Introduction & Long-term Planning

[Tigsteroonie]

Hi everyone! I'm Mum to an 8yo son who was born very premature and is now Autistic, with severe Learning Difficulties, and who is also deaf through auditory neuropathy. He attends a specialist ASD school, and I've successfully battled our way through a Statement/EHCP. I'm currently battling Children's Services for a decent assessment of our care/support needs. And I'm looking at the future ...

He's going to need Supported Living, there's no way I can deny that or hope for a massive improvement in his learning abilities in the future. We are mature parents (over 40 when we had him), so I don't think that caring for him personally during his adult years is going to be the best plan. Had he been NT, he'd have been going to university at 18 ... I'd like to think that we can still aim for him to start having a life independent of us at a similar age.

But I don't know where to start. I guess being on the Mencap website is as good a place as any. Should I be doing anything now, ready for ten years' time?

[margaret.gould]

Hi there Tigsteroonie,
Welcome to Mencap's family hub! I’m one of the Mencap information and advice officers and we often hear from parents like you who are worried about what the future may hold for their child.

Having the education, health and care plan (EHCP) is a positive step. It will continue until your son is 25 if he remains in education, and there is an emphasis on preparation for adulthood as he gets older. If your son has care and support in place through Children’s Services he should have a transition plan when he is approaching 18. It’s a good idea to start thinking about this well ahead when your son is in his early teens. Of course it’s important to involve him as much as possible so that he can make his own choices.

You can google the ‘local offer’ for your local authority and it will list what services and opportunities there are for children and young people with special educational needs and disabilities (SEND) in your area.

Most people over 18 who get care and support will get social care support arranged for by the local authority or council. This type of support helps people with their day to day lives and supports them to have a good quality of life. The starting point would be an assessment of your son’s needs on a day to day basis. Assessments and care planning must follow the Care Act which came into force in 2015. If he is looking at supported living options your son would need a care plan, so that wherever he lives his assessed eligible support needs can be met.

If you are worried about financial aspects of planning for your son’s future you may be interested in Mencap’s wills and trusts service. The team deliver ‘Planning for the future’ seminars around the country and can advise on things like writing a will and setting up a trust fund for your son.
You can find out more on the website: https://www.mencap.org.uk/willsandtrusts

Don’t forget that if you have any specific queries you can contact the Mencap Direct helpline on 0808 808 1111 and you will be put in touch with one of the Mencap information and advice officers for more in-depth support.

I hope that helps!

Margaret