I had a very busy day on Tuesday at the 25th Anniversary conference of national and international charity, Genetic Alliance UK. There is some really exciting work being done in genetic and rare disease research and patients are increasingly involved in this. SNJ is a proud to be a member of GA-UK, along with more than 180 patient groups across the UK. It's also the parent of Rare Disease UK and SWAN UK.
As my sons and I have a genetic condition, I decided I would like to be more involved myself and was delighted (and a bit scared) to be elected as a Trustee of Genetic Alliance UK. I hope our relationship will be fruitful both for SNJ and for Genetic Alliance.
As a result of all this, I was a bit (a lot) late up today and the first thing I saw in my inbox, nestled among the offers from Groupon, Secret Escapes and Amazon, was the latest Department of Education SEND Implementation newsletter. I confess, checking out Amazon Prime Day for stuff I don't need and can't afford came first before I read the newsletter 😉 .
In addition to the changing of deadlines for the transition of statements into the new Education, Health and Care Plans, the Department For Education has just released its latest newsletter, just as schools pack up for the summer (ours already has done)
As well as the announcements explained in an open letter from SEN Minister, Ed Timpson to local authorities on Monday, the DfE have clarified when a new assessment should be sought when changing to a plan. We have heard of instances where parents are presented with a draft EHC plan having had no input from them at all and we do wonder whether many of the EHCPs issued in figures released earlier this year were fully co-produced.
Does an EHCP transfer require a new assessment?
Even with the new timescales, it may be difficult for parents to source external new assessments for an up-to-date EHCP, because there are often long waiting lists for respected, private Ed Psychs and therapists. Therefore, it is most likely that assessments would be carried out by LA Educational Psychologists, Speech and Language Therapists or Occupational Therapy staff. Even then, they are most probably overwhelmed with requests not only for transfers but also for new applications to the SEN system.
In its newsletter, the DfE says:
Deciding on when existing assessment ‘advice and information’ is ‘sufficient’ for an EHC needs assessment depends on the individual circumstances of the child or young person. The SEN and Disability Regulations 2014 require three people to agree that existing assessment ‘advice and information’ is ‘sufficient’ for an EHC needs assessment: 1. the local authority; 2. the parent or young person; and 3. the professional that gave the advice. Unless all three agree existing advice is sufficient, new advice and information must be sought.
Well that's pretty clear. But what does "sufficient" mean? What if is the "professional who gave the advice" is no longer contactable? And how old should the existing advice be to be considered too old to be relevant? In part answer to these questions, the DfE says:
In deciding whether existing ‘advice and information’ is ‘sufficient’ it’s likely that the following will be considered: 1. how recently advice and information was provided; 2. whether and how far the child or young person’s needs have changed since it was given; and 3. whether it is sufficiently focused on the outcomes sought for the child or young person. It’s a good idea for some consideration to be given to the sufficiency of existing advice before a transfer review is started and formal notice given to the parent or young person of an EHC needs assessment, or when the formal notice is given, if more than the minimum 2 weeks’ notice is given. This approach also has the important advantage of allowing LAs the maximum amount of time to carry out the EHC needs assessment and draft the EHC plan and enabling them to meet the overall statutory timescale.
So, no answer to the question of what if the person who gave the advice is no longer contactable - I would assume - and it's only an assumption - that this would mean A.N.Other of someone within the same department from where the original report came from. I'm not including any independent advice in this because it's not likely an LA would consider this primary evidence, no matter how good it is.
Nor does it answer the question of how recent is recent? Again, an assumption might be two years, going on past experience, but this would be for the family and LA to agree in each case. We had a new Ed Psych Assessment because my younger son's last assessment was seven years old and there was no doubt about this being well out of date.
The question of whether it is sufficiently "outcomes focused" is a tricky one. If they weren't including likely outcomes in an assessment from a year ago, then this would suggest it would need to be redone. A document called 'Outcomes" on the Council for Disabled Children Website describes "OUTCOMES" in the following way:
There can be different technical definitions of outcomes but it is simply what is achieved by an individual or collection of interventions. The outcomes should be Specific, Measurable, Achievable, Realistic and Time-bound (SMART), which means the outcomes should be clear and progress against them can be measured. Simply describing what is going to happen, or how often, is NOT an Outcome. The outcome is the end result of what happens; it is why something is being done, and how its success is measured.
Inside the document on page 6, there is a handy EHCP Outcomes pyramid you can refer to which you can see below:
The other bit of advice in the above quote from the Dfe, that it’s a good idea to check your current statement to see if it's out of date or if it contains SMART outcomes that can easily be transferred to a new plan for Education, Health and Care. The chances are it has no provision for health if your child has health needs, so be sure to raise this issue as you will need somehow to provide not just medical evidence, but come up with ways that they can be met that will fit into an EHCP.
If they already have suitable health provision in place, speak to your case officer and your child's medical team about getting this detailed in the plan as it will then become statutory. If they have social care needs or you suspect they might have, you can ask for an assessment and I hope you have better luck with that than I did, even though I did ask. Several times. How do we know if he does or not have social care needs if we don't assess him, I queried? The upshot was, if he wasn't already known to the social care department, you're out of luck and this was usually for over 18s anyway. So there. Or maybe I just got the wrong end of the stick. Whatever, we didn't get one.
But I digress with my mini-rant. The point of the DfE advice here is to check it through and think ahead before you get your transfer notification. If you think new assessments are likely to be needed, get in touch with your case officer and flag this up so that they can check your transfer date and see if it would be a good idea to ask for new assessments straight away so that there is a cat in Hell's chance of meeting the 20 week deadlines.
It is not surprising that the deadlines have so far been taken as "wishful thinking". It's a new system and as I said in my recent post about survivng the process, the longer it takes, the more chance there is of it being worth having. Twenty weeks for Son1 was the end of January. I didn't bother counting with Son2, just to maintain my zen.
Other points to note
Other points to note on the newsletter are:
- LAs are required to keep a register of disabled children under the Children Act 1989. GPs should have an up-to-date register of people with learning disabilities to enable them to carry out annual health checks on people with learning disabilities. Many registers are incomplete. LAs should ask families if they agree to their GP having a copy of the EHCP and making sure the young person is registered as disabled on the GP list. (This means that the principal carer can be registered as such as well)
- Important information about Post 19s and EHCPs that I would urge young adults their parent/carers to read.
- Results of the LA survey and PCF survey - we may be able to bring some commentary on this next week if time allows. If you feel like commentating on this yourself do email us
If you're confused by all the acronyms, visit our Glossary page and discover what they all mean And if you've found any SEND or medical articles you want to read that are locked behind medical journals' paywalls, find out how we can help you get hold of them
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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