For 13 year old Cassidy and her family, life is incomprehensibly challenging. Cassidy was born with an extremely rare neurological condition that causes autonomic bodily functions such as breathing to stop as soon as she is not fully awake; she has a cardiac condition and a pacemaker; she is ventilator-dependent. She must be on a ventilator when she sleeps, and also at other times such as when she is sick or tired. Cassidy has been prescribed 24 hours at home nursing care, and her parents take care of her at home.

A nurse is needed to ensure that her ventilator is connected while she sleeps and otherwise everytime she stops breathing or needs the ventilator, provide resuscitation immediately if the ventilator becomes disconnected or malfunctions, ensure her airway is clear, and provide other critical care. Without someone trained to provide these services, Cassidy could die. Miraculously, even with these challenges, Cassidy is otherwise a happy and thriving 13 year old, home schooled and taking college level classes, with the goal of attending college. With her tracheotomy tube sealed, she is even able to be on a local swim team.

“We have searched for solutions and advocated for Medicaid coverage, with no success. We have been told to “just quit” our jobs so we can get Medicaid, or “move out of state,” advice that does not work for our family.”

Although Cassidy has insurance through her father’s union, employer insurance doesn’t come close to covering all of Cassidy’s medical expenses, including her nursing care. To help cover these essential medical expenses, Cassidy, like other medically fragile children in middle class working families, is enrolled in Florida’s Medically Needy program. This program is designed for people who are “over-income” for Florida’s Medicaid program but have catastrophic costs not covered by other insurance. Enrollees are assigned a “share of cost,” which is like a deductible. Cassidy’s share of cost, which changes when her parents’ income changes, has ranged from $1,845 to $3,845/month.

Thus, when Cassidy incurs medical expenses that meet or exceed her applicable share of cost in a single month, she becomes eligible for Medicaid from that day until the end of the month. While the Medically Needy program is clearly “better than nothing,” it is very different from having comprehensive insurance like Medicaid and is hugely challenging to actually access. For Cassidy, it means that each and every month, her mother has to find a home health provider willing to provide services; submit bills; get approved; and then get paid. Anyone in Florida who is struggling to take care of a disabled loved one at home knows that it is extremely difficult to find home health providers–especially skilled nurses and even if they are paid up front.

And even though Cassidy’s actual medical expenses significantly exceed her share of cost each month, qualifying for the share of cost is extremely challenging. Before COVID, her family had to pay $1,845 out of pocket for medical care each and every month and spend many hours doing paperwork and advocating in order to meet the share of cost and qualify for Medicaid.

But COVID, along with the vast misery and loss it brought, also had a “silver lining.” It prompted the federal government to require continuous Medicaid coverage, a profoundly important benefit for families like Cassidy’s. Thanks to early pandemic-related federal legislation, states were required to provide continuous coverage to everyone on Medicaid. This meant that Cassidy’s family did not have to struggle with “meeting share of cost” each month.

In March 2020, Cassidy met her share of cost and qualified for Medicaid. Because of the continuous enrollment requirement, her family has not had to pay their huge share of cost each and every month in order to ensure life sustaining health services. They don’t live in fear each month that they may be denied Medicaid and will be responsible for thousands of dollars for her nurse, on top of the even worse fear that Cassidy will not have the care she needs and could stop breathing at any moment.

But the COVID-19 continuous Medicaid coverage will begin “unwinding” on March 31, 2023. After that date, and over the next 12 months, DCF will be returning to pre-pandemic Medicaid rules and eligibility for everyone on Medicaid, including those who qualified through the Medically Needy program.

Cassidy’s family will again have to meet her share of cost every month to get coverage for her essential nursing services. “Our whole lives will change once this ends”, said her mother. “Obtaining care for Cassidy and insurance coverage for her medical care has been an ongoing agonizing process,” her mother explained, “ we have searched for solutions and advocated for Medicaid coverage, with no success. We have been told to “just quit” our jobs so we can get Medicaid, or “move out of state,” advice that does not work for our family.”

Postscript: Cassidy’s mother has been carefully watching her ACCESS account for notice of when her daughter’s eligibility for Medicaid would end. In mid-March 2023, a DCF representative told her that Cassidy would be responsible for her Share of Cost (which would increase from zero to $2,970) every month again beginning April 1, 2023. This caused no small amount of panic, as it did not leave sufficient time to obtain alternative coverage without a lapse. Cassidy’s mother authorized Florida Health Justice Project to contact DCF on her behalf to look into the situation. Within a few days, DCF acknowledged that the data in the ACCESS system showing that Cassidy’s full Medicaid coverage was ending on April 1st was erroneous. In fact, because Cassidy has been diagnosed with a medically complex condition, under Florida’s Medicaid Redetermination Plan (at p. 12) she should be in the last group of individuals to have their eligibility redetermined and thus able to remain on Medicaid continuously until March 2024. DCF promptly corrected this status in Cassidy’s ACCESS account, and Cassidy and her family are grateful and relieved by this reprieve.