Looking to the Future

What follows is a summary of the information provided by the education and employment organisations that were represented at the AYME conference in Northampton in October 2003.  For further information, please contact the individual establishment concerned.

Connexions Service - providing advice/advocacy on education & careers

Speaker - Linda Bristow, Northampton Connexions

Connexions is a government-funded service that provides free advice and guidance on education and careers to any young person aged between 13 and 19.  Support for young people who have missed out on their education because of illness can continue until the age of 25 if wanted.  As Connexions has so many young people to support, certain groups are being prioritised for their attention, including young people with health needs.  In theory all young people could have a Connexions Personal Advisor (PA) who keeps in touch with them. The reality is that there are not enough PAs to provide the service they would aspire to. Connexions can act as an advocate for the young person with other agencies, eg school and LEA. One parent talked about how she had been having trouble with her child's school. She rang Connexions who intervened and brought a quick resolution to their problem.  So if your child is having problems with their school, or LEA, wants advice regarding choice and availability of educational courses, or needs advice on careers, then pick up the phone and ring your local Connexions. 

The phone number for your local Connexions office will be in your phone book, or you can ask for details as your local Jobcentre Plus.
 

National Extension College - home learning

Speaker - Jo McGowan

The National Extension College (NEC) was set up as a charity to help people of all ages fit learning into their lives. It is a non-profit making trust dedicated to giving people the opportunity to study many courses, including GCSEs and A levels at home.  The student can choose to do as few, or as many subjects as they like. A course has to be completed within two years, but apart from that there is no time-scale for assignments, which means individuals can pace themselves, break their work up into small chunks, and even stop working for a while if they are going through a bad patch. You don't need access to a computer as the course material is posted to you and the student is provided with a tutor who is available to give guidance or explain any parts of the course they have trouble with. Assignments are sent back to the tutor who marks them and returns them with comments and advice.  You can keep in touch with your tutor by post, telephone, or e-mail. These courses are also available to parents, and can provide an opportunity to study from home and gain new qualifications while looking after their children. 

If you have a disability or you are caring for someone with a disability, you may be eligible for a grant towards the cost of your studies through NEC's Equal Access to Open Learning project. For carers the NEC has also teamed up with The Princess Royal Trust for Carers and obtained funding from the Community Fund so that carers can access NEC courses at reduced rates.  This covers a range of courses including GCSEs, AS and A2s, vocational subjects such as bookkeeping or childminding, along with creative writing, counselling, IT and study skills. 

For more details contact:

National Extension College            Tel: 01223 400 200
Michael Young Centre                     Fax: 01223 400 399
Purbeck Road                                 Email: info@nec.ac.uk
Cambridge
CB2 2HN

Notschool.net - an Online learning community

Speaker - Bill Coxon

This is a relatively new venture started in a few areas of the country, but now being gradually opened out throughout the UK. It is aimed at young people who have been out of learning for sometime, to help them re-engage in learning. The young person, known as a 'researcher', has computer equipment installed in their home by notschool.net. The equipment includes an iMac computer, internet connection, printer, digital camera and software. The iMac software includes Appleworks (typing, desktop publishing, drawing, spreadsheet and database programs), iMovie, iPhoto, and Internet browsing software, plus sound recording software Amadeus, and a creative drawing package. This basic kit provides almost everything a researcher needs. More advanced programs such as Macromedia Flash and Adobe Photoshop are available for individual researchers with particular interests and strengths. This equipment gives them access to the notschool.net online learning community. Through this they have access to a huge amount of learning resource, can get in touch with other young researchers, and be provided with support mentors, buddies, and experts in the technology. The researcher can choose to study whatever they like, whenever they like. This form of learning is not geared towards traditional learning and exams. Notschool.net's philosophy is that giving young people the opportunity to research a subject they are interested in will lead the researcher to even further learning and the development of transferable skills.

To find out more about notschool.net you should contact your local authority, Connexions, or you can email queries to: enquiries@notschool.net.

