Supporting disabled children, young people and their families: guidance

Guidance to help improve the experiences of disabled children, young people, and their families.

Transitions in adult health and social care

As outlined in Principles of Good Transitions, there should be one overarching transitions plan, coordinated across services by a lead professional. This section includes information about transitions in adult health and social care, however this should be as part of this holistic approach to planning transitions and read along with the background information on transitions, further and higher education and employment sections.

In this section you can find out about…

Health transitions

There are big differences in the way that medical and social support for children and adults are organised. For example, adult services often focus on working with individual adults, making it difficult for families to give the supportive role they have been used to with child services. Some areas have transitions teams to help in managing the transfer to adult services although many parents discover that that they have to do a lot of work themselves to coordinate help. In keeping with the "Principles" summarised in the general section on Transitions. It really helps to start planning early and to be prepared, persistent and clear about the support needed.

Services are now "joined up" as Health and Social Care Partnerships, run jointly by the NHS and Local Councils. Information on how partnerships work in your area can be accessed via individual council websites. More Information about NHS Services across Scotland, including resources for young people can be found at NHS Inform.

Transition plans

If a young person has ongoing healthcare needs this this should be highlighted in a Transition Plan so that the right adult service is in place once children's services stop. The school team helps coordinate planning and making sure that the right healthcare services are involved.

Because children's and adult healthcare services are separate and structured differently young people and their families need to be aware of the different way of working in adult settings and how to adapt to them. In some circumstances there may be no equivalent adult service and support services like respite might be more difficult to access. Unless Legal Guardianship or Power of Attorney is in place, parents don't have the right to be involved in decisions around health and welfare needs because of confidentiality issues. Power of Attorney can be granted by a young person, as long as they have capacity, to someone else to act on their behalf and to carry out their wishes  By law, if a young person  isn't able to make key decisions or take actions to look after their own welfare, a court can appoint a 'welfare guardian' to do this for them. Welfare guardians can make decisions about where a person lives, their personal and medical care. The welfare guardian might be a relative, friend or a carer. For more information see Talking About Tomorrow.

Young  people with serious long term conditions or chronic health problems can benefit from having an Anticipatory Care Plan. This assists in thinking and planning ahead and understanding their health, e.g. how to use services better , helping to control and  make choices about  future care. This is a useful document which is not legally binding and can be completed together with health and social care professionals.

See the Financial Support section to see what support might be available, including Self Directed Support and The Independent Living Transitions Fund.

Mental health transitions

A Transition Care Plan (TCP) is a document that young people receiving treatment from CAMHS complete as part of their transition to adult mental health services. It gives an opportunity to outline needs, wants, preferences and concerns ahead of the move, so they are able work with the main person who provides their mental health care and plan the process together.The TCP is filled out after you and your CAMHS team have decided that it's time to start the process of transitioning into adult mental health services. The age when this happens can be different depending on individual health board.

Once the transition is complete, a TCP Evaluation Document is filled out so you can provide feedback on the process. 

Healthcare "passports"

Healthcare "Passports" can help address communication challenges of children with complex needs summarising important aspects of a young person's healthcare and can assist communication during transition, e.g. the Promoting a More Inclusive Society Digital Passport and the My Communication Passport

See the Inclusive Communication section of this site for more.

Social Service Support in transitions

Your Local Authority Social Services Department is responsible for the welfare and safeguarding of vulnerable children and adults. Responsibilities include giving you information on local services and organisations that can help, assessing need, and agreeing a budget to finance support. If necessary, referring you to local services.

If you need funding from the council to pay for the support you need, a social worker can be allocated to you. It’s also a good plan to have a social worker allocated as early as possible so that needs are on record. Transitions work best when the team are involved with young people from age 14 to support smoother transition into adult services.

You should call social services using the number on your local council website to find out if there’s a transition team in your area, and if not, to ask what support may be available.

Assessment of needs

You can contact your local Social Services Department  to arrange an assessment of need. A support budget will be based on this. Anyone who is worried about someone else’s welfare can ask for this. You can also ask for an assessment of your own needs as a carer. It's important to remember that eligibility for adult respite services can depend on a full assessment of needs. Councils decide their own eligibility criteria for support. It’s a good idea to get help from a local disability or support organisation, especially if you decide to appeal a decision. If you are refused support, this doesn’t have to be final. If someone’s needs change, or if you feel there are strong grounds for a reassessment, you can ask for their case to be reopened later on.

For further information and guidance on social services supports see the CONTACT resource Talking About Tomorrow.

You can see a series of Youtube videos on giving personal reflections, perspectives and advice on transition from an experienced parent of a young person with additional support needs.

Work is ongoing to develop a more unified national approach to identifying and measuring transitions outcomes and opportunities to share learning, best practice, and resources between local authority areas. We are working closely with organisations such as The Alliance and ARC, to improve the experiences of transition for young people and their families, for example linking with local authorities to discuss challenges and how to overcome them.

Back to top