Preparing for Adulthood Guide

Foreword

This is the first edition of the Preparing for Adulthood Guide.

Published August 2023. Updated March 2024.

All information provided in this guide is correct at the time of publishing and was produced in collaboration with Dorset Council, NHS Dorset and Dorset Parent Carer Council (DPCC). Birth to Settled Adulthood is a system wide transformation programme that is currently investigating how best to review and redesign the pathways and services that support young people who are preparing for adulthood. This work is due to be completed by April 2024, and it is likely that we will need to produce a revised version of this document to represent any changes to services.

Note: The Preparing for Adulthood guide uses the word ‘transition’ to describe the phase of a young person’s life where they are becoming an adult, normally between the ages of 14 and 25. We recognise that there are other ways that the word ‘transition’ is used to describe moving from one stage of life to another and that this can be confusing. We will investigate whether we can use another word to describe what we mean in the next version of this guide. If you have any suggestions, we would be very pleased to hear from you.

Have your say about this guide

We want to know if this guide is helpful and easy to use. Have we included everything you need to know and if not, how could we make it better? We will ensure that your views will be considered as we develop the next version of this guide.

Welcome and Introduction

Where do I start?

All children and young people deserve a bright future - to:

  • belong
  • achieve
  • contribute
  • stay safe
  • be healthy

The teenage years are a time of change and exploration as they begin their journey towards greater independence and adulthood. For children and young people with special educational needs and disabilities, an early start to their pathway into adulthood will build their confidence and help make this period in their lives a positive experience.

This guide is for parents/carers of young people on Special Educational Needs (SEN) Support or who have an Education, Health and Care Plan (EHCP). DPCC has produced this guide in collaboration with Dorset Council, parents, carers, and providers of education and health services including NHS Dorset.

We have also talked to families who have been through transition with their young people to ensure that the advice is as useful as possible. As parents and carers, you know the needs and aspirations of your children will play a large part in shaping their future. We hope that this information will help to guide you, as together you make some of the most important decisions of their lives

Think ahead

During year 9 many young people will be making choices about their future learning. This is an ideal time to start thinking and talking about your young person’s adult life. If they have an EHCP they will have an annual review in year 9 (when they are age 13 or 14). This is the first ‘official’ conversation to determine what options are available for them when it comes to planning ahead and preparing them for adult life.

Who is the Lead Professional?

The Lead Professional becomes the person within the network of practitioners supporting the child and family who will make sure that the different agencies act as a team and the help they are all offering fits together seamlessly to provide appropriate support for the child and family.

It is the role of the Lead Professional to ensure that the views of the young person and their family are considered fully in all decision-making.

Who might be the Lead Professional?

  • if a young person has an allocated social worker or early help family support worker, then they are the Lead Professional
  • if a young person has limited life expectancy or highly complex medical needs, then the Lead Professional will be the school nurse or specialist health visitor
  • if a young person has an EHCP and the above do not apply, the Lead Professional is the SEN officer
  • if a young person has none of the above and no EHCP then the Lead Professional is the SENCO at school or college

Think ahead

If your young person does not have an EHCP and you feel they need additional support, please speak to the school in the first instance, to identify needs and possible support strategies.

Schools are expected to and have a duty to identify special educational needs and provide support to meet these. Consider how the annual review can be joined up with any other reviews the young person has, for example Child in Need (CIN) or Child in Care Review or Personal Education Plan.

Age 13 to 14 (year 9)

Education and Health Care Plan (EHCP) and needs assessment process

The following things should be happening.

  • Preparing for Adulthood review coordinated by the school
  • EHCP reviewed, and new outcomes recorded
  • adult social care services work with children’s services to review young people who may be eligible for care services as an adult (for example, complex needs)
  • school to send review notes to SEN provision lead

For young people whose needs are being met by SEN support, You should expect these things to happen,

  • review of support in school for those with additional needs but no EHCP
  • parents and young person find out about post-16 provision from the Local Offer
  • identify key transition points

Who is responsible?

  • school/education setting
  • Special Educational Needs (SEN) and Disability Provision Lead, and any other relevant professionals involved

Friends, relationships and my community

The following things should be happening.

  • think about your young person’s friendship group, closest friend or friends, and other key people in their network (their ‘circle of support’)
  • support your young person to develop and keep friendships. Identify how the curriculum can help
  • ensure your family has information about support you can access
  • think about any out of school activities your young person does or would like to do
  • think about the time that your young person spends away from home/family and how this can help them to build friendships

Who is responsible?

  • parents and carers
  • school/education setting
  • social care if involved
  • children’s services

Developing independence

The following things should be happening:

  • starting to talk about the skills needed for independence in the future
  • starting to talk about their aspirations for the future and the outcomes they wish to achieve
  • work begins with the school to think about curriculum opportunities that might be appropriate to develop your young person’s skills around independence. This could be travel training, money or budgeting, domestic skills
  • find out about potential future housing options
  • think about health skills required for example, making health-related appointments, going to a pharmacy etc.
  • think about supported and/or other employment opportunities

Who is responsible?

  • parent and carers
  • school, education or lead professional

Good Health

The following things should be happening.

  • begin to plan how resources/ services will be accessed in adult life e.g., equipment, therapies, specialist support, prescriptions, dentist, optician, diet and exercise, sexual health etc.
  • people with a learning disability are entitled to an Annual Health Check from age 14; ask your GP surgery about support to access an Annual Health Check
  • the Annual Health Check is a great preventative health opportunity; it gets your young person used to accessing the surgery for other heath appointments into adulthood
  • health transition lead to be identified if needed

Who is responsible?

  • school Nurse/ Health Transition Lead Paediatrician
  • community Children’s Nurses (CCNs) 
  • clinical Nurse Specialist’s (CNSs) and Therapists
  • GP

Age 14 to 15 (year 10)

Year 10 review

Your young person’s Year 10 review is the beginning of the process for choosing their post-16 options. Ideally a preference will be identified in Year 10 and if a move from school is planned, sixth forms, colleges and training providers can be consulted, and provision/support can start to be discussed.

Think ahead

If your young person does not have an EHCP and you feel they need additional support, please speak to the school in the first instance, to identify needs and possible support strategies. Schools are expected to and have a duty to identify special educational needs and provide support to meet these.

Consider how the annual review can be joined up with any other reviews your young person has, for example Child in Need (CIN) or Child in Care Review or Personal Education Plan.


EHCP and needs assessment process

The following things should be happening.

  • EHCP reviewed, and outcomes updated
  • review of support in school for those with additional needs but no EHCP
  • parents and young person visit post - 16 options
  • if likely to have a change of environment post -16. For example, move from school to college, consider what might be needed for a smooth transition
  • adult social care referral for transition to be considered. Timeliness for assessment taken into consideration
  • identify key transition points

Who is responsible?

  • school/education setting to convene team meeting
  • SEN Provision lead
  • transition team

Friends, relationships and my community

The following things should be happening:

  • begin to discuss what is important to your young person about friends and their social life in the future and how this might be achieved
  • how often is your young person going out with friends?
  • would they like to go out more? Is more advice or support needed?
  • is your family accessing any information, is there support you need?

Who is responsible?

  • parent and carers
  • school
  • social care if involved

Developing independence

The following things should be happening:

  • ensure your young person has the opportunity to practise travelling as independently as possible, thinking about what they may need for the future. For example, travel to college, in the community and for employment
  • ask for information about potential housing options

Who is responsible?

  • school or education setting
  • lead professional

Good health

The following things should be happening:

  • ensure health professionals such as the Paediatrician copies or shares relevant information and clinic letters to appropriate teams
  • think about Personal health budgets, if eligible
  • annual health check via GP if eligible
  • identify any formal carers responsibility
  • would you benefit from a carer’s assessment?
  • My Care Passport should be completed if possible

Who is responsible?

