Nathan is a gorgeous 7 year old boy with severe cerebral palsy. Even though his physical capacities are extremely limited, he is a smart little boy who uses a computer to communicate. The device, a Dynavox with Eyemax, reads his retina and allows him to express his needs, chit chat, and make choices about his environment. You can see a video of Nathan in action here:
In the video you can see Nathan simply dwells on an item on the screen, and the device makes the selection. Without the motor control to articulate words, or this device, Nathan would NEVER be able to engage in games like Simon Says, play with others, or tell us how he feels. He can even play Uno!
Even though his body doesn’t work for him, emotionally and cognitively, he is very present, loves interacting with other children, and is a very happy child. You can see here how much he enjoys participating in activities with other children:
After 2 years of requesting the school district to educate him by using the communication device, they agreed for Nathan’s private nurse to go to school with him to facilitate integration into a typical kindergarten class, as well as to facilitate use of the device in the educational setting. As his health has deteriorated over the last year, his nurse was also to be there to help manage his medical needs.
At the beginning of this year, after many reports from our private nurse that the school was NOT using the device during the school day as agreed upon, we requested an IEP meeting with the school district. During this meeting we expressed our concerns that the Dynavox was not being used during integration time with his typical kindergarten peers. In response, we were told that the school environment moved too quickly for them to use the device (audio recording of IEP meeting available upon request). At the same meeting, we were told that the school district was allowing Nathan’s nurse to be at school with him as a “courtesy” to the family.
The End of Collaboration
On April 8, 2013, Nathan’s private nurse arrived at Nathan’s classroom the same way she had every day for over a year. On this day, however, she was escorted outside of the classroom to the principal’s office and told she was not allowed to attend to Nathan any more. She was told she was free to stay on the premises but in a completely separate building, and she would be called if the teacher decided she was needed.
Nathan has not attended school since that day. He has been confined to the house, away from the children that he had connected with at school, deprived of the education that he, like any other child, deserves.
The school claims they have removed Nathan’s nurse because she is “distracting” to him in the educational setting. In the meantime, there are at least half a dozen other children in Nathan’s school who attend with private nurses.
The real reason?
We believe that the school removed Nathan’s nurse to eliminate accountability for educating Nathan. Without a private nurse, we as his parents would never know if, or how often, Nathan’s communication device is being used. He does not speak, cannot tell us what he experiences at school. His nurse, while he becomes more proficient at using his device, is also his voice.
As his parents, we are saddened, appalled, and heartbroken at this behavior from the school district. Watching Nathan sitting at home day after day, without the social interaction that he loves and helps him thrive, has caused us great grief. We see this as a great injustice to him and as unnecessary and unfair discrimination to a child who already has the odds stacked against him.
It’s disheartening to continue fighting the school district, month after month, year after year, to give our son the opportunity for a voice and an education.
Put yourself in Nathan’s shoes for a moment. Grab a piece of heavy duct tape and cover your mouth. Try it. Really. Even just for 15 minutes. I have. You see everything, understand everything, hear everything, but cannot speak. Imagine how frustrating it would be for you, if you had no way to tell people how you feel, what you want/need, to create a connection via spoken communication? This is what the school does to Nathan on a daily basis. Given the school’s retaliatory actions, discrimination towards Nathan, and his fragile medical state, we simply do not feel comfortable or safe sending Nathan to school without his nurse.
Let’s look at the facts:
Nathan spends 6 hours a day at school, at least 5 of which are “teachable” hours
The only way he can express what he knows or interact is using a communication device that reads his retina. He has no control whatsoever over his hands, head or feet. His only voluntary control is of his eyes.
- The Dynavox represents Nathan’s future and ability to learn: with this device he can complete educational goals, such as story interpretation, tell us what he knows, answer questions about the curriculum, and more. Without the device, all of this is lost to him.
Now let’s go a step further.
- The nurse that we provide is paid for by Nathan’s insurance, NOT the school district
- The school offered to pay for an LVN (Licensed Vocational Nurse) if they believe one is required. At a min of $18 / hour, for 6 hours a day, this would cost the school district over $2100 a month, or about $20,000 / year . If we are providing an LVN that is with Nathan 40 hours a week, why would they choose to allocate this budget to hiring a nurse? Why not use that budget to train staff in the use of communication devices? There are many other ways for the school to use that budget instead of wasting it on a nurse they do NOT need to pay for!
- When we filed a Motion to Stay Put, requesting that the school honor the previous IEP which they agreed to, with the nurse present with Nathan in the classroom, they refused and filed a refutation. See letter attached. This 49 page letter must have cost the school district several thousand dollars in legal fees, including interviews, compiling exhibits, etc. By refuting the motion, this means the school will participate in a Due Process hearing with us, which will end up costing the school district possibly hundreds of thousands of dollars. The judge honored our Motion to Stay Put, proving we are on the right side of the law. The school filed several subsequent letters, all which can be seen here.
- Our lawyer, Richard Isaacs from CSNLG, has been AMAZING at helping Nathan. Without his help, Nathan would’ve been tossed aside in the “Severely Disabled” category by the school district, and never educated.
Why is the school going through such extreme measures to keep Nathan’s private nurse OUT of the school, when it costs them $0? Typically, the biggest impediment to getting a school to collaborate is cost & resources. In this case, the cost is $0. Concurrently, we believe the school district is endangering Nathan’s health by refusing him access to his private nurse. As healthy as Nathan can be, in the blink of an eye, he can be near death. With a VP shunt, G-tube, Moderate to Severe Lung Disease, and a very long laundry list of secondary diagnoses, Nathan is a very fragile child.
He cannot tell us what hurts. Only recently Nathan went from having a mild cold, to very severe respiratory distress that landed him 3 days in the hospital. One moment he was happy and smiling and watching TV, the next moment he was in near catatonic state and being rushed to the Emergency Room.
If the school provides a nurse who does not have intimate knowledge of Nathan, it’s our concern that cues may be missed that can put Nathan’s life in danger. I have documentation and proof of how quickly Nathan’s health declines. They claim that the nurse can be on the premises, but not in class with him. However, insurance will not pay for hours where the nurse is not directly with him. They prefer to jeopardize Nathan’s health, possibly his life, by refusing his nurse to be in the classroom with him because this nurse means accountability to his family. Instead of honoring what they agreed to in our previous legal battle, they choose to fight us yet again, wasting more of Nathan’s time and opportunities for growth, by removing his voice. In this dropbox folder you can see a series of letters from our current legal battle. Why go through such lengths, you may be wondering?
- Because educating him with the device means they would need someone going out of their way to program the curriculum into the device.
- They would have to go through the extra effort of setting him up with the device and offering him opportunities to use it.
Otherwise, if having a private nurse attend school with him doesn’t cost them anything or create any additional problems for them, why not allow the nurse to be with him, like they do with a dozen other children currently attending the program?
If the true reason is that the nurse is distracting to him, why not apply behavioral modifications techniques to address the problem, instead of making a unilateral decision to remove the nurse resulting in depriving Nathan of an education for 4 months and costing them thousands of dollars?
What you can do to help Nathan
Please can you link to this post from your blog, Facebook page, and other social circles. We would like to raise awareness of this discrimination against our son.
Please also sign our petition to present to the School Board requesting Nathan’s nurse to be given access to him during the school day, as well as the creation of a special class for children needing communication devices at his school (of which there are several).
Help Nathan have a Voice
Read the petition
Thank you so much for your help. We are so grateful.