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Caring for an older family member with learning disabilities
Caring for an older family member with learning disabilities

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2 Be proactive

Virtually every family we spoke to in our research felt that they had driven any planning for the future. No doubt you will be reaching the conclusion that you need to be proactive – you can’t take it for granted that professionals will take the lead in planning and supporting the person for whom you care.

Activity 2 Becky’s story continued

Timing: Allow 10 minutes

Remember Becky and her mother Sharon from Session 2? You heard Sharon talking about getting plans in place for Becky and using Becky’s annual review to initiate plans for her to move into alternative accommodation within two or three years. You will see what action she did take in the continuation of her story below. As you read, make a note of ways in which she is takes the initiative and is proactive. Think about how you could usefully take similar steps in your situation and add these to your ‘Tips’ notepad or the text box below.

What Sharon did

Becky’s previous annual review had been a very informal conversation with her social worker. In fact Sharon had not realised that it was an annual review. Although Sharon understood that this was probably the result of the pressure on social services, after having taken part in our research she contacted social services to request a date from Becky’s social worker specifically for the next annual review. This took several telephone calls before Sharon managed to arrange this. Before the review she arranged a meeting with Becky’s current care provider to discuss their independent supported living options.

During the annual review Sharon emphasised that over the next two or three years she and her husband want to look at suitable places for Becky to live. Becky always seeks assurance about when she is coming home from her weekends of respite care and her behaviour becomes more challenging to others when she faces changes. They feel this long run-in time is necessary to ensure that she settles into her new ‘home’ without the risk of a crisis arising and an emergency placement having to made. She talked about the steps they had taken to explore options for Becky and that they were keen on the independent supported living available through her current day services provider.

Sharon and Rob were concerned with changes they had noticed in Becky since she started going through the menopause – the episodes in which Becky became stressed or upset appeared to be getting more frequent. Although Becky has had annual health checks with her GP, nothing was mentioned about age-related changes, such as the menopause. Sharon used the next annual health check to discuss this and obtained treatment for Becky. It was agreed that this would be regularly reviewed by a practice nurse.

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Sharon’s actions highlight the value of making use of any opportunities to take forward plans for the future. This is not easy and we recognise it should not be the responsibility of the family carer to do so.

Some things you can do include approaching providers, asking for meetings and steer annual reviews to focus on realising what is important for your family member and addressing issues that are important in your situation. As you can see, this can include behavioural issues that are causing concern.

You can also be proactive around finances. For example, make sure your relative has their own bank account so that their benefits and other payments can be paid into an account which is separate from the family bank account and can be accessed separately. It is worth thinking about getting independent financial advice too. You may want to use an independent financial advisor, and free advice is available from Citizen’s Advice Bureau and Welfare Rights [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] . There are other courses of action you can take too; a good example is when someone indicates they want to leave your family member some money in their will. Encourage them to look into a discretionary trust so that any money inherited does not impact the funding of your adult child’s or sibling’s care. Search for ‘wills and trusts’ on

Central to being proactive is doing a fair amount of making sure your opinion and that of the person you care for is properly heard! This is known as advocating – the next topic.