What Next? Moving into Adulthood
What Next? Moving into Adulthood
Last updated: May 2024
These pages cover the topics many young adults told us were the most important things they needed to know and think about. A group of young people and invited speakers talked about many of them at our ‘Moving Forward’ Event in April 2024. A lot of the information shared, and questions asked and answered is included here. Thank you to everyone for taking part in such a great day.
You can find information on other pages in ‘Living with SMA’ about other topics. If we do not cover something you are interested in, let us know and we will see what we can find and add to these pages.
During your teenage years and into adulthood, your body and brain will be going through a lot of different changes.
Transition – Knowledge and Skills in Healthcare talks about the wide range of topics you may want to think and talk about as you begin to decide what matters to you.
Over time you will transition from children’s to adult healthcare services. You will begin to take charge of managing your health needs and making decisions about your care and any treatment.
All schools have to begin to support you to get ready for the education options that are open to you from the age of 16 – 18 years. They also need to provide independent career advice so that you can think and plan what you want to do when you are 16 and older.
If you have an Education, Health and Care Plan (EHCP), planning for transition should start when your plan is reviewed in year 9 (age 13 / 14) and continue every year after that.
What are my Options?
Once you are over 16 and a "young person" you have the right to make your own decisions including deciding where you want to be educated.
You can leave school at the end of the school year in which you turn 16 (normally the end of year 11), but this does not mean the end of education. All young people have to stay in some kind of education or training until they are 18. This can be combined with paid or voluntary work. You could:
- stay on at your school or transfer to another school
- go to a further education college (mainstream or specialist)
- do an apprenticeship
- do a programme of training and work experience
See the tabs below for more information.
Will I get support?
The support you have had does not have to end if you choose one of these options. If you have an Education and Health Care Plan (EHCP) this can continue up to age 25 as long as you still have Special Education Needs (SEN) and stay in some kind of education or training.
Mainstream colleges must support students with SEN in a similar way to schools. There should be a named person at the college in charge of support for students with SEN.
If you have an SEN Plan or a Statement of SEN and this has ended, or you never had an SEN Plan, you (and your parents) can ask the local authority to do an EHC needs assessment to decide if you need an EHC plan.
Contact – Education beyond 16 is written for families.
Enham Trust – a range of services for disabled people age 16+ including advice and assessment for employment and training
Prince’s Trust – Phone 0800 842 842 – for aged 13-30 – free training courses, experiences, support, mentoring and finance
Studential.com – an independent website set up by a former student while he was in the 6th form. Covers a range of topics and articles for students thinking about or doing GCSEs, further education, higher education, apprenticeships and post graduate courses.
UCAS – gives a lot of information links and advice about the range of options open to you – it doesn’t just cover Universities
YouthAction Northern Ireland run a GET SET for Work programme – a regional youth employability programme for young people aged 16 – 24 years who are outside of training employment and education.
This includes any study after secondary education that is not part of higher education (that is, not taken as part of an undergraduate or graduate degree).
There are 3 types of technical and applied qualifications for 16 to 19-year-olds:
- level 3 tech levels to specialise in a specific technical job
- level 2 technical certificates help get employment or progress to another tech level
- applied general qualifications to continue general education at advanced level through applied learning
Many courses in reading, writing and basic maths are free for all ages. For other courses you may not have to pay for tuition if you are under 24 and studying for your first qualification equivalent to GCSE or A level. If you have an Education Health and Care Plan your funding and support can take you up to age 25.
Individual further education providers should have student support services which can provide information about sources of funding for disabled students.
Gov.UK Further Education Courses
Natspec (The Association of National Specialist Colleges) – has a directory and college finder.
16-19 bursary scheme – you may be eligible for this financial help
Family Action – Phone: 020 7254 6251 – have an educational grants programme for age 14 years plus.
Disability Rights / Funding Further Education for Disabled Students
These combine practical training in a job with study.
As an apprentice you should:
- work alongside experienced staff
- gain job-specific skills
- earn at least the minimum wage and get holiday pay
- get time for study related to your role (generally one day a week)
Apprenticeships take 1 to 5 years to complete depending on their level.
England
For more information, including vacancies:
You usually have to be 18 years or older to take a higher education course, which can be part-time or full-time – usually taught in universities, colleges or specialist institutions like art schools or agricultural colleges.
Anywhere providing higher education has a legal responsibility under the Equality Act 2010 to support disabled students. This is both when you are applying to higher education and when you are studying.
Your school or sixth form college will be talking to and supporting all students who are interested in going to Uni or College. They should help you find out which ones offer the subjects and courses that interest you.
You will need to find out which ones can offer you the extra things you need as a disabled student.
You may be eligible for this allowance. You do not necessarily need to know where you are going to study.
Contact Social Services well in advance if you will need a care package to be able to attend University.
Having SMA does not mean you have to restrict your career options; disabled people work in every job sector.
Careers advisors will help you think about what you enjoy, what you are good at and what you might like to do in the future. All the changes in both technology and social attitudes mean that there may be options you’ve never thought of, so talk to friends, family, teachers and search the internet for ideas. Your careers advisor can take you through the options including college, university and what qualifications and training you’ll need for any particular career.
You can also use the nationally available services listed in the Adults/Careers Advice section.
If you have not already opened up the tab Changes to your Body and Brain you might want to do so to see what is going on for everyone during their teenage years. As well as dealing with all these changes, all teenagers are also starting to think about transition at school.
Managing your SMA means your transition at school needs a lot more thought and planning. At the same time you are starting to have conversations about moving your healthcare from paediatric to adult care.
Recognising all the changes you are having to manage and getting support so that you maintain good mental health is just as important as looking after your physical health.
Another big topic to think about – your sexual identity, who you would like to meet, how you might do that and what sort of relationship you would like.
Most young people feel more self-conscious at some time as they get older and go through puberty. They often do not like other people seeing their bodies. Having personal care from another person is probably a necessary part of your life due to your SMA, so this can be an even more challenging time for you.
Some young people continue to feel comfortable with parents and friends providing their personal care and, in time, their partners. Others prefer their care from Personal Assistants (PAs) and to keep things on a more ‘professional’ basis. However, practically it’s not always possible to find good reliable PAs.
Whoever is providing your care, it is important you trust and feel comfortable with them. If you have any concerns at all about the way someone cares for you, make sure to tell and talk with someone you trust.
You can read more about Employing PAs in the tab on the Adults Financial and PA Support page.
How long it will take, what will be involved and how complicated it will be for you to get to drive your own car will vary greatly from person to person. But don’t be put off. There are many different adaptations and gadgets available now.