Spinal Muscular Atrophy Family Fights for Walker Use
A grandmother is fighting a New Jersey school district to allow her granddaughter, Desiree, who has spinal muscular atrophy, to use her walker while at school. The family says that time using the walker instead of the girl’s wheelchair is recommended by doctors. The school district says that “the walker is not necessary for Desiree to make meaningful educational progress.”
The following is a copy of the report by John Slattery of New York’s WCBS-TV.
Feb 20, 2007 8:13 pm US/Eastern
School Bans Disabled Child’s Walker
(CBS) FRANKLIN LAKES, N.J. The family of 7-year-old first grader Desiree Sheehy is at odds with New Jersey’s Franklin Lakes school district, arguing over whether the child can use a special walker at High Mountain Road School. The child says all she wants is to use her walker at school. “I really like walking in it,” she said at her home.
Sheehy suffers from a congenital condition affecting nerve cells called “spinal muscular atrophy” or SMA. About one in 6,000 babies is affected by the disease. It requires her to stand as much as possible or she will lose bone density and suffer joint problems.
Linda Sheehy, Desiree’s grandmother, who has joint custody of the child with the girl’s father, Kevin Sheehy, cites doctors’ recomendations which say it’s better for Desiree to spend less time in her wheelchair and more time in a special walker. The family believes that proper developement requires her to use the walker for a portion of the day while she’s at school, but the district says she can’t
The Franklin Lakes’ Supervisor of Special Services, John A Caliso, rejected the family’s request for the walker to be used at school, saying the district “has determined the walker is not necessary for Desiree to make meaningful educational progress.”
The family believes the goal is both educational and physical progress, and the therapy the school offers is not enough.
“They increased her physical therapy sessions from twice a week to five sessions a week, and said with their program they were doing the same as the walker,” says Linda, who has decided to fight the battle without a lawyer for now.
To get in and out of the walker, Desiree needs help, but the school already provides a full time aide. “They should say yes to the walker, and then the fight would be over,” she says.
Desiree’s family has filed a complaint against the district, and will ask an administrative law judge to have the district reconsider it’s decision. The State of New Jersey is also investigating the Sheehys’ complaint and is expected to issue a report by April.
To see the footage from John Slattery’s report, click here.
Technorati Tags: education, genetic, neuromuscular, new jersey, schools, sma, spinal muscular atrophy, walker, wheelchair
As a family member of a child with SMA, I know of the special challenges that a child has to deal with. I also know how ill-equipped most schools are in dealing with special needs children - especially with children who have relatively rare diseases such as SMA. So, I find it ridiculous to think that the school believes that their version of physical therapy replaces physician and specialist recommended activity in a walker. I’d love to see exactly what “exercises” the school does with Desiree that can compare to having her completely upright in a walker with weight on both of her weakening legs. No way are they the same and no way do they provide the same benefit! I DO agree with the school in them saying that their primary job is to educate the child - but what good is an education to a child who sees that system fail her before her very eyes in providing her a chance to lead a “normal” life? Special needs kids need exactly that … SPECIAL CARE! The school system clearly needs to focus on what is TRULY important and that is this little girl’s LIFE.
Comment by Mike — February 23, 2007 @ 6:40 am
Here is another article with more information about what the school district will and will not do for the Sheehy family.
Comment by Heather — March 1, 2007 @ 1:54 pm
This little girl needs to be supported in her desire to walk. It perplexes me that they would aruge about this at all.
Comment by Tracy Austin — March 3, 2007 @ 4:28 pm