With Lynette Barrett, CEO of National Star and Chairman of NatSpec
One of the biggest worries for parents is what will happen to their disabled child once they finish their education. This is not just a concern for parents of young people with EHCPs. We recently met a mother and her young son with autism, who was refused an EHCP despite being in mainstream education and clearly needing one. He missed out on the option of supported internships and specialist support, but we know he is far from alone. People with EHCPs are not much better off, even if they have complex disabilities or are capable enough to go to university.
But there isn’t much data on what happens to young people with SEND once they’ve left education. The Together Trust is working with National Star, a specialist school for over-16s, to carry out research to understand this better. Lynette Barrett, CEO of National Star and chair of Natspec, writes in SNJ in more detail about the research and how to help…
Help us find out what happens to young people with disabilities once they enter education. Lynette Barrett, CEO of National STAR
Young people with complex disabilities and their families face countless challenges as they transition into adulthood and try to make the transition from the education system to adult services. The transition to adult services is often described as a difficult and confusing process, made even more difficult by disparities between local authorities, social care and health commissioners. Young people must navigate a complex system that varies between local authorities across the UK.
Sadly, there are countless news stories of transitions gone wrong. Heartbreaking stories of young people who made great strides in their development and independence during their education, only to lose those skills later on because they had no opportunity to practice them. It’s a theme we hear in the National Star. One parent told us she was told by her MP that “meaningful activities are a luxury” as long as her daughter is “safe”. Indeed, it is a fundamental human right that all people, with or without disabilities, can live meaningful lives, feel valued, be active members of society and participate in activities that bring them fulfillment and joy. But we also know of successful transitions that have thrived into adulthood and benefited from adequate support and opportunity.
Who is this study aimed at?
To raise awareness of the challenges faced by young people and their parents, National Star is running research in partnership with another charity, the Together Trust. The project aims to inform how the processes and opportunities for young people as they make the transition from education to work can be improved.
We have created two surveys to collect information about what happens after education: one for families and carers, and one for young people. The surveys are aimed at people who have left education or are about to leave, helping us understand their journeys and identify transitions that work and why, as well as the consequences when they don’t.
It doesn’t matter whether young people left school at 18, went on to further education, had general education or professional education. You may have finished your education five years ago or you may be graduating this year. We want to record your whole journey so that we can provide a comprehensive report to the Government.
Lynette Barratt, CEO of NationalStar and Chair of NatSpec
Creative solutions that work
There are also stories of families finding creative and unique solutions. One experience that has been covered in the media is that of Peter and Sally Lawrence. They were keen for their son Simon to be able to live locally but share a home with his peers. Their solution was to set up the Simon Trust. They found the perfect piece of land to house 10 young people with autism and persuaded Surrey County Council to buy it. Linden Farm is a purpose-built development for adults with severe autism and complex needs. The family worked on the project for years, proving to the local authority that this was a sound financial option. It is a great example of what can be achieved when local authorities and families work together and focus on the best interests of young people.
John Harris, a columnist for the Guardian and a parent of a child with an EHCP, has written a very moving piece, which SNJ has covered extensively, about politicians blaming parents for the failures of SEND policy across the country: Although the Government has admitted its failures in implementing the Children and Families Act and work has begun on a SEND improvement plan, we still hear senior politicians claiming that local authorities are struggling to distinguish between families that are “deserving of support” and “the most vocal, the best-funded or the most tenacious lawyers”.
Conduct research
National Star believes that young people with special educational needs (SEND) should have the right to not just live, but a good quality life, and the freedom to choose the support that best suits their needs. That’s why we’re asking families to take a few minutes to complete our survey, which will run until 31 March 2024. The results will be shared with the Government to help develop new SEND standards.
The youth survey has been designed to be user-friendly, allowing for completion in both written and verbal formats, and can be accessed here.
The survey for families and carers can be found here.
Thank you for taking part in this important survey and please share it with your advocacy groups. The more responses we receive, the stronger our message will be to government officials and policymakers.
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Special Needs Jungle was founded in 2008 by Tania Tirraoro as a personal SEN blog and is now an award-winning, multi-authored site covering special needs, disabilities, mental health and rare conditions for children and young people from birth to 25 years old.
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