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Made by a PURA parent in the UK. Information only, not medical advice. Read our disclaimer.
Guide

Growing up with PURA: 14 to 25

Benefits, decisions, school and college, health and social care: what usually happens when, and the rules for your part of the UK.

  • Easy read: in short
  • England, Wales, Scotland and NI
  • Every rule checked 3 Nov 2026
  • Information only, not legal or medical advice

Easy read In short

  • Between 14 and 25, lots of things change. Plan early.
  • From 16, DLA moves to PIP. In Scotland, Child Disability Payment usually moves to ADP before 18.
  • If your child can’t manage their money, you can become their appointee.
  • From 16, the law says young people make their own decisions if they can. Get advice about power of attorney or deputyship.
  • Support at school or college can carry on up to 25 in England and Wales.
  • Ask for help early. It’s never too late.

Read the full timeline ↓

Every young person with PURA syndrome is different, and so is every family’s path. Use this as a map, not a checklist: ages are when things usually happen, and it’s never too late to ask for help. The rules here were checked against official sources on 3 Nov 2026. They change, so follow the links before you act, and get free advice for big decisions.

By the PURA Family Directory team · information only, not medical or legal advice

Which nation are you in?

England: from 14 to 25

  1. Year 9 (13 to 14)
    Education

    Preparing for adulthood starts

    If your child has an EHCP, every review from Year 9 must include preparing for adulthood: education and work, independent living, friends and community, and good health (SEND code of practice). NICE says health and social care should start planning by Year 9 at the latest, and help your child find one named worker to co-ordinate it (NICE NG43).

  2. 14
    Health

    Annual health check

    Anyone aged 14 or over who’s on their GP’s learning disability register can have a free annual health check. Ask the practice whether your child is on the register (NHS).

  3. Just after 16
    Benefits

    DLA ends: apply for PIP

    Your child will get a letter shortly after their 16th birthday inviting them to apply for Personal Independence Payment (PIP). DLA stops unless they apply by the date in the letter. If they do, DLA carries on until the PIP claim has been decided.

  4. 16
    Benefits

    Becoming their appointee

    If your child can’t manage their own benefits, you can apply to be their appointee once they turn 16. You don’t need to be a deputy just to look after benefits (GOV.UK).

  5. 16
    Decisions

    Mental capacity law applies

    From 16 the Mental Capacity Act applies. It starts from the idea that a person can make their own decisions unless it’s shown they can’t make a particular decision at the time. When they can’t, the decision must be made in their best interests, and the people who care for them should be asked for their views.

  6. 16
    Education

    Their own say on the EHCP

    From the end of the school year in which they turn 16, the young person gets the right to make requests and decisions about their EHCP themselves, if they have the capacity to. If they don’t, you can act for them (SEND code of practice, chapter 8). Anyone aged 16 to 25 can also ask for an EHC needs assessment.

  7. 16 to 19
    Benefits

    Child Benefit and Universal Credit

    Child Benefit can carry on until they’re 20 if they stay in certain non-advanced education or training, but you must tell HMRC. Otherwise it stops on 31 August after their 16th birthday (GOV.UK). Some disabled 16 and 17-year-olds can claim Universal Credit in their own right, and Child Benefit isn’t paid if they do. Get free advice before you choose.

  8. After the PIP decision
    Benefits

    Check your carer benefits

    Carer’s Allowance needs the person you care for to get a qualifying benefit, such as the daily living part of PIP (GOV.UK). When their benefit changes, check you still qualify.

  9. Before 18
    Social care

    Ask for an adult social care assessment

    If your child is likely to need care and support after 18, the council must assess them before they turn 18 when that would be of significant benefit (Care Act 2014, section 58). You can ask for a carer’s assessment for yourself too (NHS).

  10. Around 18
    Health

    Moving to adult health services

    Children’s teams usually hand over at about 18 (NHS). NICE says the move shouldn’t be based on a rigid age, should happen at a stable time, and someone from the adult service should meet your child first (NICE NG43). Adults whose main need is for health care may be assessed for NHS Continuing Healthcare.

