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Exploring learning disabilities: supporting belonging
Exploring learning disabilities: supporting belonging

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3.1 Advocating for life

Many people with learning disabilities rely on their families to advocate on their behalf. This is a role that often lasts a lifetime, and the physical, mental, emotional and financial impact on family carers can be significant.

Activity 5 Parent perspectives

Timing: Allow about 10 minutes

Watch this video from Learn with Us where you will hear short accounts from three parents: Margaret, Jean and Norman. You will also hear briefly from Maureen, a practitioner. As you listen, make a note of any comments made by the parents that really stand out for you. Also make a note of how you think the parents’ lives have been affected by their caring responsibilities. Write your thoughts in the box below.

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Comments that you might have noted down include: ‘horrific’; ‘I feel I am his voice’; ‘lots of tears and anguish’; ‘parents have to become tough’; ‘damages their health’.

You may have identified that the parents experience: constant worry (including when the children leaves home); anxiety about being seen as overprotective; trying to strike a hard balance between advocating but being viewed as ‘interfering’; having their own life chances affected.

Family advocates could be helped by being listened to and developing trusted relationships with services and practitioners. Jean, one of the family carers in the Learn with Us film, said:

The image shows a quote from Jean, a family carer.
Figure 1 Developing trust in services can be difficult for family carers

Self-advocates and family advocates often fight for very specific improvements to an individual’s life. But they also come together collectively to press for wider social change. In the next section, you will learn more about the changing policy landscape in learning disability in recent years, and the impact this has had on people’s lives.