Angelman UK Family Conference 2018 - what we learnt about EHCPs

Angelman UK (also known as ASSERT) held its 10th family conference on the weekend of 10-12th August 2018. Laxmi Patel, Head of Education, was invited to give a seminar on Education, Health and Care Plans (EHCPs) and run workshops on what parents can do to make sure they have a good Plan that provides adequately for their child’s needs.

The family conference is an excellent way of getting families together with professionals to share knowledge and to help one another. Families attend (including grandparents, siblings etc.) with their children / adults. Children (and their siblings) are taken out for the day while parents and carers attend seminars, workshops, make connections and share stories and knowledge.

What is Angelman Syndrome?

Angelman Syndrome (AS) is a rare genetic condition that occurs in about 1 in 15,000 children. It was first identified by Harry Angelman in 1965 and was originally called the ‘Happy Puppet Syndrome’ because of the characteristic happy behaviour and stiff jerky movements of individuals. Research has helped us understand that AS is a chromosomal disorder that causes severe learning difficulties. Most AS children are diagnosed between the ages of 3-7 and characteristics include:

  • Developmental delay
  • Speech absence with no/minimal use of words and with receptive and non-verbal communication skills higher than verbal ones
  • Balance disorder and often ataxia of gait and shaky movement of limbs
  • Predisposition to frequent laughter/smiling – apparent happy demeanour
  • Easily excitable with hand flapping
  • Short attention span
  • Delayed growth in head circumference resulting in microcephaly
  • Epilepsy

Until recently it was believed that people with AS had severe cognitive impairment and would not be able to learn to communicate or read and write. There is on-going work in this area but research and work with AAC systems have shown positive results with intensive 1:1 support.

Support with education

Parents attending the Family Conference had many questions. What is an EHCP? How can an EHCP help? How do I get one? Do they have to be drafted in a particular way? We’re not confident our child’s school is fully supporting our child’s needs – what can we do?

What is an EHCP?

The EHCP is a legally binding document (binding on your home local authority) that enshrines your child’s right to receive educational support set out in the Plan. It also includes health and social care provision that those statutory bodies have agreed to provide but the EHCP does not itself give an entitlement to receive health and social care.  

How can an EHCP help?

The EHCP is drafted after a holistic assessment involving input from parents, the school, an educational psychologist, speech and language therapist, occupational therapist, physiotherapist, medical professionals and social services. Advice is taken from the information collated and recommended provision is set out in the Plan. The local authority has a duty to make provision set out under the educational sections of the Plan. The type of provision that you might see in a Plan includes: full time 1:1 support; speech and language therapy; hydrotherapy; occupational therapy; teaching in small groups etc.  

How do I get one?

Education, Health and Care Plans can provide support from 0 – 25 years. Usually, the school will advise parents to request an EHC needs assessment from their home local authority. Either the school can make the request or parents can make a request themselves. You would simply need to show that you consider your child has or may have special educational needs and that you think they may need special educational support to be made through an EHCP.

The local authority will want to see information about your child’s special educational needs, evidence of your child’s progress and action that has been put in place by the school or other setting.

For more about the EHC needs assessment, see our factsheet here.

Do EHCPs have to be drafted in a particular way?

Yes, it is a legally binding document. It must be drafted precisely with no ambiguity so that anyone reading the Plan understands exactly what support will be provided by whom, for how long and how frequently. The current SEND Code of Practice gives guidance but does not say exactly what the EHCP should look like. This means that every local authority may prepare the document so that it looks different. The document should be separated into the following sections with the educational support set out under Sections B, F and I:

  • A - Views, interests and aspirations of the child or young person
  • B - The special educational needs
  • C - The health needs
  • D - Social care needs
  • E - Outcomes sought for the child
  • F - Special educational provision
  • G - Health care provision
  • H1 - Social care provision
  • H2 - Social care provision
  • I - School placement
  • J - Personal Budget
  • K - List of advice

We’re not confident our child’s school is fully supporting our child’s needs – what can we do?

Prepare for the Annual Review or consider requesting an interim review. Gather evidence for the meeting – what are you unhappy about, is additional support required? Are you looking at a change of school? If so, you should visit other schools and identify your preference with reasons so that this can be discussed at the Annual Review. The local authority will consider advice collated for the Annual Review and must send your child’s papers to your preferred school. The local authority will make a decision on the change of school based on (1) the school’s confirmation that it can meet your child’s needs – this includes consideration of your child’s age, ability and your child’s particular special educational needs – and (2) ensuring your child’s attendance would not adversely affect the education of other children that your child would be educated with and that it would not be an inefficient use of funds.

For more about the Annual Review process, see our factsheet here.

Often local authorities will not agree to name your preferred school because of greater cost or your preferred school being full. Depending on the evidence, both these reasons can be successfully challenged by appealing to the Special Educational Needs and Disability Tribunal.

Let us know if you need help at any stage of the EHCP process, whether requesting an EHC needs assessment, appealing a decision to refuse to assess, issue a Plan or if you are appealing to change the support set out in the Plan or the school/college named. We can also advise on the content of your child’s EHCP by carrying out a health check of the Plan in preparation for an Annual Review or before finalising the Plan. We are here to help. 

Contact one of our specialist special educational needs solicitors by email at

I am so happy at the outcome, I don't think we would have had such a comprehensive service from any other law firm, and you took the worry away...I do not regret a single second of the whole process, apart from the bit before you got involved. 

James' mother, Boyes Turner client

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