  11. 18
    Decisions

    Power of attorney or deputyship

    A lasting power of attorney can only be made by someone aged 18 or over who has the mental capacity to make it. If your son or daughter can’t, you can apply to the Court of Protection to become their deputy for property and money, health and welfare, or both. A personal welfare deputy is usually only appointed in particular situations, for example when there’s disagreement about care. There’s a fee, and many families get advice first.

  12. 18 to 25
    Education

    College, and EHCPs up to 25

    An EHCP can continue up to 25 if they stay in education or training and still need it (GOV.UK). The council can’t stop a plan just because they’re 19 or over, and it must still be reviewed at least once a year (NI Assembly research summary of the SEND code). EHCPs don’t cover university.

  13. 18 onwards
    Daily life

    Daytime and where to live

    Day opportunities, short breaks and supported living for adults come through an adult social care needs assessment. Supported living means having your own home, alone or shared, with the support you need (NHS).

Wales: from 14 to 25

  1. Early teens
    Education

    Transition planning in the IDP

    In Wales’s additional learning needs (ALN) system, a learner with ALN has an Individual Development Plan (IDP), reviewed at least every 12 months. Planning for life after school is expected to happen at IDP reviews (NI Assembly research summary).

  2. Early teens
    Health

    Ask about adult health services

    Ask your child’s paediatrician when planning for adult health services will start, and who will co-ordinate it.

  3. Just after 16
    Benefits

    DLA ends: apply for PIP

    Your child will get a letter shortly after their 16th birthday inviting them to apply for Personal Independence Payment (PIP). DLA stops unless they apply by the date in the letter. If they do, DLA carries on until the PIP claim has been decided.

  4. 16
    Benefits

    Becoming their appointee

    If your child can’t manage their own benefits, you can apply to be their appointee once they turn 16. You don’t need to be a deputy just to look after benefits (GOV.UK).

  5. 16
    Decisions

    Mental capacity law applies

    From 16 the Mental Capacity Act 2005 applies in Wales as in England. A person is assumed to be able to make their own decisions unless it’s shown they can’t make a particular decision, and decisions made for them must be in their best interests (NHS guide).

  6. 16 to 19
    Benefits

    Child Benefit and Universal Credit

    Child Benefit can carry on until they’re 20 if they stay in certain non-advanced education or training, but you must tell HMRC. Otherwise it stops on 31 August after their 16th birthday (GOV.UK). Some disabled 16 and 17-year-olds can claim Universal Credit in their own right, and Child Benefit isn’t paid if they do. Get free advice before you choose.

  7. After the PIP decision
    Benefits

    Check your carer benefits

    Carer’s Allowance needs the person you care for to get a qualifying benefit, such as the daily living part of PIP (GOV.UK). When their benefit changes, check you still qualify.

  8. Before 18
    Social care

    Adult care and support assessment

    Ask your council for a care and support assessment as an adult, and a carer’s assessment for yourself (GOV.UK). Wales has its own Continuing NHS Healthcare framework for adults whose main need is for health care.

  9. 18
    Decisions

    Power of attorney or deputyship

    A lasting power of attorney can only be made by someone aged 18 or over who has the mental capacity to make it. If your son or daughter can’t, you can apply to the Court of Protection to become their deputy for property and money, health and welfare, or both. A personal welfare deputy is usually only appointed in particular situations, for example when there’s disagreement about care. There’s a fee, and many families get advice first.

  10. 16 to 25
    Education

    College, and the IDP up to 25

    An IDP can continue at a further education college. The duty to keep it ends at the end of the academic year in which the young person turns 25 (ALN Act 2018, section 34). There’s no automatic right to education until 25: the ALN Code’s starting point is up to two years of further education or training, and the council can decide on more in some circumstances (NI Assembly research summary).

  11. 18 onwards
    Daily life

    Daytime and where to live

    Day opportunities, short breaks and supported living for adults are arranged by your council’s adult social services after an assessment (GOV.UK).

