EDUCATING THE BOARD OF EDUCATION
September 11, 2001 was devastating to the world but it also created a miracle for Janielle Fermaint, a sixteen year-old quadriplegic teenager living with Cerebral Palsy.
Janielle witnessed unspeakable things that day. She lives in Battery Park City at the center of Ground Zero. Forced to evacuate their home, Janielle and her mother Francine moved in with Janielle's grandmother in Southbury, Connecticut while father Efrain, a Con Edison employee involved in the recovery effort, stayed behind. The World Trade Center tragedy opened doors to a world of possibility for Janielle, doors that had been previously slammed shut.
Metamorphosis does not take place without the caterpillar struggling to remove its old skin and Janielle's journey is no different. For several years, the Fermaints had been fighting for Janielle's right to a public education with the Hard of Hearing, Handicap, Visual Impaired division (HHVI) of the New York City Board of Education. Janielle, a quadriplegic from birth, requires additional support services such as a full-time aid, enlarged reading materials and the help of assistive technologies to meet her educational needs. She falls in between the cracks of being a regular student and a special education student. Her physical disabilities have nothing to do with her level of intelligence and special education classes did not challenge her academically.
Janielle's mother Francine says, "All we wanted was for Janielle to be able to excel in the subjects she's great in like science and history and learn math and reading skills that would help her function in the world independently." The HHVI consistently failed to come up with alternative solutions to service Janielle's needs and that was unacceptable to Janielle and her family. For example, during the thirty-month period from July 1999 to December 2001, Janielle was in school for only four months and out of those four months services were either inadequately provided or not provided at all. She fell way behind in the learning process, so much so that by age fourteen she was still unable to read.
In 1999, Janielle needed a spinal fusion operation that would require several months of recuperation. Fran notified the school and requested that Janielle be placed on home instruction. The school never processed the paperwork. Francine, a courageous, positive force in her daughter's life discovered that Harold Levy, the then Chancellor, would be speaking at Stuyvesant High School. Fran and Janielle decided to take matters into their own hands. They stood outside the school on a cold winter's night waiting for the Chancellor's limousine to arrive. The Chancellor took immediate action; Janielle was placed on home instruction the next day. Home instruction, however, turned into a revolving door of teachers, inconsistent services and other oversights by the HHVI. Janielle felt deeply rejected and she became distrustful of people. She had no contact with children her own age and she began to pay an enormous emotional price for being isolated.
The caseload of documents I reviewed as research for this article clearly shows the incompetence of the HHVI. They held meeting after meeting with no outcome, they made inappropriate recommendations, lost files and constantly changed the personnel handling her case. It was an inexhaustible burden for the Fermaint family and a huge waste of taxpayers' money. The important issue is that this child was in the hands of educators who saw her as a burden instead of a possibility.
Every story with a happy ending has a hero. Kevin J. Curnin of Stroock & Stroock & Lavan LLP runs The Public Service Project, the firms pro bono division. Kevin J. Curnin is an extremely intelligent lawyer but he is also a thoughtful, former educator who cares deeply about making a difference for other people. Janielle and her case could not be in more capable hands.
The law at issue is the Individuals With Disabilities and Education Act (IDEA). Kevin explained, "When Congress passed this, they said, 'This is a land in which education is paramount and all our kids have a right to a public education.' Unfortunately, something has been going on for decades in the United States where kids with disabilities have been getting the short stick on their right to a public education because of their disabilities. We do not think disabilities are a reason to deny kids an appropriate education. You must try first to see if there are things that you can do, steps that you can take to keep that child educated alongside his or her peers. That is called the concept of least restrictive environment. In Janelle's case that was not happening. Her cerebral palsy and quadleplagia make her a challenging student to educate, no doubt. But the fact that it is tough and challenging is not a reason to throw up your hands and walk away."
