Daughter has Rett syndrome, and mom demands a voice in her education

For months, Veleria Fabiszak has pleaded with the Hillsborough County School Board to help her daughter, Chelsea. ¶ The 20-year-old high school student has Rett syndrome, a neurological disorder that causes seizures and developmental delays. ¶ Sometimes, Fabiszak shares a heart-wrenching story about how Chelsea's disease has stolen her ability to walk and talk, but not her desire to learn. Lately, the discussion has dissolved into a showdown between Fabiszak and district administrators.

Fabiszak says Chelsea doesn't receive opportunities in Hillsborough that are necessary for her development, such as music therapy. When the family lived in California, she said, Chelsea was further along, participating in cheerleading and dance. Here, an injury and a series of disagreements has led to her being currently homebound.

Fabiszak is frustrated, feeling that she doesn't have a voice in deciding what's best for her daughter.

It's a battle played out in school districts across Florida.

Parents of disabled students want a say in their child's education and school officials have to meet a federal law that requires them to provide services despite budget constraints. To provide those services, the district receives a mix of funding that includes state and federal dollars. In the 2011-2012 year, the Hillsborough district received $73 million for its exceptional education program, which includes 8,682 gifted students and 28,435 students with disabilities. Statewide, there are 352,077 students with disabilities, which range from speech, development, physical, mental and emotional.

Chelsea and some other students require state-of-the art equipment such as computer devices that help them communicate. Then there are other needs, including occupational therapy and aides.

Fabiszak's situation is complex, an example in the difficulties of educating and servicing disabled students.

Fabiszak, for instance, is a regular now at School Board meetings where she continues to speak out. But despite her many visits, board members still don't know much about Chelsea's situation. They can't.

District officials have cited strict privacy laws that prevent them from providing board members with more details about her predicament.

So the public discussions are vague and have lacked resolution. Yet, the talks go on and on, growing so contentious that board member April Griffin was recently brought to tears.

"I cannot sit here and . . . listen to this anymore,'' she told administrators at the Feb. 14 board meeting. "I want to know what's going on.

"Whatever the situation is, whatever the solution is, we have not met it.''

This month, Griffin asked Fabiszak if she would give written consent to the district so the board could talk about Chelsea's educational plan with staff, and Fabiszak agreed. The status of such a meeting was still unclear last week. Fabiszak — a mother of five, married to a Navy commander stationed at MacDill Air Force Base — continues to speak out at board meetings, so some matters typically kept behind closed doors have become public. In particular, discussions from December until now shed light on a yearlong fight in which the Fabiszaks threatened to sue the district and filed formal complaints with the state Department of Education.

The potential lawsuit stemmed from the discovery last school year that Chelsea had a broken thigh bone when she returned home from Gaither High. Two child welfare investigations found no wrongdoing on the district's part, board attorney Tom Gonzalez reported.

Fabiszak thinks the incident was an accident, but she dropped the lawsuit, she said, because there were no eyewitnesses. It also was never determined whether the injury happened at school. Chelsea stopped going to Gaither while recovering from the injury and hasn't been back to school since.

Education officials looked into complaints concerning Chelsea's services and concluded Hillsborough has followed proper procedures, superintendent MaryEllen Elia said.

Still, Veleria Fabiszak hasn't gone away.

"We represent the silent voices of all special needs children in this district who are denied support and services and a free and appropriate public education for their educational benefit — not Hillsborough's,'' she told the board in January.

The federal Individuals with Disabilities Education Act requires schools provide students with disabilities a free and appropriate public education until they turn 22. Determining what's appropriate falls to a team of school officials, who meet with the parents.

"The way that the law is set up, parents are an integral member of the team,'' said Ann Siegel, managing attorney for Disability Rights Florida, a statewide advocacy group based in Tallahassee. "The reality is they're one voice.''

Fabiszak has met with Hillsborough's team — around 35 professionals, according to Elia, including special needs teachers and supervisors, assistant principals, therapists and advocates.

They've gathered 20 times to hammer out Chelsea's road map of sorts, an Individual Education Plan within the public school system. Typically, such a meeting takes place once a year, maybe twice, Joyce Wieland told the board. She is the district's general director of exceptional student education.

The process can be intimidating for parents, said Judy Owens, a parent liaison with the Florida Department of Education's State Advisory Committee for the Education of Exceptional Students. Many, like Fabiszak, try to fight the system when they don't agree with it, but it can take years in order to reach a compromise, she said.

"It can be overwhelmingly frustrating,'' said Owens, a Pinellas County parent whose 8-year-old son has Down syndrome.

One thing parents should remember, she said: "Everyone is there to do their job. No one is out to get you.''

The family has moved to the South Tampa area and, at the most recent team meeting, Fabiszak disagreed with district staff on where Chelsea should attend school at this point.

Fabiszak wants her daughter to attend Plant High, the school closest to their home and the one that Fabiszak thinks would provide Chelsea with the proper attention and services she needs. School officials have determined Jefferson High, another 3 miles from the Fabiszaks' home, is a better fit.

A dispute resolution hearing concerning the matter is scheduled for the end of May. That can be a lengthy and costly process, one where judges typically side with school personnel, Siegel and Owens said.

"It becomes a power struggle between families and the district,'' Siegel said. And along the way, "the child gets lost.''

That's what Fabiszak fears most.

She says Chelsea's hard-won social and academic skills — the things doctors never imagined the bright young woman could do — are slowly slipping away.

Sherri Ackerman can be reached at hillsnews@tampabay.com.

. FAST FACTS

Disabled students in the bay area

Hillsborough 28,435

Pinellas 13,108

Pasco 10,161

Hernando 2,811

Source: Florida Department

of Education

Daughter has Rett syndrome, and mom demands a voice in her education 04/28/12 [Last modified: Tuesday, May 1, 2012 1:05pm]

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