Tampa special needs attorneys know all too well that when a child has significant special needs that require round-the-clock medical and long-term care, the options for receiving such care are often limited. Traditionally in the past, children with severe disabilities would need to be placed into an institutional setting such as a hospital or nursing home for benefit programs such as Medicaid to kick in and cover the costs.
Fortunately, a trailblazing healthcare advocate and girl with disabilities named Katie Beckett paved the way for some Florida children to now receive institutional-level care paid for by Medicaid—right in their homes.
Katie’s Story
Katie Beckett was only 3 years old in 1981 when the details of her medical history became known to then-president Ronald Regan. Beckett contracted brain encephalitis at only 4 months old, resulting in paralyzation and an inability to breathe on her own or swallow.
After years of being hospitalized, her parents wanted to transition her to home care so she could be with her family in a more comfortable setting with the aid of a respirator. The problem, however, was that Katie relied on the federal needs-based program, Medicaid, to pay for her care. Those benefits would continue as long as Katie remained in an institutional setting like a hospital; however, under the government’s rules, once she was brought home, the parents’ incomes would then be counted toward her benefits and she would instantly be ruled ineligible. Essentially, the family found themselves in an administrative trap where bringing Katie home meant the loss of her ability to afford healthcare.
Changing The Rules
When Katie’s story caught the attention of then-Vice President George H.W. Bush, who presented the issue to President Reagan, it was determined that her care cost $12,000 a month in the hospital, which was six times more than it would cost to move her home. President Regan quickly came to believe that Katie’s case was an example of “hidebound regulations” that caused “tremendous expense to the taxpayers” and ultimately gave the green light for the Secretary of Health and Human Services to change the rules to let Katie come home without the loss of federal support and benefits. It was cheaper, it was better for the family, and ultimately made good sense as healthcare policy.
Utilizing the Katie Beckett Waiver Program
Thanks to the tireless advocacy of Katie Beckett and her family, today some children with disabilities can apply for a waiver to also receive institutional-level care paid for by Medicaid at home, provided that it costs no more than care in a nursing home or hospital setting. Financial eligibility for benefits is still only based on the child’s income and assets, without taking into account the parents’ financial status. Best of all, there is no waitlist to access the waiver, as states cannot limit the number of participants in the program.
It is important to note, however, that the Katie Beckett Medicaid Waiver is a federal waiver that is administered by the states. That means the program and the benefits available could vary based on where the child lives. For that reason, it’s important to work with an experienced Special Needs Attorney who is familiar with the program to ensure that you are utilizing all of the resources available. The rules and conditions that qualify for such a waiver here in Florida may not be applicable in other states, and vice versa.
That said, if you have a child who requires significant care here in Florida and you are interested in learning more about the Katie Beckett Waiver program, please feel free to contact our office to set up an appointment. We will help you discover all of the ways to utilize a comprehensive special needs plan to protect your child’s interests and access the resources that you need for care, both today and in the future.