Transition into adulthood

With advances in medicines and technology more and more children with life limiting or life threatening conditions are now living into adulthood.

Transition into adulthood is not a one off event but is a process that takes place during your child’s teenage years and should start at around 14 years old tying in with the Year 9 annual review.  

The age at which your child enters adult services is likely to vary depending on where you live and your circumstances. Each service may have a different age when they transfer care from children to adults. Some children will access aspects of adult health care before they are 18, while others may still be supported by paediatric services after their 18th birthday. Ask each service what age the transfer will take place, who is taking over and how they are going to introduce you to the new service.

When your child reaches the age of 18, health and social care agencies will consider them an adult regardless of whether they are able to make decisions for themselves or not. If your child has the mental capacity to make decisions for themselves it is important that you recognise that there will be a move away from parent led decision making to young person led decision making. For decisions about health and welfare, the 

Mental Capacity Act 2005 applies to everyone over the age of 16. Find out more at My adult is still my child, it is a useful website which outlines the legal implications of the Mental Capacity Act 2005 and the changing role that parents have in decision making.

Five key standards should be met during the transition process:

1. Every young person from age 14 should be put at the centre of transition into adult services and their family should be supported for their changing role.
2. The young person is supported to plan for their future and is involved in assessments and in developing a comprehensive plan which reflects their wishes.
3. Every young person has both an end of life care plan and plan for ongoing care and support in adult services.
4. Children’s and adult services will work together to ensure smooth transition.
5. Young people and their family are supported in adult services with a multi-agency team and given honest and realistic advice about what they can expect in terms of how their care and support needs will be met in the future.

Partnerships working between children’s and adult health services will be especially important for a young person with complex and life threatening health conditions and may need to include hospital and hospice care teams. For further information go to together for short live.

1. From the age of 14 years, healthcare professionals should begin to discuss with you and your child the plans for transferring to adult healthcare. 
2. It is helpful if your general practitioner (GP) is involved as they can be a key point of contact as your child moves into adult services even if they have not had much contact with your child up to this point.
3. Bear in mind healthcare professionals will change for example continuing health care. It is helpful for you and your child to be introduced to new staff and agencies as part of the transition process.
4. If your child is aged 14 or over, has a profound learning disability or a mild learning disability with other complex health needs they will be entitled to a free GP annual health check.
5. You and your child may not have access to certain services once they become an adult. For example, this could be Surrey’s children’s hospice St Christopher’s. Whilst more and more adult hospices are beginning to play more of a role with young adult people, they may not offer the range of support, services, therapies and short breaks that you are used to.
6. Make sure you have parallel plans that will both help meet your child’s needs and wishes should their condition deteriorate as well as plans whilst their health remains stable. Both should be reviewed regularly and documented in a format acceptable to adult services as well as children’s services. It is important a copy is given to your child’s GP.
7. Your child will need your support to access a social life and relationships, important aspects of their wellbeing. Your local social care team can carry out a needs assessment thereby ensuring a care package is in place which will help to meet these needs.
8. You may also find there will be changes to grants or benefits that you receive affecting the level of income coming into the home. However you may, find your child and yourself will be entitled to new benefits and entitlements. To find out more go to benefits and entitlements.
9. Your child may wish to consider further education after 16 years of age. You can discuss with them a number of options including full time education such as college, university or home education, work based learning such as an apprenticeship, specialist colleges offering tailored courses for young adults with profound and multiple learning difficulties. For local information about education and training options  
10. There are also housing options you may wish to consider to enable your child to live as independent a life as possible for example at university, residential or supported living or living independently. To find out what local housing options.
11. Your child may wish to enter employment or volunteering.