Families / Megan Holl

Megan Holl | Stuart Kessler

Rob Holl lifts 18-year-old Megan out of a friend's pool.

Megan Holl was born a typical baby. For reasons unknown, as an infant she began having seizures until one fateful day she slipped into a coma. When she woke her brain was a clean slate. She even lost the ability to suck. Her parents, Robert and Betsy Holl, have always cared for her at-home without any help. Now an adult, Megan functions as an infant and her middle-aged parents have hit a wall. They worry whether they can continue to juggle Megan’s unrelenting “tag team” care needs, the demands of raising their other child, Holly, and their jobs. In 2001 they asked Florida for help, but are still waiting. So are thousands of others.

As an infant, Megan suffered a series of seizures that ultimately resulted in her losing all of her developmental milestones at just 18 months old. There was hope that over time Megan would relearn the skills she had lost, but that has not been the case. She cannot perform even the most basic life functions for herself. Megan cannot speak, nor walk.

The Holls moved to Longwood, Florida from Ohio in 2001 with the expectation that Florida, like Ohio, would provide some degree of state-funded services and supports.

Shortly after arriving they applied for a Florida Medicaid Home and Community-Based Waiver, which funds institutional-level care at the developmentally disabled person’s home or a group home.

Megan is number 5,769 among 16,000 people on the Medicaid Waiver wait list (2005). She has been waiting since 2001 for help.

The only relief the Holls currently receive is through Florida’s public school system. Megan attends Winter Springs High School in Longwood during the school year from 6 a.m. until 3 p.m., allowing Rob and Betsy some time to earn an income. Soon Megan will be 22, and by law she will no longer be able to attend Florida public schools. What will happen to her and her family then is “the stuff that makes me wake up in the middle of the night in a cold sweat,” says Rob Holl.

The demands of providing care for Megan has stymied the Holls personally, professionally and socially. Rob sells clothes with logos and other marketing items, and Betsy is a self-employed accounting software consultant. Their jobs allow them the flexibility to work from home or coordinate caregiving shifts to ensure one of them is always home each afternoon when Megan arrives from school or has to stay home because of illness or seizures, which are a part of Megan’s daily life.

The alternative of placing Megan in a state institution or group home horrifies the Holls, but the possibility they could be still doing all of Megan’s personal hygiene and other care needs throughout the Holls old age is equally frightening.

Megan Holl | Stuart Kessler