Whoever you are, how you consider yourself and less importantly, how others’ classify you, you are here and you are welcome.

This blog will, as regularly as my life will allow, publish thoughts on Autism, the law affecting education amongst other things.  Hopefully, it will point to resources and help elsewhere, it will challenge discrimination and champion equity, it will give you an insight to me, and hopefully, it will be fun to read.

 About me, I’m a 40 something father to twin boys with, as coined by Donna Williams a “Fruit salad” of conditions, each completely different to the other and each beautiful in ways I cannot describe. I’m a law graduate in England with a strong interest in Medical Law, Ethics and in particular, the law which affects Special Educational Need and Disabilities (SEND as it will be referred to from hereon).

My first post really is the reason for starting this blog, it is to share my experience of the Law in the UK from being a parent who knew little about this area of law, codes of practice for Local Authorities, and special educational needs as a whole, to who I am now having gone through to Tribunal to challenge provision.

From diagnosis to Tribunal

Gradually throughout the early years process of Early Years Foundation Stage education our boys showed signs of having Special Educational Needs (SEN is defined by Sections 21-23 of the Children and Families Act 2014 – Part 3).  Both boys struggled with the difference in setting size between the assessment place at a Special Educational Needs Nursery which had high support and low numbers with Therapists on site, compared to the private nursery had high numbers, typically supported by much lower qualified and experienced staff, many of whom were still students.  Despite best efforts of those staff, they were ill-equipped to support either of our boys.  As a result, behaviours were reported on a daily basis of ‘inappropriate behaviour’ which clearly was both misunderstood and not correctly supported.  As a result our boys both left that placement.

Thankfully a wonderful charity based nursery accepted both boys at short notice on the proviso that extra support would be funded by the Local Authority.  This was our first experience of the ‘SEN Game’ or as it’s known on Twitter #SENDReality. The Anonymous Panel decided to fund roughly 2/3 of the entitlement despite it clearly being identified as a ‘safeguarding’ issue.

This is when I first became aware of the following resources I will share with you:

IPSEA (Independent Parental Special Education Advice)
Cerebra
Disability Law Service
Carers Hub

The majority of these resources are charity based and as such, I advise that as much as you may use them, share them and link to them, please try if you can to support them, by either training to help others or by sending money to help them run.

As a Law Graduate, I knew that once the Local Authority identified the duty, they also accepted it or denied it in full and not a graduated response to something which was needed at all times as suggested in our boys’ case.  A long story short is that despite this situation dragging on throughout the remainder of their entitlement (they both joined infants school, aged 4 in September) they only paid part of the expense required to fund their place, despite this being discriminatory on the basis of disability to access their entitlement.

A significant issue around Autism is stress and transitions and given that the Local Authority were aware of the naming of schools and transition to school, no plan for this was put in place.

The entire EHCP process is supposed to take 20 weeks, in our situation for our twins, our EHCP which was triggered in January 2016, was only resolved at First Tier Tribunal in January 2017.  I want to highlight that the 20 weeks, as illustrated below, although a guideline, is only key for the parts where you can trigger a challenge for each component section.  Expect it to take a lot longer.

Here follows my raw experience of the Tribunal process immediately after court;

“So… today was a learning day…

What I’ve learned today from the SEND First Tier Tribunal…

That unless you have a report, from a qualified (preferably higher qualified than the other side) person, detailing exactly the issue, a programme to address it, recommendations for who, to deliver what, when, where, when to review it, how to assess it’s effectiveness, it won’t be going into Section B (Special Educational Need), or Special Educational Provision to support the need….

Now about those specialist reports… here are some stark truths for you to consider…

Under the coalition government, and on a more expedited level under this government, those on benefits the disabled have been vilified and made out to be scroungers (fit to work, for example, cutting support allowances ad-nausea)…

It is supposed to take, by law and code of practice, 20 weeks from the start of the EHCP Process to the end.

It is the duty (LEGAL REQUIREMENT) for the Local Authority to identify the needs of a child with SEN.

The reporting services are commissioned by the NHS, or publicly funded (I’ll get on to the funding next) quango’s to provide these reports and the support identified.

These services have seen massive cuts to funding over the last 8 years, to the point where a lot of very qualified and very experienced people have left those services, leaving behind cheaper, younger, less experienced and less qualified, overworked, undersupported and highly-stressed staff.

Waiting times for reports have gone up…. for example, the Autism Outreach Team (commissioned by the Local Authority to give specialist help to mainstream settings about Autism, Sensory Processing issues etc to help them make the environment sympathetic to autism and promote learning), told us in November (when they were originally supposed to go into school, despite Bl starting in September), that Bl was the 13th new case they had taken on locally this year, in addition to all the children they were already supporting… the November report is subsequently now scheduled for February and March (due to staff sickness – remember the stress I mentioned) in order to prepare a report (which is supposed to go into the EHCP which is supposed to take 20 weeks total and was supposed to be completed in June of this year, which we argued in court today)…

Phew… a lot of information… I know right?

So back to the report… as a result, it wasn’t available today, despite there being 80 pages of ABC (Antecedent, Behaviour, Consequence) sheets in the bundle which all illustrate in great detail how Bl can’t access the curriculum due to cognition issues because of his Autism and Sensory Avoidance or Stimulation issues… (remember that Autism Outreach Team above? They knew Bl was going to this school in February of last year and weren’t notified until September)…

But… going back to the school day above… it can’t go into the report because although it is evidence suggesting the behaviour/issue/need, it doesn’t have a report from a relevant, qualified professional which can be included…

Now… the good news… the plan is due to be re-assessed in a year… at which time the reports will need to be done again…

So… back to the Cuts…

We are left with the following options… either earn enough money to pay for the reports and subsequently not be there to give the consistent support and intensive interaction, speech and language therapy, sensory modulation therapy etc… or, become a full time carer (which we have done), get the training to provide those therapies (because it isn’t going to go into the EHCP because of those reports we can’t afford remember)… There’s a good bit now…

Thanks to socialism and our wonderful government, we are allowed to stay and provide 24-hour support, x 7 days a week (save for 3 hours a week respite), 365 days a year, for a wonderful £65 per week (for which we are grateful and have paid more than enough tax)…

If we turn around and say that we can no longer cope with our boys (which will not happen whilst I draw breath), our boys would go into specialist Foster Care and likely receive greater amounts of support… the Foster carers would get £420-750 per week per child, plus allowances, time off, more respite etc…

Now… I’m no mathematician, but the difference between £65 total for 2 children and £420-750 per child per week seems a lot… that would buy a lot of those reports and that therapy they “NEED”…

So… pretty please, with a cherry on top… Consider this when you are next considering who to vote for… Consider us… consider our boys… consider the thousands of others like us…

I’m done… and now I have to do it all again tomorrow!

With love!”

Thank you for reading my first blog post… I look forward to any comments, feel free to Tweet me @AsdDadAdvocate.

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