Make us your home page
Instagram

Today’s top headlines delivered to you daily.

(View our Privacy Policy)

Parents of disabled children blast Florida health care

Twice in the past year, state health administrators cut the number of hours caregivers assisted Alex Perez's severely disabled son at his Westchester home. Both times, the child's pediatrician was left wondering why the state had reduced the care he had prescribed for the boy.

On Monday, state Rep. Katie Edwards asked Perez if she had been "misled or misinformed" when state health care bosses told her that the company that reviews such prescriptions always speaks with family doctors to find a way to help parents.

"Yes," Perez told Edwards at a town hall meeting in Sunrise for parents of disabled and medically fragile children Monday night.

Perez, whose 13-year-old son, Christian, suffers from cerebral palsy and failure to thrive, was one of a dozen parents and advocates who spoke to several lawmakers and other community leaders Monday night at the meeting called to address the needs of Florida children with severe disabilities and life-threatening medical conditions.

As Perez looked on, Edwards, the meeting's chairwoman, called a spokesman for the state Agency for Health Care Administration to the podium. AHCA legislative director Chris Chaney said it was common for the private company, eQHealth Solutions, to speak with family doctors to "reach a consensus" over the care for children like Christian.

"Not happening," several parents shouted from the audience.

"You need to correct this," Edwards said, speaking to Chaney.

Edwards, a Democrat from Sunrise who was recently elected to the House, called Monday's meeting at the Sunrise Senior Center following several stories in the Miami Herald about the state's cutting of in-home nursing care to medically fragile children, which has forced some parents to place their children in geriatric nursing homes. Edwards said she became aware of children like Christian while volunteering at, and raising money for, a Homestead daycare center for children with complex medical conditions.

"They keep finding new reasons to deny services," Perez told the group about eQHealth, a private company under contract with the state at the center of the controversy. "It's a very combative atmosphere."

The plight of children with complex medical needs came to light last fall when civil-rights lawyers with the U.S. Justice Department accused the state of warehousing severely disabled children in geriatric nursing homes — where the youngsters often have little contact with the outside world, and can spend their entire childhood with no social or family interaction. Hundreds of children have landed in such homes, the Justice Department wrote, because state health administrators have dramatically cut in-home and other services to children whose parents care for them at home.

Edwards said it was partly the Legislature's "fault" that disabled children were suffering from lack of care. For too long, she said, lawmakers avoided getting involved in the details of state health and social service agencies, allowing departments to write their own rules with little legislative guidance, and offering inadequate oversight over how the state's "limited pool of resources" is spent.

If the state is favoring nursing homes by strangling the flow of dollars to families raising disabled children at home, though, Edwards said that should stop.

"It should be the parents' choice, and not the choice of the state, where you take care of your child," said Edwards, whose niece is disabled.

Seth Hyman, whose daughter Rebecca has a genetic disorder that causes 200 to 300 seizures each day, some of them life-threatening, has been placed on a waiting list for services along with about 22,000 other Floridians. Rebecca cannot walk or speak.

Hyman said he lost his business while caring for Rebecca, but still cannot qualify for Medicaid, the state and federal insurance program for the needy. "I can't begin to tell you what life is like without these services," Hyman told the half-dozen lawmakers. "It's a living hell."

"They will pay for care at a nursing home. But getting loving care at home, they won't pay for that," Hyman said. "There's something wrong with that."

Parents of disabled children blast Florida health care 01/07/13 [Last modified: Monday, January 7, 2013 9:46pm]
Photo reprints | Article reprints

© 2017 Tampa Bay Times

    

Join the discussion: Click to view comments, add yours

Loading...
  1. 'Empire' star Grace Byers keynotes USF Women in Leadership & Philanthropy luncheon

    Human Interest

    BY AMY SCHERZER

    TAMPA — The first University of South Florida graduate to address the USF's Women in Leadership & Philanthropy supporters, Grace Gealey Byers, class of 2006, centered her speech on her first name, turning it into a verb to share life lessons.

    Grace Byers, University of South Florida Class of 2006, stars on the Fox television show Empire. She delivered the keynote at the USF Women in Leadership and Philanthropy luncheon Friday. Photo by Amy Scherzer
  2. Southeast Seminole Heights holds candlelight vigil for victims' families and each other

    News

    TAMPA — They came together in solidarity in Southeast Seminole Heights, to sustain three families in their grief and to confront fear, at a candlelight vigil held Sunday night in the central Tampa neighborhood.

    A peaceful march that began on east New Orleans Avenue was held during the candlelight vigil for the three victims who were killed in the recent shootings in the Seminole Heights neighborhood in Tampa on Sunday, October 22, 2017.
  3. It's not just Puerto Rico: FEMA bogs down in Florida, Texas too

    HOUSTON — Outside Rachel Roberts' house, a skeleton sits on a chair next to the driveway, a skeleton child on its lap, an empty cup in its hand and a sign at its feet that reads "Waiting on FEMA."

    Ernestino Leon sits among the debris removed from his family’s flood-damaged Bonita Springs home on Oct. 11. He has waited five weeks for FEMA to provide $10,000 to repair the home.
  4. McConnell says he's awaiting Trump guidance on health care

    STERLING, Va. — Senate Majority Leader Mitch McConnell said Sunday he's willing to bring bipartisan health care legislation to the floor if President Donald Trump makes clear he supports it.

    Senate Majority Leader Mitch McConnell says he’s “not certain yet” on what Trump wants.
  5. Tampa's Lance McCullers shows killer instinct in pitching Astros to World Series

    Ml

    HOUSTON — It felt like the beginning on Saturday night at Minute Maid Park, the arrival of a new force on the World Series stage. The Astros are back, for the first time in a dozen years, and they want to stay a while.

    Houston Astros starting pitcher Lance McCullers (43) throwing in the fifth inning of the game between the Houston Astros and the Tampa Bay Rays in Tropicana Field in St. Petersburg, Fla. on Sunday, July 12, 2015.