  • school nurse or health transition lead paediatrician 
  • children’s Community Nurses (CCNs) 
  • clinical Nurse Specialist’s (CNSs) and Therapists
  • GP

Preparing for and finding employment

The following things should be happening:

  • start discussions with the school about ‘what your young person can offer’, ‘what they like doing’, ‘what support do they need’
  • identify who will support your young person to access work experience or work
  • agree how your young person will access information about supported employment or apprenticeships
  • update the Career Plan or vocational profile
  • identify post -16 providers who can help them achieve their aims, goals and outcomes for the future
  • agree actions required to work toward agreed outcomes, plan visits and taster sessions
  • think ahead about any health factors that may affect their College or University, or employment choices

Who is responsible?

  • school/education setting

Age 15 to 16 (year 11)

Things to consider

A young person may leave school after year 11, but by law they should participate in learning until the age of 18. Learning can include:

  • full-time education (For example, at a school or college)
  • an apprenticeship or traineeship
  • part time education or training combined with one of the following:
  • employment or
  • self-employment for 20 hours or more per week
  • volunteering for 20 hours or more per week

The Mental Capacity Act (MCA) applies from age 16 and means that your young person has the right to make their own decisions unless they are assessed as lacking the capacity to do so.

Consider how the annual review can be joined up with any other reviews the young person has, for example Child in Need (CIN) or Child in Care Review or Personal Education Plan.

If your young person does not have an EHCP and you feel they need additional support, please speak to the school in the first instance, to identify needs and possible support strategies. Schools are expected to and have a duty to identify special educational needs and provide support to meet these.


EHCP and needs assessment process

The following things should be happening.

  • EHCP reviewed and key transition points identified
  • review of support in school for those with additional needs but no EHCP
  • your young person decides their preferred post 16 option
  • health and social care may continue transition planning. If moving on from school, the post 16 placement confirmed by 31 March if an EHCP is in place
  • if a request is for a specialist college placement, this will be decided by a multi-agency panel
  • plan move if going to a new setting: how can your young person prepare for this, what induction will they receive?
  • consider whether all appropriate professionals and organisations are involved
  • does your young person want the support of an advocate?
  • consider need to include and inform GP
  • future education: Think about practicality of distance, travel routes, timings of the course as well as motivation, interest and personal development
  • identify any informal carers involved (including young carers) and undertake a Carers Assessment if required
  • identify and involve key adult professionals required for when your young person becomes 18 years and invite to annual review meeting
  • identify any adaptation or equipment used that requires review or maintenance post 18 years and confirm arrangements for maintenance contracts
  • identify any adaptations required and how these will be provided during any transition to new services or settings

Who is responsible?

  • school/education setting to convene and invite members of multi disciplinary team
  • SEN provision lead

Friends, relationships and my community

The following things should be happening:

  • think about how to maintain friendships after school ends
  • support your young person to plan how they will keep in touch with others
  • can/does your young person access their local community services such as sports centres, libraries, cinemas, restaurants, shopping centres?
  • is your family accessing any information or support you may need?
  • do you know if your young person is eligible for short breaks after the age of 18 and what is available?

Who is responsible?

  • health lead
  • lead professional

Developing independence

The following things should be happening:

  • think about the link between career plans and housing options to ensure that your young person thinks about where they might live, when thinking about jobs
  • ensure your young person is travelling independently where possible
  • where your young person is unable to travel independently, consider support that might be necessary to develop independent travel skills and assistance that might be available
  • think about time spent away from home and how this would help to develop independence
  • do you have information you need on the range of housing options available?
  • the first benefits check should take place when your young person is 15.5 years
  • this is critical to ensure that your family income is maximised
  • children’s services may need to apply for a National Insurance number if the young person is in the care of the local authority
  • money matters change when your young person is 16, please see the money matters page

Who is responsible?

  • school or education setting
  • lead professional

Good health

The following things should be happening:

  • encourage your young person to state their own views at medical appointments; they will be of a legal age to consent to medical treatment from age 16
  • you will be informed about when your young person will be discharged from each of the children’s services they use now and who will take over responsibility from the adults’ services
  • do you know how your young person’s future health needs will be met?
  • annual health check via GP if your young person is eligible
  • if your young person may be eligible for Continuing Healthcare (CHC) funding as an adult we will complete and submit a continuing healthcare checklist and nursing assessment (just prior to age 17)
  • if the continuing healthcare checklist is positive we will complete the decision support tool with you; this is a full assessment for CHC funding

Note: If your young person is educated out of area, we will start thinking about how they will access health services on their return.

Who is responsible?

  • school nurse GP health lead professional paediatricians
  • children’s community nurses (CCNs) 
  • clinical nurse specialists (CNSs)
  • therapists and dietitians

Preparing for and finding employment

The following things should be happening:

  • review work experience undertaken and/or plan further opportunities
  • continue discussions about future plans and explore a range of options
  • where your young person is unable to travel independently, consider assistance available
  • explore how any personal budget or direct payment might be used to support employment aspirations
  • explore any other funding that might be available to support your young person to find and secure employment (or meaningful activity)

Who is responsible?

  • school or education setting
  • lead professional

Age 16 to 17 (year 12)

EHCP and needs assessment process

Reminder: Mental Capacity Act (MCA)

The Mental Capacity Act (MCA) applies from age 16 and means that your young person has the right to make their own decisions unless they are assessed as lacking the capacity to do so. Ensure that your young person has support to make informed decisions. See Appendix 1 for more information on this.

The following things should be happening:

  • it may save time and effort if your young person’s annual review of their EHCP is combined with other review and assessment meetings; your Lead Worker will help you to consider how this might be done
  • this will enable you to plan post 19 options in a joined-up way
  • information for assessment of needs and outcomes. Consider any specialist adult assessment required before 18 years of age
  • identify any equipment used that requires review or maintenance
  • provide information about personal budgets including personal health budgets
  • gather information about current care packages
  • consider appropriate funding streams
  • consider community services
  • referral to brokerage
  • identify informal carers involved (including young carers) – undertake or review the carers assessment as appropriate and consider transitional arrangements
  • identify key transition points

Who is responsible?

  • school or education setting
  • SEN Provision lead
  • multi disciplinary team
  • adult social care

Friends, relationships and my community

The following things should be happening:

  • talk with your young person about their social group; how will they stay in touch with friends and make arrangements for socialising?
  • is any additional advice or support required to develop or maintain friendships and their social life?

Is your young person able to:

  • access local services?
  • travel/get out when they choose, either on their own, with friends or with support?
  • use a telephone, mobile, email, social networking, public transport, learn to drive?

if not, how can they be helped to increase their opportunities?

Who is responsible?

  • parent and carer
  • young person
  • social care
  • lead professional

Developing independence

The following things should be happening:

  • do you and your young person have information on the range of housing options available?
  • do you have access to benefits advice if this would be helpful?
  • would a personal budget help your young person to have more person centred support?
  • where your young person is unable to travel independently, what support might be necessary to develop independent travel opportunities?
  • for those aged 16 to 19 a bursary fund for vulnerable adults, or discretionary money through college to help with education related costs may be available

Who is responsible?

  • school or education setting
  • lead professional
  • citizen advice bureau
  • housing advice service

Good health

The following things should be happening:

  • ensure you and your young person are in control of financial support for keeping healthy
  • relevant professionals work together and share information appropriately and with consent
  • health professionals understand the best way to communicate with your young person
  • annual health check via GP if eligible
  • if educated out of area plans to be made for accessing Dorset health services on their return
  • identify post 18 support available and pathways for accessing this. Continuing Healthcare (CHC) Checklist to be completed by 17 and a half years of age if required
  • Mental Capacity Act (2005) to be considered in relation to the specific decisions that are part of the preparing for adulthood health pathway
  • complete a My Care Passport
  • request visits to adult hospital wards and services to gain familiarity if required
  • young people with capacity should be given the opportunity to see their doctor on their own, and to consent to their treatment
  • consider whether your young person would like someone else to accompany them to appointments

Who is responsible?

