Education for young people with ME/CFS and other 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 a young person needs to be on a trajectory to return to mainstream school needs to be dropped. 

Health school teachers need to actually teach the young person - not leave it to the correspondence program or to parents to do the teaching. A couple of hours per week of coordination of an online program is not enough to support these kids to learn when they are already very challenged by the nature of their condition. 

Teachers assigned to young people need to be qualified to teach in the area that the child is learning.


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 most associated with suicide.

Children can be significantly effected - and may be unable to return to their school. I have an 18 year old son who is house bound and has been unable to attend school for four years and another son (13) who is able to attend only 1/2 time. 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 difficukt task when pain, fatugue and cognitive difficulties predominate. Parents are required to support - this has resulted in a halving of our family income as I am required to be at home at educate my kids. 

My kids and many others have been forgotten. What is avaialble to help unwell kids does not work for those with long term illnesses.  They are currently effectively excluded from education. 

by RoseSilvester on February 11, 2019 at 12:56PM

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  • Posted by JennyArnold February 19, 2019 at 11:35

    Is this site working?
    I agree with most of what Rose has said, except that in our situation with ME in a teenager, when the teacher came to teach them they were so very sick and tired that the noise of the teachers enthusiastic voice was hard to hear/bear. The brain fog was very debilitating. So teachers being prepared to back off and let the child abandon the session if they are too unwell, is very important.
    The parents and children who have this ME/CFS diagnosis/illness are doing their best to manage the symptoms and the day to day stuff. Grief is often present in the child who has lost their life-energy and the parents trying to make sense of how they are now having to live and how their child's learning is dropping way behind. Because most medical staff do not yer understand the illness, there is little sense-making support for the family.
    In this context, the teachers may be the only adult other than family, that the child has engaged with, so the contact itself may be invaluable, but the school work attempts very minimal in output and hard work. The child needs approval and appreciation for the huge effort they have put in. Being alive and breathing, sometimes takes everything they have got. Focusing on what the child CAN do rather on what they are failing to achieve or complete, is paramount, I think. The way the IEP's are talked about and developed, are achievement focused, when engagement focus was more important for a us.
    For us, the constant change of teachers (due to the core teacher levels at Health Schools seeming low and the routine use of casuals and short term contract teachers) meant that we had about 4 teachers over about 4 terms. This meant they all had to get thier heads around this type of illness, it is an illness that seems to demand attention and description (because it is such a mystery to understand and hard for everyone, even teachers, to realise there is no answer and hardly much by way of treatment - it is long term usually.) So there was a lot of what seemed like judgmental attitudes, enthusiastic cajoling to finish pieces of work and hand them in.....ra, ra, go,go kind of stuff. The goal seemed to always be to integrate our daughter back to school (yes please) but wait, she is not better and it just exhausted her more when she tried to comply.
    So, the illness (and maybe other illnesses) are misunderstood by the school teachers who working in the Health school (and maybe Te Kura) sector, leading to expectations of improvement that are not met, leading to teacher frustration. Please provide learning support that is ongoing for the ME kids, until they are 22 years old (Te Kura we found more manageable due to control on the pace of engagement and the different level of expectation. For our child, she is now 19.5 years old and has completed all of her English NZEA 1 level and about 6 credits for NZCEA 1 level Maths, and about 6 Art/design credits. This is all, and now this year we find she is "LOCKED" out of her log-on information for Te Kura and she has to pay for her enrolment with Te Kura now. Surely, with such people, who want to keep crawling forward with education, you can allow kids with chronic illnesses to continue to enrol one or two or three subjects per year until they finish their basic education. Believe me, she is capable, just exhausted and fogged out, and with some dyslexia adding to her lower information processing speed.
    Our daughter stopped attending school due to ME/CFS, during 2012 (aged almost 13). The health School experience put huge pressure on her and thier attempts to get her back to school just wore her out more. We quit them and went to Te Kura and that was much better for her day to day/week to week self management and the pace of engagement with life in general. Schoolwork, art and self care were her only activities for many months of each year. Perhaps this is a better way to look at many (not all) kids with this disability - so that they can use the things they are currently managing, as their subject areas?
    They currently make up a group of overlooked, misunderstood and forgotten children.
  • Posted by JennyArnold February 19, 2019 at 11:41

    Apologies, I could have proof read that better before posting.
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