Chronic Health Conditions as Disability—Education

Legislation required for Health Schools to accept school pupils with long term chronic conditions.

Presently some health schools opt only enroll pupils with the aim of getting them back to their usual school in a limited time frame.

Flexibility is required to co-ordinate Health School and a combination of Health School and usual school attendance dependent on the pupil's physical and cognitive ability due to underlying chronic health conditions.

Why the contribution is important

Chronically ill young people are falling out of education and age-appropriate interaction.

by SamF on February 12, 2019 at 12:55PM

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Comments

  • Posted by sharonhagan February 12, 2019 at 13:03

    we absolutely need this so many school age children and teens have chronic illness now.. it needs to be understood that chronic means its not temporary and provisions put in place for these kids who are not well enough to go back to school
  • Posted by LJMaceBrown February 12, 2019 at 15:08

    Because of a lack of resources some health schools only enrol children who are able to return to fulltime schooling. This can create a void for children with chronic conditions, or they are forced to return to school when they are not able, resulting in their worsening condition.
  • Posted by sarahbreen February 12, 2019 at 15:36

    Wholeheartedly agree with all of the above. Our kids with serious chronic conditions often struggle to do everyday tasks, & miss out on so much.. they have many people not understanding their conditions & judging them. To have to continue to try & justify their conditions & what they are able/unable to do (When their drs/specialist have already provided the information) is quite simply cruel & adds to their stress which can worsen their conditions.
  • Posted by Pterw February 12, 2019 at 21:42

    Flexibility in the approach to schooling by the various health schools, in conjunction with the "full time" school, is essential in helping young people with chronic illness to ensure they do not miss out on education.
  • Posted by TaraL February 13, 2019 at 23:06

    This is really needed. The current mandate of the Health School focuses too much on getting kids back to school. My own daughter's chronic condition deteriorated as a result of the pressure to get her back to school, and as a result, she is now unable to attend school at all and will not be obtaining NCEA in the near future. When her condition was worsening we were under relentless pressure from the Health School to meet three times per week, when even once was a huge ask she could barely manage - and if she couldn't manage three, they would expect her to catch up the following week and do even more sessions. I have heard this same story over and over again.
    The current mandate does not recognise at all that "chronic" means "permanent and unrelenting", there is no expectation of imminent recovery and a return to school is often unmanageable. Pressure to get these children back to school is punitive and harmful, as it often results in the child's health being compromised further.
    There needs to be more flexibility for the health school to provide much-needed tutoring to students who wish to learn but are simply unable to attend school at all, for an extended period of time. There is a huge need for this and there is no alternative option that provides for funded in-home tutoring for these children. Not every parent is able to home school their child and not every child learns well in a 100% self-managed environment like Te Kura or other correspondence schools.
  • Posted by JeanetteA February 17, 2019 at 22:05

