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Why EHCP Assessments Should Be Mandatory for U.K. Kids With Down Syndrome

Following a battle to secure the support my daughter needs to be able to access an education, an issue I feel is important to spend some time raising awareness of, and discussing, is the provision of Education and Health Care Plans for children with Down syndrome. Time after time we hear stories of children with Down syndrome being denied an EHCP assessment. This is not in the best interests of any child with Down syndrome and I feel some changes to legislation need to be made.

Down syndrome is a clinically diagnosed learning disability. It is diagnosed before, or soon after, birth. Information provided on the NHS website states that
“People with Down syndrome will have some level of learning disability.” This clinical diagnosis proves that every person with Down syndrome has a learning disability and this in itself is enough to qualify for an assessment for an EHCP. With one statement, a government body defines Down syndrome as a learning disability, but in other sectors, such as the DWP and Local Authorities, Down syndrome is denied as having any learning disability as a consequence? It seems to me that the condition is adapted to fit the narrative of what the government considers most profitable for them, depending on the situation.

The only criteria required to approve a child for an EHCP assessment is that the child “may” need an EHCP and that there is evidence of additional needs. A diagnosis of Down syndrome is clear, medical proof of this. Therefore, every refusal to grant an assessment is against the law and in direct breach of the Children’s Act 2014.

We hear of many children with Down syndrome not even being granted an assessment for an EHCP. This is discrimination. A person with Down syndrome does not have to prove they have a learning disability to a Local Authority when they have a medical diagnosis stating this is the case. The clinical diagnosis should be the only evidence required. In order to remove barriers to learning and have education truly accessible to them, a child with Down syndrome needs an EHCP.

Early intervention is proven to improve outcomes for children with Down syndrome. It is my belief that when a child officially starts pre-school, at the age of 3, there should already be a plan in place to ensure that the child has provisions made to have targeted intervention in the areas of speech and language therapy, occupational therapy, physiotherapy and play work. Most of these will have already been running alongside the child and need to be continued within the educational setting. The provision of a tailored curriculum is vital to ensure that a child with Down syndrome is fully catered for within an educational setting. A child with Down syndrome starting pre-school without an EHCP is being failed, when all specific research on Down syndrome and early intervention proves how important it is to get right in the early years.

I believe that some changes need to be made, specifically towards EHCP assessment for children with Down syndrome.

Firstly, it seems that the information provided to families who have a child with Down syndrome is sparse. Many do not realize they can apply for their child to be assessed for an EHCP before pre-school age. Many have not been made aware of the importance of early intervention. Many are actively discouraged from applying, with Local Authorities claiming the child is too young. All of these factors combine to create an inequality of access to the Early Years Foundation Stage curriculum. We believe it needs to be made mandatory that Local Authorities provide families, identified as having a child with Down syndrome, with accurate information on how to apply for an EHCP from the age of 2. Many children may not be in an educational setting at the age of 2, which leaves families out of the loop.

Secondly, I strongly believe it needs to be made mandatory that EHCP assessments must be granted for children with Down syndrome. The criteria for agreeing to assess a child for the possibility of needing an EHCP is that the child has a Special Educational Need or Disability. The other aspect to be considered on the application is that the child may need an EHCP in the future. Evidence shows that children with Down syndrome need EHCPs countrywide.

I would like to see the following changes made to the SEND process, with specific reference to children with a diagnosis of Down syndrome.

1. All parents/carers of children who have a diagnosis of Down syndrome should be sent formal information from their Local Authority SEND department detailing their right to apply for their child to be assessed for an EHCP. I believe this should happen by the time the child is 24 months old to allow for the process to be finalized by pre-school entry.

2. Any application made, for the purpose of ascertaining if they need an EHCP, for a child with Down syndrome, must be approved. It must be made mandatory that children with Down syndrome, who have a clinical diagnosis of learning disability, can access an assessment for their need for an EHCP.

The current process is discriminatory and is failing our population of children with Down syndrome. If our government truly wants all children to be able to access education with the correct level of support and funding then some massive shifts in attitude and procedures need to happen. It is also worth noting that my experience is in relation to Down syndrome, but this article could quite easily apply to a range of other conditions. I know children with Down syndrome are not the only minority group being discriminated against in this area.

Education is a right for every child.

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