I am starting this blog with a guilty face as it has been so very long since I last found the time to sit down and write about life with Marigold, who has a rare chromosome disorder, 3q11 trisomy mosaicsm. It’s odd that I find myself with so little time really. I ‘downscaled’ many areas of my life over the Summer to focus on the arduous EHCP process and ensure I put 100% into doing what we need to do to get Marigold the right provision and school. But then as most parents in a similar situation to us know, healthcare admin for a child with complex needs like Marigold IS a full time job. Scheduling in appointments with speech and language, occupational therapists, physios, SEN support meetings, additional private therapies, outpatients appointments with audiology, opthamology, respiratory to name but a few, trying to remember which meds need reordering…throw in multiple school visits to look at prospective settings, a tonne of paperwork and ongoing winter illnesses equaling three hours sleep a night and sometimes I feel like it would be easier to be Chairwoman of ICI. At any rate, I guess I have had some good training if ever I want a career change as a medical PA.
(Also, I •may• have taken on a few teeny tiny other things which I probably shouldn’t have, but because my husband says I am sick and not able to say no. Must get better. )
Unless you are in education or have a child with needs, you probably wouldn’t know much about EHCPs. I certainly didn’t before Marigold. When she was born and we found ourselves exposed to more and more specialists, people kept bandying the term “EHCP” about like it was something I should automatically know about. But I didn’t. It took some time to understand what an EHCP actually was, why Marigold might need one and then an even longer time to actually work out the process behind it. So for the layman, a brief explanation:
Education Health and Care Plans (EHCP) are integrated support plans for children and young people with complex special needs and disabilities. They are focused on achieving outcomes, helping children and young people into school, through school, and preparing for adulthood. They are prepared in partnership with the child or young person, parents, carers and relevant professionals working across education, health and social care specialist services. They replace the current Statement of Special Educational Needs or a Learning Difficulty Assessment.
Process-wise, a request must be made to a local authority for assessment. If this goes to panel and is agreed, there follows a twenty week process to identify whether a child or young person requires an EHCP and if required, the local authority is to ensure that a finalised plan is issued within this timescale.
The final plan is a legal document and any educational setting must provide the support that is detailed in that plan.
The plan is critical, but what lies behind the plan of course is that all-important FUNDING from the local authority to pay for the support, which could come in a range of forms, such as a 1:1 teaching assistant for example.
As anyone who receives any kind of government benefit is aware, funds are not given away lightly. If I could give advice to any fellow parents in a similar situation, it would be this: if you believe your child has needs and will require additional support in an educational setting, starting looking into the EHCP process as soon as possible. Start speaking with professionals and gathering evidence now. Because this process does not happen quickly. Three cycles of SEN support planning are required to be sent off with the EHCP request to assess. The assessment period itself is 20 weeks. Factor in obvious time required for paperwork not to arrive, referrals not to take place (depressingly happens all too often) and you are looking at anything up to a year for everything to come through and provision to be put in place.
People are always surprised given Marigold’s clear diagnosis and obvious need that we have to jump through so many hoops to get her what she needs. People also automatically assume that the option of a special school must be on the table. But proving that your child has high enough need for such a supported environment is also not a straightforward process and one that probably warrants a blog in itself.
For us, we will be starting Marigold off in a mainstream school with an EHCP and are hoping to secure as much support for her a possible. We believe that with the right support, for the immediate future anyway, she will thrive. The plan will be reviewed every year and there may come a point when we decide another setting is suitable for her. Due to her unique diagnosis, we just don’t know.
Most parents feel anxious in the run up to their child starting school. When your child has complex needs and will be starting school, that reaches an entirely new level. Marigold doesn’t talk yet, although her signing is getting better. She needs help with all aspects of self care, from feeding safely to dressing herself. She seems so much younger than any of her peers and her ability to form friendships will not be on the level of others. And yet she is so bright, sociable, driven, determined, well behaved, loves doing work, completing tasks, would sit and be read to for hours…I can see how mainstream school, with support, could work for her.
Our draft EHCP should come through in February and then we have 15 days to go through it with fine toothcomb. I feel my career may have been working towards this very moment – working with lawyers for over 16 years makes you pretty fastidious on the detail!
In other news, Marigold will be appearing in a brief television debut in the New Year on ‘24 Hours in A&E’ following our May admission. Do tune in to see her looking adorable and me looking absolutely horrendous, tired and stressed on national TV. I hope this will also go some way to raising further awareness for those with rare chromosome disorders and Unique, the charity who support them.
This blog has also been written to coincide with BBC SEND week this week, shining a light on the need for more funding to support some of our most vulnerable children.
For more information on Unique, the Rare Chromosome Disorder charity, see www.rarechromo.co.uk
For more information on EHCPs, contact the SEN team at your local council. Any educational setting should have a designated SENCO who will provide a good starting point to this process.