Scotland: from 14 to 25

  1. 14 to 25
    Education

    Planning for young adult life

    Scotland’s Principles of Good Transitions, endorsed by the Scottish Government, cover young people with additional needs from 14 to 25 (NI Assembly research summary). The Scottish Government published a National Transitions to Adulthood Strategy for young disabled people in June 2025.

  2. 12 months before leaving school
    Education

    School-leaving planning

    For many young people with additional support needs, the council must ask health, social work, colleges and others what support they’ll give at least 12 months before the expected school-leaving date, and pass information on at least 6 months before, with consent (ASL Act, section 12; Enquire). Schools are encouraged to start much earlier. A Co-ordinated Support Plan ends when they leave school.

  3. 13 weeks before 16
    Benefits

    Adult Disability Payment: you choose when

    The earliest you can apply for Adult Disability Payment (ADP) is 13 weeks before the 16th birthday. Child Disability Payment usually carries on until 18, and you can apply for ADP at any time before then. The move isn’t automatic, and you usually need to apply before the 18th birthday (mygov.scot).

  4. 3 months before 16
    Decisions

    Guardianship can be ready for 16

    In Scotland’s incapacity law, an adult is someone aged 16 or over. If it’s needed, you can apply for guardianship up to 3 months before the 16th birthday so the order is in place when they turn 16. Guardianship orders are granted by the sheriff court (Law Society of Scotland).

  5. 16
    Decisions

    Power of attorney from 16

    Someone aged 16 or over who has the capacity to do so can grant a power of attorney (Law Society of Scotland). If your son or daughter can’t, guardianship is the usual route for longer-term decisions.

  6. 16
    Benefits

    Becoming their appointee

    To manage Scottish benefits for them, apply to be an appointee with Social Security Scotland. The DWP accepts that authority too (GOV.UK).

  7. 16
    Education

    Their own rights at school

    From 16, a young person at school has the same rights as their parents in additional support for learning (Enquire).

  8. 16
    Health

    Annual health check

    Annual health checks are available for people with a learning disability aged 16 and over (NHS inform).

  9. 16 to 19
    Benefits

    Child Benefit and Universal Credit

    Child Benefit can carry on until they’re 20 if they stay in certain non-advanced education or training, but you must tell HMRC. Otherwise it stops on 31 August after their 16th birthday (GOV.UK). Some disabled 16 and 17-year-olds can claim Universal Credit in their own right, and Child Benefit isn’t paid if they do. Get free advice before you choose.

  10. 16 onwards
    Benefits

    Carer Support Payment

    In Scotland, carers apply for Carer Support Payment instead of Carer’s Allowance. It’s for carers of someone who gets a qualifying benefit, so check you still qualify when their disability benefit changes.

  11. Before 18
    Social care

    Adult social work support

    Ask your council’s social work services for an assessment as an adult. Under self-directed support, people can choose how their support is arranged (NI Assembly research summary). Scotland doesn’t use NHS Continuing Healthcare. Hospital Based Complex Clinical Care is for people whose needs can only be met in hospital.

  12. 16 to 19
    Education

    After school

    Scotland’s Opportunities for All commitment offers a place in learning or training to every 16 to 19-year-old who isn’t in work, education or training (NI Assembly research summary).

  13. 18 onwards
    Daily life

    Daytime and where to live

    Day opportunities, short breaks and supported living for adults are arranged through your council’s social work services after an assessment.

Northern Ireland: from 14 to 25

  1. Year 10 (about 14)
    Education

    The Transition Plan

    If your child has a statement, the first annual review after their 14th birthday includes a Transition Plan covering education, work, housing, health, transport and leisure. It’s updated at each review. The Education Authority must also ask the Health and Social Care Trust whether your child may need its services after school (NI Assembly research).

  2. 15 years 7 months
    Benefits

    Letters about PIP

    The Department for Communities writes to parents at 15 years 7 months and again at 15 years 10 months. At 16 the young person is invited to claim PIP, and if they claim, DLA carries on until the PIP decision. The letter also asks whether they’ll need an appointee (NI PIP Handbook).