    Please specifically consider how to provide for the educational needs of children who suffer from Myalgic Encephalomyelitis (sometimes called Chronic Fatigue Syndrome) as children with this illness (as well as illnesses with similar manifestations) are often cognitively struggling to function on a day to day basis and have energy failures that prevent them from re-engaging in what would seem to the average Dr or parent or teacher or peer, to be a logical way and in reasonable time frames. The expectations and ways in which the progress IEP's are written, only illustrate to the ill child, how little they have achieved in relation to the plans they have been harnessed into agreeing to. Can we focus on what these kids CAN do, rather than what they are not achieving, please? These children are often classified as being under Child/Adolescent Mental Health Services, just because they don't fit anywhere else in the health system. They may appear very anxious (but that is usually because they are kids and haven't yet learned the skills of managing their own or adults expectations, in the face of this brutal thieving illness), so they get labelled as suffering from anxiety or having mental health issues, and yet these kids are just struggling to remain engaged in life, bewildered at what's happened to their health and lifestyle, feeling lonely and trying to comply ecause they have no language tools for explainng how they feel or what is not computing in their cognition fog. The education system pushes them instead of listening to them. They have no sense of agency in the way the schooling system treats them (i.e. it's like they are only acceptable if they "recover"). I know of several families who have opted for Te Kura because the Health Schools become hostile and occasionally bully them, unwittingly or not, and kind of squish them out of the roll, because its clear they are not keeping up with the pace or expectations. The "pass" or "fail" mentality is strong in the Health Schools system, whereas this does not fit well with ME/CFS kids pace of life or week to week energy capacity. Parents and children alike, ought to be treated with dignity, rather than power-challenges regarding the often crawling pace that they manage for submitting school-work: Perhaps the faulty expectation is that all "sick" kids will recover in a set amount of time. I ask for reviews of:
    1. The enrolment criteria for the Health Schools (and perhaps for Te Kura as well), so that children with ME/CFS and others with more chronic conditions, have an education environment that they can belong to/within and pace themselves forward within, until they are 23 years old, if needs be.
    2. The Government provide funding for the Health Schools to employ enough teachers on long term relieving or permanent contracts, so that the need for a lot of temporary teachers is not so great. (The constant change in teachers can be upsetting for kids who need routine and who build rapport with one teacher, only to have them leave a few months later. Loads of energy can be used getting used to a new teacher and if short contract teachers are looking for permanent work elsewhere, they are not committed to the kids, they are rightly working for themselves, to appear to be successful and to achieve results for their next permanent job application.
    3. There is a need for respectful powerful education connections with the parents of kids with chronic illnesses, rather than an attitude that the parents are harmful enablers of the chronically ill.
    4. Unfathomed and hardly treatable, misunderstood chronic illnesses like ME/CFS have often left the sufferer and the family carers traumatised by the health "system" and it would be nice if this was not repeated by the Education "system".
    5. Agency and leniency in making and changing IEP's is very important, as is being allowed to cancel meeting with the teacher on the day due to unforseen super-unwellness.

    Maybe the Health Schools are not the best place for chronic illness kids, but it is vital that some new space or tailor-made space for chronic illnesses is provided, otherwise there will e more and more "unschooled" and "hardly schooled at all" young adults who lived through chronic illness when in their teens or primary school years.
    See this webclick to see how to understand this particular chronic illness. http://voicesfromtheshadowsfilm.co.uk/paediatric-mecfs/
    Jeanette
  • Posted by JeanetteA February 17, 2019 at 22:30

    In addition, I wanted to note that the current Governmental Mental Health Enquiry discussions and the formulation of decisions regarding the Independent panel's recommendations regards mental health, will have some effect on the future arrangements for children with acute or chronic anxiety and depression or trauma-related -recovery.
    This may be an emerging special extra area that ought to be considered and provided for, in the disability and education discussion and policy directions. Please leave room for the future developments that may need to be accommodated by Health Schools, Te Kura or other means.

    I note that from its August 2018 BOT meeting, the Northern Health School is already concerned about roll growth and what contributes to it. The Health Schools seem underresourced and trying hard to be responsive, but without funding to do so satisfactorily. The following BOT August 2018 excerpt added here:
    "Roll Growth
    Our current notional roll is 790 with 83.6 FTTE. The Business Manager has contacted MoE regarding our continued increase in roll numbers during the current year and they have agreed to set the roll for 2019 at 810. This number will need to be reviewed further as they year progresses. Any increases agreed for 2018 are backdated to the start of the school year.
    The Board then discussed why we are continuing to see ever increasing numbers this year. The Principal advised that the additional students are mostly suffering from anxiety. We are also seeing some students suffering from illnesses that on their own would not qualify them to be on our roll. When conditions such as autism which does not qualify are coupled with anxiety students then become eligible."
    When I read this entry in the BOT report, I wondered about these children, how long term their "anxiety" was likely to be, whether it was really anxiety or something else unfathomable (like ME/CFS) . In addition, where there are other illnesses as suggested in this excerpt, with anxiety alongside, then the children become eligible for the Health School enrolment. This appears to be a growing area of pressure on the Health Schools.
    This needs to e addressed well, please, teachers must be cared for in a safe and healthy way, if under intolerable pressure in their work.
  • Posted by JeanetteA February 17, 2019 at 22:34

    Finally, have you thought about providing Counsellors along with the teachers? Some primary schools and most Intermediate and Secondary Schools employ Counsellors and reap enefits from this, as do the counselled students. Is there a good reason why families and kids in distress due to illness would not need a counsellor? Talking therapy just to get through some of their disabling day, could help relieve some of the chronic sorrow and anger or frustration that is in the households and etween the student and their illness or student and parent.
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