner Charles Smith requesting an implementation delay.” He said: “I believe that a delay must be considered if there is any doubt that proceeding with the planned rollout date will upset the services these critically ill children receive.”

Zerwas noted that while HHSC staff has worked diligently on the implementation, there are a “significant number of parents, families, and caregivers, specifically within the Medically Dependent Children Program, who continue to have valid concerns.” He wrote, “It is crucially important that HHSC addresses these concerns and that all assurances are given that services will not be interrupted, that the care these children receive will not be compromised, and that the managed care companies are wholly ready to fulfill the responsibilities of this special population.”

Many of these families feel their fate rests in the hands of Sen. Jane Nelson (R-Flower Mound), the lead author of SB 7. In an emailed statement, Nelson told Breitbart Texas, “All medically necessary services are continuing, and we are carefully monitoring the transition to ensure that we meet our commitment to those with special needs.”

In a letter obtained by Breitbart Texas, Nelson wrote to Commissioner Smith on October 4, saying, in part: “Be advised that I have met with several families of medically fragile children, and assured these families that their Medicaid benefits will continue under the new managed care service delivery model.” She emphasized: “It is critically important that we live up to our commitment to this fragile population.”

Also on October 4, an HHSC communications official told WFAA: “STAR Kids members will be able to continue seeing existing primary care and specialty doctors for one year even if the provider is out of network. This will maintain continuity of care.”

Parents remain skeptical.

Follow Merrill Hope, a member of the original Breitbart Texas team, on Twitter.

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