LAST UPDATED: 08/01/13
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The transition from childhood to adulthood is a crucial time in the life of a young person with learning disabilities. Securing the right support is key to making the process as painless as possible.
The first thing to do is listen. Listen to what the young person wants. Encourage them to voice their own opinions, rather than letting others take over. Even if their expectations seem unrealistic, some goals may be achievable with the right support. Ask friends and family who know the young person well to help with transition planning. Don't leave it all to the professionals!
The first thing you should do is download and print our Transition timeline (243.2 KB) *. This handy, colourful timeline summarises the main points you need to know and what you need to be doing. One for the fridge door!
* Many thanks to Progress Magazine and Swindon Parent and Carers Advisory Group for providing the original concept for the Transition timeline, and to designer Keith Blackmore.
Transition Plan: Guidance
The process starts when your child is 13 or 14 (Year 9) and continues until they leave school. It is important to get help from a variety of professionals – some of whom may be involved until the young person is 25.
It is vital to get things right at the start. The benefits of properly managed transition will carry your child through into adulthood. Equally, transition that is poorly managed can have a long-lasting impact on young people’s well being and life chances. Provision varies from one local authority to the next so check what yours provides.
It should clearly set out your child’s hopes for the future and cover all aspects of life.
Health, housing, social care, lifelong learning and employment needs must be clearly stated.
Base on needs
It should be based on what the young person wants not just on the existing services available
It should cover money, benefits and ways of funding the services and support the young person will need as an adult.
Write down a list of questions before you go to the planning meeting
Take an advocate
Take someone with you, a friend or advocate and encourage professional allies to attend too.
If the young person receives health care a health professional will be asked to submit written information
You should receive a copy of agreed actions such as what needs to happen, the name of the person doing the action and when it will be done by.
If the young person will stay at school until 19 an application needs to be made to the local authority’s complex needs panel to arrange continued funding
Every year after year 9 there should be a transition review meeting. Even if they don’t attend there should be some contact with the relevant professionals involved with the future arrangements for the young person.
Speak to the transitions officer at your local authority.
The stages of transition
11 – 14
- Your child’s IEP (individualised Education programme) should include social skills, communication and self –help skills with at least functional maths and functional reading
- Begin Transition planning as part of IEP process
- Learn about ‘Exit options’ to ensure that your child will be able to reach her/his goals, (e.g. College, work).
No later than 16
- Transition Planning (focus on interagency links and responsibilities). Identify job interests and abilities.
- Include activities such as career exploration, job sampling and some job training.
- Identify community services that provide job training and placement.
- Prepare job placement file with references and skills that have been acquired.
- Begin application to adult services agencies.
- Consider summer employment or participate in volunteer experiences.
16 – 18
- Adult services programmes.
- College, vocational or technical schools.
- Social security administration.
- Residential or independent living services.
- Recreation/leisure groups.
- Medical services.
17 – 18
- Begin to consider and research guardianship.
- Continue to review and update transition plan.
- Take ACT or SAT tests.
- Visit colleges and their disability services offices.
- Register with disability service office of your preferred school by the end of their final year.
- Continue to review and update transition plan.
- Establish needed health benefits.
- Develop long-term financial support plan.
- Depending on their support needs some students can remain in school and continue working on transition goals until they are 21.
Tips for parents during transition
Always take some with you to meetings
If you can’t get what you need go higher up the chain of command. Get in touch with your local MP and people working in this area at national policy level
Support for carers
Build up a support network for yourself of other parents in a similar situation.
Support for the young person
Build circles of support for the young person consisting of friends, family, neighbours and people who work with the young person.
Try to focus on achieving the goals your child is dreaming of.
Not a label
Always focus on your child’s strengths, describe him or her by their name and their gifts, not by their label.
Keep school, medical, family information and any work history in a well-ordered file.
Document phone calls and take notes, especially if there are any contentious issues.
Make professionals aware of any relevant personal information such as religious or dietary needs
Life plan book
Compile a life plan book, containing personal information about the young person and details of their support needs. It may be helpful to explain certain routines such as eating, travelling, getting up, work experience.
Power of Attorney, Guardianship and Mental Capacity
Capacity is decided using this test: Does the person have an impairment of, or disturbance in the functioning of, their mind or brain? If so are they able to make a decision by:
- Understanding relevant information.
