Education for young people long term chronic illnesses. 

 

Health school need to broaden their brief to provide both ongoing and sufficiently resourced education for children with long term chronic illnesses. 

The requirement that in order to access Health School, a young person needs to be on a trajectory to return to mainstream school needs to be dropped. 

 

 

 

 

Why the contribution is important

ME/CFS is a poorly understood, marginalised disorder that effects many people of all ages. There is no treatment and the majority of people go on to be effected for life - with just under 50% being disabled enough to be out of study or employment permanently. Approximately 8% suicide due to the unrelenting suffering that this disease causes as well as the misunderstanding of the medical and educational community that has resulted in appalling access to help, and significant stigma. This makes ME/CFS a similar risk for suicide as the mental illnesses associated with the higest rates of suicide.

Children can be significantly effected - and may be unable to return to school. It is essentail that these young people have equitable access to education, and are assured that they are valued for what they can contribute - both now and in their future.

Health schools vary significantly across regions in how they cater for children with ME/CFS and other chronic illnesses. Some have an imperative that the child be on a trajectory to return to school and offer nothing if they are not able to commit to a pathway toward this. At best the child gets a few hours per week  of coordination of their correspondence or online lessons or lessons sent from their school of enrollment. They are left to teach themselves for the remainder of the week - a very difficult task when pain, fatugue and cognitive difficulties predominate. Parents are required to support necessitating a stay at home parent. 

Young people with chronic illnesses have been forgotten. What is avaialble to help children with transient periods of illness, does not work for those with long term illnesses.  They are currently effectively excluded from education. 

by RoseSilvester on February 12, 2019 at 06:35PM

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Comments

  • Posted by RoseE February 12, 2019 at 23:59

    When my daughter was school aged and suffering from the chronic illness, ME/CFS, we were passed around from school (no understanding), to health school (dismissed her after 1 term because on the days she was able to attend on site, she was her cheerful self), to homeschooling (fairly successful, as she was able to work at her own pace and follow her interests, as much as the illness would allow her), to Te Kura (who tried to be kind, and supportive, but did not have enough online learning in place to make the most of her fluctuating energy levels, cognitive function, pain levels, nausea, light and sound sensivities). The stress of working with different people to understand her symptoms, and what she was able to do (at the same time as we were getting our heads around it), added to the load on her ill body. She stumbled out of her high school years with a handful of ncea credits, and awareness that she had not been given the best chance to succeed while coping with her chronic illness.

    This is what the CDC says about children with ME/CFS and school... "Children with ME/CFS may miss school, which may be mistaken for school phobia. But unlike those with school phobia, children with ME/CFS are still ill and inactive on weekends and holidays. They may not be able to do their hobbies and take part in social activities as they did before the illness. They also may have a problem completing school assignments within the usual time. This might be a result of problems with thinking, learning, and memory caused by the illness." https://www.cdc.gov/[…]/children-symptoms-diagnosis.html
  • Posted by TaraL February 13, 2019 at 23:32

    Could not agree more. My daughter (who also suffers from ME/CFS) was failed by the system at every turn. Her first high school did not think to refer her to the health school, I had to find out from a random stranger five months after she got sick that there was such a thing. Her next high school was the opposite - extremely supportive, they did everything they could to support her, but in the end, her illness got the better of her and she was unable to keep attending. As long as she was able to attend school part time, the health school was great, but as her health deteriorated, they put on increasing pressure, expecting her to do extra lessons if she had missed a lesson due to being too unwell, and never mind that she wasn't any better than when she missed said lesson. Her tutor explained that he was under pressure from his superiors, and they were under mandate to get kids transitioned back to school, and their hands were tied. There was no provision for children for whom returning to school simply wasn't an option, and as a result, we had no choice but to remove her from the health school.
    We tried Te Kura, but as she was too unwell to complete any work, she was summarily dismissed for not turning in any work - understandable, but once again, the system does not provide for children whose disability disqualifies them from the "normal" routes of learning available in this country.
    She is about to turn 17 and has no NCEA credits and no way to obtain them. She was a gifted student with an exceptional talent in languages and arts and a passion for history. She would have done well given the opportunity and had a bright future, but as of now, her future is uncertain. She needs access to a tutor who can come to her once a week and allow her to work slowly and steadily, who will rekindle her passion for learning and not put pressure on to return to school, sit exams or perform at a given level. She will not be ready for NCEA for a long time but there is no reason for her learning to stop completely, other than a system that just does not work for those with chronic illnesses.
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