  • GP
  • transition lead
  • social care
  • school nurse
  • paediatricians
  • children’s community nurses (CCNs)
  • clinical nurse specialists (CNSs)
  • therapists and dietitians
  • continuing healthcare lead

Preparing for and finding employment

The following things should be happening:

  • ensure career plan or vocational profile continues to be updated
  • plan with your young person so they can spend progressively more time in work related learning or employment that interests them
  • where your young person is unable to travel independently, consider assistance available
  • continue to explore all possible options including supported employment, apprenticeships, work-based learning, work related learning at college, paid work, self-employment, higher education
  • your young person may be eligible to apply for Employment and Support Allowance (ESA) if you are no longer receiving Child Benefit

Who is responsible?

  • post 16 education setting
  • parent and carer

Age 17 to 18 (year 13)

EHCP and needs assessment process

Reminder: Mental Capacity Act (MCA)

Mental Capacity Act: Ensure your young person has support to make informed decisions. See Appendix 1 for more information on this.

The following things should be happening:

  • person centred Annual Review meeting to identify actions or support to enable preparation for adulthood
  • consider the content of any future study programme and how it will enable your young person’s outcomes to be achieved
  • consider professionals to be involved in meetings. Agree Lead Professional – who will monitor delivery of actions agreed
  • adult social care: confirm eligibility
  • finalise assessment of needs and outcomes and advise of Indicative Budget
  • create care and support plan with your young person
  • identify key transition points

Who is responsible?

  • education setting to invite or host multi disciplinary team
  • adult social care
  • lead professional
  • continuing health care or health
  • transition lead
  • children’s social care if involved

Friends, relationships and my community

The following things should be happening:

  • talk with your young person about their social group; how will they stay in touch with friends and make arrangements for socialising?
  • is any additional advice or support required to develop or maintain friendships or a social life?
  • is your young person able to: access local services? travel or get out when they choose, either on their own, with friends or with support?
  • use a telephone, mobile, email, social networking, public transport, learn to drive etc?
  • if not, how can they be helped to increase their opportunities?

Who is responsible?

  • education setting or college 
  • parents and carers

Developing independence

The following things should be happening:

  • do you and your young person have information on the range of housing options available?
  • could a personal budget make your young person’s support more person-centred?
  • where your young person is unable to travel independently, consider support that might be necessary to develop independent travel skills and/ or assistance that might be available
  • second benefits check at age 17 and a half years of age to be arranged if leaving education at 18 or circumstances have changed
  • this is critical to ensure that the young person's income is maximised
  • if your young person lacks capacity to manage their finances, how will this happen? (For example, deputyship or appointeeship)

Who is responsible?

  • lead professional
  • adult social care
  • parents and carers

Good health

The following things should be happening:

  • continuing healthcare (Adults). If triggered by a positive checklist, decision support tool to be completed
  • confirm eligibility for Continuing Healthcare if applicable
  • agree and initiate handover arrangements agreed for specialist adult health services
  • support handover of therapy services with your young person, where criteria are met and service identified
  • liaise with GP and community nursing teams
  • GP's should always be informed of any updates and changes

Who is responsible?

  • social care
  • GP
  • NHS Dorset paediatricians
  • children’s community nurses (CCNs) 
  • Clinical Nurse Specialists (CNSs)
  • Therapists and Dietitians
  • Adult Consultants or Specialists
  • Adult Clinical Nurse Specialists (CNSs)
  • Adult Therapists or Dietitians

Preparing for and finding employment

The following things should be happening:

  • ensure career plan or vocational profile continues to be updated
  • help your young person to spend more time in work-related learning or employment if this is their wish
  • where your young person is unable to travel independently, consider assistance available
  • continue to explore all possible options including supported employment, apprenticeships, work-based learning, work-related learning at college, paid work, self-employment, higher education
  • your young person may be eligible to apply for Employment and Support Allowance (ESA) if you are no longer receiving Child Benefit

Who is responsible?

  • post 16 education setting
  • parents and carers

Age 18 to 19 (year 14)

EHCP and needs assessment process

The following things should be happening:

  • there should be a person centred annual review meeting to identify actions and support that will help your young person and their family as they move into adulthood
  • are all relevant professionals and organisations involved?
  • what follow-up review or support is required from Children’s Services?
  • the review should confirm the name of the new Lead Professional, who will be from Adults Services
  • it is their role to ensure that the agreed actions and support happen
  • agree how information about your young person will be shared between agencies, how they will work together to undertake further assessments and to offer support
  • identify key transition points ahead, consider actions for transitions
  • consider Adult social care. Implement agreed support plan and funding arrangements before 18

Who is responsible?

  • education provider to host multi disciplinary meeting
  • adult social care
  • lead professional
  • Continuing Health Care
  • health
  • transition lead

Friends, relationships and my community

The following things should be happening:

  • talk with your young person about their social group; how will they stay in touch with friends and make arrangements for socialising?
  • is any additional advice or support required to develop or maintain friendships or their social life?

Is your young person able to:

  • access local services?
  • travel or get out when they choose, either on their own, with friends or with support?
  • use a telephone, mobile, email, social networking, public transport, learn to drive etc?
  • if not, how can they be helped to increase their opportunities?
  • plan the young person’s transition to adult respite services if eligible

Who is responsible?

  • college or education setting 
  • parents and carers

Developing independence

The following things should be happening:

  • do you and your young person have information on the range of housing options available?
  • could a Personal Budget help your young person to have more person centred support?
  • where your young person is unable to travel independently, what support is needed to develop independent travel opportunities?
  • if your young person lacks capacity to manage their money, are other arrangements in place?
  • benefits check required just prior to 19 years of age (if your young person did not leave education at 18 years of age)
  • this is critical to ensure that the young person's income is maximised

Who is responsible?

  • lead professional
  • adult social care
  • parents and carers

Good health

The following things should be happening:

  • the child and adult health Lead Professionals, and all other relevant health professionals, attend your young person’s annual review meeting
  • share reports and information with other health professionals with consent from your young adult
  • complete Hospital Care Passport. Complete Communication Passport

Note. If young adult is educated out of area, think about accessing Dorset health services on their return

Who is responsible?

  • health transition lead
  • GP 
  • paediatricians 
  • Children’s Community Nurses (CCNs) 
  • Clinical Nurse Specialists (CNSs)
  • therapists and dietitians
  • social care
  • school nurse

Preparing for and finding employment

The following things should be happening:

  • ensure career plan or vocational profile continues to be updated
  • help your young adult to spend more time in work related learning or employment if this is their wish
  • where your young adult is unable to travel independently, consider assistance available 
  • continue to explore all possible options including supported employment, apprenticeships, work-based learning, work-related learning at college, paid work, self-employment, higher education
  • your young person may be eligible to apply for Employment and Support Allowance (ESA) if you are no longer receiving Child Benefit

Who is responsible?

  • post 16 education setting
  • parents and carer

Age 19 to 25

EHCP and needs assessment process

The following things should be happening:

  • your young adult’s EHCP will cease where they move on to higher education, paid work, volunteering or social care services
  • if your young adult still has an EHCP, the annual review should be led by the college tutor, or training provider as appropriate
  • job applications, work experience, or further study are planned as required by your young adult
  • where your young adult has an EHCP and leaves education but then decides they wish to return (and are still under 25 years of age), the local authority will consider whether the previous EHCP should be revived and reviewed
  • it is possible however that your young adult will have to go through the full EHCP needs assessment
  • be aware of further transition points

Who is responsible?

  • education setting to host multi disciplinary meeting

Friends, relationships and my community

The following things should be happening:

  • help your young person to remain in touch with friends and make new arrangements for socialising
  • check if there is any additional advice or support required to develop or maintain friendships
  • continue to review that your young adult is developing skills to access local services, focusing on travel and communication
  • ensure your family has information about support they can access including Carer’s Assessment to review needs

Who is responsible?

  • education setting if still attending
  • parent and carer

Developing independence

The following things should be happening.

  • do you and your young person have information on the range of housing options available?
  • could a Personal Budget help your young adult to have more person-centred support?
  • where your young adult is unable to travel independently, what support is needed to develop independent travel opportunities?
  • ensure your young adult and family have received benefits advice

Who is responsible?