ASDAN - Certificate in Community Volunteering

Speaker - Tom Drywood

Tom is currently working with two AYME volunteers, who will be using their volunteer work with AYME to gain this certificate. The qualification recognises the general skills and good practice that volunteers develop while working as volunteers.  It comprises five separate units:

Preparing to volunteer - Skills for self-management - Dealing with meetings - Working to good practice standards - Understanding needs, issues and responses

The two AYMErs are using the voluntary work they are doing for AYME as evidence of meeting the criteria needed to qualify for this certificate. The beauty of this is that their work not only helps AYME, but also enables them to obtain a recognised qualification. This course familiarises volunteers with working on competence-based awards that can help them progress onto further training and accreditation.  The AYME conference gave Tom a welcome opportunity to meet these AYME volunteers face-to-face, and he was spotted later on in the lounge bar having a quick tutorial with one of them on their work.

For more details contact:

ASDAN                              Tel: 0117 941 1126
Wainbrook House            Email: info@asdan.co.uk
Hudds Vale Road
St George
Bristol
BS5 7HY

The Princes Trust - setting up a business

Speaker - Sheila Edwards

One of the functions of the Princes Trust is to help young unemployed people start up their own business. The Princes Trust has a particular interest in helping young people who have been disadvantaged in some way, such as poor health. The Princes Trust can provide an initial loan of £2,500 at an extremely low interest rate to help set up the business, plus a mentor to help guide you in setting up and running the business. Free legal advice is also available to the young person, and for the first six months a very modest repayment is expected on the loan.

The first step for the young person is to draw up a business plan. This basically means deciding what product or service they are going to sell, and who to. Help is available for them to draw up the plan, which they then have to present to a panel at the Princes Trust for approval.  A grant of £250 can be made for market research to check the viability of the plan. The Princes Trust does not want young people starting up businesses that are going to fail, so if the plan is not viable they will be given advice on what needs changing, and can then represent the plan after making any necessary amendments. 

The beauty of working from home for someone with ME is that they can decide how many hours a day they can manage to work, and opt to give work a miss on the days they are unwell. There are also training programmes available to help young people develop their skills, if they are well enough to attend.

You can learn more at www.princes-trust.org.uk or telephone freephone 0800 842 842 and you will be put through to The Prince's Trust office in your local area.

Jobcentreplus - employment and benefits

Speakers - Peter Briggs, David Crisp, Karen Hern

The idea behind Jobcentreplus is to have a one-stop-shop for people trying to get into employment and needing to claim benefits. In some areas Jobcentreplus offices are already offering a fully integrated work and benefit services, but in others there are still separate Job Centres for seeking employment, and Social Security Offices for claiming benefits. Jobcentreplus will be introduced everywhere in the UK by 2006.

Peter began by telling us about Incapacity Benefit in Youth, which can be claimed by young people aged 16 to 20 who are unable to work for 28 weeks or more because of their health. To make a claim you will need a letter from your GP stating that you are unable to work because of ill health. An assessment is made of the person's incapacity and you might then have to have a medical assessment. As at October 2003 payments begin at £52.40 per week and increase to £72.15.   When you are ready to think about trying work you can retain this benefit for up to 28 weeks, providing you work less than 16 hours a week. This can sometimes be extended to up to one year.

David then told us about Disability Living Allowance, which can be claimed by anyone who needs help looking after themselves because of ill health. The amount you get paid will depend on how much your disability affects you. These payments can be used to pay for someone to provide help with activities you cannot manage by yourself because of your disability, or help with mobility.  David's advice on filling in the form to claim DLA is write about how the illness affects you on your worst days. (For detailed information about ME and DLA, see AYME's DLA guide available from the office.)

Another benefit that you might be entitled to is Income Support.  This is extra finance available to people on a low income who do not work, or who work for less than 16 hours a week. Carers who are unable to work because of their caring responsibilities might also be able to claim.

The message from the speakers was very simple: if you are unsure whether you are eligible to claim any of these benefits, telephone your nearest Jobcentreplus and they will advise you. Alternatively you can also telephone the national Benefit Enquiry Line 0800 882200 or Northern Ireland 0800 220674.  There is no harm in claiming if you are not sure - your application will be processed in the usual way and you will be advised of the outcome.

