Aug 22, 2013

Back To School?

While most people are only concerned with getting basic supplies like paper, pencils and crayons, maybe some school clothes, we are having a MAJOR back to school CRISIS.  The Lake Washington School District has thrown us a major curve ball just 2 weeks before school starts. They are telling us that we can no longer use our home health nurse during school hours because they want to hire their own employee. (The school district is legally required to pay for the hours of nursing that Ainsley is at school and so they feel they should have the right to hire their own employee.) They could have given us plenty of warning that they wanted to make a change by discussing this at our last IEP meeting in June but instead they waited until I called them to finalize the plan, to tell me.

Of course I wanted to know why. They couldn't really give me a logical or valid reason other than that it's their preferred policy when possible. Clearly they have an agenda and I've done a little investigating and I suspect the real reason is probably against IDEA policy. $ They said something about continuity for student and staff. When the nurses that we planned to use have worked the past year and a half at the school with the staff and therapists, how can replacing them provide continuity?! Quality? The two nurses we've used are very well qualified. Especially since they both have EXPERIENCE caring for AINSLEY.

All week I've been trying to get a firm answer and all I've received is e-mails thanking me for being patient and that they need more time.  Actually I'm not being patient at all. I NEED TO KNOW what is going on. Many people's lives are affected by their decision. I'll spare you most of the nitty gritty but just know I have spent a LOT of time making phone calls and drafting perfectly worded e-mails to the Director and Associate Director of Special Education. I have been respectful, logical and offered several reasonable solutions to this dispute. I think I've also explained why it really IS in Ainsley's best interest to continue with the nurse(s) she knows.

The whole situation has really caused me a lot of distress. I should be enjoying the final days of summer spending time with my children before they return to school but intead I am preoccupied and tense. I am unable to sleep. I'm not sure if the staff at LWSD just don't understand how much this affects us or if it's really THAT THEY JUST DON'T CARE. They cannot convince me that this is in any way in Ainsley's best interest. It isn't. Period. It's in their interet. But they are supposed to do what is best for the student.

They compared the situation to that of hiring OTs/PT's and SLP's. Nurses are one-on-one patient relationships. It is in no way the same. We aren't talking about a school nurse that cares for all the students.  I don't think they have a lot of students that have a state provided home health nurse like we do (We have authorization for 10 hours per day 7 days a week.). If we didn't use home health nurses I wouldn't care if they used an agency or hired a nurse as an employee.

Families like ours rely on home health nurses for help NOT JUST DURING SCHOOL HOURS. If I can't offer a full shift to a nurse I won't be able to keep/get one. There are a lot of extra demands when caring for a disabled child with a trach and g-tube.  I have 3 children in 3 different schools. Evie is starting at a choice school and that requires that we transport her 30 minutes away. We are lucky enough to be in  a carpool with other parents, otherwise with a child like Ainsley we would have to pass on this wonderful opportunity.  Having a sibling like Ainsley isn't easy. My other children deserve some of my time and attention too!

Like every other parent I need to make arrangements but I am completely stuck with NO IDEA how this is going to play out.

You might be wondering why this is the school's business.

Children with trachs need a nurse to care for them in the busy environment of school to keep them safe. A trach is an artificial airway and since it's just a plastic tube held in place by a tie it can come out and be life threatening. A surprising fact is that few nurses have actually inserted a tracheostomy into a patient's neck. It's certainly not something you can leave to a teacher or aide! And it cannot wait until someone "notices" or an ambulance arrives. I always make it a point to know that every person left in charge of Ainsley's care has actual hands on experience replacing a trach so that they can handle it in the event that it happens in their care.

Ainsley's trach has come out by accident about 8 times. So far it's never happened at school but it has happened in the car twice, on an airplane, while I was in the bathroom, and at home on several occasions. Just because it hasn't happened at school yet doesn't meant hat it won't. Last year her g-tube did come out unexpectedly at school and the nurse had to replace it.

There have been real instances when a child with a trach died at school because they were not being adequately watched, the tube came out, and no one properly trained was available to reinsert the trach. It is a liability to the school district.

In addition the nurse suctions secretions from the trach so that she can breathe properly, monitors Ainlsey's breathing and helps replace her cap with a speaking valve as needed. She helps Ainsley to the bathroom, helps with her mobility, caries her equipment (suction machine, spare trachs and supplies that must be with her at all times) helps her with her backpack, assists her at snack and lunch, adminsters tube feedings and assists with Ainsley's communication device and other communication. Ainsley's nurses do A LOT. She NEEDS this support.

I also need the nurse at home when Ainsley is too sick to go to school, to attend doctors appointments and to help monitor Ainsley's over all health. The nurse helps us decide when medical attention is needed by listening to her lungs. In 6 years of intense "on the job training" I've learned a lot of medical stuff but I'm still no good with a stethoscope.

I don't think they should have the right to do this. I really hope it can be worked out so that I can avoid taking it to the next level. I do believe I would have the right to a due process hearing and would hope that reasonable people would side with us that it isn't fair to deny a disabled and medically complex child to attend school with her home health care nurse(s).  Imagine how Ainsley would feel if the person who has cared for her for so long is gone. There is no way to explain that to her.

In addition this is terribly unfair to our nurse. She's worked with us for over 4 years. She's been with us through terrible surgeries, difficult illnesses and seen Ainsley's progression. She has been dependable when not all home health nurses are. She knows my children and the dynamics of our whole family. We trust her. We know she has Ainsley's best interest at heart. I HATE the idea that I can't tell her whether she has a job beyond next week. The school provided nurse, Elsie, that covered the other 3 days a week for the past one and a half school years hadn't been contacted by them so she doesn't know if she has a job or not either.  I even lined up a second home health nurse if they wouldn't allow Elsie to return but I can't hire her either, until I know what the days or hours would be.

Many people's lives are hanging in the balance waiting on this decision. There is a part of me that thinks they might not allow Ainsley to start school on the 3rd. I'm pretty sure that would violate her rights but I can't be sure they won't try.

Before we moved to Remond I'd heard such fantastic things about the Lake Washington School District and I have to say I'm less than impressed. They still have a chance to make things right but I suspect they may not. Please think good thoughts for us that things will go our way and Ainsley will be able to start school this year as planned.


  1. Susan, I have so much I would like to chatting would be easier. I am going to send you a private message on Facebook.....

  2. They made this change in our school district last year. We haven't been impacted directly, our circumstances are different, but some friends of ours were in your exact shoes. They ended up homeschooling their son because the district would absolutely not allow them to use their existing nurses. This must be some trend, to change to a policy like this. So extremely frustrating.