  • adult social care

Good health

The following things should be happening:

  • do you or your young adult have control of any financial support they receive for keeping healthy?
  • annual health check via GP if eligible. Does your young person know how to keep healthy?
  • ensure relevant professionals are in contact with each other and share information (with relevant consents) and understand how best to communicate with your young adult

Note. If your young adult is educated out of area, think about accessing Dorset health services on their return.

Who is responsible?

  • health transition lead
  • GP
  • adult consultants or specialists
  • adult Clinical Nurse Specialists (CNSs)
  • adult learning disability team 
  • dietitians

Preparing for and finding employment

The following things should be happening:

  • ensure career plan or vocational profile continues to be updated
  • help your young adult to spend more time in work related learning or employment if this is their wish
  • where your young adult is unable to travel independently, consider assistance available
  • continue to explore all possible options including supported employment, apprenticeships, work-based learning, work-related learning at college, paid work, self employment, higher education
  • consider support required for your young adult to access services via Job Centre Plus, for example, Disability Employment Advisor and Access to Work
  • your young adult may be eligible to apply for Employment and Support Allowance (ESA) if you are no longer receiving Child Benefit

Who is responsible?

  • college or education setting
  • career support advisor
  • access to work

Beyond the age of 19 years

The following things should be happening:

  • families, young adults and involved professionals will agree whether special educational provision provided through an EHCP will be necessary to enable your young adult to progress towards agreed outcomes
  • young adults with EHC plans may take longer to achieve their outcomes, this does not mean there is automatic entitlement to continued support at age 19. It is the exception for an EHCP to be needed up until 25
  • consider whether remaining in education and following a curriculum is needed
  • does your young adult want to remain in education and for what purpose?
  • young adults who no longer need to remain in formal learning will not require special educational provision to be made for them through an EHCP
  • person-centred Annual Review meeting to identify actions and support to enable preparation for adulthood

The Annual Review should:

  • confirm the Lead Professional who will monitor delivery of actions agreed
  • review aims and outcomes, review existing action plans, agree further actions
  • identify ongoing professionals involved and agree information
  • sharing protocols and joint assessments or support plans, regularity of review
  • identify other key transition points in the young person’s journey. Consider actions required to make these transitions as smooth as possible
  • consider whether Preparing for Adulthood pathway still applicable
  • ensure your young adult receives clear information about support they can receive, including information about seeking employment, continuing study in adult or higher education, and support for health and social care when their plan ceases
  • develop exit plan for when EHCP ceases
  • for those who EHCP continues, consider whether all appropriate professionals and organisations are involved (including Advocate)

Part 2. Planning for the future

Helping your young person to start thinking about their future should be an exciting process, but it can also seem confusing and worrying. Whatever you and your young person are feeling, the most important thing to remember is that your young person should be at the centre of all discussions; person centred planning!

It might be helpful to involve the people who know your young person well, such as teachers, family, friends, leisure activity leaders, etc. You can also ask for an interview to be arranged with the school’s careers adviser.

These are some questions you might like to discuss with your young person:

  • what do they enjoy? – either at school or at home
  • do they have any hobbies?
  • what sort of person are they? For example, do they like being with people? Do they like working with animals? Do they prefer working outside or indoors? Are they creative or musical? Do they show an enterprising attitude? Do they like working with their hands? Do they like order, detail, or numbers?
  • are they outgoing, or do they like to keep to themselves?
  • how do they like to learn?
  • what is important to them for the future? (For example, staying near home or being independent)
  • what kind of environment suits them – busy and noisy, or quiet?
  • have they any ideas about what sort of work they would like to do?

Transition reviews should be person centred

If your young person has an EHCP or receives Special Educational Needs (SEN) support, their school may use a process called ‘person centred planning’. Using a person centred planning approach will ensure that their individual views are considered and listened to, and that their plan is based on what they like to do, their strengths and what is important to them, now and in the future.

A moving to adulthood plan is a person centred document to be used to record your young person’s wishes, values, family situations, social circumstances, and lifestyle as they move into adulthood. There is a focus on supporting independent living, maintaining good health in adult life, and participation in society.

A good moving into adulthood plan will reflect the needs of your young person and help local services to plan in an appropriate way. It aims to give them choice and control over their goals and aspirations, help them access opportunities and provide the support they will need in order to achieve their hopes and dreams for the future.

Overall, the moving into adulthood plan is about working together over time to ensure your young person’s individual needs are met. This results in a transition plan that better reflects the needs of your young person and supports them to move from childhood to adulthood.

Please remember that if you feel your transition reviews are not person centred, you have the right to speak up and ensure your child/young person is at the centre of all discussions. Dorset Special Educational Needs and Disability Information Advice and Support Service (SENDIASS) can help you and your young person with this.

Think ahead

SENDIASS provides impartial, confidential information, advice and support to young people with SEND aged 0 to 25 and their parents, about education, health and social care.

dorset.sendiass@family-action.org.uk

Planning for adult life

Transition means change and it is important to be aware of this. All young people need to make plans for their future. If your young person is on SEN Support their school or current setting will provide support with transition. Speak to your SENCO if you feel your young person will need a longer period to prepare. If your young person has an EHCP, their planning for the future should start no later than age 13 (year 9), as part of the annual review of the plan.

This allows sufficient time to start thinking and planning for their future options. The needs of the young person are central to the whole process. The review meeting is crucial, and you have the right to invite anyone you feel is important in shaping your young person’s life. This can range from:

  • teachers
  • close friends
  • therapists
  • family members
  • social workers
  • health professionals or healthcare workers

Your school will support you and will organise the meetings on your behalf.

  • schools are there to inform you about the options available and support the young person through the transition process. This can include providing material in a suitable format such as Braille, large print etc.
  • if a professional, such as a health care worker or teacher, cannot attend a review meeting, they should provide you with a written report
  • from year 9 onwards, make sure you are involved with completing a moving into adulthood plan which should include discussions with your young person’s school and their post 16 options; visit further education (FE) departments, colleges and training providers
  • the transition review will result in a moving into adulthood plan with clear actions, which will be reviewed annually

Top tip

Search the website below to find a wide range of useful guides, toolkits and case studies to support young people with SEND achieve:

  • paid employment
  • independent living and housing options
  • good health
  • friendships
  • relationships
  • community inclusion

as they move into adulthood.

NDTi: Preparing for Adulthood Resources

Preparing for adulthood and employment pathway

To ensure you get the most out of the moving into adulthood plan and transition planning, it is important to help your young person to think about what they like and their hopes for the future. Some young people will need more support to do this, therefore it may be helpful to ask others who know them well what they think.

  • at the year 11 EHCP review meeting, decisions about post 16 options will need to be made
  • your young person will need to think about what they would like to do when they leave school and what support they will need to help them prepare for the future
  • some young people may benefit from extra time in school after year 11
  • applications for school or college should be made in the autumn term of year 11 (at age 15)
  • young people who are looking for an apprenticeship or training should start their search in the spring term of year 11
  • it is advisable to consider all options and to have a backup plan

Course levels and definitions

Colleges and post 16 providers have introduced new codes for their courses to help clarify who a course would be suitable for. Below you can find a description and a code for each level:

L4 Level 4 higher education degree and postgraduate programmes

L3 Level 3 working at A Level and BTEC Diploma standard

L2 Level 2 working at Higher level GCSE Standard – grades 4/5 - 9

L1 Level 1 working at Foundation level GCSE – grades 1 – 3/4

E3 Entry 3 learner has a basic level of independence skills, functional English and Maths skills

E2 Entry 2 developing basic independence skills, functional English and Maths skills

E1 Entry 1 help with developing some basic independence including English and Maths

PE Pre Entry focus on learner’s experiences and awareness of basic independence skills including English and Maths skills.

Support for young people is available on all levels according to their needs and can be discussed with you when starting the transition process.

