Until the age of 18, services for children and young people with long-term health conditions are provided by child health and social care services.
From 18, they're usually provided by adult services.
Between the ages of 16 and 18, the child will start a "transition" to adult services.
This should involve all the services that support areas like:
- health and social care
- mental health
- financial benefits for the young person and their family
Planning for this transition should begin when a child is in Year 9 at school (13 or 14 years old) at the latest.
Transition should be an ongoing process rather than a single event, and tailored to suit the child's needs.
When a child or a young carer approaches their 18th birthday, they may ask their local authority for a transition assessment.
A parent or carer may also ask for an assessment as the child they're caring for approaches 18 because the child's situation will potentially be changing dramatically, which means the carer's needs may change, too.
The local authority has a duty to do this assessment.
The assessment should provide advice and information about what can be done to meet or reduce the person's needs, as well as what they can do to stay well and prevent or delay the development of needs.
Transition assessments could also become part of a young person's education, health and care plan.
It'll help you or the young person you care for to plan ahead.
There's no set age that you have to be assessed at, as the best time to plan the move to adult services will be different for each person.
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.
The local authority must also still provide information and advice about what you or the person you care for can do to prevent or delay the development of care and support needs.
What will happen to my child's existing care and support services while they're being assessed?
A child or young carer receiving children's services will continue to receive them during the assessment process, either until the adult care and support is in place to take over, or until it's clear after the assessment that adult care and support doesn't need to be provided.
Meeting a new team
Transition from child health services to adult health services will mean your child may start seeing a different team at your local hospital or health and social services department.
This can be a scary time for young people as the teams they know and are used to working with change.
It's important everyone involved understands the process, and feels supported and prepared to try to ensure the transition is as smooth as possible.
There should be a detailed exchange of information between the two teams before this takes place.
Your child shouldn't be discharged from children's health services until their care has been transferred to adult health services.
Transitioning to a new mental health team
The age at which children and young people move to another mental health service can differ depending on where you live. For example, some transition at 16, others at 18 or older.
Your Child and Adolescent Mental Health Service (CAMHS) team should work closely with you to support the transition. For example, you could have a joint meeting with your current team and the new adult mental health services.
For more information, see our guide to mental health services.
Emotional support and advice for young people and parents is available from the charity Young Minds.
Transitional planning and education: advice for parents
At age 16, and beyond, young people will often become increasingly independent and may want to exercise more control over the support they receive for their special educational needs and disabilities (SEND).
Colleges, your local authority and others who provide services for young people when they're over compulsory school age are expected to communicate directly with the young person.
Talk to your son or daughter and agree how best you can be involved, and how much support they'll need as they get older.
Once you have agreed arrangements that work for you, your son or daughter should let their college know.
If a college can't meet a young person's needs because they require specialist help, they (with support from their parents) should consider whether they need an Education, Health and Care (EHC) needs assessment, which might lead to an EHC plan.
EHCs offer families personal budgets so they have more control over the type of support they get.
If you think your son or daughter needs an assessment, you should both discuss this with the college. A request can be made for an EHC plan up until a young person reaches the age of 25.
Benefits for the young person and their family
As a parent carer, you can claim benefits on behalf of your child until they reach the age of 16.
From the 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 reduce if your child is no longer classed as a dependant.
For information on how your benefits might be affected, contact a specialist benefits advisor – for example, from Citizens Advice.
In some cases young people with disabilities won't be able to manage their own benefit payments and will need an appointee (usually their parent or carer) to help them.
Disability Living Allowance
If you're a parent or carer of a child with a disability, you can claim Disability Living Allowance (DLA) for your child until they turn 16.
Once a disabled person turns 16 and wants to claim a disability benefit, they'll need to apply for Personal Independence Payment (PIP).
PIP has replaced DLA for working-age adults (aged 16 to 64) with a disability.
Transitioning from school into work
If your child decides to move into work, they might want advice and guidance.
They can get specialist advice about work and disability through a Disability Employment Adviser at their local Jobcentre Plus office.
Find out more about disability and the workplace.
If a young person is thinking of moving away from home, they might want to consider supported housing.
Supported housing is available for people who are vulnerable or have a disability. It allows people to live independently and still receive the care they need.
The care offered in supported housing can range from on-site support to occasional visits, and can be offered for a few hours a week or up to 24 hours a day, depending on the person's needs.
Sheltered housing is available for physically disabled people, people with mental health problems, people with learning disabilities and older people.
It's a good idea to visit the supported housing scheme you're interested in before applying so you can speak to other residents and make sure your child's care needs can be met.
To find out more about housing options in your area, speak to your local authority.
Media review due: 30 September 2021