Down Syndrome: Planning education through to adulthood

It was International Down Syndrome awareness day on 21 March 2017. To help raise awareness, we are writing a series of articles about Down Syndrome and education. Today we are looking to education through to adulthood.

In a week where Kathleen Humberstone, a teenager with Down Syndrome, addressed the United Nations in Geneva and spoke out against discrimination during the event marking World Down Syndrome Day, she is one example of a young person challenging the often outdated misconceptions about children and young people with Down Syndrome.

The progress in education for people with Down Syndrome was summarised in our second article of this series, but there is still progress to be made.

Articles 3 and 4 of our series of articles this week focused on early years through to secondary and commencing further education. Planning for adulthood should start early. Ideally in Year 9 where pupils with an Education and Health Care Plan (EHCP) will be looking at “transition planning”.

It is important to note that EHCPs can continue up to 25 years old. A child or young person (CYP) may be supported throughout this time with an EHCP but it may come to an end before 25. The decision to cease the EHCP must be taken properly and can be appealed to the Special Educational Needs and Disability Tribunal.

The EHCP can only come to an end when either or both of the following apply:

• It is no longer necessary
• The local authority is no longer responsible for your CYP

The EHCP may become unnecessary when your CYP no longer requires the special educational provision stated in their EHCP, which will most commonly be when the young person has either left education, has joined higher education or has reached the age of 25.

The local authority must not cease the EHCP simply because the young person has reached 19 years of age; they must consider whether the education / training outcomes within the EHCP have been met.

New requests for EHC needs assessments for young people can be made. So even where a young person has had some time out of education this does not stop them from returning to education with an EHCP to gain additional qualifications at a higher level, finish a course which they had started or attend further education to prepare them for work or independent living. However, it is important to note that an EHCP will not support a CYP taking a higher education course, such as a university degree.

The achievements of those like Kathleen Humberstone are inspiring and challenges education to ensure the inclusion of those with Down Syndrome.