Can caretakers be charged admission to businesses while caring for patients?
Woman says Butterfly World initially told her she would have to pay up
COCONUT CREEK, Fla. – Like most mothers, Maria Laguna wants the most for her 5-year-old son, Nathen.
"(To) just live life fully," she said.
Doctors didn't expect Nathen to live past the age of 2.
"They always say that, but you never know," Laguna said.
Nathen turned 5 years old in October. He was born with spinal muscular atrophy, or SMA -- a genetic disease that affects the nervous system and muscle movement.
The Leave it to Layron team popped in on the family just before lunchtime. We found Nathen lying in his bed, surrounded by books and stuffed animals. A small television mounted to his bedroom wall played cartoons. There was also a breathing machine and a device that monitors Nathen's pulse.
Laguna used another machine to suction saliva from Nathen's mouth because he cannot swallow on his own. In fact, Nathen cannot move because of his disease.
A tube is attached to Nathen's stomach so that he can eat.
Nurses work 12-hour shifts, day and night, helping care for Nathen, who doesn't speak. But he knows how to communicate. Through his eyes and audible sounds, he lets his mother know what channel he wants to watch, and what other needs he may have.
"He understands," Laguna said.
Before Nathen's birthday, a church member and family friend inquired about a birthday gift Nathen and his mother could enjoy.
Alana Harris told the LITL team she called Butterfly World. She wanted to buy annual passes for the family.
"I asked if I needed to purchase a ticket for the nurse as well, and the staff member I spoke to kind of cut me off midsentence, and said, 'Absolutely, 100 percent, you will have to buy a ticket for the nurse,'" Harris said.
Harris said she decided to purchase the passes for Nathen and his mother, and one for the nurse. But, when she called back, she remembered to ask another question.
"I asked if the ticket would be transferable, so that the nurse would be able to hand it off to the next nurse, and we wouldn't have to buy a new annual pass every single time," she said. She said the second staff member she spoke with informed her that the nurse's ticket would not be transferable.
"(It's) one of the few things that he can actually enjoy with his limited mobility," Harris said. "They should all be able to enjoy it, equally. I just don't see how that's fair, at all."
Matthew Dietz, litigation director with the Disability Independence Group, called it an illegal surcharge.
"They wouldn't charge somebody extra if they had a guide dog," he said. "They shouldn't charge anybody extra if they have an aide go with them."
Dietz said forcing one of Nathen's nurses to pay for a pass would be a violation of the Americans with Disabilities Act, ADA. He cited a 2016 federal court ruling that found a Philadelphia museum violated the ADA by requiring a quadriplegic man to pay an admission fee for his personal care attendant.
U.S. District Judge Gerald Austin McHugh ordered the museum to stop what he called
"discriminatory practices." He also ordered the museum to "adopt a clear and enforceable policy and practice of waiving any and all admission fees for paid Personal Care Attendants accompanying severely disabled clients in a formal capacity."
"(The attendants) are not going there for their own use and enjoyment," Dietz said. "They're going there for the person in a wheelchair, or person with a disability to use and enjoy."
The LITL team went to Butterfly World and spoke with its owner and founder, Ron Boender. He said it was the first time he had heard of such an issue, but said he'd "definitely straighten that out."
"That's a mistake and we wouldn't insist on that," he said.
Boender took Local 10's Layron Livingston on a personal tour of the facility and touted its accessibility and the accommodations made for persons with disabilities.
"I can't tell you how many wheelchairs come through here in a typical week," Boender said.
We asked if there was a specific policy in place at Butterfly World, but Boender couldn't point to one.
"It's a good item that you bring up," Boender. "We'll meet with the people who issue the passes here, and we'll set a policy that's fair."
Mary Jane Vanden Berge, Boender's daughter, runs the facility and said it was a misunderstanding that shouldn't have happened.
She explained annual passes are not transferrable because they come with an accompanying photo ID of the patron. Berge further explained personal attendants, including Nathen's, would not need a transferable card because their admission is always comped. She's since met with Butterfly World staff members to make sure the policy is clearly understood.
We're told Nathen and his mother will be offered free annual passes, and his nurse(s) will be allowed in, free of charge.
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