Advice for a friend

Maisy_Mouse

Hi

My friend is 36 and has 22q deletion, she had a dislocated kneecap and the one leg now does not move on it's own (has to be lifted), the other leg is not very strong, consequently she is now a full time wheelchair user. This has been a deteriorating picture, a few years ago she was walking with walking aids but her leg muscle has wasted and now cannot support her to stand independently. She transfers from the wheelchair into the car and onto other chairs/ into bed etc. But that is the extent of movement she has. She uses a manual wheelchair in the house and a powerchair outside, because she finds it too much to push herself longer distances with her arms.

She also has developed longstanding dizziness after a flu-like infection 10 years ago, so she currently wears a hood or a rimmed hat to help with this in busier places and her dad has ME, so we think she may have inherited a chronic fatigue issue, because she gets ill very quickly if she exerts herself too much. She also has underactive thyroid. She also has quite impairing anxiety (understandably, with all of the above going on) and describes brain fog and struggles to concentrate and take in information after about 2 hrs. She also has dyscalculia and struggles with numbers (although she has done her Functional Maths course which is equivalent to a Grade C GCSE). Otherwise, she does not have a learning disability, is articulate, has a bachelors degree in fine art and has a wide range of interests. She makes and sells greetings cards at local craft fairs.

Currently she recieves PIP (I think the higher level, because of an inaccessible kitchen) but I am not sure exactly which level of PIP.
Currently her mum is her carer, they have a hoist in the back of the car, which her mum uses to get the wheelchair in the car, after she transfers herself into the front seat. Her mum is also carer to another (elderly) member of their family and she has no other family support in the area.
She is due to start volunteering (this will be her first working role since becoming a full time wheelchair user).

My question, is because she has started thinking about what support she will need when her mum is no longer able to care for her. Her mum currently caters for all of her washing, cleaning, cooking, transport needs, mostly because these are inaccessible. She can access her home independently as they have put a ramp in to the front of the building, and they are currently paving the back garden, so this is accessible. She currently uses a bath board to use the shower in the bath, but would be vulnerable if she slipped/ fell or anything. But the kitchen is not accessible and it is difficult to see how she would be able to live independently without some support if /when her mum is not around.

What kind of support is available for her? Would she be able to access some carer support for daily living? Where should we look for this kind of support?

She would prefer to stay in her current home because they own the flat. She is worried about using the buses because of vertigo/anxiety. She has recently reached out to a social prescriber at her local GP surgery, but the lady said there was no funding for transport and no support available and only referred her to employment support and mental health support services.
What would be ideal is funding for an adapted vehicle which she can drive the powerchair into and use independently for getting to work, appointments, social life etc. And also funding to adapt the (very small) kitchen to make it accessible, so she can prepare her own food. I know this is very expensive.

Any advice greatly appreciated.

Thanks

Maisy_Mouse

Thank you @Bluebell21…yes this looks more like it… I will forward this to her… the other thing is whether they will say if her mum is still currently able to be her carer, then she wouldn't qualify for support until her mum is no longer able to do this? But when/where do we draw that line? Do we need to wait for her mum to become ill? She already has a bad back / is over age 70.

I have also found this: https://www.motability.co.uk/
It says you can exchange the Mobility element of your PIP for a WAV (so you can be the driver in your wheelchair), but I have a feeling she's already paying off the power chair using this scheme… I don't know how long it will take to pay this off (I think she's had the power chair a year or so now). But I read that you can't get both a power chair and a WAV on this scheme, would she have to give the power chair back if she wants to get a WAV? but then how does she get in the WAV without the power chair? It's quite a steep slope, and would be tricky (exhausting) to push herself around in the manual wheelchair outside of the house.

Am I missing something? Hopefully. Anyone with some experience of this would be greatly appreciated!!

Thank you! :)

Kimi87

No one is forced into being a carer.

Your friend can simply tell them at the assessment that Mum is no longer able to act in a carer capacity.

Maisy_Mouse

@Kimmy87 , thank you :)

Needhelpandadvice

@Maisy_Mouse It would have been a lot easier for you to have posted your question first, and then included relevant information last.

However, as you say that they own their own home, potentially any alterations maybe down to your friend and also the mother.

Yes, you might be able to get help from social services, but you would be very lucky if that happens, unless she uses her PIP to pay for things.

Social services will usually help people that rent their home, rather than own it.

However, your friend obviously needs

1. Wet room, walk in shower with a seat
2. A lowered kitchen for disabled use
3. I cannot remember your other points, I just checked, what has vertigo got to do with buses? You sit on the lower deck.
4. If something did happen to the Mother, you could become a carer or another family member etc etc, and you would get paid to do that.

However, it depends upon savings and maybe asset's such as owning the home.

It is good to see information, but the question would have been a lot clearer if it had of been at the top, rather than half way down the bottom.

Just a tip for anyone else, or posting in the future.

Hope this helps

Kimi87

@Needhelpandadvice

Not quite accurate. I have a friend in her late 20's, living with parents, parents own the home, she got a

https://www.gov.uk/disabled-facilities-grants

From local council so a wet room could be installed.

In terms of care and support, the first assessment is a needs assessment, then they look at finances to see who funds what.

Maisy_Mouse

@needhelpandadvice Thank you so much for replying and for the advice given. I completely understand that posting the question first and then the information after, would have helped with the clarity of the post. I will consider that for future posts.

Sorry - I also realised I used the words 'dizziness' and 'vertigo' interchangably which confused the meaning. I mean 'vertigo' in the sense of True Rotatory Vertigo (TRV) whereby you get a spinning or tilting sensation, such as when people get dysfunction of the vestibular organs in their inner ear. When my friend is in busy and/or noisy environments with lots of visual input, she can feel dizzy and/or get TRV. This is why she often wears a hood or rimmed hat when out and about.

I cannot care for my friend as:
1) I work full time.
2) I do not drive.

So, if I was to help with meal prep, I would need to live at hers (or she would need to live with me) and that changes our relationship from friendship to carer. If I lived at hers, I would need to leave very early in the morning to get to work, as I take buses and start at 8am.

Her father doesn't live in the county and the only other family member is her uncle who is elderly and also relies on care from her mum.

My friend has told me that whilst on PIP, she is only allowed to build up £6,000 in savings, otherwise this would affect her payments. Basically it would not be possible for them to make really expensive home alterations and purchases without some financial help.

@Kimmy87 Thank you for the link and info about a grant. I think they are planning on applying to a local charity, too. So it is good to have options for this.

Thanks both for your input and advice, much appreciated. :)

Kimi87

@Maisy_Mouse PIP is not a means tested benefit. It is paid regardless of savings or income. You could be a millionaire and still receive PIP.

Income based benefits start paying a reduced rate at £6,000 of capital, stopping entirely at £16,000.