Planning the Future

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.”

 Michael Nelson, September 2019