Introduction
Leaving school and moving into adulthood is a challenging time for young people and their parents. What kind of choices exist and will they help the young person lead a fulfilling life?
Many parents feel anxious at this time, predicting poor services or a possible lack of choice for their children. The support they may have enjoyed through local parents' groups or local children's services may seem to be about to fade away.
For these reasons it is vital that parents and their children plan for transition as early as possible. It may be the case that you as a parent take the lead role in co-ordinating services and planning for the future, ensuring that you receive all information including minutes from meetings. This fact sheet aims to help by bringing together some of the main issues that parents and young people need to think about. It is written for parents and their children aged 13 and over, as 13/14 is the age when the transition process should begin.
Starting to think about transition
In school year 9, the year in which young people turn 14, the Education Department will write to you informing you of a forthcoming review. This review will include the drawing up of a Transition Plan.
1. What is the Transition Plan?
'A Transition Plan should draw together information from a range of individuals within and beyond school in order to plan coherently for the young person's transition to adult life. Transition plans when they are first drawn up in year 9 are not simply about post-school arrangements, they should plan for on-going school provision, under the Statement of SEN as overseen by the LEA.' (Special Educational Needs Codes of Practice 9:51).
The Education Act 1996 states that the Local Education Authority (LEA) must include a Transition Plan in the first review after age 14. The Connexions Service in England or Careers Wales must be invited to attend this meeting. Both services are responsible for ensuring delivery of the Transition Plan. Social Services must also be involved so that any parallel assessment can be made. A Transition Plan should build on the conclusions reached and targets set at the previous annual reviews of a child's Statement of Educational Needs.
The process starts with a first review meeting, co-ordinated by the LEA, to which parents are invited on equal terms with professional staff.
2. The Transition Plan review meeting
All the local services must be invited to the review meeting:
Social Services to ensure that the parallel assessments under the Disabled Persons Act 1986, the NHS and Community Care Act 1990 and the Chronically Sick and Disabled Persons Act 1970 are carried out if appropriate.
The relevant health authority staff
Relevant education services
The Connexions Service in England or Careers Wales.
And of course parents, the young person and any of their friends or advisers. Parents have the right to present additional and independent evidence at the meeting.
Ideally, all participants, including the parents, should have a copy of all the written reports beforehand and must know who is actually attending.
What the law says
All schools have a duty under the Education Act 1996 to have Special Educational Needs Policies, which take account of Transition Plan arrangements. The policies must name the relevant local professionals - for example the local health and social services should both have designated officers to take responsibility for statutory assessments.
The SEN Codes of Practice covering England and Wales make it clear that transition planning must include:
What a young person needs to become more independent and confident
What practical help or adaptations may be needed at home
What special health needs require on-going support
What the young person and family actually wants.
3. Contributions to the Transition Plan
a) How parents can contribute
Parents have a vital role in collecting relevant information because they know all the important people and activities in their child's life. They also know what they may be able to do to help in the future and to understand some of the choices available.
It is helpful to make a checklist of everyone who has been working with the young person and who has information that will be important in the review meeting. Not everyone who is invited will be able to come to the meeting and so positive written information from professionals who know the young person well is vital in devising the Transition Plan. It is also helpful to think about your input as a parent and carer. How can you contribute to your child's personal and social development? Will your child's care needs changes, as s/he gets older? How do you see your child's future?
b) How the young person can contribute
Some young people find it helpful to talk to someone they already know and trust such as a teacher, social worker or careers officer. Others find it more helpful to work with local advocacy or support schemes that can help them identify what they would like. Social Services or the local Disability Information Service will know where the local advocacy schemes are. It is very important that young people, as much as is possible, have a chance to share their concerns and ideas - both inside and outside the family.
They might need to discuss personal concerns such as:
making friends and having a social life
sexual relationships
the financial implications of leaving home
getting enough help at college or university
ageing parents
personal care
It is helpful to start keeping a record of interests and achievements, including leisure ones, in case this comes in handy when taking up a particular course later on. Don't forget to include any Records of Achievement from school.
An example of working together
John is 14 and has Spina Bifida. He and his parents sat down and made a checklist about who should contribute to his Transition Plan.
