Riley, a 28-year-old woman with Down syndrome and a learning disability was referred to POhWER for independent advocacy support regarding a decision under the Care Act around where she will live and what support she receives going forward. 

Riley has limited vocabulary and has previously relied on her mother to support her to understand her choices, make decisions, and voice her wishes, opinions, and needs.  

Riley’s mother has stopped acting as Riley’s carer and advocate and wants Riley to make this decision independently of her.

Riley’s parents do not wish to act as Riley’s advocate as they have their own care and support needs.

Tina, an independent POhWER Advocate who had worked with Riley before, arranged to spend time with Riley to engage with her about this decision.
Three options were discussed:

1. Stay living with her parents with support from Personal Assistants
2.  Live in her own flat with support from Personal Assistants
3.  Live in a house with peers and receive support there.

Riley can become anxious, withdrawn, or overwhelmed in unfamiliar or high-pressure situations, which can make communication more challenging for her. As a result, professionals may struggle to gain an accurate understanding of her needs and preferences, increasing the risk of decisions being made that do not genuinely reflect her views.

To support Riley in expressing her views, Tina developed a set of carefully tailored questions accompanied by visuals. This made the process more accessible and less intimidating for her. Tina invited Riley to respond only if she felt comfortable and reassured her from the outset that she could pause or end the conversation at any time. It was also emphasised that there were no right or wrong answers, and that any questions she found difficult could be revisited in a future meeting.

This personalised and sensitive approach significantly enhanced Riley’s ability to articulate what matters most to her. She was able to clearly state, on several occasions, her wish to live in her own flat with support from her personal assistants. 

This housing arrangement will mark a significant step towards greater independence and is expected to improve her quality of life, as it will enable her to move out of her parents’ home and create a living environment that reflects her needs and preferences.

Through consistent encouragement and a personalised approach that respected her pace and abilities, Riley was able to explore her options and clearly express her preference to live in a flat with the support of her personal assistants. This not only promoted her sense of independence but also ensured that future planning was genuinely reflective of her wishes.