Q:

Would you share your story from diagnosis to getting your EHCP?
(what went well, what was challenging, who helped you through it.)

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28 Apr 2021
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A: SenseCheck

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  • 15 Jun 2021
  • Yes

    Complex

    Initial diagnosis
    - SENCO at nursery picked up behavioural issues and suggested son met speech therapist (ST) for observation
    - ST first suggested possible autism; started process of referral to local CAMHS team, and arranged for series of 4 further ST sessions
    - After 5 month wait saw an NHS paediatrician - disappointing experience and it was made clear they would not give a formal diagnosis for a further 12-18 months ("he may get better once he starts reception")
    - Referred for both hearing and genetic testing to rule out other conditions which might present with similar symptoms to autism - these came back normal
    - went to private paediatrician for a formal diagnosis - we chose a senior consultant who also worked in the local NHS practice (which I would strongly recommend if possible: twin benefits that no one would dispute her diagnosis, as can sometimes happen when you go private, and she was able to seamlessly put us back into the NHS system for ongoing support)

    Needs Assessment and EHCP
    - School had already identified the need for additional support, and arranged for a 121 teaching assistant soon after reception started
    - as soon as we got the diagnosis the school was able to access support from the local autism outreach team, who did an observation and made recommendations. These were implemented by the class teacher and 121 in consultation with the school SENCO
    - Insight: The Needs Assessment needs to show that the school has assessed the child, applied interventions, and that the interventions have failed and that greater assistance is required. If this isn’t demonstrated it is possible the Needs Assessment will be turned down.
    - Formal Needs Assessment process started in spring; it was approved and then reports were repeated for the EHCP which was issued in July. The process was run by the school and each report involved both an observation and a meeting between the professional, teachers, and me. I asked for draft reports to be sent to me for review so that I could check against my notes, and arranged for corrections/clarifications where required
    - the EHCP involved reports from the autism outreach service, speech therapist, occupational therapist and educational psychologist.
    - LA assigned a social worker to manage the process, organising the reports and writing up the EHCP.

    Top tips for reviewing the EHCP draft
    - be rigorous in reviewing all the professional reports, as they will form the basis of the EHCP. We substantially rewrote the first draft EHCP to ensure it accurately reflected both the professional reports and our child's needs (all our changes were accepted)
    - seek advice from others who have been in the same position: a very kind parent at the school spent time with me reviewing the draft and telling me about her own experiences
    - ensure that all recommendations/objectives are SMART, e.g. "two half hour group therapy sessions per week" rather than "access to therapy"

    Transition from mainstream school to resource base
    - while the reports were being done we realised that the school would not be able to support our son even with the EHCP recommendations, so we explored resource base provisions.
    - The SENCO found out from the council which schools had spaces and I called to arrange visits. Once we had chosen our preferred school, we informed the social worker who arranged for them to do a formal assessment to confirm they could meet his needs. We then pushed for that school to be named on the EHCP, and took my son for a short visit at the end of term with his 121 to prepare him for the change
    - The transition was much smoother than we had hoped and the Resource Base has been amazing. They have specialist teachers and TAs who integrate seamlessly with the speech therapist and the mainstream class teachers. Children in the resource base divide their time between the base and their mainstream class depending on their needs
    - After 3 years my son now spends most of his time in mainstream class (with a specialist TA), but still accesses therapies and interventions through the resource base

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