The Educational Psychologist - because John has some learning difficulties
An Occupational Therapist - John, getting heavier as he gets older, wanted practical help with equipment and aids to help him manage college on his own
His Sports Coach - John is an active sportsman and would like a job in the leisure industry; he feels his sports coach knows more about him than many other people
His Paediatrician - John has some health problems but feels they are manageable. John and his parents agree he should speak to the doctor on his own as his privacy is important now he is older.
Social Services - John's father finds lifting very difficult now. The family feel that some adaptations at home will make day-to-day living easier.
The Learning and Skills Council - John wants to go to college and if possible, university.
John's Special Educational Needs Co-ordinator (SENCO) - who has been very supportive and can give detailed information on his progress over the last three years. Source: Council for Disabled Children
4. Checklist: the Transition Plan
Year 9: (academic year of 14th birthday)
Local Education Authority (LEA) writes to invite you to 14+ Transition Review
LEA notifies Social Services
14+ Transition Review meeting takes place
Year 10: (academic year of 15th birthday)
Parents are notified of 15+ Review: do you want any changes to the Plan?
It may be at this time that a Connexions Personal Adviser or Representative of Careers Wales is be approached for further guidance.
Start to make visits to local colleges or other post-sixteen services.
Year 11:(academic year of 16th birthday)
Is Transition Plan still relevant?
At 16, Social Services children's team will liase with Adult Care manager about any planning meetings that might be needed
16+ Annual review should make firm plans about what actual provision needs to be made. Relevant approaches and applications for places to be made. The Connexions Service/Careers Wales should be invited to and should attend the review meeting in year 11 to ensure that the Transition Plan is updated.
LEA should apply for funding from The Learning and Skills Council (LSC) in England and The National Council for Education and Training for Wales (ELWa), if relevant
There could be major changes to the young person's benefits
Year 12: (academic year of 17th birthday)
17+ Annual Review: is the Transition Plan in place and still relevant? What changes need to be made?
At 18, transfer to Adult Care Team takes place. This process may take place at 16 and sometimes at 19.
Finally, on leaving full-time education (school or college), the young person is covered by the Disabled Persons Act
5. After the Transition Plan has been drawn up
Once the Transition Plan has been drawn up the LEA must circulate the plan to the parents, head teacher, Social Services, relevant health contacts and any other relevant professionals and carers.
The LEA must ensure that all the services identified as necessary in the Transition Plan are available for the young person as they go through the transition period until they leave school.
Disabled Persons Act Assessment
Under the Disabled Persons Act 1986 the following procedure for assessment should take place. This process should be parallel to but linked with the Transition Plan described previously.
The Education Department is required to notify Social Services of all young people aged 13/14 years who are considered to be disabled.
Eight months before a child with a disability is due to leave full time education the Education Department is required to notify Social Services in writing.
Once Social Services have been notified they are obliged to co-ordinate a multi-agency assessment of the young person, which must be completed no later than three months before the person's school or college leaving date.
The carers of the young person, as well as the young person, should be encouraged to take a full and active part in this process. This can include the right to refuse an assessment or a particular service if this is their wish. Such a refusal would not bar a person from receiving help in the future.
The final report from this assessment should be discussed with the young person. After any agreed amendments have been made the report should be circulated to all relevant professionals, family members and any other carers.
After the assessment and report have been produced the social worker concerned should organise a review at which the information contained within the report should be discussed and relevant plans for the young person laid out. A member of the Adult Care team should be present at such a meeting.
Carers Assessment
As a parent/carer of a young person with disabilities you are also entitled to an assessment, known as a Carers Assessment. This is done by Social Services and may be done alongside the young person's assessment or separately. The aim of the Carers Assessment is to look at the care you are providing for the young person and the type of help Social Service can provide to support you. As your child goes through transition his/her needs may change, and your role as a carer may change too. Ask your child's social worker or social services for more information.
What support services are available?
It would be misleading to say that there is a comprehensive support network of services available to individual young people and their carers once a person has left full time education. It is important, however, for the plans that are being made through the transition period to include not just services that do exist but also to state what other services should exist if the person is to be properly supported.