- Retaining that information.
- Using/weighing that information and understanding its implications.
Communicating that decision and any decision about capacity should be made using the following principles .
- A person must be assumed to have capacity until proved otherwise.
- A person must not be treated as lacking capacity unless all practicable steps have been taken to support them (including varied methods of communication).
- A person is not to be treated as unable to make decisions just because they have made an unwise one.
- If an act is done, or decision taken, for someone else it must be done in their best interests.
- Where action is taken for another it must be the least restrictive of the person’s rights and freedom of action.
- If it is felt the person lacks capacity to make a decision then those involved in their care can act in their best interests. This has to be documented to show how the decision was reached (if there are no family members or informal carers an Independent Mental Capacity Advocate can review the decision to ensure this was reached in the best interests of the person). If there is a dispute regarding the decision this could be referred to the Court of Protection.
Mental Capacity Act: both the Department of Health and the Ministry of Justice produce guidance about the Mental Capacity Act. The main aim of the act is allow people to make decisions for themselves wherever possible and when they are unable to make decisions for themselves to ensure that decisions taken on their behalf are taken in their best interests.
Court of Protection and Deputies
Deputies are appointed by the Court of Protection to manage the affairs of people who do not have capacity.
Power Of Attorney
Enduring Power of Attorney is granted if a person is deemed not to have the capacity to make decisions for themselves. There are two kinds of Lasting Power of Attorney – personal welfare and property and affairs. If you want to act on behalf of a person without capacity you must apply to the Court of Protection to be appointed as a receiver. Lasting Power of Attorney has to be registered with the Office of the Public Guardian to be valid. Take legal advice before signing anything! Bank accounts can be opened on behalf of people with learning disabilities without needing a power of attorney. However, it is much easier to do this on behalf of someone who is under 18.
Circles of Support can be an effective way to safeguard the future of a person with learning disabilities as parents and other family members get older. It can be an unrealistic burden for one person to take on the entire responsibility but if a small group of trusted people can be assembled the load can be shared and they can support each other. Members of the Circle of Support should be there because they know the person with learning disabilities well and care about them, not because they are being paid to get involved.
Services and assessments
At the age of 18 the young person’s care moves from children’s to adults’ services. A community care assessment, sometimes known as a Disabled Persons Act Assessment or DPA will be carried out along with a carer’s assessment for the parent or carer. Even if the young person has not received social care services as a child they may need these services as an adult. Check with your local authority to see if they charge for services.
School and Connections
Connexions must complete a Section 140 assessment - an outline of the young person’s educational and training needs. The school can help set up a work experience or volunteering placement to help the young person get an idea of the kind of work that interests them, identify what they find difficult and what kind of support they may need in the workplace.
Connexions S139A Assessment: This follows on from a statement and needs to be given to further education and care providers. The Connexions service aims to provide a single point of access for all 13-19 year olds to help them prepare for the transition to work and adult life. The assessment will be completed by Connexions advisors. It should build on previous assessments including:
• Last annual review
• Individual Education Plan
• Pastoral Support Plan (if in place)
• Connexions Action Plan (if in place)
• Record of Achievement (Progress File).
• Input from school and LEA staff
• Input from health professions
• Input from social services.
Community Care Assessment
This covers areas of support required and summarises needs in accordance with the Fair Access to Services Criteria. It covers current needs and concerns, background information, physical health and wellbeing, personal care, managing finances, home and living situation, mobility, social relationships and daily activities, emotional well being and mental health, risks and safety. This assessment is carried out by social services.
Don’t sign the assessment until you’ve…
- read it carefully.
- questioned anything you are unsure or worried about.
- met with your social worker or care manager to discuss it.
- corrected errors and added extra information if necessary.
- checked that the right amount and type of support is clearly specified.
- checked that money, work, training, education, housing, health, social care and leisure are all included.
Social Services coordinates this. It is optional but useful as parents have a carers’ role. Many local authorities provide carers’ self-assessment forms which can be downloaded from local authority websites.
Health Action Plan:
Hospital-based health services transfer to adult provision at the age of 16. Early planning of health services is very important as there is no adult equivalent of a paediatrician who has responsibility for the whole person. A Health Action Plan will be carried out that lists the young person’s health needs and how they will be met in the future. It is very important that the right support is put in place now as it will determine the adult options the young person can take up. If the young person has complex health needs they will need an assessment for continuing care funds from the local health trust.
