The move to adult services at 18: what changes, and how to plan it

Support for a disabled young person usually comes from several places at once: the council's children's social care team, the school or college through an Education, Health and Care (EHC) plan, the NHS, and the Department for Work and Pensions. Each has an adult version with its own rules, and they do not all change on the same day, which is why the law puts so much weight on starting early.

The young person is at the centre of every stage. From 16 more of the decisions are theirs in law, and the plan is meant to be built around the life they want as an adult, whether that is college, work, a home of their own or staying where they are with more support. The disability care guide covers the kinds of support an adult can have at home.

The duty rests on two tests. A young person is likely to have needs if there is any likely appearance of a need for care and support as an adult, not only needs that will turn out to be eligible. The guidance says it is highly likely that anyone already receiving children's services meets that test. The second test, significant benefit, is about timing rather than how much help someone needs. The guidance lists things that affect the right time, including exams, plans for college or work, a planned move out of the family home, and how long it will take to arrange the adult support. There is no set age.

A young person, a parent or anyone acting for them can ask for a transition assessment. The council must consider the request, and if it refuses because it thinks either test is not met, it must give its reasons in writing and give advice on what can prevent or delay needs developing. Where it thinks the time is not yet right, the guidance says it should say when it will be, and that the onus is then on the council to come back to the family. The assessment must involve the young person and anyone they want involved. If the young person would have substantial difficulty taking part and there is nobody appropriate to support them, the council must provide an independent advocate.

At the end the council must say which needs are likely to be eligible for adult care and support once the young person is 18, and which are not. Where needs look likely to be eligible, the guidance says the council should consider giving an indicative personal budget, a figure the family can plan around before anything changes. A parent's own needs can be assessed alongside, which matters if a parent's work depends on the school day. What a carer's assessment covers explains the adult version.

The continuation to 25 is a power and not an entitlement. The SEND code of practice says there is no automatic right to support after 19, and no expectation that everyone with a plan stays in education until 25. What decides it is whether more time in education or training would help the young person reach the outcomes in their plan, and whether they want to stay. The outcomes written into the plan from year 9 carry weight later, so make them specific.

A plan that is ending should be planned carefully, and support should generally stop at the end of an academic year so a course can be finished. The guidance also says that when an EHC plan ends after 18 and adult assessment and planning have not happened, the same duty to keep children's services going applies.

1. 1

   Children’s services tell the NHS

   At 14

   Children’s services should identify young people likely to need adult NHS continuing healthcare and notify the integrated care board (ICB) that will be responsible for them as adults.
2. 2

   A formal referral for adult screening

   At 16

   There should be a formal referral to the ICB’s adult continuing healthcare team for screening, using the adult checklist.
3. 3

   A decision in principle

   Soon after 17

   The ICB should decide in principle whether the young person will be eligible, so a package can be arranged in time for the 18th birthday. If needs are likely to change it can make a provisional decision and check it again nearer the time.
4. 4

   Any adult funding starts on the birthday

   At 18

   Eligibility decided in advance comes into effect on the 18th birthday, subject to any change in needs. The first review is normally three months later, then at least once a year.
5. 5

   If the answer is no

   Any time

   The young person and their parents should be told, and told of the right to ask for an independent review. The ICB should stay involved in planning, because some health needs are still the NHS’s to meet.

This is the part of transition that can remove the most support at once, because a young person can have a children's continuing care package up to 18 and not meet the adult test afterwards. The adult framework says a young person's package should not change simply because they have moved from children's to adult services, and that no services or funding should be withdrawn without a full joint health and social care assessment and other funding arrangements in place. Where needs have changed, a change should be planned with the young person.

The protection is the timetable. If nobody has mentioned adult screening by 16, ask the continuing care team in writing to make the referral, and ask that someone from adult continuing healthcare comes to the transition planning meetings. NHS continuing healthcare explains the adult checklist and decision, and personal budgets and personal health budgets covers taking NHS funding as a budget the young person controls.

For health services generally, NICE guidance says transition planning should start by year 9 at the latest, and that the young person should have one named worker to coordinate it. Ask each specialist when their service stops and who takes over.

PIP is assessed on how a condition affects everyday tasks and getting around, rather than on the diagnosis, and it is a different test from DLA. It helps to gather evidence before the claim goes in: letters from specialists, the EHC plan, and a written account of an ordinary week in the young person's own words where they can give one. PIP and paying for care at home covers the claim and how PIP can go towards support, and Carer's Allowance explained covers the parent's side.

From 16, gov.uk says the young person should have their DLA paid into a bank account in their own name. An appointee manages DWP benefits only. It gives a parent no authority over other decisions or other money, which the next section covers.

A parent who has signed every form for sixteen years may find a GP, a college or a social worker speaking to their son or daughter directly, and asking for the young person's permission before sharing information. That is the law working as intended. The SEND code of practice says parents are likely to stay closely involved in the great majority of cases, and the Care Act guidance says many young people will want their parents in their assessment. What changes is that the young person is the one asked.

Where a young person cannot make a particular decision, such as where to live or how their money is managed, it will be made in their best interests, and the family must be consulted. That is different from the family deciding. If there is a serious disagreement about arrangements for when an eligible young person turns 18, the NHS continuing healthcare framework says it should be resolved before the birthday, through the Court of Protection if talking has not settled it. Mental capacity and how it is assessed explains the test, and lasting power of attorney covers the document a young person with capacity can make at 18.

Ask the young person early what they want the years after school to look like, in whatever way they communicate best, such as pictures or a one-page profile. A plan written in their words is easier to argue for.

Keep your requests short and specific, and send them by email so there is a date on them. Name the duty you are relying on, such as a transition assessment under section 58 of the Care Act 2014 or the referral for adult continuing healthcare screening, and ask for a reply by a date. If a decision goes against you, ask for it in writing with the reasons. Your council's local offer lists its services for young people preparing for adulthood, and the local SEND information, advice and support service gives free, impartial help with EHC plans and appeals.

Two organisations are the ones to name. The Council for Disabled Children publishes guides and case studies on preparing for adulthood, and runs the network that supports local information, advice and support services. Contact, the charity for families with disabled children, has advice on each part of this and a free helpline for parents and carers.

If the young person wants a home of their own, supported living versus care at home sets the options side by side. If you are reading this because caring at home has become too much, when parents can no longer cope covers what to ask the council for. Where the young person has a learning disability, care at home for adults with a learning disability describes what adult support can look like day to day.

Sources: Care Act 2014, section 58, Care Act 2014, section 66, Care and support statutory guidance, chapter 16, SEND code of practice: 0 to 25 years, Children and Families Act 2014, section 46, National framework for NHS continuing healthcare, Children and young people’s continuing care national framework, DLA for children: when your child turns 16, Mental Capacity Act 2005, section 2, NICE guideline NG43, transition from children’s to adults’ services.