Below we have signposted some of the core support services that should be considered.
It is worth noting at this point that as the law currently stands when a son or daughter reaches 18 and becomes an adult parents have few if any rights over them no matter how severely disabled the son or daughter may be. The law is being reviewed but at present parents have no legal rights to decide where an adult son or daughter may live or what they may do. This also applies to consent to medical treatment. In reality, this is often not an issue for individuals, particularly if they are living at home as regular consultation with sons and daughters is normal good practice.
Even if the young person lives away from home, it is still considered good practice to consult with family and carers.
Further or Higher Education
There are essentially three options for young people who want to continue their education after school:
Further Education colleges
Independent specialist colleges
Higher Education institutions
A successful Transition Plan will have made sure that the young person will have a clear understanding of what educational opportunities exist after leaving school. The choice of college will clearly depend on the type of course the young person wants to take and where the course is being run.
It is important for potential students to visit the college they are thinking of joining so that they can meet staff and other students and discuss their support needs.
The Learning and Skills Councils (LSCs) in England and The National Council for Education and Training in Wales (ELWa) are responsible for ensuring sufficient full time provision of all courses for 16-18 year olds. They are also responsible for funding certain part time courses for 16-18 year olds as well as adult's aged 19 and over. Local Education Authorities have a duty to fund adequate provision of courses that fall outside the LSC or ELWa's responsibility. Consult your LEA for more details on this issue.
Skill
SKILL is the National Bureau for Students with Disabilities. It provides individual support and publishes helpful information sheets for students wishing to undertake Further or Higher Education or training. SKILL, 4th Floor, Chapter House, 18-20 Crucifix Lane, London SE1 3JW Tel. 0800 328 5050 (Mon-Thur, 1.30-4.30pm) Minicom. 0800 068 2422 e-mail: info@skill.org.uk Web: http://www.skill.org.uk
Disability Discrimination
Since September 2002 if your child has a disability and has been discriminated against in education you may be able to challenge this. You do not have to have a statement to come within the provision of the legislation. But you do have to have a disability, which is defined as:
"A physical or mental impairment, which has a substantial and long-term adverse affect on a person's ability to perform normal day-to-day activities".
More information on how this applies in schools can be found in SEN - England and SEN - Wales. In regard to post-16 education this Act applies to:
Further and Higher Education institutions
LEAs securing further education, including adult and community education
Schools providing further education for adults
LEAs providing statutory youth services
The Act covers:
Admissions and Exclusions, including when enquiring about and applying for a course
Services, including work placement, outings and trips and examinations and assessments
More detailed information about the Act, including disabilities covered by the Act, are available from:
Disability Rights Commission
DRC Helpline, FREEPOST, MID02164, Stratford upon Avon CV37 9BR Tel: 08457 622 633 (Mon - Fri 8am - 8pm) Textphone: 08457 622 644 http://www.drc-gb.org
Employment and training
Not all young people will want to move on to Further or Higher Education. Their preferred option may be to work. In this case they will need specialist advice about training and employment opportunities. There are a number of agencies and people who should be consulted:
Job Centre Plus can provide a range of services. A Disability Employment Adviser (DEA) can provide support to people who are finding it difficult to get a job due to their disability. They can help with an employment assessment to produces an action plan for getting a job and provide further details about WORKSTEP and the Job Introduction Scheme. Through the Access to Work (AtW) scheme people with disabilities can access a communicator for interviews, alongside a range of support once in work. For more information contact your local Jobcentre Plus or see www.gov.uk/browse/working/finding-job
Learning and Skills Councils (LSC's) in England aim to simplify arrangements for the planning, funding, delivery and quality assurance of post sixteen education and training. There are 47 local LSC's who are responsible for responding to the skills and learning needs of individuals, communities and local business. They play a significant role in helping young disabled people access further education and training opportunities that will prepare them for work. For further information contact their National Helpline Tel: 0870 900 6800 or see http://www.lsc.gov.uk
ELWa (The National Council for Education and Training in Wales) - is responsible for the planning, promotion and funding of all post-16 education and training in Wales with the exception of Higher Education. For more information contact ELWa on 08456 088 066 or see http://www.elwa.ac.uk
The Connexions service (England only). Connexions aims to provide advice, guidance, support and personal guidance services for all young people aged 13-19, through a personal adviser. Further information is available from Tel. 0870 900 6800 or on their Web: http://www.connexions.gov.uk
Careers Wales - This service delivers careers and learning information, advice and guidance to young people and adults in Wales. For more information Tel. 02920 854880 or visit their Web: http://www.careerswales.com
Adult day centres. Some individuals may need the support and training offered by day centres. These are usually run by Social Service Departments, but may be run by voluntary organisations. Such centres offer ongoing training in areas such as independent living and work skills. If a placement is offered it could be short or long-term depending on a person's need. Most users are aged 19 or over. Referral for a placement is through a social worker.