The following terms may also be used to describe a course:

  • education skills (English, Maths, IT etc.)
  • work skills (understanding skills needed for work such as communication, CV writing, punctuality, team working)
  • job training (learning by doing, things specific to a particular job role such a using a database, how to do certain tasks)
  • life skills (travelling, cooking, budgeting etc.)

 

Entry level

Foundation courses, transition programmes and supported internships

Level 1

Level 1 courses, traineeships, transition programmes supported internships

Level 2

Level 2 courses, apprenticeships, traineeships, supported internships

Level 3

Level 3 Courses, AS/A Level courses, BTEC National Tech level, and other vocational apprenticeships

Possible routes from age 16 and over

  • staying in a school setting at a sixth form
  • going to a local Further Education (FE)  college, sixth form college, or independent training provider
  • choosing to study academic and applied subjects
  • choosing to study practical or vocational subjects
  • choosing to prepare for work and joining a supported internship, pre apprenticeship programme or traineeship
  • choosing a bespoke or specialist programme apprenticeship (typically intermediate or advanced level) or employment with training

Did you know?

Most colleges offer a 3 day programme, some offer 5 days. If your young person attends a 3 day programme, try and use the other 2 days to explore lots of different activities, do taster sessions etc, to find out what your young person enjoys or what they are good at. This will help prepare them for life after college and with choosing further pathways, as well as getting to know other young people.

The following sections give a brief description for each of the listed routes.

Staying in a school setting – typically a sixth form

Some schools have sixth forms where young people can continue their learning until year 14 when they turn 19. You should start thinking about this option when your young person is still at school. They don’t have to stay at the same school but can apply to move to another school sixth form. You and your young person’s decision should be based on what courses are on offer and whether the courses will enable them to progress further towards their planned goal, whether this is work, training, or further or higher education.

Going to a local FE college, 6th form college, independent training provider

These post 16 providers typically offer a wide range of vocational and academic courses to meet the needs of students at all levels. They all provide support for students with additional needs. You can start talking about your young person’s goals and needs as early as year 10 with your preferred post 16 provider. They will be able to confirm what additional support is already available and can discuss your young person’s needs individually.

Many students will attend mainstream courses, and some may require extra support. Mainstream courses will be offered at Level 1 through to Level 3 and beyond, in a range of subjects. Specialist courses are often called ‘Foundation Courses’ and are specifically designed for young people with SEND. Courses will aim to increase independence and confidence and develop practical and work-related skills. Some courses will focus on developing independent living skills.

Whatever your young person’s goal is, there should be a learning pathway for them. Other courses will be focused on developing skills that will lead to employment, often focusing on a specific area of interest that the student has shown an interest in.

Choosing to prepare for work

If your young person’s goal is to move into work they could join a supported internship, pre apprenticeship programme, or traineeship. Supported internships are specifically for young people aged 16 to 24 who have an EHCP. They are classified as ‘study programmes’ and are tailored to meet the needs of the young person and employer.

The post 16 setting will:

  • work with you to source an employer and a job role that is right for your young person
  • create a unique study programme so that your young person can study a qualification and gain high quality on the job training whilst at work
  • provide a job coach who will come to work with your young person to start with, and then reduce their support as your young person becomes more confident in their role

Your young person may need to attend college one day a week and go to work for 2 to 3 days a week. Supported internships are a study programme, so your young person won’t get paid, unlike an apprenticeship, which is a job.

Traineeships and pre-apprenticeships are very similar. They are study programmes that include education and on the job training. These options are good for people who are looking to develop basic employability skills to help them on their journey to paid employment.

Supported internship

Supported internship programmes are available for those aged 16 to 24 who have additional needs and hold an EHCP, and who wish to take their next steps towards employment. They are personalised study programmes, designed to better enable young people with learning difficulties and/or disabilities to achieve sustainable paid employment, by equipping them with the skills they require for the workplace.

They are available through several post 16 FE and training providers and normally consist of a minimum of two days a week in a work placement and one day a week at college. Students will have access to a job coach who will support them in the workplace and work alongside the tutor whilst students are in college. Supported internships bridge the gap between education and employment and help to improve independence and self esteem.

Apprenticeships

'Earn as you learn’ – apprenticeships are an excellent way to combine on the job learning with a working environment. They allow a young person to grow and thrive in the workplace by giving them all the skills that an employer would want. Apprentices will receive on and off the job training, and will work towards apprenticeship standards for their relevant job role. Apprenticeships are offered at intermediate level (Level 2), advanced level (Level 3), higher (Level 4) and degree level.

An apprenticeship is a job not a course, so your young person will need to pass a job interview and be appointed by the employer to be successful. The on the job training is provided by a manager or mentor. The off the job training will be provided by a training organisation who will visit your young person in the workplace to check their learning, and they may also need to attend college or training provider premises once a week. Your young person earns a salary as an apprentice, and is classed as employed rather than as a student.

Personalised post 16 programmes

Even with effective support, some young people with the most complex needs may find it difficult to progress straight into a post 16 learning environment. For these young people a personalised programme may be available as a stepping stone to post-16 education. Eligible students will have an EHCP that clearly evidences their need for a highly individualised education and social development programme due to the level of complexity of their needs and their previous inability to access learning in a group environment.

The personalised programme will only be offered for a limited period of time, usually no more than a year, with the twin aims of supporting the young person to move into group learning and to make educational progress. The need for such a programme will be identified during the planning for adulthood discussions that take place as part of the annual review of a pupil’s EHCP and will need to be relevant to the pupil’s long-term aims for adulthood and support their personal development so they can progress into a group learning environment.

From the age of 18 and over

Further education at a local FE college or independent training provider

With or without an EHCP it should be possible for all young adults to access a learning offer. At 19 all young adults, with or without SEND, have access to education and training fully or part-funded through the adult education budget. Your young adult can access courses that develop their basic skills and prepare them for work.

Depending on your personal circumstances, you may need to make a financial contribution towards your young person’s course fees once they are over the age of 19. These courses tend to be part time and short; they are available through independent training providers and colleges. If your young adult has an EHCP this means it has been recognised that your young adult needs to stay in learning longer and would typically have access to longer, full time courses within an FE college.

Apprenticeships or employment with training

If your young adult feels confident enough to start work, it would be sensible to look for a job that has training or job coaching to help them adjust to the world of work. In addition, you can also contact the disability employment advisers at Jobcentre Plus to find out whether your young person can receive any other employment related support.

Supported employment

This is a successful model for supporting people with significant disabilities to secure and retain real employment. There are eligibility criteria which, if met, mean the service is likely to be free. Even if your young adult is not eligible for free support, they can use their Personal Budget or EHCP to pay for it, or they may be eligible for an Access to Work grant

Higher education (HE)

For young adults with a level 3 qualification (For example, A-levels, BTEC L3 etc.) and the desire and capability to study further, there is a wide range of courses to study at higher education institutions, either locally or further afield. Students with SEND can access a range of financial and personal support to help them study. Make sure you let the education provider know if your young person needs any adjustments to make the course accessible to them. The earlier they know, the sooner they can plan changes or support. You can discuss the particular adjustments needed and how to arrange them with the officer responsible for supporting disabled students at the place where your young person plans to study. Search for the contact details of disability advisers at colleges and universities throughout the UK at Disability Officer Search – The DSA Hub.

Higher and degree apprenticeships

Apprenticeships are available for people of all ages up to level 6 and 7 (equivalent to a full Bachelor’s or Master’s degree). This pathway provides substantial training and the development of transferrable skills, as well as a qualification. Individuals will spend most of the week at work, learning from colleagues across all levels of the business and typically working closely with a senior member of staff who will review progress and have a coaching role.

Top tip

It is important to keep all certificates and documents for your young adult, so they can take copies with them to interviews as additional information to demonstrate their achievements.

Work experience and volunteering

Most young adults with learning difficulties or disabilities are capable of working and want to work. Employment helps people to be independent and be part of the life of their community.

For young people with SEND, getting work experience and developing employability skills is very important. Work experience can also help an employer to recognise the skills that the young person can bring to their organisation.

