Families with special-needs kids are left to fend for themselves
Scott Maxwell was correct to point out that the Florida Legislature needs to pay attention to the 21,000 families with special-needs children on the state’s Medicaid-waiver waiting list (“Specialneeds families need help,” March 13). Before our son, August, passed away in 2013, we were for a time one of these families.
Despite an uneventful pregnancy, our son was born in 1999 in California with HIE (hypoxic ischemic encephalopathy). During his delivery he was deprived of oxygen and blood and suffered severe brain damage. Throughout his life he was blind and a spastic quadriplegic (cerebral palsy paralyzed him). He also was profoundly cognitively impaired and nonverbal. When my wife, Ilene, and I were hand-feeding him — something we had to do all his life — he had to be secured in his wheelchair with straps holding his shoulders and chest in place. His head lolled forward and backward, and he drooled. And when lying on the floor, he was unable to crawl or scoot around. If someone put him down and left him, he would be in the same exact spot an hour or even a day later.
Despite these problems, he was a jolly little fellow, a cheerful munchkin, a delight to be with. The joy he took in living testifies to the indomitable exuberance of childhood.
Within days of his birth, he qualified for the Medi-Cal waiver, known elsewhere as the Medicaid waiver. Federal law mandates that each state’s rules for deciding who qualifies for Medicaid be waived for children like August. In catastrophic cases, the child’s resources, not the family’s, must be the determining factor.
When my family moved from California to Jacksonville in 2001 for my job, we assumed our son would qualify for the Medicaid waiver. But August was placed on a waiting list. Ahead of him were thousands of children with significant impairments and/or serious medical needs. The estimate we received was that, at the earliest, he would come off the waitlist and receive the waiver in 2011 — 10 years in the future.
A kid like August can easily cost a family hundreds of thousands, if not millions, of dollars. He needed medications, therapies, treatments, surgeries, wheelchair-accessible vans, and around-the-clock attendants. He needed adaptive equipment such as a hospital bed for the home, a lift, and pricey assistive devices. He needed a lifetime supply of diapers.
His needs overwhelmed us, and our family began hemorrhaging money. Ilene and I were both employed in full-time jobs, raising our typically developing daughter (Clio was born in 2001 shortly after we arrived), and taking care of our blind, paralyzed and cognitively impaired son. We could not afford to not work: because of August’s medical needs, the wolf was always at the door. Our savings quickly depleted, and bankruptcy loomed. Neither of us could do anything to increase our income. To do that, we would have had to leave August unattended at home for long periods of time. If we had done that, though, Florida’s Department of Children and Families would have removed him from our care.
In June 2005, August was unexpectedly granted the Medicaid waiver. For many months Ilene had petitioned our elected representatives for help, attempting through letters, emails, and phone calls to find an official willing to pay heed to our situation. Finally, a state senator called back and pulled strings with Florida’s Agency for Persons with Disabilities. After being granted the waiver, August became eligible for Consumer Directed Care Plus, or CDC+. With it, we found that our outof-pocket expenses remained exorbitant but that our financial hemorrhaging stopped. Still, even now, in 2019, we are struggling to recover financially.
Critics will contend that the state has no business helping families like ours. I counter-argue that August entering our lives was like being hit by a Category 5 hurricane. He gave us joy, but he also brought financial ruin. If skeptics believe families like ours should be left to fend for ourselves, then, to be consistent, they should also insist that FEMA be abolished. By the same logic, no government aid should go to hurricane victims. But I ask: how many Floridians would raise their hands for that?
The author teaches at the University of North Florida and is the author of “A Life Beyond Reason: A Father’s Memoir.”