It is vital that young people get the support of their school or college if they are to achieve a smooth transition to work.
Housing
Local Authority Housing Departments are responsible for drawing up strategies that address the full range of housing needs in their area. This includes co-operation with the private and voluntary housing sectors. Housing authorities are legally obliged to work with Social Services Departments in drawing up Community Care Plans and promoting community care through joint policies. In practice this should mean that they address the needs of young disabled people through special needs housing, mainstream housing and through services such as home adaptations and advice.
If it is appropriate for the young person to live away from home once they have left school, then it is very important that this has been included in the Transition Plan. There are several options that can be considered in particular a placement in a residential home or an independent living scheme. Such provision is available through the statutory, voluntary and private sectors.
Your first point of contact should be your social worker although you can write to different voluntary and private organisations asking them to send you information. Your local authority Housing Department should also have details of specialist housing schemes and housing associations with accommodation in your area. It is very important to visit potential new housing and to look at all the options before any decisions are made.
Housing Options
7a High Street, Whitney OX28 6HL Tel: 01993 776 318 e-mail: info@housingoptions.org.uk Web: http://www.housingoptions.org.uk
Provide advice and information for people with learning difficulties and their carers on accessing different types of housing.
Independent Living Fund
This is an independent discretionary trust fund. The Fund works in partnership with local authorities to organise joint care packages that are a mixture of services from the Local Authority and cash from the Fund to enable people with disabilities to buy in extra care. There are various conditions attached, but it is a discretionary fund, which means that each person will be looked at individually.
To find out about eligibility, contact your Social Services department and ask for an assessment under the NHS and Community Care Act 1990. Ask for information about ILF. On application, a visiting social worker from the Fund will arrange a joint visit with a Local Authority social worker to discuss care needs and agree what is needed. The Fund's social worker will then make a written report with recommendations to the Fund.
For more information about the Fund contact them at, ILF, PO Box 7525, Nottingham NG2 4ZT Tel: 0845 601 8815 e-mail: funds@ilf.org.uk Web: http://www.ilf.org.uk
Direct Payments
Local Authorities can give payments, instead of services, to allow disabled people and carers to buy in the services they have been assessed as needing. Direct Payments are seen to promote the independence of parents and their disabled children who would like to manage their own social care needs.
If a young person is under 16 Direct Payments will usually be made to the parent. When a child becomes 16 she or he can receive payments in their own right to allow them to buy in the services they have been assessed as needing.
In the past you could not insist on Direct Payments, however, in England, a request should now be refused only in very limited circumstances. At the moment Direct Payments schemes are not mandatory in Wales.
The amount you receive should be enough to allow you to meet all the costs involved, including tax and National Insurance as well as the fee for a police check (should you employ help directly). Social Services will usually deduct an amount from the payments equivalent to what you would have been charged had they arranged the services. Alternatively, Social Services may make the payments in full and ask you to reimburse them any assessed charge.
Any payments you receive must be used to pay for services to meet the assessed needs.
Vouchers
The Carers and Disabled Children Act 2000 has also made provision for a new voucher scheme, which is expected to be available soon. At the moment, the government is drawing up guidance as to how the scheme should be operated. In effect, the scheme should allow carers and disabled children to receive vouchers for short-term respite breaks. This should mean more freedom to choose when and where to take a break.
