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Archive for the ‘Disability Issues’ Category

Proposed Law to Provide Attorneys for Disabled Children Passes House Civil Justice Sub- committee

Tallahassee, Fla. – (February 19, 2014) – By a unanimous vote, HB 561, sponsored by Representative Erik Fresen (Miami), was approved by Florida’s House Civil Justice Sub-committee today. The proposed bill would provide attorneys for Florida’s disabled children who linger in foster care for an average of up to five years, and sometimes longer.

“In order to protect the well-being and welfare of one of our most vulnerable populations in the State of Florida, our disabled dependent children, we must provide them with additional tools,” said Rep. Fresen, the bill’s House sponsor. “By providing these children legal representation, we are helping to ensure that all of the benefits afforded to them are delivered with the ultimate goal of finding permanent residency.”

Under HB 561, the attorney would provide necessary legal services, including Medicare waiver benefits and, most importantly, seek to focus dependency courts on finding permanent families for these children. Recognizing the need for skilled representation, these lawyers would represent disabled children in applications for benefits and denial of benefits from the state and federal agencies, like the Florida Agency for Persons with Disabilities, the Agency for Health Care Administration or the Social Security Administration.

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In Passing, Florida Child Highlights Fight for In-Home Skilled Care for Sick, At-Risk Kids

January 14th, 2014   No Comments   Advocacy, Disability Issues

The death of Karolina Gonzalez was more than the passing of a 12-year-old child known as a fighter to her family and children’s advocates who knew her. It was the final page in an ongoing story of a mother’s love for her daughter, and her battle with state health administrators to receive skilled in-home care for her daughter so Karolina could be cared for at home – and not institutionalized in a nursing home. Karolina’s struggle is over, yet she remains the personification of many families’ struggles to receive the in-home care needed to live “normal” lives.

Karolina suffered from the rare genetic disorder called Marshall-Smith Syndrome. Those affected often suffer severe breathing impairments, facial abnormalities and irregular bone maturation.

From when Karolina was diagnosed at age 4, her mother Marcia Saladin battled Florida healthcare administrators for their refusal to offer round-the-clock in-home assistance – and force parents either to provide the care or institutionalize affected children. The financial, physical and emotional burdens for many are insurmountable. The United States government eventually joined the battle.

Institutionalization was not an option for Saladin and Karolina. Hardships notwithstanding, Saladin appealed the state’s ruling and convinced the Agency for Health Care Administration to reverse its policy. 

Howard Talenfeld, the attorney who handled the family’s appeal, told the Miami Herald, “She inspired us all to fight for her and other children just like her. This was a little girl who couldn’t walk, who couldn’t talk, but she touched all of our lives.”

Disabled Child Attorney: In Dramatic Shift, AHCA Changes Rules to Help State’s Kids, Parents

To any Florida attorney who fights and sues to protect the rights of and prevent damages to disabled, vulnerable or foster children, the past two years have been tough to watch. Over that time, Florida’s Agency for Health Care Administration has been attempting to balance its budget on the backs of Florida’s Medically Fragile Children and their parents who want to care for them at home by violating the Federal Medicaid Act and chopping the number of hours that they are willing to reimburse parents for medically necessary private duty nurses.

Through their contracted agent, eQ Health Solutions, Inc, AHCA ignores the medical histories and the number of hours these parents have received and are entitled to in attempt to force the parents, many of whom have full time jobs to care for these children — many of whom are on ventilators, have trach tubes to breath and are fed through G-tubes. AHCA ignores the capacities or lack of capacity of many of the parents to assess emergencies and intervene with life saving procedures.

The ground is shifting. The rules are changing. In the Legislature and AHCA itself, change has come, according to this Miami Herald story.

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