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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.”

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