Health
Family doctors remain the first point of contact as far as providing primary health care services to individuals is concerned. Many paediatricians will continue to see their patients into adulthood particularly if there is a growth or development delay or rare disorder.
It is important that a health professional is involved in the drawing up of the Transition Plan, for example the person's GP or the school doctor.
The GP should be the first point of contact after leaving school if physiotherapy and speech therapy services are required. This need should have been identified in the Transition Plan so that all the services are aware before an individual leaves school.
For access to occupational therapy a referral can be made by a GP, hospital or social worker. If a person is attending Social Services day provision then they should have access to health services there.
Help with mobility aids should come via your GP or hospital, Community Nurse or Occupational Therapist.
Advice on sexual health may also be available through the local GP or clinic. It is also worth contacting a local Family Planning Service if one exists in your area. Voluntary organisations may also be able to help:
FPA,
PO Box 1078, East Oxford DO, Oxford OX4 6JE Tel. 01865 719418 Web: http://www.fpa.org.uk Produce 'Talking together about Growing Up' an illustrated workbook for parents of children with learning difficulties.
Leisure
Access to leisure opportunities is an important part of any individual's life. It is vital therefore that the Transition Plan records a young person's leisure interests and aspirations, and that appropriate plans are then made.
Any given area will have a range of leisure opportunities e.g. Sports Centres and Clubs. To find out more contact your local library. Different voluntary agencies will also have details of specific activities, in particular those that are accessible for people with disabilities. Contact your Local Council for Voluntary Service or visit http://www.youthinformation.com for the details of different organisations. The local authority Youth Service should also offer opportunities. Contact your local authority Youth Office. If you have a local Disability Information Service consult them.
Short-term respite care
Many areas have short-term respite care provision, which is available to both children and adults. Again if it is anticipated that such care will be needed into adulthood then this must be included in the Transition Plan.
Your social worker should be contacted for details on respite care options. The voluntary sector is now a major provider of respite care services. Your Social Services Department should have further details.
As well as residential respite care there may be a local Family Link or Befriending scheme linking young people to a family or volunteer for short breaks.
Benefits
When your child reaches 16 they may be able to claim benefits in their own right. However, if they do you will lose any benefits you receive for the child as your dependent e.g. Child Benefit. Your Social Worker, local Citizen's Advice Bureau or Welfare Rights Worker may be able to offer advice and guidance.
Wills and Trusts
Making provision for the future is very important for families with a disabled young person. You can set up a Trust for your child to keep them secure. This will mean seeing a solicitor for expert advice. However, there is free information available which will help you decide what arrangements you might like to make.
The Disability Law Service is a law and advisory charity for disabled people and their families. Their information sheet 'Guidelines for Trusts Where There is a Member of the Family with a Disability' is available on receipt of a SAE (9 by 6 inches) from Disability Law Service, Ground Floor, 39-45 Cavell Street, London E1 2BP. Tel. (020) 7791 9800. Mon. to Fri. 10.00am-1.00pm and 2.00pm-5.00pm
The mental health charity MIND will also be able to help. If you contact them they will be able to send you details of solicitors who specialise in wills and trusts and work in your area. Contact MIND infoline. Tel: 0845 7660 163.
Mencap have a useful booklet for parents 'Leaving money by will to people with learning disabilities', available free. Write to: Wills Department, Mencap, 123 Golden Lane, London EC1Y 0RT or call (020) 7696 6996 or e-mail: legaciesweb@mencap.org.uk
Community care legislation
Up to the age of 18 the needs of your son or daughter are assessed under the Children Act. From the age of 18 there is a transfer to adult services under the NHS and Community Care Act 1990. This Act incorporates previous legislation including the Chronically Sick and Disabled Persons Act 1970.Each Local Authority is now required to publish a Community Care Plan, which must outline what services they intend to provide to those who fall within the scope of the Act. This Act also requires service providers to consult with service users and their carers. Contact your local Social Services Department for details.A vital part of Community Care legislation is the right of those who need support to have a full assessment of need. This assessment should look at a person's need as a whole and not take each one separately. This assessment or Care Plan should be linked up with the work already undertaken in producing the Transition Plan.Assessments for Carers and the cared for person are the responsibility of your local Social Services Department.Carers UK produce a useful range of publications for carers:Carers UK 20/25 Glasshouse Yard, London EC1A 4JT Tel. 020 7490 8818 Web: http://www.carersonline.org.uk
Further Reading
The publications listed here offer a good starting point for more detailed information.
