February 2012 Newsletter Excerpt: Medically Fragile Students – Parents Know Best!

By Senator Jim Beach

Sending our children off to school is traditionally a nail-biting experience for most parents. Entrusting their care and well-being to strangers is a difficult fact of life that all parents must come to terms. Now, imagine that you are the parent of a special needs child, whose health is so fragile that failure to provide immediate emergency intervention when needed may result in permanent damage or worse. Unfortunately, this scenario is being played out by hundreds of families in New Jersey who depend on individualized nursing care in order for their children to attend school.

One such family, Amy and Eric Sutter of Collingswood, recently contacted me and described the impact that cost saving measures have on the critical care needed for their son to attend school. Isaiah, one of three triplets born fifteen weeks premature, requires one-on-one nursing care to attend school due to a seizure disorder resulting in respiratory arrest. In the years since the birth of their triplets, the Sutter’s have relied on the services of over 200 nurses to help care for their children, and are extremely discerning of the skills needed to adequately care for their children’s special needs.

As such, when the school district first contacted the Sutter’s to tell them that instead of the nurse who the Sutter’s had arranged to accompany Isaiah to school, the school district would hire their own nurse for Isaiah. The Sutter’s were immediately worried. They were most concerned with the allowable level of nursing skills and training the school district would require. This prompted Amy Sutter to look into the current legislation guiding such action, and reach out to me to request more stringent rules to protect all medically fragile students.

As a result, I am sponsoring Senate bill 375, which establishes standards of practice for providers of clinical nursing services for medically fragile students. In essence this bill mandates that school districts look beyond the current allowable criteria for selecting nursing agencies and requires that eligible agencies must meet the same standards and criteria needed to be Medicaid approved or to participate in the NJ Family Care Program. Setting these minimal standards may ease the worries of the Sutter’s and many other NJ families who are forced to comply with changes brought on by struggling school districts looking for ways to save money. Even in these difficult economic times, let’s not lose site of our goal to create and provide a safe environment for all of our children to learn.

Furthermore, this bill requires that parents or guardians of a special needs student have the option to choose the nurse who provides services to their child. As long as the cost to the school district remains the same, this legislation requires the Board of Education to allow the nursing agency selected by the parents to provide services to their child. In the words of Amy Sutter, this is “paramount”. My main focus is to ensure child safety and include parents in the decision making process. After all, parents know best!

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