Do you worry about what will happen to your disabled child when you are no longer able to care or be involved? The “Carers Together” team at Sheffield Mencap has over 15 years of experience of supporting the carers of people with a learning disability and/or autism. We asked them for some practical steps that families can take to start preparing for the future. Here’s what they told us.
There is no ‘right’ time to start planning for the future, but it can help to start thinking about whether you have the right support in place now and what would happen in an emergency. It can be helpful to think about this before starting future planning.
Step 1: Get the right support in place
It can be hard to think about the future if your young person is not being supported to have a good life now. Making sure that the right support is in place for them now helps build strong relationships between services and helps families to have the confidence to make further changes when the time is right.
If you think your young person needs or will need support from adult social care, you could request a referral to the Preparation for Adulthood Team. You could also ask the Sheffield Carers Centre to carry out a carer’s assessment, but please note that this is only available to carers of adults.
Step 2: Plan for emergencies
Preparing for emergencies and thinking through ‘what if’ scenarios is a key step in getting ready for the future; it hopefully brings some reassurance to all, as well as providing key information for long-term plans. This could include making an emergency plan that sets out how long (if at all) your young person can be on their own safely, what daily tasks they need help with, how they communicate and other issues. The emergency plan should be shared with various key people, like your social worker, GP, emergency contacts and family members if they are part of it.
The Sheffield Carers Centre and the Carers Together team (see box) can help you create an emergency plan.
Step 3: Prepare for the future
Once you have the right support in place to continue to cope now and feel more confident about what will happen in an emergency or crisis, the following tips will help you to plan and prepare for the longer-term future:
Start talking and listening: It can be hard to discuss some of these issues and it can feel overwhelming. However, it is important to have these conversations with other family members, as people may have different ideas or expectations of what will happen in the future.
The Carers Together team (see box) can help you with this.
Find out about housing options and how to access them: Have a chat with your child’s social worker, care manager or carer support worker (if they have one) about what accommodation options are out there. Sometimes families like to visit different types of accommodation so they can get a better idea of what’s available.
For more information about housing options, see the Local Offer website.
Put your financial affairs in order: Make a will and consider setting up a Discretionary Trust if you are thinking of leaving any money or property to your disabled child. By setting up a trust, you ensure that their inheritance does not affect any means-tested benefits they receive. Similarly, it is worth looking at appointee services and starting to get advice about who is available to support your relative to look after their finances in the future.
Mencap’s Wills and Trusts Service offers help and advice, including online seminars and downloadable guides.
You could also book a 1:1 legal advice session with the Sheffield Carers Centre.