Planning for transition to adult care

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)

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.

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)

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 and the support you need to overcome those barriers
• things that are important to you
• your likes and dislikes regarding support

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.

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)

If someone lacks capacity in a particular area, but disagrees with decisions being made about them, they have the right to have an Independent Mental Capacity Advocate (IMCA). They work with you to make sure that the decision is right for you, and not for others who might want to make the decision for them.  

Independent Mental Capacity Advocate (Mind)

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 or complaining about your social care

Understanding personal budgets

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

Direct payments

Complex care needs

If you have complex health needs that the local authority cannot meet, the NHS might pay for this care and you will not have to contribute. 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. 

If your needs are between health needs and social care needs, ask for a continuing healthcare assessment.  

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)

Being able to make decisions safely 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’

Once you turn 18, you become responsible for managing your own money. 

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 

If you are over 18 and do not have mental capacity, you can get help managing your money. There are various ways to get help, so read:

Managing money for someone else