Finally Karen talked about the Disability Advisers available through Jobcentreplus whose role is to try and help disabled people get back into work. They can provide help in identifying jobs you might be interested in, preparing you for work, deciding how many hours a week you think you can manage, getting training that you might need, attending a job introduction scheme where you attend work for a few days to decide whether this is the type of work for you, help with transport to and from work, and finally help with any special equipment that you might need to enable you to work.

Job Brokers

Speaker - Glyn Jones

The New Deal for Disabled People is a voluntary programme delivered through a network of Job Brokers who have been chosen by Jobcentre Plus because of their experience of working with people with health conditions or disabilities. Their role is to act as a broker between you and an employer in trying to find suitable employment. Initially they will meet with you to try to understand your situation, discover what kind of work you would like to do, give you advice about the local labour market, discuss with you the most appropriate route into employment and agree with you the next steps to take.

As you progress your Job Broker will support you in preparing for and finding work. This could include matching your skills and abilities to the needs of employers, identifying any training needs and working with local training providers to give you the extra support, helping you through the process of applying for jobs, supporting you during your first six months in work.

Your Job Broker will also try to help you with any barriers that might make it difficult for you to work, such as mobility issues or lack of confidence.

For more information phone the New Deal for Disabled People helpline on 0800 137 177 or for speech/ hearing impaired use textphone 0800 435 550.

Further Education and ME

Speaker - Jane Lynds, FE adviser and AYME mum

Everyone will have at least one further education college near their area. FE colleges offer a whole range of courses to any age group, including GCSEs, AS, A levels, AVCEs and other vocational qualifications as well as 'returning to study' short courses. A huge advantage of FE college is that you get to meet other young people, but you need to be realistic about whether you are well enough yet to start campus-based learning. Some FE colleges also offer distance learning options so that you can study from home through the college. So begin by sending off for the college prospectus and find out what courses are on offer. Then there are the following points to consider:

• Are you ready for campus based learning?
  
• Could you attend full time or do you need part time day education?
  
• What times during the day would you be able to attend, eg. would evening classes be possible but not day time?
  
• If you want to pursue vocational training, check how much work experience is necessary and consider whether you would be able to manage that work element.
  
• Consider whether continuous assessment (which can be flexible) or examination-based qualifications would suit you best.
  
• If you don't feel you could attend a campus-based programme, consider distance learning packages or other flexible arrangements.

Think long term - where do you want to get to eventually? University? Work based training? Employment?  Then plan steps to help you get you where you want to be, don't worry about time scales.

You do not necessarily need to get lots of parallel qualifications (especially GCSEs); 4 or 5 - including Maths and English - is usually quite sufficient.  (We know of many AYMErs who have succeeded without any.)

Research all your options and seek advice from Connexions/Careers, Job Centre Disability Employment Officers, College and University Guidance and Support departments, etc.

The Disability and Discrimination Act 2002 means that by law, education establishments have to make reasonable adjustments for disabled students so that they are not discriminated against. The essence of the new Act is that educational establishments now have a legal duty not to discriminate against (treat less favourably than any other student) any student, because of any disability they may have, unless they can "justify" their actions.  The law requires "reasonable" adjustments to be made for disabled students currently attending an educational establishment, those who may be in the process of applying and for those who may become students in the future.  The Act currently includes equipment, from Sept 2004 it will include services, and from 2005 it will also include building modifications.
 
Disabled - definition within the Act is 'sustained, for at least a year or very likely to last for a year, plus substantial effect on the ability to carry out everyday activities'.  Substantial is defined as more than minor or trivial.  This definition does seem to include ME.

Reasonable Adjustments could be -

• Reduction of subjects/units or an extension of time to complete a course
  
• Home tuition to include liaison with subject tutors etc.
  
• Equipment, eg loan of a laptop computer etc.
  
• Examination/assessment consideration eg extra time, rest breaks, separate room, agreement to take exams at home, a delayed start time etc. (Examination bodies do not necessarily at present have to make reasonable adjustments under the law but Colleges have to request and appeal)
  
• Advice and information for tutors about ME and the best approaches to use
  
• Allowances made  for reduced attendance
  
• Help with access to teaching rooms eg lift keys, changes of location for lessons etc.
  
