Chailey Heritage Foundation

Supporting families through transition to adult services for young people with complex neurodisabilities

Leaving a special school is a daunting prospect for many young people and their families. The transition to adult services for those with complex neurodisabilities demands extensive support from professionals to help young people, their parents, and carers during this critical time.

In this article, Paula Marten, Assistant Headteacher at Chailey Heritage Foundation, shares her experience in guiding parents and carers through the transition process.

The challenges of leaving school

Chailey Heritage Foundation is a nonmaintained special school in East Sussex for children and young people with complex neurodisabilities. Children usually start school in their early years, some living onsite, and stay until they are eighteen years old. All the services – clinical, educational, and therapeutic – are available in one place. So, what happens when the young person completes their final year?

The emotional impact of an eighteen-yearold leaving school is significant for any parent. When the child has complex neurodisabilities, the challenges multiply exponentially. Many young people at Chailey Heritage Foundation have been at school there since they were four years old, so leaving can be a scary prospect for them and their families. Parents may not know for sure where their children will go until the summer of the final school year. Understanding the changes to funding and navigating the seemingly endless needs assessments is incredibly stressful for parents. There are no guarantees and a lot of uncertainty.

Options for school leavers

At Chailey Heritage Foundation, young people generally move on to: equipment or services due to providers’ failures to agree, but there are many positive outcomes as well.

Futures: Adult residential services at Chailey Heritage Foundation (19-25 years old).

Specialist or local college: To continue education tailored to their needs.

Living at home: With additional support, accessing various daytime activities.

Residential care home: For more intensive support needs.

Each option requires different funding, so the choices made by the young person and their family cannot be confirmed until the relevant provider agrees to the funding.

Parents often worry after hearing stories of young people left without necessary equipment or services due to providers' failures to agree, but there are many positive outcomes as well.

Legal framework

Several legislative frameworks support the transition process:

• Government guidance: All services involved in providing care and support for young people follow government guidelines.

• Education, Health, and Care Plans (EHCPs): Most young people complete their education by age nineteen, at which point their EHCP can cease.

• SEND code of practice: 0 – 25 Years: Statutory guidance for organisations working with young people with special educational needs and disabilities (SEND), issued by the Department for Education and the Department of Health in January 2015.

• Children and Families Act 2014: Outlines the care and support individuals are entitled to and the obligations of local councils.

• Local Offer: Statutory obligation for local authorities to provide parents with information on SEND provision in their area.

• Care Act 2014: Ensures a smooth transition from children’s services to adult services, ensuring continuity of care.

Empowering parents and carers

It’s empowering for parents and carers to gather as much information as possible, as early as possible. We would advise parents to familiarise themselves with community resources, build relationships with others in similar situations, explore options, and engage with professionals.

At Chailey Heritage Foundation, opportunities for parents to gain knowledge and establish social links are provided through:

• Future placement planning meetings: Held annually from Year 9, increasing in frequency during Years 13 and 14.

• Information-sharing events: Focused on transition topics.

• Transition/FPP Coordinator and Family

Liaison Workers: Employed to support and advise families throughout the process.

• Staff training: Ensuring all staff are equipped to support the transition to adulthood.

Advice from experienced parents

Parents who have gone through the process offer valuable advice:

Start early

“Look at potential placements at least two years before they are due to leave school.”

Be proactive

“Go to professionals and ask, ‘What do you think of this?’”

Trust your instincts

“Think about what you want in the long term for your son or daughter.”

Young people who leave Chailey Heritage often go on to lead meaningful and happy lives in the right setting and with the right support. Achieving this is not easy, but we will never give up working with parents and families to reach this goal.

Find out more about their services for children and adults at www.chf.org.uk.

Paula Marten will be joining us at Kidz to Adultz North on Friday 11 October 2024 at Manchester Central. She will be delivering a seminar at 12pm about the ‘Transition to adult services for young people with complex neurodisabilities’.

Find out more and register for free here: www.kidzexhibitions.co.uk/ north-seminars