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Paving the Way

Early intervention for children with learning disabilities whose behaviours challenge

The Education, Health and Care Plan Process

Mary Busk, family carer posted on 10/02/17

Mary Busk, family carer, with her son Alex Mary Busk, family carer, with her son Alex

As a parent carer who had lived and breathed special educational needs and disability reform for years, and enthusiastically shared my input, personally and through the National Network of Parent Carer Forums, to the Bercow and Lamb reviews, I had great expectations as the day for starting my son’s Education, Health and Care (EHC) Plan transfer dawned.

However, my optimism soon turned to concern when it became clear to me that the carefully crafted process for production of EHC Plans as set out in the Code was not actually happening on the ground. For example, before the multiagency meeting had even happened, a draft plan was already produced and contained details of my son’s needs and outcomes (incorrectly) written by others. Furthermore, the necessary letter to start the process and set out our legal rights was not sent.

The meeting itself was positive because we had the benefit of  a representative from Preparing for Adulthood who reminded everyone of the need for the outcomes of a young person who is approaching 16 to focus on adulthood up to 25. We also talked about things that matter to him from a person-centred perspective such as how he likes to be spoken to.

I was aware there should have been questions about whether advice was up to date or not. That did not happen but probably did not matter in his case as his needs are well documented through all our various tribunals and school reports, including from therapists. After the meeting, and with concerns about whether the substantial effort required to write a quality EHC plan would actually be followed through, I told the Local Authority that I would like to write the plan. They kindly agreed. It took me a while but I eventually did it in time for his next Annual Review at his new school in April this year.

The Annual Review was positive and having the draft plan formed a really good basis for discussion, The only exception was some efforts to change key special educational needs – such as whether he really has language and communication disorders (no they are not delays);  or whether he could read (he cannot).

We also used the plan to write in health needs, the need for a Positive Behaviour Support Plan (which he already has, but without the right needs identified and support in place, especially from therapists, it would not be enough) and to avoid diagnostic overshadowing (as his health needs can exhibit as behaviours).

We used it to write in social care needs and to include residential short breaks at his new school.  We did not work through the home support so well because we have always struggled with that, and we did not make headway with personal budgets. There does not seem to be much to buy to support our children especially as they get older.

We also used the plan to explain about the person our son is and what he needs in terms of broader support and understanding – for example speaking quietly and not shouting or raising voices; staff who are trained in PECS (Picture Exchange Communication Systems) and so on.

It is really important that these plans define clearly the personalised support required to aid children with learning disabilities whose behaviours challenge. So while writing the outcomes and ensuring their aspirations and so on are very important, the success of the plan in terms of delivery depends critically too on knowing and defining the needs correctly and ensuring the plan defines precisely the resources to meet those needs in all areas. Those resources then need to be delivered.

As my son is in the transition years we also wrote in an action for the LA and the school to plan for his transition. We do not want that to just fall to us. It is not fully clear what that mysterious transition process will involve as even though he is now approaching 17, we have never been told. It is very worrying but I am trying to remain calm about it.

As Lee Scott’s recent report says, more needs to be done to improve communication and empathy with families. It is not, perhaps, fully appreciated that we have not wanted to fight for our sons needs his whole life. This has impacted on my health. We just wanted him to have the right help at the right time. For example we paid for a PECS based behaviour management programme when he was at primary school.

The “Golden Thread” that the Department for Education wants to see in EHC Plans needs a lot of thought for our children and young people. So it is all the more important to write in full partnership with families because getting it wrong is going to cause distress and anxiety to families, get things wrong for the children and young people, and be more costly for families and for local areas.

Transforming Care Partnerships should know and understand who these children and young people are and commit to work with them and their families in genuine coproduction.

This blog was written for the publication of the Council for Disabled Children’s new Education, Health and Care Plan packs featuring case study examples. To download your copy of the new pack, please click here


Download the CBF’s information sheets on Getting an EHC Plan for Families here

Download the CBF’s information sheets on Getting an EHC Plan for Professionals here

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