The last time Doris Freyre saw her 14-year-old daughter, Marie, alive was around 1 p.m. on April 26. She watched helplessly as the disabled girl was strapped to a stretcher and sent by ambulance to a nursing home in Miami -- five hours away from their home in Tampa, Fla.
Florida child welfare authorities had deemed Freyre, a 59-year-old single mother with six herniated discs and carpal tunnel syndrome in both her wrists, unable to take care of Marie, who had cerebral palsy and suffered from life-threatening seizures.
Marie, who was in state custody despite pleas from her mother that she could better care for her daughter at home, died alone just 12 hours later on April 27 -- dehydrated and not properly medicated -- of cardiac arrest, according to a Miami Herald investigation.
Neither a nurse nor a social worker accompanied the screaming girl en route to the institution. And her mother was not allowed to ride with the girl, who could not talk and had a rigid medication routine.
"I started crying because I knew it would be too much for my daughter on that trip," Freyre, heaving with sobs, told ABCNews.com. "There was no doctor there to receive her, only nurses. They didn't send a report on how to give her food or meds. They didn't give her food or water until late hours of the night. My family has been destroyed."
An estimated 4.1 million parents have disabilities in the United States -- roughly 6.2 percent of all parents with children under 18, according to a report released in September by the National Council on Disability, "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children."
They are the only parents who as a group must struggle to retain custody of their children solely because of their disabilities, according to council attorney Robyn Powell.
Removal rates where parents have a psychiatric disability can be as high as 70 to 80 percent; for an intellectual disability, 40 to 80 percent; and with physical disability, 13 percent, according to the report.
Parents who are blind or deaf also have extremely high rates of child removal and loss of their parental rights.
"We also find it interesting that two-thirds of the states' child welfare laws list disability in and of itself as ground for termination of parents' rights," said Powell. "They don't have to come in and say a parent even did anything bad."
The federal Americans With Disabilities Act mandates states to support these parents by providing "reasonable accommodations."
Freyre had received support through Medicaid for her daughter's care, but needed some additional help at night. An aide, who was later discredited, made a report to child welfare authorities that triggered the child's removal from the home.
Marie's case was bungled by bureaucracy, according to the lengthy investigation by the Miami Herald, which first reported the story.
A Tampa judge ordered Marie returned to her mother, but with 24/7 in-home nursing care.
"You are to be congratulated for caring for your daughter alone for 14 years. This is something that has to have been very, very difficult for you as a mother," Hillsborough Circuit Judge Vivian Corvo said at a hearing on the case March 30, 2011. "I was moved by how hard you've worked to take care of your daughter."
But state health care officials refused to pay for the in-home care, even though it cost less than institutionalizing Marie. Other agencies and health care officials either didn't communicate with one another or ignored the court, according to the Herald.
The girl lingered in Tampa General Hospital for 29 days before she was loaded on an ambulance stretcher screaming. Freyre was not allowed to go with her daughter to help with feeding and to keep her stable.
Mother Will Live With Scars Forever
"This is one of the worst cases I have ever seen, and I have handled some bad cases," said Peter J. Brudny, a medical malpractice attorney who is representing Freyre. "These are scars she will carry forever."
"Had [Marie] lived and not seen this horrendous breakdown by every agency, she would have been warehoused ... in Miami for months and maybe the rest of her life," he said.
Brudny said he was looking into a federal lawsuit alleging violation of Freyre's civil rights against the various agencies involved in the care of the teen who died.
Tampa General Hospital issued a prepared statement on the case: "We were surprised and tremendously saddened to learn of this child's death 12 hours after she arrived without incident at the nursing home in Miami. We know how hard her mother worked to care for her, and the circumstances are truly tragic."
The statement said state child welfare authorities had placed the child at the hospital for "shelter" while other arrangements were being made.
"We cannot comment on specific details of her care due to patient privacy issues," it said. "However, Tampa General Hospital vigorously denies that it violated any court orders or that the patient was underfed or dehydrated while at the hospital. Her physicians would not have authorized her discharge if they had any concerns about her medical condition."
It said "all decisions" on placement and medical transport were made by the Florida Department of Children and Families "in consultation" with a private ambulance company.
The Department of Children and Families outsources many of its services as required by the state legislature and didn't have the legal authority to make all the decisions in the case, according to its communications director Joe Follick, who said Marie Freyre's case had been "tragic and sad."
"We want to do everything we can not to incur another tragedy," he said. Follick said there needed to be a "broader education effort," and parents, as well as health care providers, needed to know all options available for children in their custody.
"Everyone should know the goal is to keep children with their families, and that becomes the primary focus no matter how complicated the situation," he said.
Florida's Agency for Health Care Administration said both Tampa General and the Miami nursing home, then the Florida Club Care Center and now renamed Golden Glades Nursing and Rehabilitation Center -- were investigated in September 2011.
"We did find immediate jeopardy at both facilities," said AHCA spokesman Shelisha Coleman. "Findings of immediate jeopardy carry the highest penalty under the federal survey program."
Tampa General was cited for "discharge planning" and was given 23 days to address the violation or risk losing its public funding. AHCA said the hospital addressed those issues. It was also fined $5,000.
Florida Club was cited with 84 pages of violations including neglect, pharmaceutical services and "responsibilities of the medical director."
Alex Camacho, administrator at Golden Glades, twice, did not return ABCNews.com's calls seeking comment.
Parents with disabilities are more likely to lose custody of their children after divorce, have more difficulty in accessing reproductive health care and face significant barriers to adopting children, according to the national report.
The report said women with disabilities still face "coercive tactics designed to encourage sterilization or abortion because they are not deemed fit for motherhood."
Powell, the attorney for the National Council on Disability, uses a power wheelchair for a disabling condition called arthrogryposis, which affects her muscles and joints and gives her limited use of her arms but not her legs.
She is 31 and single and said that her doctors ask her "more times than I can count" if she would consider a hysterectomy.
"I had a doctor's appointment this morning and was asked again," she said. "I probably will have children sooner or later, and they were taken aback again. There is no medical reason not to. I am very healthy -- my disability is solely physical."
She would likely need an adaptive crib and changing table, and either a nanny or personal assistant, otherwise, Powell said, "I have no doubt I would be a great mother. We know parents are so much more than being able to change a diaper."
Disabled Parents More Apt to Lose Children
The National Council on Disability released in October a tool kit that helps states find ways to close nursing homes and other institutions that care for children like Marie Freyre because of both "harm and cost," said Powell. "We know it is cheaper to provide, and children should live with their parents."
"Support you are talking about is typically temporary or intermittent," she said. "After the first two or three years, you don't need it anymore. The kids are up and walking."
As for Doris Freyre, she said her whole life revolved around her daughter and it was taken away.
"It was unbelievable -- she took care of her for 14 years," said Freyre's friend Marissa Vasquez. "She was good mother, a special mother. God knows who to give kids like this to."
Freyre said she made sure her daughter got outside each day, home schooled her and even took her to physical therapy and swimming lessons.
The girl was not able to talk, but could gesture. "She was very intelligent, and knew all her surroundings," said Freyre. "She understood perfectly when you talked to her."
Freyre said she complained to authorities that being on a stretcher for five hours would hurt Marie, who had two dislocated hips. She also worried about hydrating the girl so she did not seizure.
"I knew what would happen to her," she said. "First, when she stopped her seizure medications, she would go into a tantrum in that heated condition. She would start screaming and they wouldn't know how to deal with her -- she would be crying all night."
"I loved my daughter with all my heart," Freyre said. "She had a horrible, horrible death."
- Family & Relationships