Independent living — Scope | Disability forum
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Independent living

Hello, I wonder if anyone can offer some advice?

I'm 29, have Fibromyalgia and live with my parents who both work full time.

I have ESA at Support group level but turned down for PIP.

My parents do most things for me (cook, clean and help wash my hair) I can bathe ok (with a handrail to get in and out) but as we only have a bath, I was hoping the housing association could help with a shower. 

The occupational therapist recommended a shower head over our existing bath so I could sit under it. I don't want to lose the bath as it helps with muscle pain.

The housing association have refused but the OT suggested the facilities grant. However, this I assume is based on household income which means we wouldn't qualify. My parents are near retirement and are concerned about doing this privately if we have to move in a couple of years.

I can't seem to find any other help available. As I live with my parents, it's assumed I don't need help but I can't live independently. I'm a burden to them and it's embarrassing. For example, I need someone to help wash my hair, do my laundry and change my bedding. I have to make sure I'm home when they eat dinner (as they do me a portion) so I make sure I have a meal.

What else is there to help me?

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