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Call for Comment: Florida Medicaid Considers "Katie Beckett Waiver" for Medically Fragile

From February 24, 2020 to March 24, 2020, the Agency for Healthcare Administration is requesting comment regarding renewal of Florida's Model Waiver. Florida's Model Waiver has 20 total slots for children diagnosed with spinocereballar degenerative disease OR who are medically fragile and have resided in a nursing home for 60 days or more.

Like the Agency for Persons with Disabilities ("APD") iBudget Waiver, once enrolled in the Model Waiver, only the child's income and assets are counted; their parents' income and assets are not deemed to them to determine Medicaid eligibility. Florida, in the past, has referred to the Model Waiver as its Katie Beckett Waiver.

In reality, Florida does not have a viable Katie Beckett option or waiver.

The Katie Beckett option (also known as the TEFRA option) or a Katie Beckett lookalike Waiver is a Medicaid program designed to waive the parent to child deeming rule for Aged, Blind, and Disabled Medicaid when a child meets a certain level of care, i.e., they are medically fragile. This allows medically fragile children to enroll in Medicaid and access all needed care to live safely at home, including care that is not covered by commercial insurance such as home healthcare and certain medical equipment and supplies.

Thus, we are asking parents and other stakeholders to provide comment to AHCA through the Model Waiver about why a viable Katie Beckett option or lookalike waiver is needed here in Florida.

Some examples of comment may include:

  • Comments about how families of children who are medically fragile may be forced to rely on the Medically Needy program to, monthly, establish share of cost in order to access needed home healthcare, consumable medical supplies and durable medical equipment. As families of medically fragile children know, many home healthcare providers do not accept Medically Needy and, for the few who do, the process of establishing share of cost every month can be overwhelmingly difficult to maneuver. Additionally, from month to month, families cannot be certain they will meet share of cost for the month and the concern as to whether they'll meet their child's medical needs is always at the forefront of their mind.

  • Comments about how families make difficult choices about forgoing employment and other opportunities because they are worried they may go over income and/or asset limits for Title XXI/CHIP or Title XIX Medicaid Insurance.

  • Comments about how families even though are on a fixed budget, spend upwards of $300 per month on a full pay Kidcare plan so they can access services not covered by commercial insurance.

  • Comments about medically fragile children whose diagnoses do not meet the statutory criteria for developmental disability in order to qualify for the iBudget Waiver, like Lincoln. Or, offer comment about those children who are waiting years on Florida's iBudget waitlist to receive Medicaid eligibility and services.

Regardless of how those individual family circumstances play out, the Model Waiver comment period is a great opportunity to educate the state about how hard it is to care for a medically fragile child who does not qualify for Medicaid due to a family's financial circumstances.

Instructions for comment: To provide comment, you can simply

  • Submit email comments to FLMedicaidWaivers@ahca.myflorida.com.

  • Submit comments by mail to Bureau of Medicaid Policy, Agency for Health Care Administration, 2727 Mahan Drive, MS 20, Tallahassee, Florida 32308.

When submitting comments, please include “Proposed Renewal to 1915(c) Model Waiver” in the subject line.

For additional information, a fact sheet produced by the Florida Developmental Disabilities Council in 2012 about the Katie Beckett Waiver/Option is attached. You can also contact Florida Health Justice Project attorney, Katy DeBriere, with any questions at: debriere@floridahealthjustice.org.

Finally, on March 19, 2020 at 10am, The Joy of the Journey support group, a group supported by Wolfson Children's Hospital, will use their monthly meeting to provide comment. If you are in the Jacksonville area, please feel free to bring your laptop and join us to speak out.

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