Meeting employers

Schools and colleges have a duty to ensure all young people have opportunities to meet with employers during their time in education, a role which is inspected by Ofsted. This could be an employer coming to the school or college to talk to students about their job, help with a project, give students opportunities for a mock interview or mentor a student. Many schools hold careers fairs where students get the chance to talk to lots of employers in one day.

Work experience

Your young adult should also be offered the chance to do some work experience during their time in education. This could be for a fixed period of time, such as one full week or spread over a number of weeks during a term. Schools and colleges have a responsibility to help students prepare for these kinds of experiences.

Volunteering

Volunteering can also help students develop skills that will assist them in future employment. There are formal programmes such as the Duke of Edinburgh Award or National Citizenship Service that schools and colleges will be involved in. You could also help your young adult to do some voluntary work outside school or college in an area that they are interested in. However, your young adult may need to be over 16 to take part in external voluntary work.

Duke of Edinburgh Award

National Citizen Service

Community Credit Scheme

Developing independence pathway

Housing and accommodation

For your young person making decisions about where they may want to live is an important part of growing up and becoming an adult. Thinking about this early will help them to understand their choices and what is important to them, even if sometimes the options might be limited. It’s also important to remember that they can change their mind. What might be right for them now doesn’t have to be a life long decision. Staying at home with parents and making a plan to move out in the future to live with friends or on their own is what a lot of young adults do.

Where does your young person want to live?

  • where do they want to live in the future?
  • do they want to live near to family or friends?
  • do they want to live close to school or work and things to do?

What does your young person want to do in the future?

  • what do they like about where you live now?
  • what would they change?

What is important to your young person?

  • do they like to get out and about in towns or do they like getting into the countryside or the coast?
  • do they like being able to walk to the shops?
  • do they like to spend time with friends or family?
  • what does your person need close by?

Who does your young person want to live with?

  • do they want to live with other people, or on their own?
  • do they live with their parents, and do they want to continue to?
  • do they want to move in with friends, or their boyfriend or girlfriend?

Living on their own can give them a lot of control over their life and their home, but people can find it lonely. On the other hand, living with other people in a shared house can be a much more fun, social experience and can give the chance to share costs and activities, but can also mean they have to compromise more on how they want to live. Living in their own flat that is part of a bigger block of flats where friends could be neighbours might be something that gives your young person a bit of both options.

What will your young person need?

What people want and need from their home is different for everyone. What is important to them?

  • do they need extra space because of equipment of technology that helps them be independent?
  • do they need things to help them move around? This could be a wheelchair, walkers or handrails?
  • do they need a garden?
  • do they need space for carers to stay or live with them?
  • are they sensitive to noise made by neighbours?

Useful links for housing advice and support

The following organisations and resources can help to answer any questions about the types of housing that are available, how they are paid for, and any benefits that may be available to help your young person.

Visit Dorset Citizens Advice

The Dorset Council website can help with housing in a number of ways - please search for the following pages:

Making a plan

Once you or your young person has started to think about all these things, it can be helpful to start making a plan, or writing down the things you still need to know before you can make a plan. It is important to share your plans too, particularly if you need help from other people or from the council to make them happen. A good place to start is your young person’s social worker or allocated key worker, they can make sure that what you want and what you need is recorded.

Travel and transport

Independent travel training

Travel training is designed to help people get more from life by giving them the confidence to travel independently. Travel training can help overcome barriers to:

  • employment
  • social inclusion
  • independent journeys to school or college

This section has a particular focus on preparing students for travel to college or sixth form, but for many students independent travel could be a reality long before this. Travel Training teaches young people and adults with special educational needs or disabilities a safe way of travelling independently that will build self esteem and confidence. Being able to travel on public transport is a key life skill which lets young people and adults make choices about how they live, go about their daily life and fulfil their potential.

Even if you are unsure if travel training is right for you or your young person it is best to submit a referral and a travel trainer will arrange a home visit to talk through the process and assess suitability. Please note that Independent Travel Training is currently only available in the Portland, Weymouth and Dorchester areas.

You can find out more about Independent Travel Training – a step towards independence by searching SEND Travel Team at Dorset Council If your young person’s circumstances change, they can attend the travel training again to help them prepare for a new situation.

For pre 16 Students:

Dorset Council provides free transport for eligible children or young people of compulsory school age (from 5 to 16) to qualifying schools. However, some young people may be entitled to free travel regardless of how far they live from the school if they have an EHCP and cannot walk because of their need, a disability or a mobility problem.

For post 16 students:

The post 16 travel policy applies, but a student aged 16 to 25 who has an EHCP or statement of Special Educational Needs (SEN) and cannot walk because of their needs, disability or mobility problem may be entitled to transport irrespective of the minimum distance. All students of sixth form age with SEND will be charged a financial contribution towards the cost of their transport. You must apply for transport every year by 31 May.

Find out more

You can find out more on the Dorset Council Local Offer and Dorset Council School transport

For post 19 students:

Dorset Council provides free travel assistance to a young person aged between 19 and 25 if it is necessary for them to attend an educational institution or training under Section 508F of the Education Act 1996. You must reapply for free travel assistance every year, by 31 May.

Disabled person’s travel

Apply ofr a disabled person’s bus pass

The National Rail Disabled Persons Railcard is for people with a disability that makes travelling by train difficult

Motability Driving Lessons - driving lessons with a disability

Social care matters

If your young person has a disability and/or additional needs, they may already have a social worker before they have reached the age of 16. If this is the case, then their social worker should be involved in helping with planning during year 11.

  • at the age of 16 years, a young person with SEND who is already receiving support from Children’s Services may be identified for a future referral to Adult Social Care Services if it is likely that they will have support needs
  • at the age of 17 and a half years (completed by the time they are 18 years), your young person should have an eligibility assessment (if they meet the national eligibility criteria) which will identify their needs and the support that they may require moving into adulthood
  • a Personal Budget summary which will provide an indication of the level of funding that may be available to them, and a care and support plan will be completed by your young person with you or their social worker
  • if your young person has been in receipt of a Personal Budget they will not automatically receive a service from Adult Social Care after their 18th birthday. This will be dependent on an assessment in line with the Care Act 2014
  • a request for this assessment can be made via Adult Services Moving from Children’s Services to Adult Social Care at Dorset Council
  • your young person can expect a supported assessment period which will assist the eligibility assessment process 
  • after your young person has been assessed as eligible the most appropriate adult team will make contact to begin planning support that will meet their needs
  • if, following the Eligibility Criteria Assessment, it becomes apparent that your young person does not need ongoing support from Adult Social Care, you will be signposted to the SEND Local Offer to explore options available within other sectors including the voluntary sector
  • social workers are there to help and advise young people and their parents or carers. They help them to access services, that perhaps may not be accessible otherwise

Money and funding matters

At 16, young people can either claim benefits in their own right, or you will be able to claim on their behalf. It is important that you get free independent advice around what benefits can be claimed and how they could affect the payments you already receive before you decide which is the best option for your young person and your family.

Personal support and self directed support

If your young person is eligible for a service from Adult Social Care they may be offered a personal budget. Personal budgets are designed to help people take control of their own social care budgets and choose the services that suit them best. The amount will be calculated on an individual basis and is available to use to pay for a support worker, a care agency or individual activities that meet the agreed outcomes in their care plan.

A mental capacity assessment may take place to ensure your young person has the capacity to make safe decisions about their finances. If they lack capacity, there will need to be a best interests decision identifying the most appropriate person to manage their money. A financial assessment will be carried out for any young person over the age of 18 in receipt of services or funding from Adult Social Care to establish whether they must make a financial contribution to the cost of their care package from their own funds.

If you think you may need help, support or information contact Adult Social Care who will offer you information and advice:

Email: adultaccess@dorsetcouncil.gov.uk Tel: 01305 221016

16 to 19 bursary fund

The 16 to 19 bursary fund is money the government has given to local authorities, schools, colleges and other education and training providers (education institutions) to support students who need financial help to stay in education.

