Featured, News

Junior combats clause that limits access to care

Junior Audrey Winkelsas posed for a portrait in the UC lower lounge on Tuesday afternoon. Monica Herndon // Photo Editor

Junior Audrey Winkelsas posed for a portrait in the UC lower lounge on Tuesday afternoon. Monica Herndon // Photo Editor

Junior Audrey Winkelsas was not going to let spinal muscular atrophy, a form of muscular dystrophy, stop her from attending the University of Miami.

Before college, she depended on friends and family to help care for her. Originally from Apopka, Fla., a suburb outside of Orlando, she requested 24-hour, attendant care through Medicaid for her time at UM. Her parents and friends could not travel 250 miles to help her in Miami.

All was fine until Winkelsas celebrated her 21st birthday in October. According to Florida’s Medicaid provider handbook, necessary services like around-the-clock care are suspended after a person turns 21.

“Whether you’re 20 years and so many days old or 21, your age in most cases doesn’t affect your condition,” Winkelsas said. “I would be so grateful if suddenly I didn’t have [spinal muscular atrophy], but it doesn’t work that way.”

Winkelsas discovered the news when she returned to campus after studying abroad in London last fall. Since she was out of the country, she could not receive healthcare attendant services. Instead, her mom, Keely Winkelsas, traveled with her, understanding it was a once-in-a-lifetime opportunity.

Since classes for spring semester began, Winkelsas’s mother has had to stay in Miami to ensure that her daughter can go to class and finish her studies.

During her senior year of high school, Winkelsas requested a healthcare attendant through Medicaid. She was initially granted only two, three-hour visits per day.

However, through a round of appeals at Medicaid she was provided 24-hour care. And for the last two and a half years, four different attendants, who worked 12-hour shifts at a time on different days of the week, looked after Winkelsas as she completed her studies.

Two years later, Winkelsas is again appealing, but the process has been more difficult than the last time.

“I am at a loss,” she said. “We just need to get in touch with the right person who has the authority to say or the knowledge to say the program I need to be on is such and such. In the meantime we’re following every lead.”

After going through countless rounds of appeals, Winkelsas was granted only three, one-hour visits, none of which could be consecutive.

While her mom stays with her, Winkelsas’s father Layne Winkelsas runs the family printing business back in Apopka on his own. The business has been understaffed because of the recession.

Winkelsas was aware of the turning-21 clause in Florida’s Medicaid provider handbook. But she has other friends who were a few years older and had successfully appealed.

Winkelsas was confidant that anyone who met with her would understand her need for 24-hour care. But halfway through the semester, she has had no luck in reversing Medicaid’s ruling.

Winkelsas says her mother makes phones calls every day, trying to find her daughter 24-hour care. They have taken tips from friends, and have even called their local representative in Apopka, Bryan Nelson. Nelson forwarded the message to Senator Marco Rubio and Gov. Rick Scott’s offices.

Everything has been unsuccessful so far. However, the university released a statement saying that it is assisting Winkelsas “on her behalf to appeal for Medicaid.”

UM President Donna E. Shalala is personally involved as well, according to a university spokesperson.

Though she thinks of herself as shy, Winkelsas decided to start a petition on Change.org last week to bring attention to her problem. In just 24 hours, the petition was filled with more than 5,000 signatures. At the moment, the petition has 6,833 signatures, and only 667 more are needed.

“We thought if more voices were supporting us it might get someone’s attention,” she said.

Winkelsas is studying biochemistry and intends to find a cure for spinal muscular atrophy, the condition she was diagnosed with when she was seven months old.

To sign the petition, visit tinyurl.com/audreywinkelsas.

March 5, 2014

Reporters

Jess Swanson


Around the Web
  • Miami Herald
  • UM News
  • HurricaneSports

If defense really does win championships, the University of Miami is in good shape. Despite giving u ...

This is the Miami Hurricanes team that finally solved its long hex in finally winning at Florida Sta ...

1. HURRICANES: No. 3 Canes beat Virginia in home finale: ACC title game, first 10-win season since 2 ...

The No. 2 Miami Hurricanes are kings at keeping their fans in a panicked state — then filling them w ...

CANESFAN SATISFACTION METER: G10: Time again for the latest edition of the Canesfan Satisfaction Met ...

The Finker-Frenkel Legacy Foundation gift will establish the Business Plan Competition Endowed Fund. ...

C. David Naylor, a UM Presidential Scholar and public health policy expert, provided insight into he ...

A cohort of five religious leaders from Miami, including a rabbi and imam from the University of Mia ...

Hollywood actress and star of the hit BET series Being Mary Jane gets real about gender, race and co ...

The annual development agreement meeting is a time for the city and University to share information ...

Miami survived an early scare to beat Virginia, 44-28, and achieve its first 10-win season since 200 ...

The University of Miami volleyball team produced some late-match magic Friday night to outlast an in ...

Miami dropped a 67-61 decision to Colorado on Saturday afternoon in its first road game of the seaso ...

Here are three matchups to watch in Saturday's Senior Day game between the No. 3 Canes and Virg ...

Miami's seniors will play their final home game at Hard Rock Stadium when the Canes face Virgin ...

TMH Twitter Feed
About TMH

The Miami Hurricane is the student newspaper of the University of Miami in Coral Gables, Fla. The newspaper is edited and produced by undergraduate students at UM and is published weekly in print on Tuesdays during the regular academic year.