Wish Book

Mother of disabled daughter in Miami hopes for a new mattress, gas cards

In the nine years since her husband left her and her daughter, Carmen Debesa has scraped by with a full-time job at a fast-food restaurant and a state education voucher for her daughter, Carolina, who attends a special program for young adults with disabilities.

But the family’s tenuous stability could soon collapse.

Come January, Debesa’s hours at a Pollo Tropical in Sunny Isles Beach will get cut to 28 from 40. And in May, Carolina, 22, will age out of the McKay Scholarship that has been funding her education at the Transitional Learning Academy at United Cerebral Palsy of Miami, a nonprofit that helps people with disabilities.

Debesa, 53, had no money for Thanksgiving dinner and has none for a Christmas tree — much less to pay for her daughter’s care once Carolina, who is autistic and mentally retarded, graduates from the academy.

“I live so worried about what’s going to happen to her,” a tearful Debesa said.

Carolina was also born with Beckwith-Wiedemann syndrome, her mother said, a condition that among other things causes a large body size. Though Carolina is an adult, she requires the care of a child, according to Debesa, who lovingly calls her “ mi niñita,” my little girl.

Carolina is on a years-long state waiting list for a Medicaid waiver that would fund her care after she graduates. Without the waiver, Debesa will have to pay for Carolina’s care out-of-pocket, which she cannot afford.

Carolina has trouble speaking. She needs help to shower and get dressed. After school, a special transportation service for people with disabilities takes Carolina to the Pollo Tropical where Debesa works. Carolina sits at the restaurant and draws in coloring books for about half an hour while Debesa finishes her shift.

Debesa works Saturdays to be free on Fridays to take Carolina to doctor appointments, particularly those to treat her numerous allergies. Their small one-bedroom apartment, in an old, two-story complex overshadowed by shiny new condos in downtown Miami, is spotless because Debesa is always cleaning, for Carolina’s sake. On Sundays, they do laundry and go to church.

Debesa, who is originally from the Dominican Republic, met her husband in Santo Domingo, where she said she worked as a lawyer in an insurance company. They moved to the U.S. and got married. The marriage lasted 18 years, until Carolina was about 14.

After the divorce, the couple sold their home in West Kendall. Debesa’s car was towed away. Her ex-husband, Debesa said, has not paid any child support.

Debesa, who had not worked when she was married so she could care for her daughter, found a job, moved downtown, bought a car and, seeing that Carolina would likely not succeed in high school, eventually enrolled her at United Cerebral Palsy. Sherri Kelly, social services coordinator at the nonprofit, nominated Carolina for The Miami Herald Wish Book.

Kelly said Debesa showed up at the nonprofit in tears once she found out she would be bumped down to part-time hours at work. The company told Debesa it was a cost-savings measure involving numerous employees.

“She thought they were going to end up on the streets,” Kelly said.

Young adults with disabilities like Carolina, Kelly said, are often “lost in the system” when they age out of school and their families can’t pay the $28-$30 a day, plus transportation, to enroll them in a full-time program. Sometimes, her nonprofit has no choice but to recommend that parents turn their children over to state custody so they can be cared for.

Debesa has nothing but praise for her $8.20-an-hour job at Pollo Tropical, where an understanding manager allows Carolina to sit and wait for her mother every afternoon and every Saturday. Regular customers know Carolina, Debesa said; one of them gave Debesa a Powerball ticket earlier this week.

But Debesa, who staffs the eatery’s drive-through line, doesn’t know how she will make ends meet once her hours get cut.

Her current take-home pay is about $285 a week. Carolina receives Social Security payments for people with disabilities, and food stamps. Debesa’s landlord recently lowered her rent by $50 to $750 a month.

What they can’t afford and need the most, Debesa said, is a new queen-sized mattress for her and Carolina to share. Their existing mattress is about 25 years old, Debesa estimated.

Metallic springs have cut through the top of the sagging mattress, which Debesa covers with two sets of sheets and a blanket so Carolina doesn’t get hurt. A hole on the edge of the stained mattress is covered with clear masking tape.

“And the other side is worse,” Debesa said, noting that Carolina used to be incontinent.

The mattress needs to be queen-sized, to fit Debesa’s bed frame. She doesn’t have room for a second, separate bed for Carolina.

Carolina could also use some new clothes (Hello Kitty is a favorite), in size 16 or XL for teens. Debesa long ago stopped being able to afford the pricey orthopedic shoes doctors recommended for her daughter. And Debesa would benefit from gas cards to help her pay to drive to and from work in Sunny Isles Beach.

Carolina, who likes to listen to the radio and dance to salsa music, wanted a Christmas tree, too. But Debesa took that wish into her own hands: She went to Publix and bought a small coffee-table decoration shaped like a tree.

And Carolina was happy.