Planning the Future
- People with learning disabilities being able to talk about their future and plan for it
- Families having clear information and getting support when they are planning the future
- Services for young people and adults signposting families to information they need to plan the future
- Having practical information to help plan moving into adult life (often called transition)
- Families having a plan in place for emergencies, such as going into hospital
- Having access to local events and workshops to help people with learning disabilities, family carers and people who support them to make provision and/or plans for the future
- Families know about the Mental Capacity Act and Care Act and understand their rights to be involved in making decisions and shaping support
How we can help
Together Matters is able to help in a range of ways including:
- Organise and run workshops and information days for families
- Train carers’ centres, care managers, advocacy and family support organisations to use the Thinking Ahead Planning Guide and I’m Thinking Ahead
- Work with advocacy organisations and day centres to use I’m Thinking Ahead
- Run workshops to help families make a plan for emergencies
- Run workshops for families on the Mental Capacity Act and the Care Act
- Run workshops for 14-25 social workers to introduce them to the guides and provide ideas about how they can be used to contribute to the Preparing for Adulthood agenda
Michael Nelson’s experience of using the Thinking Ahead guides
Michael and Doriel have 5 children, the youngest, Lewis, is 22 years old and has autism with moderate learning difficulties.
“When Lewis was first diagnosed at approximately 4-5 years old, we were devastated, although we knew something was not right with his development. Even at that time, our first thoughts were would he be able to work, live a ‘normal’ life and what would happen to him when we had passed. We had no reference as to what the future would hold and, in retrospect, we realise that the journey is different for all families. Lewis has grown up to be a very likeable adult who attended a specialist autistic school, college and is now starting an internship at a local hospital. We have achieved all these placements by ‘fighting’ with the authorities to get the support he’s needed.
All the time we were achieving these milestones in his education, bringing up our other children and holding down our careers, we still had the same nagging doubts about planning for his future but never seem to get started. One of the biggest steps involved discussion about getting older and bereavement. Our other children were always quick to state they would look after their younger brother, but we realised this was impractical once they were in relationships and had their own family. When talking with Lewis about bereavement and where he would like to live, he said “not to worry, I’ll die at the same time as you”. Not the practical solution we were looking for!
Someone recommended we talk to our local Mencap about independent living options and it was there I was given a hard copy of ‘Thinking Ahead: a planning guide for families’. This has been our bible for the last few years. It is not necessary to follow it linearly, but we jump in and out of the relevant sections as and when.
The Making Decisions section gave us the tools and legislation to assist in submitting applications for services. We also took out Lasting Powers of Attorney for Lewis and ourselves for both financial and health and welfare. This helped in opening bank accounts, online access, medical reports etc.
We went ahead and produced our wills, put a Discretionary Trust in place and had discussions with all the family re the appointment of trustees and executors. After this, some of the children admitted they had been worrying about what would happen to Lewis after we passed and were relieved that we were formulating a plan. His aunty in Devon was involved in discussions and this has led to Lewis choosing to spend a week with her each year whilst my wife and I have a holiday.
The emergency plan is in place and kicked into place when I had severe flu and my wife was rushed into hospital early one morning: our older sons went to hospital and our home and everything was okay after 24 hrs. We have also set up processes with neighbours to help in emergencies.
We realise that independent living is a slow and long process and we commenced this some years ago and are now waiting for the occupational therapist assessment.
All of these processes can be monitored in the final chapter of Thinking Ahead, which acts as a checklist where we can enter dates and names of professionals we have met.
We have recently discovered the ‘I’m Thinking Ahead’ guide which is a very useful, person-centric and dynamic document. It makes it easy for our son to express his likes and aspirations and note any changes to his wishes as he grows older (this could be a very valuable tool for an annual EHCP). The section on How to get the right housing and support is helpful for Lewis to think about what he needs in relation to moving home. We are still thinking ahead re future work opportunities.
We would thoroughly recommend these guides for families with SEN young adults as it has given the whole family peace of mind and put a lot of our own anxieties to rest.”
Resources to help
We have listed a range of free resource material which you can download by clicking on the link.
A guide to support families in talking about, and planning for, the future. Download this version to read, save to your computer or print.
An easy to read book for people with learning disabilities to help to think and talk about plans for the future. Download this version to read, save to your computer or print.
A guide to support families in talking about, and planning for, the future. You can download and save this version on your computer, write your ideas in the tables and templates and save for future reference and updating.
Thinking Ahead, individual sections of the guide (rewriteable version):
An easy to read book for people with learning disabilities to help to think and talk about plans for the future. You can download and save this version on your computer, put your thoughts in the tick-boxes and tables and save for future reference and updating.
I’m Thinking Ahead, individual sections of the guide (rewriteable version):
A short report about the research and development work behind the planning guide as well as recommendations to implement good practice in planning the future in your area.