ACDL Helps Toddler with Rare Condition Get Medically Necessary Breastmilk

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ACDL helps Valley toddler with rare condition get medically necessary breastmilk through Medicaid

PHOENIX — On February 8, 2017, United HealthCare (UHC) and the Arizona Division of Developmental Disabilities (DDD) reversed its prior denial of medically necessary breastmilk for Kallista Smith, a 17-month-old baby with a disability. Kallista needs low-dairy breastmilk as her sole nutrition because of severe intolerance and allergies to formulas and food. Although her medical team looks for alternative nutritional sources, it is a slow process and breastmilk keeps Kallista alive.

UHC and DDD first denied Kallista the medically necessary breastmilk because the Arizona Healthcare Cost Containment System (AHCCCS), Arizona’s Medicaid agency, did not contract with the requested breastmilk bank in Colorado. Although there is a Human Milk Banking Association of North America Network (HMBANA) with milk bank locations throughout the U.S. and North America, there is no breastmilk bank in Arizona. Breastmilk banks receive surplus donated breastmilk and dispense it after the donated milk is pasteurized and tested.

When Kallista’s mother, Jennifer Smith, received UHC’s original denial, she had a limited supply of donated breastmilk. She called the Arizona Center for Disability Law (ACDL) for help. ACDL negotiated with UHC, DDD, and AHCCCS to contract with the out-of-state milk bank and requested an expedited hearing before an Administrative Judge to challenge the denial. Two days before the scheduled hearing, the agencies entered into a contract with a milk bank and approved breastmilk for Kallista.

“We are grateful that the milk was provided to keep Kallista healthy and growing!” said Jennifer Smith, Kallista’s Mom. “We, too, are so gratified that the State did what is right,” said Sarah Kader, Staff Attorney at ACDL, who represented the Smith family. “Medicaid requires that medically necessary services for children be provided, even if that requires contracting outside the network. Children getting the services they need, and in this case, food to live, could not be more important. In fact, it is the most basic need any of us have. We are ecstatic that our advocacy resulted in Kallista being able to get the nutrition she needs to grow.”

The Arizona Center for Disability Law is a not for profit public interest law firm, dedicated to protecting the rights of individuals with a wide range of physical, mental, psychiatric, sensory and intellectual disabilities. If you have questions about this issue, or if you have encountered similar barriers to accessing Medicaid services, please contact us by phone at (602) 274-6287, (800) 922-1447 (Toll Free), or by email at center@azdisabilitylaw.org.

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