• Enablement/assistance from an in-class note taker, personal care assistant/enabler etc.
  
• Study support eg help with practical tasks, research, planning, organisation and general "study coaching".

For further information contact Jane Lynds, Section Manager Learning Support at Milton Keynes College on 01908 684433 or email jane.lynds@mkcollege.ac.uk

The Open University

Speaker - Ann Glaister, AYME trustee and mother of an AYMEr

I have worked for the Open University for 25 years. Even so, it took a very long time for me to realise that it could provide the route for my daughter, Tessa, to find her way back into education after three years out with ME. Three years further on, and Tessa is now virtually fully recovered and has opted into full time, campus based university at Brighton. She is loving it and I will never forget the day when she phoned from the beach in Brighton, in tears with delight and excitement, to me her that after a long interview she was being offered an unconditional university place.

Tessa had no A levels. She had struggled through her O levels, losing a lot of time through illness, but doing reasonably well in the end. She started on A levels and then collapsed. The ME left her at between 20-40% for a couple of years at least, and the mental symptoms were worse than the physical ones. Total inability to concentrate, to think, to read, even to watch TV. Certainly she was not able to have conversations or to do any school work at all. The school was concerned and offered all kinds of help, but she could do nothing, so eventually we gave up hoping for her to ever get back to school.

As she recovered enough to think and talk about things, we looked at the information offered by AYME's education advisor and we explored distance teaching options. Somehow nothing seemed to quite fit the bill for her. It also seemed quite expensive and quite demanding in terms of her time and energy. Maybe it was all just a bit too soon. More time elapsed and, now 18, with all her friends through A levels and moving off to University, she asked me about the OU options. I got her brochures and she also browsed the website (www.open.ac.uk).

My suggestion was that she start with an Openings course. These are specially designed short access courses (10 credit points) to help people back into studying. They are excellent courses and can act as a taster to find out what is of interest. Support is offered through a personal tutor who makes contact over the phone. No face-to-face meetings or travel is required.

Her decision, however, was to go for a 30 point, level 1 maths course. She felt this would enable her to study in short bursts, as she couldn't manage more than about 10 minutes of concentration at a time. More than that left her with a bad headache and exhaustion for a couple of days. She got good advice from the OU and her tutor was really kind, understanding and supportive when she had to ask for extensions on deadlines (as she did repeatedly). The help offered to her as a 'disabled student' included having a set of materials totally comb-bound so that she didn't have to manage the weight of holding the book and keeping the pages open. All these little things helped her enormously, especially when she was really struggling to cope.

She went to one introductory tutorial, but it took so much out of her that she didn't attend any more, although she did keep in touch with a woman she had met and chatted to at that first meeting. Tutorials are not compulsory, so while she may have missed some help and some fun by not attending, it was not a significant problem. When she needed help or advice she could phone or e-mail her tutor and would always get a prompt response. What was even better was that it was all free. She was eligible for financial help because she was in receipt of disability benefit at the time.

We both gained in confidence as the year went by. She was gradually improving and by the end was able to concentrate for a couple of hours on occasion. Too much could still set her back and treading that line was enormously difficult. She learned to set a timer alarm so that she would remember that she must stop to rest and do no more. That was a very important lesson. She reached the end and passed with flying colours. Wonderful.

We knew at this point that she could continue with this. She could complete a degree with the OU at her own pace and she had a huge array of subject choices. This felt so much better than struggling back to start at the beginning with A levels. Here she could feel like and be treated like an adult and develop adult study skills and knowledge. She changed and blossomed as she emerged from illness and rediscovered her enjoyment of learning. The next course she chose was the level 1 humanities course. This was quite different and much more challenging. It was a 60 point course for a start - requiring about 15-16 study hours a week and with far more assignments to complete. It was also a subject that needed more reading and lots of thinking. But she was ready for it and she had learned how to pace herself. It was very hard work for her and kept challenging her by introducing her to new areas and unfamiliar topics - art, literature, music, history, philosophy. Mind-bending stuff, but now she could handle it. Again she made it - with another very understanding and supportive tutor and lots of extensions - but she got there and did extremely well. She even managed to go to the one week summer school in Manchester and had a brilliant time.

