Managing your own care when you become an adult

From the age of 16, you will start to become responsible for your care. You will probably have a lot more responsibility for your care when you turn 18. The way you access funding and services will change and could become more difficult. Think about the life you want and how your care and support can help you to achieve this.

What’s right for you will depend on what you need. Becoming independent usually happens in small steps. For example, using transport and asking for things in shops. Learning skills like these will help you to ask questions, make decisions and start managing your care.

People who can help

Local authority transition team

Before you turn 18, you can ask your local authority for a transition assessment. The Care Act 2014 says they have to give you one if you ask for one.

When you are 14 or under, your local authority should give you a named person to help you transition to adult services. They will often be a social worker and might be called a ‘keyworker’. If you do not get a keyworker, ask for one. You may have more than one keyworker if they change jobs.

It’s your keyworker’s job to help you transition to adult services. You will make a transition plan together. This looks at the support you need to meet specific goals. Your goals should be things you want to be able to do. They should include:

  • employment
  • independent living
  • community inclusion
  • health

Talking to your support worker when you’re moving from child to adult care services

If you do not have a good relationship with your keyworker, you can ask for a new one. 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 Toolkit: The rights of disabled young people in the transition planning process (Council for Disabled Children)

Look at your local authority’s Local Offer web page to see if there’s anything there that might help you. Ask your keyworker to explain anything you do not understand. This could include things like independent travel training.

School or college

If you’re still in school or college, ask what support they might offer, such as:

  • independent travel training
  • independent skills training
  • personal health
  • social education

Your doctors

Your specialist doctors may change. Unless you move areas, your GP is likely to stay the same when you turn 18.

Your GP or specialist will give you an annual health check if you’re on their ‘learning disability register’ and you’re over 14. These checks are a chance to ask questions and talk about what you need. You can ask for a quiet room, a longer appointment or an appointment at the end of the day.

Groups for young disabled people

Talking to other young people with similar needs can help. Look on your local authority’s Local Offer page to see if there are any groups for disabled young people. Search for groups run by young disabled people on sites like meetup.com

Go to meetings about your care

Going to meetings about your care can help prepare you for managing your own care. You’ll have a chance to talk and for people to listen to you. You could start by going to meetings with your parents. Your meetings should be adapted to work for you. This could mean:

  • asking to meet somewhere you feel comfortable
  • taking someone you trust with you (this could be a parent, teacher, social worker or someone from a local disability advocacy group)
  • inviting professionals from adult services to come to your meetings before you leave children’s services
  • asking to meet in a different way if you do not feel comfortable meeting face to face (for example, on the telephone, Skype or by text)

Asking for a meeting

If your care demands change, you can ask for a meeting to talk about why and to make a new plan.

Asking questions in meetings

In your education, health and care plan (EHCP) review, 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?

You could also ask a question on the Scope online community.

Personal budgets

There are 3 types of personal budget:

  • Personal Budget, managed by your local authority
  • Personal Health Budget, managed by the NHS
  • Integrated Personal Budget, managed by your care co-ordinator

You spend these in different ways. You may be allowed to make direct payments for care and support.

Health passport

Health passports give information about you to healthcare professionals. This could be:

  • things people must know about you
  • things that are important to you
  • your likes and dislikes

Search online for a health passport template.

Last reviewed by Scope on: 16/01/2019

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