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Written evidence from Parental Submission 26

1. I am the parent of a 9yo boy with autism, dyspraxia and sensory processing disorder, and a 6yo with low muscle tone and autistic traits. I have been interacting with the SEND departments of [local authority] for 6 years.
2. In my experience, and that of the many families I know with autism in the borough, the SEND system is utterly unfit for purpose. This is partly due to a massive shortfall in funds in one of the highest-need areas in the country. It is partly because the national SEND system was broken and then the EHCP process broke it further. All this has given rise to shambolic management, dramatic staff turnover and a fundamentally adversarial approach.
3. The result is that for all the verbal autistic children I know inclusion is an illusion. Many families are simply left lurching from crisis to crisis.
4. There are grossly insufficient funds and there is a conflict of interest baked into the system. Those paying to assess need are also those paying to deliver support. It is not in the borough’s interest to assess fairly so they delay, dodge, lie and low-ball (eg deeming that non-verbal children do not need speech and language therapy).
5. Only parents with some or all of the following can hold the local authority to account and secure (and re-secure repeatedly) quantifiable support for their kids: money, lawyers, education, childcare, a gift for advocacy and herculean stamina. Most EHCPs take years to get and comprise cut and paste bromides which have no practical impact on children’s education or wellbeing.
6. Diagnostic services for autism in [local authority] are quite good. Support services are frankly appalling. It took us 2.5 years to get a Statement, a further year to get anything in it delivered and 9 months later the borough began the process of trying to gut the statement. In the end we’ve home educated our disabled child for the past 4 years because the unending battle for support was too wearying for the whole family, and the sorts of support available for all the battling were drops in the ocean anyway. However, it is only because we have sufficient financial, educational and family resources that we’ve been free to make this choice. Others are not so lucky.
7. At every stage under the Statementing process the borough rode a coach and horses through code, case law and best practice. Now with EHCPs parents don’t even have those basic protections to support them. Even rudimentary data protection practice is not respected: I and 10 people I know have received other information on children not their own; yet have had to beg for electronic versions of their own documents (for ease of editing, say). Every incremental step forward we and others have achieved has been only via the complaints process. And all the while mine and others' disabled children are robbed of the support that is their legal right.
8. The best demonstration that something is systemically amiss is this: [local authority], even before the recent swinging round of cuts, and the change to EHCPs was in the top 5 boroughs in the country for parental appeals lodged and for parental cases won at Tribunal. Now the borough is high on the list of those most overdue in transitioning all statements to EHCPs. The SEN team know even less about the new processes than they did about the old — for instance they have no knowledge of the personal budgets or direct payments provision so trumpeted when EHCPs were launched.

June 2018