This involves school nurse, local doctor or social worker. Parents should initiate a 'Continuing Healthcare Assessment' for those with high provision needs. The social worker should ensure that the young person is kept informed and prepared for the planned changes throughout the process.
Surrey allows plans to be made focusing on specific body parts/areas. Surrey health action template
Continuing Healthcare Checklist: NHS provides information about what is involved in a continuing healthcare assessment and explains what those who qualify for continuing healthcare may be eligible for.Continuing healthcare checklist
National Development Team for Inclusion (NDTi): a clearly written and well thought through series of fact sheets about transition with a "Pathways to Transition" map and further support and training. NDTi
Mencap: produces a comprehensive series of fact sheets about transition along with a range of support and training services.
Mencap transition services
Person Centred Planning: website providing information about the Person Centred Planning Approach. This work has been pioneered with people who have learning disabilities and their families. It can help them make positive changes in their lives at transition and other key times.
Person centred planning
Autism Education Trust toolkit: summary of common issues surrounding transition for young people on the autism spectrum and issues to consider for those supporting them. Practical strategies to support transition and a list of links to useful organisations and support materials.
Autism transition toolkit
Preparing for Adulthood: website containing lots of information about transition.
Transition Information Network: alliance of organisations and individuals working to improve young people’s experience of transition. Includes information for young people with disabilities, for families and for professionals.
CHANGE:free to download guide called "How to Make Transition Work". A simple resource to help teaching staff and carers support young people with learning disabilities make a good transition from school or college into the world of work.
Learning Disability Coalition: represents 15 learning disability organisations. It campaigns to make sure that the government provides enough funding to allow people to lead independent lives with the right support.
Dimensions UK: advice and support about going through transition and support with employment training.
National Autistic Society: Transitions Service: advice, training and support offered. Resources available and guidance about what to expect during the transition process.
NAS Useful transition resources
Transition and education - NAS
Hesley Group: A colourful and nicely illustrated 62 page guide to everything transition planning from the Hesley Group, a leading independent provider of care and education to people with autism and complex needs. PDF format
Next Steps - A guide to Transition Planning
Network 81: practical help and support to enhance the education of children with special needs through a network of training programmes.
Independent Living Trusts Association: Life Of Your Own is establishing a network of Independent Living Trusts – a powerful network of family, friends and community members who are offering support to a person with disabilities. Resource of information about how to form circles of support and how to develop Independent Living Trusts within them. The association provides a forum for sharing knowledge, resources, funds, contacts and training.
Transactive Teen Zone: MENCAP information site for teenagers with learning disabilities about transition and other teenage issues.
Mencap Teen Zone
Skill: national charity promoting opportunities for young people and adults with any kind of impairment in post-16 education, training and employment. Information and advice about all the various options available to post-16s. Runs one-day introductory courses with Disability Alliance on the benefits, grants and loans available to students with disabilities.
Leonard Cheshire Disability: offers a range of transition services across the UK encouraging independent living.
Disability Law Service: offers help with matters of law affecting people with disabilities including community care, further and higher education, employment and welfare benefits.
Voluntary Organisations Disability Group: umbrella group of voluntary sector providers of social care for adults with disabilities. Helps to shape the development of social care policy.
Office for Disability Issues: set up to help the government achieve its target of achieving equality of opportunity for disabled and non-disabled people by 2025.
Speaking Up: charity and social business which enables people with learning disabilities and mental health problems find their voice and take action to make positive changes in their lives through advocacy.
Speaking up blog
Transition child to adult services - A facebook group for parents and carers to share information and advice. https://www.facebook.com/groups/180954967503/
Barnet Council transitions service: Barnet Council has produced a range of fact sheets for young people undergoing transition. Subjects covered include: adult social care and health, annual reviews and transition planning in schools, education training and employment, social and leisure activities, carers and housing. Contact your local authority’s learning disability team to find out what’s available in your area.
