One of the things that really shocked me when my son started school was how hard it was to get support for him so I wanted to write a blog post about the steps parents may have to take just to qualify for support for their SEND child. These hoops parents are forced to jump through cause enormous stress take far too long and are often complexed. Meanwhile the child suffers not only from the lack of support or wrong support in school but from stressed parents at home and even relationship break up. The delays caused to support for my son cause him to have go into become highly anxious and depressed or the point of feeling suicidal, school phobic and ultimately sent him into Autistic burnout .
Getting a diagnoses
The first step to getting support for your child is getting the right diagnoses. There can be a lot of hurdles getting professionals to listen to your concerns, getting a referral, long waiting lists, gathering the right/enough evidence, delays because of atypical presentations or even (as in the case of PDA) professionals refusing to acknowledge the diagnoses that fits your child. Parents in the UK wait on average 3 years for a diagnoses for their and that does not include the time trying to get referred and/or professionals to take you seriously. In our case it was 5 years from referral and a total of over 8 years from me noticing the classic signs of autism such as speech delay and lining up toys despite having a history of autism in our family. Many professionals will tell your child doesn’t need a diagnoses to get support but the truth is they do if you want that support to be tailored, implemented consistently and funded in the long term. Without diagnoses your child’s reasons behind your child’s difficulties are left wide open to the personal opinion of teachers and they may have their own ideas how they should be dealt with. In our case this led to my son being labelled as lazy and manipulative and in effect punished for his undiagnosed PDA/autism, sensory issues, dyslexia and anxiety.
If you have a child with a disability or a SEND the chances are you would of been sent on at least one course either before, during or after your child’s diagnoses. You may of had your parenting questioned and been sent on a parenting course, there are various course for parents such as special needs parenting, autism parenting, and challenging behaviour courses. Meanwhile none of my son’s teachers or support assistants were ever sent on a course to help understand autism and anxiety better.
Research and information gathering
Every SEND parent I know spends hours a day doing research about different approaches, co-morbid conditions, educational tools and approaches etc. If they feel a diagnoses is not right or one has not yet been found they have to gather all the evidence of this themselves to present at meetings and assessments.
Constant meetings, phone calls and emails
On top of the research and information gathering there are all the meetings, phone calls and emails they have to attend to. Whether it be an EHCP review, School strategy or emergency meetings, phoning the school to explain issues or answering emails from CAMHs, OT’s counsellors or phycologists. Many of these meetings can be extremely stressful and you may feel totally alone battling for what you feel is the best approach to your child, often professionals have already banded together behind the scenes and ate just wanting to present their solution often without the majority of them ever having met your child or only very briefly.
EHCP Assessments and Plans
Although some limited funding may be available through the school or local authority without an EHCP (Education and Healthcare Plan) what parents are often not told is that that help may not be transferable across schools or years and can be taken away and nothing put in its place. An EHCP once in place means that your child is entitled to whatever appropriate support they need to complete their education on with equal opportunities to their peers, unless revoked it runs until they are 25 which ever comes sooner. However in order to qualify for an EHCP your child will first need to be accepted by the LA for assessment. I strongly believe that many LA’s turn down assessments as a matter of course to help juggle funding or in the hope some schools and parents will give up.
Tribunals and court action
When this happens parents have to go to tribunal, they have to gather the case themselves are not entitled to financial aid with any legal help. If they get through to the assessment stage once again plans are often refused or inadequate and parents once again have to mount a case to go to tribunal. These facts absolutely floored me. I mean there your are with a child who needs additional support already having to spend all your time and energy fighting the LA that is supposed to be supporting your child. The majority of tribunals rule in favour of the parents, read into that what you will.
Accessing the right specialist provision
So you have fought for your EHCP and your child’s right to certain support and then you find the services your child needs either do not exist in your area or are full to capacity. In theory that should mean the LA is responsible to make sure more provision is made available in the area in practice it means you are either point blank refused it, palmed off with something less suitable or the need for it is simply brushed under the carpet. Specialist schools are often full to bursting and a friend and I worked out one year that we personally knew of 50 families in our area waiting to hear about places when we knew only 20 places were available. If you have an super intelligent autistic child with profound anxiety provision of the right type likely has never existed in your area and they will be forced to muddle through mainstream with minimal support or attend generalised specialist provision that doesn’t fit them or allow them to meet their potential.
Fighting to maintain support
And after all of this if you get through it and your child is doing well chucks of provision may be dropped because your child is now seen to be coping and is not perceived to need it any more (no acknowledgement that the continued provision is why your child is doing well and without it they won’t be doing well any more), EHCPs are reviewed every year and can be revoked. Or the provision your child thrives in may be shut down, have staff cuts or otherwise be changed in a way it can no longer offer the same level of support.
Parents having to leave or supplement educational provision
Is it any wonder then that so many parents are taking matters into there own hands and home education or paying for extra services or private education? Many have had their children excluded, or barely attending school due to a reduced timetable/lack of suitable provision in their area or (like me) feel forced out by the toll it is all taking on their child.