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Leah: My almost-3YO daughter with severe medical and neurological disabilities will be transitioning into the school district next month when she turns 3. The school says her private duty nurse cannot be at the school, but that they will provide an “aide” to be with my child and the school will have a nurse on site. I met with the “nurse” who did not have any clue about the medical equipment my daughter uses (ventilator, trach, G-tube, feeding pump, catheters, etc), much less an unlicensed aid who has no qualifications for caring for my daughter. We get 16 hours of nursing care a day because she requires qualified medical staff to be with her at all times. The school district does not want to allow this despite the fact that I am willing to sign a waiver of liability. Is there anything I can do?

  1. I am having a related issue in Indiana. My son has attended the same elementary school for 4 years and they have allowed our PDN to attend with him. We had a change in nursing staff after 3 years, and now suddenly they want us to sign a document that, among other things, allows them unfettered access to the nursing agency (they’ll no longer contact me with PDN concerns just the agency) and puts a gag-order on our nurse. It clearly states that our PDN is not allowed to tell us anything about our son’s day beyond medical concerns. Our son is non-verbal and non-ambulatory (fed by g-tube, diapered, etc.). We send him to one of the best public school districts in the area and have had no issues until this document. Can they refuse to allow a PDN if I refuse to sign?

  2. I am having the same issue here in Ohio. My 4 YO receives 45 hours per week private duty nursing. The school says they will not allow her on the basis of liability. I am furious because should something happen to my child (seizure or breathing/low O2 status), he needs immediate skilled nursing. I am not about to wait for the school to find the district nurse, wait for her to come, trust her assessment, etc. I would think it would be an even greater liability if her own nurse is not permitted to care for him. What rights do we have?

    • If you have not already contact the district special ed director. If they are saying no, I suggest contacting your state parent training and information center for advice. Sometimes if the district will participate in mediation, they can realize that they need to do this for everyone’s benefit.

  3. I am writing regarding my daughter with severe health issues that have been grossly neglected from our school district and IEP team members. Our daughter has an LVN at school due to Epilepsy and other medical challenges. Her LVN’s have been given inappropriate policies/guidelines in order to block communications between parents and LVN’s. We are being retaliated against at the expense of our daughters health and emotional well being. We have a history of disturbing and relationships with our school district. We did go to due process a couple years ago. Damaged relationships are not even ‘workable’ any longer. We cannot send our daughter to school w/out legal guidance at this time.

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