Tyze: a really friendly and useful social networking tool to help link friends, family, carers and professionals. Check it out! http://www.tyze.com/
Progress: A magazine and a website serving as an essential transition guide for 13 to 25 year olds with additional needs. Providing all of the information needed to make positive, informed, key lifestyle decisions. Progress is used by young adults, parents, carers and professional advisers alike. Progress Magazine
The Brain Injury Hub: A new source of information and practical help related to acquired brain injuries. Moving on: adulthood and acquired brain injury Brain Injury Hub: Moving on
Schools post 16 and Colleges
Macintyre: runs two special schools in Wales and Buckinghamshire and a further education college in Oxfordshire, along with registered care homes, accredited training schemes and lifelong learning. Offers highly specialist education and residential care services. There is a No Limits programme for young people post-16 offering a bespoke community-based education and support programme. They adopt a multi-agency approach to post-16 provision, blending different funding streams to get better value for money. Offers My Way project for transition; a facilitator works with a young person for 2 years before they leave school and coordinates care for the young person with a range of professionals including local authorities, teachers, social workers, medical staff, family and friends.
Prior’s Court Foundation: a specialist school for children and young people with autism who have particularly complex needs. The school, near Newbury, focuses on developing skills to prepare young people for adult life, offering classes in cooking and cleaning along with vocational training such as animal husbandry and horticulture. It offers pupils the chance to get nationally recognised certificates of achievement and to go on work placements.
Beaumont College: on the outskirts of Lancaster Beaumont College caters for 19-25-year-olds. It emphasises ability rather than disability. The college uses creative arts as a vehicle for developing students’ confidence as well as building literacy, numeracy, social and communication skills. The college supports some students who are aiming for higher education, employment or volunteering schemes.
Mencap National College: provides further education for students with moderate and severe learning disabilities. There are colleges in Somerset, Northumberland and Denbighshire. All three are in beautiful countryside and provide vocational opportunities including horticulture, car valeting, ICT and many other activities. The curriculum emphasises life skills and independence.
Treloar School: based in Upper Froyle, near Alton, Hampshire, a non-maintained, special school for children with disabilities. It is part of the Treloar Trust which provides education, therapy and medical support and independence training for young people with physical disabilities.
Orchard Manor: part of the SCOPE transition programme. It is based in Hertfordshire close to the charity’s school, Meldreth Manor. It caters for 18-25s with complex care needs and provides a three-year course in a stimulating environment combining life and social skills with care. It helps young people make the transition from childhood to adulthood.
Getting a job boosts self-esteem, fosters independence and makes life much more interesting, not to mention paying the bills. People with learning disabilities are capable of doing many different kinds of work but are not always given the right opportunities to realise their potential. At 16-17 they are twice as likely to be unemployed as their non-disabled peers, at 18 three times as likely and at 26 four times as likely. Everyone has the right to work and following the advice in this section can help this group of young people secure the job of their dreams.
Please check out our employment and training info pack for further info.
The shape of daytime activities for adults has changed considerably. Services are increasingly community-based. An individual plan is devised tailored to the needs and interests of the young person. Personal budgets are offered increasingly giving young people and their families more flexibility and control to choose the right package of care and support.
Westminster Society: provides community services for people with disabilities living in the Westminster area of London. Offers young people and adults a range of opportunities for education and leisure activities. Also offers supported housing and nursery and play scheme facilities for children with learning disabilities.
St Joseph’s Pastoral Centre: enables people with learning disabilities to participate fully in the life of their church and community. The centre is part of the diocese of Westmnister and works with families in London and Hertfordshire. It has an activity centre in Hendon offering a range of vocational, leisure and therapeutic courses.
Sex & Relationships
Please check out our info pack on Sexuality & Relationships for more info.
Family Planning Association: easy to understand guide to sex for people with learning disabilities and their families.
Benefits/ Grants /Money
Please check out our financial help info pack for more info.
From child to adult: a guide to disability, transition and family finance
This free publication by Working Families has sections for parents and carers and disabled young people, a step-by-step guide to better-off calculations and a list of useful publications, organisations and websites. It answers questions such as: How are family finances affected when a disabled child becomes an adult? When is it most advantageous for a young person to start claiming their own benefits? Can parents change working hours to fit with a disabled young person's new regime? PDF Transition financial guide from Working Families
Transition is a good time to start planning for the financial future of the young person in the form of a will or a trust.
Mencap wills and trusts information service
Education Maintenance Allowance and Adult Learning Grants: fact sheet from Disability Alliance about these grants and how to claim them.
Housing options: produce an advice sheet on benefits for people with learning disabilities.