  3. 16
    Benefits

    Becoming their appointee

    To manage benefits for them, apply to be their appointee with the Department for Communities (GOV.UK).

  4. 16
    Decisions

    Mental capacity law

    The Mental Capacity Act (Northern Ireland) 2016 covers people aged 16 and over, but it hasn’t been fully brought in yet. Ask an adviser which rules apply now.

  5. 16 to 19
    Benefits

    Child Benefit

    Child Benefit can carry on until they’re 20 if they stay in certain education or approved training, but you must tell HMRC. Otherwise it stops on 31 August after their 16th birthday (GOV.UK).

  6. 16 onwards
    Benefits

    Carer’s Allowance

    In Northern Ireland, Carer’s Allowance is run by the Department for Communities. When their disability benefit changes to PIP, check you still qualify.

  7. Up to 19
    Education

    Staying at school, and when the statement ends

    Some young people with a statement stay at school until 19, and the Education Authority stays responsible until the end of the term in which they turn 19. The statement ends when they leave school and isn’t kept for college or training (NI Assembly research). In February 2026 the Health Minister said there wasn’t time to bring in post-school care and support plans before the 2027 Assembly election (BBC News).

  8. Around 18
    Social care

    Adult health and social care

    The move to adult health and social care usually happens at 18 (NI Assembly research). Your Health and Social Care Trust carries out an assessment of need. Trust support can include day activities, short breaks, supported accommodation and self-directed support.

  9. 18
    Decisions

    Enduring power of attorney or controllership

    An enduring power of attorney can be made by someone over 18 who understands what it is. In Northern Ireland it covers money and property only. If your son or daughter can’t make one, you can apply to the Office of Care and Protection to become their controller for money and property.

  10. 18 onwards
    Daily life

    Daytime and where to live

    Day activities, short breaks and supported accommodation for adults are arranged through your Health and Social Care Trust after an assessment of need.

Wherever you live

Keep a one-page profile

NICE suggests young people take a personal folder with a one-page profile to adult services. Our care pack does the job.

Moving to adult services checklist

Questions to take to transition reviews, benefit changes and adult care assessments.

Benefits finder

Choose “16 or 17” or “18 or over” to see what may apply now.

Diagnosed as a teen or adult?

What a later diagnosis can change, and how adult care works in each nation.

Prepare for a transition review

Build a one-page prep sheet with your questions and notes.

FAQ

Common questions

When does DLA stop for a young person with PURA syndrome?

In England, Wales and Northern Ireland, child DLA ends at 16 and the young person is invited to apply for PIP. If they apply by the date in the letter, DLA carries on until the decision. In Scotland, Child Disability Payment usually carries on until 18, and you can apply for Adult Disability Payment from 13 weeks before the 16th birthday.

Can I make decisions for my son or daughter once they’re an adult?

Not automatically. Capacity law across the UK generally treats young people as adults from 16. If they can’t make a particular decision, it’s made in their best interests. For ongoing legal authority the routes are a power of attorney (if they have the capacity to make one), deputyship in England and Wales, guardianship in Scotland, or controllership for money in Northern Ireland. To look after benefits only, you can become their appointee.

Does education support stop at 18?

Not necessarily. In England an EHCP can continue up to 25 if they stay in education or training and still need it. In Wales an IDP can continue at college until the end of the academic year in which they turn 25. In Scotland a Co-ordinated Support Plan ends when they leave school, and in Northern Ireland a statement ends when they leave school, which can be at 19.

Sources

Checked 3 Nov 2026. Free independent advice: Contact (0808 808 3555), Citizens Advice, Advice NI.

