Independent living

Jurph

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?

Jean_OT

Hi @Jurph

The disabled facilities grant (DFG) would be based on your income not your parents. You can find more information about DFG's at:

https://www.scope.org.uk/support/disabled-people/disabled-facilities-grant

Sometimes people fund adaptations via a grant from a charity. You could use the grant search tool at:

https://www.scope.org.uk/support/disabled-people/search-grants

to identify charities that you might wish to apply to. However, it is unlikely that they would fund the work unless you could evidence that you had been unable to get a DFG to pay for it.

Hope this helps

Jean

Jurph

Thank you. I'll start with that as it's the most important.

Is there anywhere else I could get help? Perhaps financially?

Jean_OT

Hi @Jurph

Check that you are getting all the benefits that you are entitled to:

https://www.scope.org.uk/support/disabled-people/benefits/check

On the Scope website there is a section that may be of particular interest to people new to the world of disability who are unsure what help they may be able to access:

https://www.scope.org.uk/support/disabled-people/becoming-disabled/overview

Best Wishes

Jean

Jurph

Thank you. I've checked and the only 2 I could possibly get is ESA and PIP. I've been turned down for PIP and currently waiting for a tribunal date.

I'm not entitled to anything else because I live with my parents. I feel so stuck. I give my parents most of my ESA to help with all the bills but there's nothing else.

I'm stuck fast. I'm warm, dry and fed and I'm very grateful but I've got no independence or quality of life. 

My parents are nearing retirement and they're exhausted having to work full time then cook for me and help me wash my hair. There's no way they'll be able to do this in a couple of years on a state pension.

The only way I can think of to releive their stress is to leave.

whistles

Would the shower mixer taps work for you? 
It just runs off the taps itself. No actual shower box unit on the wall.
You ask for permission I guess to change the taps?

Failing that a portable shower which means you own it and take it with you. No structural changes. It sets up wherever. Just look into the camping departments. It's amazing how much stuff is available that's useable, movable and lightweight.