Making a plan
The change from being a teenager to becoming an adult is often referred to in the world of disability as "transition".
Becoming an adult does not happen overnight. Similarly, transition is a process that should start early and take careful planning.
And it's vital the young disabled person you care for remains at the heart of this. This is often referred to as 'person-centered planning'.
On this page, we'll help you get the transition planning process started.
When to think about planning
If your child has an Education, Health and Care (EHC) plan, transition planning forms part of the ongoing annual review process. Preparation for adulthood starts when the plan is reviewed in year 9 (age 13/14) and continues every year after that.
Similarly, the Care Act ensures that if your child is receiving services for the local authority, there is a transition period into adult services. (See information about a temporary change to these requirements during the Covid-19 pandemic.)
Whether or not these situations apply, it can still be helpful for you and your son or daughter to think about what a happy adult life would look like for them, and do your own plan for the future. This will help in discussions and meetings with others involved in making decisions about your child's support.
There are online templates that you might find useful to help with this.
Below are some key questions to consider:
- What is important to your child (do they have particular interests, routines, favourite places)?
- Who are the important people in your child's life?
- What is important for your child (for example do they need help to stay safe and healthy)?
- How do they communicate with others and what does it mean?
- What does a good day or a bad day look like?
- What skills and abilities does your child have?
- What are their plans and ideas for their future - what would their perfect week look like?
- What help will be needed to make this happen? Over what timescale?
Your child's views and wishes should be the starting point, even if they seem unrealistic or you don't agree with them. If your child has severe and complex needs, they may not be able to say what they want in the future, but you will know a lot about their likes and dislikes and how they communicate with those around them.
You may have your own thoughts about what a good adult life will look like for them. You might also want to ask other friends and family members who know them well, or who are involved in their care and support, for their views.
Be flexible with the plan. Ideas change, new opportunities come up and sometimes things just don't work out. You can revise your plan as often as necessary to make sure it's complete and up to date.
How to make a plan
Write down short, medium, and longer term goals. These will be different for everyone, but a short term goal might be something like making own lunches or doing physio. Medium might be learning to manage travel. And long term could be anything from trying a new activity to moving into their own home.
Focus on one goal at a time and work out what is needed to make it happen. Does your child need to learn any new skills first? What support or equipment might they need? Does anyone else need to be involved? If so, who?
Think about a timescale for the short term goals. These will be steps on the way to achieving the others. Of course, you can set timescales for those too, but that's a personal thing - for some people that's helpful; others find it overwhelming.
Write everything down. Check out life planning templates online or planning apps to find one that works for you. The important thing is to have something to refer back to.
Turn it into action. Write down who will do what to reach the goal, and when you'll review progress. Don't be discouraged - if you don't progress as fast as you thought, just work out what held you up and plan for that next time.
Breaking large tasks into smaller chunks makes things more manageable and can stop you feeling swamped. It's a good idea to introduce your child to planning in a structured way where possible too, as a useful life skill.
Top tips from a parent
Gail is a member of the parent carer forum Oxfordshire Family Support Network. She went through the transition process some years ago.
Here are Gail's tips - from someone who's been there and done it!
Don't panic: take small steps. The whole thing can be pretty overwhelming so look at the things you need to know now and 'park' the rest for later.
The best place to start is to learn about person-centred planning. Even better do a course and learn to think and plan in a person-centred way - we found this particularly useful for our kids as they don't use words to speak, but it's equally useful for everyone else. It also helped us to see them as individuals in their own right and see things from their perspective and this really helped.
Think about what your son or daughter likes doing, what they'd like to do not where they will go, i.e. think about getting a life not a service. It's hard to imagine when your child is at school that there is a life outside educational institutions, and sometimes I think we are looking to swap one institution for another when what we should be looking for is an 'ordinary life'.
Know your children's rights (and yours). It's a bit of a mantra of ours, but knowledge really is power. It sometimes feels as though you need a degree in social and health care to understand the complicated system of adult social care. Find out about the Mental Capacity Act and the Care Act and learn about what benefits they may be entitled to in their own right.
Do your research. Talk to lots of other parents and talk to lots of different provider organisations to get a feel for what they may be able to offer, but go armed with what you and they would like. With a personal budget you need to think of yourself and your child as 'consumers'. There is lots of information and useful websites out there too, so look around for some positive stories to give you inspiration. Look outside the traditional services, be creative and don't be afraid to dream.
Be prepared to 'drive' the process yourself if the school isn't. The process starts with schools but always keep the bigger picture in mind ‐ remember you're planning for the whole of their life not just college.
Don't rely on individual professionals to have all the answers. In our experience, whilst they may have the knowledge in their particular area of expertise they often don't have the required overview you'll need at this stage (very few people will). Also, if they tell you something you think sounds wrong or unfair then check it out because it just might be.
Don't scare yourself listening to other parent's bad experiences. This was their experience ‐ it doesn't have to be yours. Stay positive and look for the positive stories to give you inspiration.
As families of children and young people with additional needs we often become so ensconced in 'service land' we start to use the same jargon and 'service speak' as the professionals who work with us. Think about the language you use - keep it real - would you talk about your other kids or yourself this way?
The following advice was given to us by another parent… "when times get tough and you don't think you're getting anywhere you have to have resolve and persistence - never give up - there is always a way if you stay strong and focussed. 'No' mustn't mean no - it just means let's find another way".
Where can I find more information?
- Talk to your local authority's transitions team or take a look at your local authority's local offer.
- Download our parent guide Services and support from your local authority - England [PDF].
- Read this blog on thinking about tomorrow from Preparing for Adulthood.
- See Together for Short Lives' transition factsheet.
- Preparing for Adulthood have made a DVD about transition to adult life.