Planning for transition to adult care

This information applies to England and Wales.

Disabled people under 18 need to have a legal guardian who is in charge of their care. This is often a parent.

Once you turn 18, you will be responsible for managing your own care. The way you access funding and services will change and could become more difficult. The transition to adult services needs careful planning.

Your guardian can help you plan, together with your support workers and doctors, for:

When to start planning

You can start planning as early as possible, at least when you are in Year 9 at school in England and Wales. This means when you are 13 or 14.

From then until you turn 18 is called the transition period. Different services will move at different points during this period. Some moves can take time. Careful transition planning means you are less likely to have a gap in services.

Asking for adjustments

Communication about transition planning should be adapted to work for you.

This should be in your preferred communication style. For example, you could ask for:

  • a quiet room for meetings
  • more time for meetings
  • meetings online instead of in person
  • letters and documents in different formats

Asking for reasonable adjustments

You can also ask for an advocate to go with you to meetings about your care. An advocate should be someone you trust, who also knows what your rights are.

Advocacy: Get your voice heard (Disability Rights UK)

Transition assessment

If you are likely to have care needs after you turn 18, your local authority should give you a transition assessment.

This needs to happen before you turn 18, and once it is clear what your needs are likely to be.

Your rights

Your local authority might contact you first about this transition assessment. The Care Act 2014 says that your local authority has to give you a transition assessment if you ask.

Understanding the Care Act 2014 (Speakup Self Advocacy, easy read PDF)

What happens at a social care needs assessment

Someone from the local authority will do the assessment. For example, a social worker or occupational therapist.

The assessor will ask how you’re managing everyday tasks, such as:

  • washing
  • going to the toilet
  • dressing
  • cooking

The needs assessment can be:

  • in person
  • telephone
  • or online

The assessment will last for 1 hour or longer.

How to get the best out of your social care assessment

Transition planning

Your local authority should give you a named person to help you move to adult services. This is often a social worker and will probably be called something like a ‘key worker’ or ‘transition co-ordinator'.

Your local authority might contact you first about your named worker. You can ask your local authority for a named worker when you think that you need one.

Your named worker will co-ordinate your transition plan with you. This plan could involve talking to lots of different people, like your guardian, doctors and teachers.

Your transition plan looks at the support you need to live the life you want after you turn 18. It will have goals around:

  • work, college or university
  • independent living
  • social life
  • health

Your transition assessment should help inform your transition plan.

Education Health and Care Plans (EHCP)

You can be in adult care and also in education.

Your EHCP ends when you:

  • leave education
  • or have met all the outcomes in your EHCP
  • or have reached 25

During your transition period, you can use your annual EHCP reviews to help you plan. You could ask questions like:

  • When will I move to adult services?
  • What choices do I have?
  • How is the adult service different?
  • Can I talk to someone who has experience of moving into the adult service?
  • What should I know before I move to the adult service?

Asking for an EHCP review

Usually from Year 9, you would have EHCP outcomes that are preparing for adulthood:

  • employment
  • independent living
  • friends, relationship and community inclusion
  • good health

Preparing for Adulthood: EHC Planning (National Development Team for Inclusion)

Healthcare

Adult medical services are different. You will probably need to deal with more specialists. Ask your doctors or your named worker about the move to adult health services.

NHS passport

Creating a healthcare passport can help pass on useful information about you to healthcare professionals.

This could be:

  • things people must know about you, such as allergies, medication or how you communicate
  • any specific barriers you face
  • things that are important to you
  • your likes and dislikes

There are many healthcare passport templates available online. Use the template that works best to communicate your needs.

Editable hospital passport template (Word document)

GPs and annual health checks

Your GP will stay the same unless you move home. Your GP will have an overview of your care.

If you are on your GP’s learning disability register, you will get an annual health check once you turn 14. These checks are a chance to ask questions and talk about what you need.

Annual health checks for people with learning disabilities (NHS)

Mental health

You usually move to adult mental health services when you’re 18 or older.

You might stay in child services if you start treatment before you’re 18 and your treatment is not long-term.

Your GP should stay the same unless you ask to see a different one.

Moving to adult services can mean that the other people managing your mental health care change.

If you have a therapist, they may be able to carry on treating you if they’re qualified to work with adults.

If you live in a rural area, there’s more of a chance some of the people treating you will be the same.

When you move to adult services, you can ask to be treated by a different person in the same service.

Warning Changing consultants

For example, you could telephone the hospital switchboard and say: “I saw doctor X in clinic. I would really like to see a different doctor next time. Please could I see a different consultant?"

If that’s not possible, you can ask your GP to refer you to a different service. This might be further away from where you live. But you cannot ask for a different crisis community mental health team.

If your medication is working, it will usually stay the same unless:

  • the medication is only prescribed for children, not adults
  • the dose is different for adults If you go to hospital, you will usually go to adult hospital when you’re over 18.

When you turn 18 and you have ‘mental capacity’, you can decide who gets to know about your medical treatment. Mental capacity means being able to make a decision because you can:

  • understand information
  • remember information
  • explain your decisions
  • understand the consequences

The Mental Capacity Act (Mencap)

Social care (home care)

The funding of adult social care services is different. This can mean that your care package can change or reduce when you move from children's services.

The amount of support you get usually depends on your transition assessment. You have the right to challenge the assessment if you think it’s wrong.

Challenging a social care needs assessment

Understanding personal budgets

Warning

Adults are normally expected to pay for some of their social care. How much you pay will depend on your circumstances.

Your local authority will give you a personal budget for social care, based on your assessment. This is what the council thinks your care will cost.

You can choose how to manage this budget. You can:

  • let the council manage your personal budget
  • get a direct payment you manage yourself
  • use a mixed approach

Managing your social care direct payments budget

Complex care needs

If you have complex health needs that cannot be met by the local authority, the NHS might pay for this care. This type of funded care is called NHS continuing healthcare.

If you are eligible for NHS continuing healthcare, you will get a continuing care package to help you move into adult services. Talk to your named worker about this.

Are you eligible for NHS continuing healthcare funding? (MoneyHelper)

Personal health budgets

Personal budgets for social care are managed by your local authority. They are different from personal health budgets, which are managed by the NHS.

What is a personal health budget? (NHS)

Managing money and benefits

Once you turn 18, you become responsible for managing your own money. This includes benefits and social care budgets.

Being able to safely make decisions about finances, benefits and care is called ‘mental capacity’. Mental capacity starts at 16. But legally your guardian can make most decisions for you if you are 16 or 17 and both of the following apply:

  • you do not have mental capacity for the specific decision
  • they have what the law calls ‘parental responsibility’

If you are over 18 and do not have mental capacity, you can get help managing your bank account.

Managing money for someone else

Benefits

If you are not ready to manage your benefits when you turn 18, you could ask someone to apply to be your appointee. This can be helpful if you have mental capacity but need support with benefits.

Become an appointee

Last reviewed by Scope on: 21/06/2023

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