What's in this section?

Somewhere in the region of 40,000 children and young people (CYP) are living with a complex health condition in England alone (Care Quality Commission, 2014). As these children and young people enter adulthood, they are more likely to encounter challenges in their transition into adult life than young people without additional needs.

SEND Reforms

Under the SEND reforms brought in from the Children and Families Act 2014, Children move through a progression of education, health and care services between birth and 25 years old. This provides a structure for that young person’s care and allows for the setting of clear outcomes and allocation of the commissioned budget towards it.

Most children and young people who receive ongoing healthcare will receive it from the same multidisciplinary team for most of their childhood. However, once they transition into adult services, a new multidisciplinary team will care for them. This will possibly be in a different hospital, environment or location.

Under 18’s

Under the age of 18, health and care services for children and young people with long term health conditions are provided by child health and social care services. They typically cover:

  • Health and social care.
  • Mental health.
  • Education.
  • Financial support and benefits for CYP and their family.
  • Work.
  • Housing.

Between the ages of 16 and 18 however, the child will start a process of transition to adult services.

Process for Transition

Planning for this transition should begin when a child is in Year 9 at school (13 or 14 years old) at the latest. Transition to adult services should be an ongoing process instead of a single event.

  • The planned transition should take into account the young person’s capabilities, needs and hopes for the future.
  • Transitions should not be based on a rigid age threshold.
  • They should take place at a time of relative stability in the young person’s life.

The young person’s social worker should be your main point of contact for planning transition to adult services. Although other practitioners such as clinical nurse specialists or consultants may also be involved.

They should help you to plan:

  • When to schedule social care assessments and reviews.
  • Develop support plans for those eligible to help young people meet the goals they want to achieve in adult life. For instance: work, interests, living arrangements, staying healthy and safe, money, friendships and being part of the community.
  • Access to other services and support and provide advice and information on dealing with these.
  • How to support your child with increased autonomy, choices, and decision making.
  • Support your child to understand their rights as a young adult.
  • Access to other adult support services as needed before the age of 25.

Transition Assessments

When a child or a young person approaches their 18th birthday and their transition to adult services they can request a transition assessment from their local authority. A parent or carer may also request an assessment on their child’s behalf.

The local authority is obligated to carry out this assessment.

The results of the assessment should provide advice and information about what can be done to meet or reduce the person’s needs.  For instance, how they can stay well and delay the development of needs.

Transition assessments can also form part of a young person’s education, health and care plan.

What if I can’t get an assessment?

If a local authority denies a request to carry out an assessment, it must explain in writing why it has reached that decision. Even if a local authority declines to provide an assessment, they must still provide information and advice regarding the prevention of/ delay of development to, care and support needs.

The transition from CAHMS to Adult Mental Health Services

Access to Child and Adolescent Mental Health Services (CAMHS) end when a young person turns 18. After that, young people are either discharged and fall under the care of their GP, or alternatively are passed onto Adult Mental Health Services (AMHS).

A Transition Care Plan (TCP) similar to a normal transition assessment. It is completed for each young person moving from CAMHS to AMHS. These outline the young person and parents needs, preferences and concerns ahead of the move.

The TCP is shared with your team at young people’s services, as well as the team you will be passed onto at adult mental health services. You can choose to share your plan with anyone else you would like to involve, such as carers, your GP, social workers or anyone else who is important in your support network. Alternatively, you can ask your main point of contact in the treatment team to do it for you.

How your child’s transition to adult health services affects you

As a parent carer, you can claim benefits on behalf of your child until they reach the age of 16. From September after your child’s 16th birthday, you’ll only be able to get payments for them as a dependant if:

  • they’re in full-time education
  • OR on an approved training course.

Once your child reaches 16, they may be able to claim certain benefits in their own right. This could have an impact on your household income, as certain benefits will be reduced if your child is no longer classed as a dependant.

In some cases, young people with disabilities won’t be able to manage their benefit payments and will need an appointee (usually their parent or carer) to help them.

Education

There are a lot of education options for young disabled people after 16 years of age. These can include:

  • Full-time education such as a school or college.
  • Work-based learning which could be an apprenticeship or part-time education.
  • Training combined with employment or volunteering.

For more information on these options and how you can help your child choose the right option for them, see our article on education and learning.

Housing

A disabled person may be the happiest living at home with their parents as they approach adulthood. Alternatively, they may decide that residential or supported living would be the best thing for them.

Having the right kind of care package in place where your child would like to call home is important, as is ensuring it is sustainable and offers safety and stability to them as they transition into adulthood.

For more information on finding the right option for your child, see our article on Housing for people with disabilities.

Employment

Finding meaningful employment is a huge step towards independence for a young disabled person, helping them to feel confident and happy. There are several routes to finding a job, including:

  • taking a course at a local college
  • finding a place with a work-based learning provider

We have lots of resources available, dependent on which route a young person wishes to take, including personal blog posts, tips for getting reasonable adjustments, and advice on how a disabled person can disclose a disability at work if they choose to, see them here in our Employment section.

The Transition Event

My Family, Our Needs holds an annual Transition Event, inviting young disabled people, their parents/carers as well as the professionals supporting them. These enable them to get together for the day and hear about the best ways young people can achieve the future they want.

The event features presentations from professionals in the education, housing and employment sectors. There are also interactive workshops ranging from assistive technology to support with sex and relationships. An exhibition room also showcases the latest products and services which could transform a young disabled person’s life. Find out more about the Transition Event here.

See Transition Articles

Policy piece

Supporting young people through transition

Guidance for practitioners supporting young people through transition. Building independence through planning for transition is a quick guide for practitioners supporting young people as they go through transition. The guide
Read More »