There are two types of 16 to 19 bursaries:

  • bursaries for defined vulnerable groups of up to £1,200 a year
  • discretionary bursaries which institutions award to meet individual needs, for example, help with the cost of transport, meals, books and equipment

Find out more

Bursaries

Benefits

Adult Social Care and Community Site

Care Act 2014 – legislation

Personal budgets - Mental Capacity Act 2005 Legislation 

Universal credit

Universal Credit may be available to your young person. If a young person is 18 or over and in training or studying full-time they can make a new Universal Credit claim if any of the following apply:

  • they live with a partner and they’re eligible for Universal Credit
  • they are responsible for a child, either as a single person or as a couple
  • they are disabled and entitled to Disability Living Allowance (DLA) or Personal Independence Payment (PIP) and have limited capability for work
  • they are in further education, are 21 or under and do not have parental support, for example they are estranged from their parents and are not under local authority care

Friends, relationships and my community pathway

Leisure activities

Becoming an adult is a very exciting time, and for most young people it’s the time they gain their independence and enjoy a more active social life. This gives us all a greater sense of wellbeing, helps us become part of the community and enables us to make new friends. Across Dorset there are a range of leisure pursuits available, from music, dance, art and drama to an array of sporting activities. When preparing for your young person’s transition reviews, discuss with them their hobbies, activities and interests; you can then build this into the transition plan.

  • ask: have leisure time, hobbies and interests been included into your young person’s plans for the future?
  • what is important? Leisure time is important and should be part of your young persons pathway
  • find out: speak to your young person's social worker, school and other parents to find out what is available to them
  • transport to and from leisure activities will also need consideration – please see the travel and transport section of this guide

Carers’ discounts

Find out how to get cash back in numerous high street stores as well as discounted rates on energy bills, insurance renewals and lifestyle activities, such as the gym, the cinema, days out, travel and free legal advice.

CEA card (cinemas)

The CEA Card is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA)

The card enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema. The card is also one way for cinemas to make sure they look after their disabled guests. If you require an adjustment to visit a cinema because of your disability, cinema staff should make this for you whether you have a CEA card or not.

People First Dorset - Learning Disability charity

People First Dorset for people with a learning disability was set up in 2004, and is as a user led organisation, supporting people with learning disabilities to develop their self advocacy skills. They achieve this by providing friendship, fun, support groups, forums, easy read and quality checking services. People First Dorset helps people with learning disabilities to make sure they have independence, the ability to choose, and inclusion in community life. It helps its members to develop confidence, communication skills and the ability to challenge.

The Friendship Club is part of People First Dorset. It is a club led by people with learning disabilities, where they come together to make and meet friends in everyday settings such as cafes, pubs and bowling alleys. Its activities improve members’ confidence, communication and independent living skills, reduce social isolation, improve health and wellbeing and address discrimination. Developing friendships helps people with learning disabilities improve their confidence and social skills, the first steps to speaking up.

Good health pathway

For young people with continuing health conditions, ‘transition’ in health services means the change from children’s to an adult healthcare services. This is a gradual process where choices can be made around which hospital and services will suit your young person best. Start discussions when accessing health appointments. This will encourage planning for transition to adult health services from an early age.

When do health transitions happen?

Most young people move on to adult health services between 16 and 18 years of age. Sometimes, young people move from a children’s health service to an adolescent or young person’s service at 13 or 14 years of age, instead of moving straight to an adult health service. You can ask your young person’s health practitioner about when they will be making the move. Transition from child health services to adult health services will mean your child may start seeing a different team at your local health services. They will be given a lot more independence, where they have capacity, and will be encouraged to learn about their own health, so that they can be more involved in their healthcare and decision-making.

Who can help your young person get ready to move over to Adult Health Services?

Your young person’s health team will be able to give you information and support about moving on to adult services. There may also be other health professionals involved, such as a Paediatrician, Community Care Nurse or Clinical Nurse Specialist. For some young people Annual Health Checks will be available from age 14. Annual health checks are for adults and young people aged 14 years or over with a learning disability. This check helps you to stay well by talking about your health with your doctor and finding any problems early on and get the right care. If you are not sure if you have joined the Learning Disability register at your GP surgery, please do contact your GP surgery to discuss.

Making decisions

Around this time of transition, health staff will begin to spend more time talking directly to your young person rather than with you as their parent or carer, although you will still be encouraged to attend appointments with them if necessary. If your young person is unable to make their own decisions after the age of 16, their health practitioner may talk to you about undertaking a mental capacity assessment. If your young person lacks the capacity to make their own health decisions, you will need to agree with their health practitioners how this can best be done. NHS information on making decisions for another person may help you here.

When to start planning

From year 9 (age 13 to 14) onwards, consider involving all relevant health professionals for example dietitians, therapists, nursing, medical. Also, representatives from both children and adult teams. Where possible your young person should be encouraged to prepare for adulthood by:

  • learning about their conditions and treatments
  • getting involved in asking questions at appointments
  • taking responsibility for their medicines where possible
  • starting to make their own appointments where possible
  • learning how to store and use contact details on their mobile phone
  • finding out who to contact in an emergency. You may find an ‘alert bracelet’ useful if your young person has a condition that may change suddenly (available online from various suppliers)
  • young people should be given the opportunity to see their doctor on their own. If they have capacity, the doctor will need their consent to share information with their parents. Consider if your young person would like someone else to accompany them to appointments.

Questions to consider asking your healthcare team:

  • what is the plan for your young person’s transition?
  • when are they moving to adult services?
  • can they choose which adult service they move to?
  • what is different about the adult service?
  • can they meet the adult staff before they leave children’s services?
  • can they visit the adult service to look around?
  • are there any young people they can talk to about moving to adult services?
  • what do they need to know before moving to the adult service?
  • when can they start getting more involved in their health care?
  • how will their condition affect their future, such as education and employment prospects?

Health professionals could include:

  • Community Children’s Nurse
  • Clinical Nurse Specialist
  • special school nurse
  • GP
  • dietician
  • physiotherapist
  • occupational therapist
  • Paediatrician

What is the role of the general practitioner (GP)?

The young person’s doctor or GP needs to be involved in the transition planning process, as they will sometimes become the first point of contact for them on leaving school for any therapies which may have been provided via the school. Where your young person has continued needs and an adult service exists, your health practitioner can refer them on directly. However, they will need to keep your GP informed as the ongoing medical link.

Helpful links and booklets

Where your young person has complex health issues, one or more of the following health resources may be helpful for them:

  • Communication passports
  • Health action plans
  • Health passports
  • Positive behaviour support plans
  • One page profiles and ‘All About Me’ to help keep all your information together in one place

Your health practitioners will be able to tell you more about each of these resources.

Learning Disability Annual Health Checks

Learning disabilities - NHS The health check is a great preventative health opportunity. You do not have to be unwell to get your check. Having the check at your GP surgery helps young people get used to accessing the surgery for other health appointments and needs into adulthood.

Continuing Care (CC) Funding Some children or young people with long-term complex health needs may require a package of continuing healthcare funded by the NHS.

Dorset Local Offer: Information, advice and guidance

Dorset’s Local Offer gives you clear, accessible and accurate information about the services available for children and young people with SEND. Dorset’s Local Offer website holds information about education, health and care services, as well as leisure activities and support groups – all in one place. The information available on the Local Offer website describes the support available to families, and all children and young people with SEND.

This support includes:

  • universal services - for example, early years and childcare providers, schools and GPs
  • short-term support for children and young people with SEND who require additional support (in addition to what’s provided by universal services)
  • specialist services for children and young people with SEND who need specific longer-term support

Ending an EHCP

A local authority can end an EHCP if it determines that it is no longer necessary for the plan to be maintained because:

  • the young person has taken up paid employment (excluding apprenticeships)
  • the young person has started higher education (university)
  • a young person aged 18 or over has left education and no longer wishes to engage in further training
  • a young person has reached 25
  • the young person has moved to a different authority
  • the young person has met their outcomes as specified in the plan

The local authority can do this by issuing a ‘cease to maintain’ notice to the parents or young person stating the reasons why, after consulting with the young person/parents and the headteacher of their school/college. The young person can appeal if they disagree with the decision.