Remember, September 11th forced Janielle and Fran to move in with Grandma who just two weeks prior had moved from Pennsylvania to Southbury, Connecticut. Janielle had to abandon her home and the people she cared about. The horrors she witnessed on September 11th caused her to have continual nightmares. To complicate matters, Fran and Janielle could not return to lower Manhattan for months because of the clean up and recovery efforts and Janielle's depression was deepening every day.
Francine's sister-in-law recommended that they contact the Region 15 school district in Connecticut. The Pomperaug High School Administrators invited them to the school for a meeting and before it was over, they welcomed Janielle as a temporary student. Pomperaug provided Janielle with busing, therapy and the kind of individual support and services she was entitled to but never received from the Board of Education in New York. Pomperaug High School never had a student quite like Janielle before and yet it only took them a week to prepare for her.
Janielle metamorphorisized. She made the honor roll. The nightmares stopped. She is excelling in school socially and academically. She is finally learning to read at age sixteen. A school therapist is teaching Janielle (who has no control of her arms) to use her hands to paint and express herself creatively. Janelle's parents decided it was best to keep her in Connecticut at enormous personal and financial sacrifice to themselves. They could not bear to place Janielle back in the hands of HHVI in New York. Janielle was finally recognized for her abilities and was embraced by the administrators and the students of Pomperaug High School.
The pre-hearing memorandum states, "It was only after the horrible events of September 11th forced Janielle from her home in Battery Park City and freed her from the bureaucratic -stranglehold of HHVI that IDEA's guarantee of equal educational opportunity became real for her. Her success underscores her own mettle, the wisdom of the promise of equal opportunity for disabled students, and HHVI's failure to deliver on that promise."
Mr. Curnin further explains, "The obstacles were really those inherent flaws in the system and also, it seemed, the total lack of imagination on the part of the administrators over there to come up with practical solutions. We got an unending run-around and the only thing that made this work was that we amassed the evidence, put it together with the law and gave them our arguments. It is not enough to be right and its not enough to show them that they are wrong. You have to either embarrass them or force a decision from a hearing."
Two weeks before Christmas 2002 the HHVI settled. The Board of Education agreed (1) to reimburse the Fermaints for Janelle's out of state tuition which must be reapplied for each year and (2) to provide Janielle with thirty months of compensatory educational services upon her turning 21 or graduating from high school, whichever comes first. Kevin J. Curnin agreed to represent Janielle for life.
Most parents would have given up. Francine and Efrain are an extraordinary powerful example of what love is and what it can accomplish. Janielle spoke about how this incident has changed her life; "I have homework and friends now. I have freedom to go. I have people in my life that I am close to. I feel awesome!" Responding to whether she felt "God" or "Divine Intervention" was present and looking out for her with this case, her reply encapsulates what makes Janielle so special:
Janielle had some advice and an invitation for Mayor Bloomberg as he continues to restructure the Board of Education. "You have to work hard and fight. I invite you to take a train to Connecticut and watch good teachers at Pomperaug work with me. They do not care that I am in a wheelchair. The help I get from the teachers is awesome. We can show you how to do it right."
Perhaps things happened exactly as they should have. Maybe Janielle was meant to be the teacher in this scenario all along, instead of the other way around. She taught the New York City Board of Education, by example, that children with disabilities can be a powerful contribution and inspiration to the students and the teachers -- once given the opportunity to do so.
Janielle rises at 5:00 AM every morning not because she has to but because she is excited and cannot wait to go to school. A desire and passion to learn is a quality that should be treasured in a student. Janielle could be the person who discovers a cure for cancer or she may become one of our greatest political leaders. How can we not give her an opportunity to try?
We will never forget the tragic events of September 11th. But those who find their way to this article may now remember that our city's darkest day turned out to be a gift for Janielle Fermaint, a peaceful warrior, in pursuit of equality.
She does not have to leave her wheelchair to make a difference in the world.
She does not have to leave her wheelchair to make a difference in the world.
*Phone calls were placed to HHVI Administrators, who referred us to the Board of Education's press office, who did not return our calls.