After 16 what's new? Choices and Challenges for young disabled people. A very useful guide for young people, parents, carers and professionals workers. It takes an extensive look at the opportunities available to young people as they reach 16. Information on education, benefits, grants, mobility, sources of advice, allowances and practical help is included.
Published by and available from the Family Fund, PO Box 50, York, England, YO1 9ZX Tel. 0845 13045 42 e-mail: info@familyfund.org.uk. Free to young disabled people and their carers, £10 to professional workers. This publication is also available on the Internet at http://www.after16.org.uk
Disability Rights Handbook. A guide to benefits and services for all disabled people, their families, carers and advisers. This comprehensive handbook on benefits and rights is updated each year. It provides invaluable information to those seeking guidance on the benefit system. Available from Disability Alliance, Universal House, 88-94 Wentworth Street, London E1 7SA Tel: 020 7247 8776 (Voice and Minicom) Price £14, post free.
19+: A guide to getting what you need from your Local Authority at 19 plus. An information pack for disabled people, their advocates and carers. This comprehensive guidebook has been produced for disabled people, carers and advocates and concentrates on how to access services. It is a very practical, guide to a complex area. The pack is produced by Action 19+ which is a consortium of disabled adults, carers, advocates and voluntary organisations who want the provision of good quality personal support and community care services for adults whatever their disability. Action 19+ also produces a regular newsletter and has a Resource List that is available free of charge. For further details on the guide and information on the Action 19+ Campaign contact, Action 19+, c/o SCOPE, Campaigns Department, 6-10 Market Road, London N7 9PW Tel: 020 7619 7244. Price £5 to disabled people, parents, carers and advocates, £10 to others.
Growing Up: A Guide to Some Information Sources for Young Disabled People and their Families. Contact, NCB Booksales, 8 Wakley Street, London EC1V 7QE Tel: 020 7843 6029. Price £12 incl p&p or e-mail booksales@ncb.org.uk.
Move On Up. Supporting young disabled people in their transition to adulthood. This report, and accompanying leaflet on 'Getting your rights', has been produced by Jenny Morris in conjunction with Barnardos. The voice of young people going through transition is clearly heard along with good practice guidelines for services that seek to support young people through this time. A useful document for professionals, parents and young people. Contact: Barnardos Childcare Publications Team, Barnardos Trading Estate, Paycocke Road, Basildon, Essex SS14 3DR Tel: 01268 520 224. Price £12 plus 10 per cent postage.
Your Life, Your Future. A brief, lively guide to opportunities and choices for young disabled people including sections on planning for the future, speaking up for yourself, getting support and lots more. Free to young disabled people and their carers and £4.50 to professionals. Published by and available from the Family Fund, PO Box 50, York Y01 2ZX Tel. 0845 13045 42 e-mail: info@familyfund.org.uk. This publication is also available on Internet at http://www.familyfundtrust.org.uk
Special Educational Needs Code of Practice (England) - This document published by the Department for Education and Skills (DfES), gives guidance on special educational needs. Early years settings, schools and Local Education Authorities must have regard to it when considering a child's special educational needs. Available from DfES (Department for Education and Skills) Sanctuary Buildings, Great Smith Street, London SW1P 3BT Tel. 0845 60 222 60. http://www.dfes.gov.uk/sen
Special Educational Needs Code of Practice for Wales - This document published by the Welsh Assembly, gives guidance on special educational needs. Early years settings, schools and Local Education Authorities must have regard to it when considering a child's special needs. Available from The National Assembly for Wales, (NAfW) Pupil Support Division, Cathays Park, Cardiff CF10 3NQ Tel. (029) 2082 6078. http://www.learning.wales.gov.uk
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