Family Hubs

We all need information or support from time to time, but sometimes it can be difficult to know where to go or who to ask. Family Hubs bring together workers from:

  • Dorset Council
  • health services
  • voluntary organisations
  • community organisations

into one place. This means you get the right support when you need it. 

Family Hubs are for all families living in Dorset Council area. They are a welcoming place that you and your family can go to if you need information, advice or help.  They provide services for families with children from conception to age 18. This is up to age 25 for children and young people with SEND.  They also offer activities and social opportunities where you can meet other families.

 

Family Hubs provide a range of services for babies, children, young people and their families, such as

  • parenting programmes
  • information sessions on topics such as healthy eating
  • managing your money
  • looking after your mental health
  • in person SEND support and advice

and much more. 

Other resources

SEN Code of Practice 0 to 25 years Statutory guidance for organisations which work with and support children and young people who have special educational needs or disabilities (Jan 2015).

The Care Act (Easy Read) The Care Act 2014 sets out in one place, local authorities’ duties regarding assessing people’s needs and their eligibility for funded care and support. The Easy Read version has been created by the Council for Disabled Children.

The Equality Act The Equality Act 2010 legally protects people from discrimination in the workplace and in wider society if they have one or more ‘protected characteristics’. Disability is a protected characteristic, and it is therefore illegal to discriminate unfairly against disabled people

Appendix 1: The Mental Capacity Act 2005

The Mental Capacity Act (MCA) legislation came into force in 2007 to promote and protect the rights of vulnerable people who are unable to make decisions for themselves. It applies from the age of 16 which means that from the age of 16 it should be applied to all decisions being made about people in terms of their Care, Support, Medical Treatment, Education, and all other significant decisions that need to be made about them and for them.

For parents, this means that when your son or daughter reaches the age of 16 this law applies to them regardless of any disability they may have, and it will change how decisions are made. You are no longer the decisionmaker on their behalf, you do, however, continue to have a vital role in supporting them to make decisions where they can, or by providing essential information for best interests decisions made on their behalf if they lack capacity.

The MCA is underpinned by 5 Principles which must always be applied to all assessments and decisions made.

Principle 1: A presumption of Capacity.

Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise. This means that you cannot assume that someone cannot make a decision for themselves just because they have a particular medical condition or disability.

Principle 2: Individuals being supported to make their own decisions or maximising capacity.

A person must be given all practicable help before anyone treats them as not being able to make their own decisions. This means you should make every effort to encourage and support people to make the decision for themselves. This would include the use of sign language, pictures, experiential learning, and/or communicating in any way that that person would usually communicate. If a lack of capacity is established, it is still important that you involve the person as far as possible in making decisions.

Principle 3: Unwise decisions

People have the right to make decisions that others might regard as unwise or unusual. You cannot treat someone as lacking capacity for this reason. Everyone has their own values, beliefs and preferences which may not be the same as those of other people.

Principle 4: Best Interests

Anything done for or on behalf of a person who lacks mental capacity must be done in their best interests. Acting in someone’s best interests is about following a process and finding out what it is important to them and not just what the decision maker thinks is best for them.

Principle 5: Less Restrictive Option

Someone making a decision or acting on behalf of a person who lacks capacity must consider whether it is possible to decide or act in a way that would interfere less with the person’s rights and freedoms of action, or whether there is a need to decide or act at all. Any intervention should be weighed up in the particular circumstances of the case.

Each decision is specific

Capacity is decision and time specific, so every time a significant decision needs to be made, capacity should be assessed. Young people especially are still learning about life and how to make decisions so it is very likely that their capacity will change. It is good practice to consider capacity for every decision being made. Capacity can fluctuate.

Assessing Capacity

In order to assess capacity, there is essentially a simple two-part test or process which must be applied.

Stage 1:

There has to be an impairment or disturbance to the mind or brain which prevents the person from being able to make the decision they are required to make. That impairment can be permanent or temporary such as a lifelong disability for example Autism or Downs Syndrome or it could be due to illness or drugs or alcohol. The important factor is the link between that impairment and the inability to make a decision. Traditionally this has been considered first before moving onto the next part of the assessment but recently it has become deemed better practice to look at the functional aspect of the assessment first.

Stage 2:

The MCA says that a person is unable to make their own decision if they cannot do one or more of the following four things:

  • Understand information given to them
  • Retain that information long enough to be able to make the decision
  • Weigh up the information available to make the decision
  • Communicate their decision – this could be by talking, using sign language or even simple muscle movements such as blinking an eye or squeezing a hand

Failure on any one of those points means that the person lacks capacity for that decision. It is important not to set the bar too high and the person only has to understand the salient points in order to make a decision. To state that someone lacks capacity to be able to make a decision the assessor has to displace that presumption of capacity and be sure that on the balance of probabilities they lack capacity. The responsibly sits with the assessor to prove the lack of capacity and it is not for the person themselves to evidence they have capacity. If the person is unable to make a decision and therefore lacks capacity for the decision, then it needs to be made in their Best Interests.

What is ‘Best Interests’?

The MCA provides a non-exhaustive checklist of factors that decisionmakers must work through in deciding what is in a person’s best interests. Some of the factors to take into consideration are:

  • Do not discriminate. Do not make assumptions about someone’s best interests merely on the basis of the person’s age or appearance, condition or any aspect their behaviour
  • Take into account all relevant circumstances
  • If faced with a particularly difficult or contentious decision, it is recommended that practitioners adopt a ‘balance sheet’ approach
  • Will the person regain capacity? If so, can the decision wait?
  • Involve the individual as fully as possible
  • Consider the individual’s past and present wishes and feelings, and any beliefs and values likely to have a bearing on the decision
  • Consult as far and as widely as possible. Parents are a vital part of the consultation process as they are likely to know the young person the best, though teachers, carers, sometimes even older siblings and other family members may also have something very useful to contribute

All best interest decisions will need to be recorded. A best interest decision can only be made from the options that are available to the person (in the same way that if they had capacity)

The decision maker will vary depending on the decision that needs to be made for example if the decision is about medical treatment, then the ultimate decision maker would be the medical practitioner proposing the treatment. If it was about care which the local authority is being asked to fund, then it is likely that they would be the decision maker.

Liberty and care planning

Liberty is important – it is a human right. Liberty is what allows us to live fulfilling lives. We all have a right to live a life that is free from abuse or harm, but we also have the right to live our lives autonomously. The challenge for providers and commissioners is to manage the tension between, on the one hand, promoting people’s rights, and on the other, the duty to protect them from risk. Too much emphasis on rights can lead to a lack of safety. Conversely, a risk-adverse approach can impose unnecessary restrictions on people’s freedom.

Deprivation of Liberty Safeguards (DoLS)

DoLS ensures people who cannot consent to their care arrangements in a care home or hospital are protected if those arrangements deprive them of their liberty. This can also apply to other arrangements for a person’s care and treatment such as a residential school or respite care and even in a person’s own home. The “Acid Test”, following a case heard by the Supreme Court in 2014 gave a definition about what is a deprivation of liberty.

If someone is unable to consent to arrangements for their care and treatment (so they have been assessed as lacking consent to be able to make that decision) and they are under continuous supervision and control and they are not free to leave, then they are deemed to be deprived of their liberty. If that is the case, then there should be a deprivation of liberty safeguard in place which ensures that that vulnerable person has a right of appeal against those arrangements should they so wish.

Due to the very high numbers of people that this applies to many local authorities have been unable to assess everyone who is deprived of their liberty and generally DoLS is recognised as needing reform. The new Liberty Protection Safeguards (LPS) will be replacing DoLS within the next couple of years. A code of practice has been out for consultation and hopefully there will be further news in Winter 2023 about LPS. See the SCIE website for MCA/DoLS and LPS Information