Before she finished this course, however, she began to think about full time study. If she was well enough, she knew she wanted to have that experience of being away from home and going to a campus-based university. We started to explore the options. Not only what did she want to study, but what were the rules and requirements. Some were more explicit than others about how they would respond to disability. She focused on a few places and phoned to talk through the options. We came to realise that the phone contact was important, as it is next to impossible to explain your situation otherwise. She was advised about forms to complete, and where and how to send a covering letter. Brighton University was the most helpful and she liked the sound of their humanities course. She was invited for interview and was offered an unconditional place. At that point she had completed only the 30 point maths course and a few assignments on the next course. I guess she had demonstrated to their satisfaction that she had the motivation and the capacity to pull herself back on track and that was what they wanted to know.

Was it plain sailing from there? Well no, of course there were ups and downs and it was hard that she finished the last assignment only a few days before starting at Brighton! And full time university is pretty demanding on many fronts. She could have asked to transfer up to 90 credit points into her course, but preferred to start from scratch and do the whole thing. She's well into her second year now and going strong.

Looking back I can remember how hard it was and how despairing we felt. It seemed impossible that she would ever make up those lost years. But she has and is now flourishing. The Open University may not be the right answer in every case, as it was for Tessa, but it is always going to be there, available to anyone at any time and with a wide range of types of opportunity.

Some basic facts about the OU

The OU's main purpose is to facilitate study at higher education level for people who have not been able to benefit from conventional higher education. Of course, many other people choose to study further courses with the OU even after graduating because the courses are good and they just get hooked. But mainly it's for those who have missed out.

It is essentially open access, which means that no previous qualifications are required in order to register to study with the Open University. Anyone over the age of 18 is eligible, and younger people are the fastest growing student group in the university.

The OU has a wide range of courses and awards at various levels (arts, sciences, technology, maths, computing, health and social care, education, social sciences, and business studies). It also runs 'Openings' courses, which are designed to support access to higher education.

The OU is purpose-designed for students who cannot or do not wish to physically travel to lectures or tutorials, whether full or part time. This may be because they have a job, a young family to support, or both, or because travel is too difficult or a disability makes it too hard to manage.

The OU has a teaching system that permits students to study at home and very much at their own pace with support and personalised feedback from an individual tutor operating at a distance.

The system assumes that students' life experiences sometimes impact upon their study patterns and have to be taken into account in offering support and guidance.

The OU has strong systems of support for students with special needs and has pioneered assessment and support for students with disabilities.

On top of all this, it is ranked as one of the best five universities in the country in terms of the quality of its teaching. This was in the Sunday Times University Guide 2003 table of universities with the best marks for teaching.

All in all the OU can be a valuable resource and a particularly appropriate route back into education for young people with ME.

Further information is available on the website (www.open.ac.uk) or by phoning. Look up Open University in your local phone directory to get your nearest regional centre.

Dept of Voluntary Sector Studies, University of Wales

Speaker - Jan Jones

Jan talked about the Certificate in Interpersonal Skills for Volunteers. This qualification is specifically designed for students working in the voluntary sector, and on completion can give access to further courses run by the university, eventually leading to a BA in Voluntary Sector Studies. The certificate course can be done from home as distance learning, and is subsidised so there is no fee.

Volunteers world-wide use a range of interpersonal skills in their work, sometimes without recognition. This certificate in Interpersonal Skills for Volunteers aims to teach these skills and help students to recognise and develop their existing communication skills. Students use their experiences from their volunteering work to aid their learning. This Course offers the opportunity to gain recognition by formal validation through a series of written assignments encouraging students to reflect on their role in the voluntary sector.

To find out more about this course, and other courses run by the University of Wales contact:

Department of Voluntary Sector Studies   Tel: 01570 424785
University of Wales                                    Email: enquiries@volstudy.ac.uk
College Street                                            Web: www.volstudy.ac.uk
Lampeter
Ceredigion     
SA48 7ED

Article last edited on Wednesday 29th July 2009                          Printable Version