  • education.gov.scot: education.gov.scot/parentzone/additional-support/how-schools-plan-support/types-of-plan/
  • enquire.org.uk: enquire.org.uk/
  • enquire.org.uk: enquire.org.uk/parents/leaving-school/leaving-school/
  • lawscot.org.uk: lawscot.org.uk/news-and-events/law-society-news/cross-border-mental-capacity-frameworks/
  • bbc.co.uk: www.bbc.co.uk/news/articles/cx2gllrzn1do
  • communities-ni.gov.uk: www.communities-ni.gov.uk/articles/ni-pip-handbook-supporting-young-people-claim
  • gov.scot: www.gov.scot/policies/independent-living/hospital-care/
  • gov.scot: www.gov.scot/publications/national-transitions-adulthood-strategy-young-disabled-people/
  • gov.uk: www.gov.uk/apply-needs-assessment-social-services
  • gov.uk: www.gov.uk/become-appointee-for-someone-claiming-benefits
  • gov.uk: www.gov.uk/become-deputy
  • gov.uk: www.gov.uk/carers-allowance/eligibility
  • gov.uk: www.gov.uk/child-benefit-16-19
  • gov.uk: www.gov.uk/children-with-special-educational-needs/extra-SEN-help
  • gov.uk: www.gov.uk/disability-living-allowance-children/when-your-child-turns-16
  • gov.uk: www.gov.uk/government/publications/send-code-of-practice-0-to-25
  • gov.uk: www.gov.uk/power-of-attorney
  • gov.uk: www.gov.uk/universal-credit/eligibility
  • gov.wales: www.gov.wales/guide-about-rights-children-their-parents-and-young-people-under-additional-
  • gov.wales: www.gov.wales/sites/default/files/publications/2022-05/continuing-nhs-healthcare-informati
  • health-ni.gov.uk: www.health-ni.gov.uk/topics/mental-capacity-act-2016
  • justice-ni.gov.uk: www.justice-ni.gov.uk/articles/how-apply-become-controller
  • legislation.gov.uk: www.legislation.gov.uk/anaw/2018/2/section/34
  • legislation.gov.uk: www.legislation.gov.uk/asp/2004/4/section/12
  • legislation.gov.uk: www.legislation.gov.uk/ukpga/2005/9/contents
  • legislation.gov.uk: www.legislation.gov.uk/ukpga/2014/23/part/1/crossheading/transition-for-children-to-adult-
  • mygov.scot: www.mygov.scot/adult-disability-payment
  • mygov.scot: www.mygov.scot/carer-support-payment
  • mygov.scot: www.mygov.scot/child-disability-payment
  • mygov.scot: www.mygov.scot/guardianship
  • mygov.scot: www.mygov.scot/moving-from-child-disability-payment-to-adult-disability-payment
  • mygov.scot: www.mygov.scot/power-of-attorney
  • mygov.scot: www.mygov.scot/social-services
  • nhs.uk: www.nhs.uk/conditions/learning-disabilities/annual-health-checks/
  • nhs.uk: www.nhs.uk/social-care-and-support/care-services-equipment-and-care-homes/supported-living
  • nhs.uk: www.nhs.uk/social-care-and-support/help-from-social-services-and-charities/getting-a-needs
  • nhs.uk: www.nhs.uk/social-care-and-support/making-decisions-for-someone-else/mental-capacity-act/
  • nhs.uk: www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/
  • nhsinform.scot: www.nhsinform.scot/care-support-and-rights/annual-health-check-for-people-with-a-learning-
  • niassembly.gov.uk: www.niassembly.gov.uk/globalassets/documents/raise/publications/2022-2027/2024/education/2
  • nice.org.uk: www.nice.org.uk/guidance/ng43/chapter/Recommendations
  • nidirect.gov.uk: www.nidirect.gov.uk/articles/arranging-health-and-social-care
  • nidirect.gov.uk: www.nidirect.gov.uk/articles/carers-allowance
  • nidirect.gov.uk: www.nidirect.gov.uk/articles/managing-your-affairs-and-enduring-power-attorney
  • nidirect.gov.uk: www.nidirect.gov.uk/articles/personal-independence-payment-pip
  • nidirect.gov.uk: www.nidirect.gov.uk/articles/your-transition-plan-preparing-future

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