Employing a carer / personal assistant (UK)

[As sweet as-pie]

Hi everyone.

I was just wondering if any of you had experience employing a private carer or personal assistant yourself as opposed to being given one by social services etc. I'm in the UK and currently fighting to get disability benefits so I also have no faith in the social system that they'd offer me any actual worthwhile support. I also don't fancy having a carer who acts like such and patronises me because I'm autistic.
I just want someone to assist me in stuff I can't do whilst acknowledging me as an intelligent and coherent human being. I know someone else who's autistic and got someone they know to become their carer but unfortunately I don't really have a large circle and I'm awful at networking. I don't care about them having qualifications or being professional, just someone nice and understanding of the autistic spectrum who doesn't mind doing things for me and getting paid for it.

TL ; DR : has anyone had any experience employing a carer / personal assistant yourself or know how to go about it?

More info:
My diagnosis is "autism spectrum disorder" but I'm considered "high functioning" due to my late diagnosis and education status as well as my overall presentation. I can't do much for myself. I'm getting old now (18) and soon my parent's are moving away so I'll have to fend for myself and I don't think I can do things without having some kind of personal assistant to give me support.
I can't make phone calls or order food / pay for things in a shop due to selective mutism (I've never had a speech / language assessment but I've had this issue all my life) I can go up to a counter but if they talk to me it's just really awkward because I can't reply back. I can't go to the doctor's alone, I need someone to ring up and make appointments for me and also talk to the dr for me when I'm there as a lot of the time I struggle to speak. I can't go on public transport alone at this point either. If I lived alone, I wouldn't be able to go out to get groceries as I find it impossible to leave the house alone as I experience meltdowns and shutdowns and get overwhelmed and disorientated. The other option would be to order food to the house but I can't answer the door either, I just hide.

So I'd need someone to make phone calls for me, come with me to the doctor and supermarket, as well as a few other places. Nothing too heavy. Imo it sounds like a pretty great job description. But I have no idea where to find someone who'd be up for it. I was thinking maybe a university student studying some kind of psychology / social work but I won't be able to advertise to uni students until I become one myself in 2 years. (Don't even get me started on how I'm going to live at uni alone...

Thanks for reading. (also - yes, despite all this, the DWP say I'm not disabled.)

 

[Mr Allen]

Hi everyone.

I was just wondering if any of you had experience employing a private carer or personal assistant yourself as opposed to being given one by social services etc. I'm in the UK and currently fighting to get disability benefits so I also have no faith in the social system that they'd offer me any actual worthwhile support. I also don't fancy having a carer who acts like such and patronises me because I'm autistic.
I just want someone to assist me in stuff I can't do whilst acknowledging me as an intelligent and coherent human being. I know someone else who's autistic and got someone they know to become their carer but unfortunately I don't really have a large circle and I'm awful at networking. I don't care about them having qualifications or being professional, just someone nice and understanding of the autistic spectrum who doesn't mind doing things for me and getting paid for it.

TL ; DR : has anyone had any experience employing a carer / personal assistant yourself or know how to go about it?

More info:
My diagnosis is "autism spectrum disorder" but I'm considered "high functioning" due to my late diagnosis and education status as well as my overall presentation. I can't do much for myself. I'm getting old now (18) and soon my parent's are moving away so I'll have to fend for myself and I don't think I can do things without having some kind of personal assistant to give me support.
I can't make phone calls or order food / pay for things in a shop due to selective mutism (I've never had a speech / language assessment but I've had this issue all my life) I can go up to a counter but if they talk to me it's just really awkward because I can't reply back. I can't go to the doctor's alone, I need someone to ring up and make appointments for me and also talk to the dr for me when I'm there as a lot of the time I struggle to speak. I can't go on public transport alone at this point either. If I lived alone, I wouldn't be able to go out to get groceries as I find it impossible to leave the house alone as I experience meltdowns and shutdowns and get overwhelmed and disorientated. The other option would be to order food to the house but I can't answer the door either, I just hide.

So I'd need someone to make phone calls for me, come with me to the doctor and supermarket, as well as a few other places. Nothing too heavy. Imo it sounds like a pretty great job description. But I have no idea where to find someone who'd be up for it. I was thinking maybe a university student studying some kind of psychology / social work but I won't be able to advertise to uni students until I become one myself in 2 years. (Don't even get me started on how I'm going to live at uni alone...

Thanks for reading. (also - yes, despite all this, the DWP say I'm not disabled.)

I have been strongly considering it for years, but the paper work would send either me or my Parents to the "Funny Farm"

It would solve a few problems, such as care companies who have an annoying habit of changing calls at VERY short notice, or the fact they run such a tight ship that if one member of the "crew" goes off sick, the ship sinks, because they cannot provide cover for that sick staff member.

 

[Streetwise]

Hi everyone.

I was just wondering if any of you had experience employing a private carer or personal assistant yourself as opposed to being given one by social services etc. I'm in the UK and currently fighting to get disability benefits so I also have no faith in the social system that they'd offer me any actual worthwhile support. I also don't fancy having a carer who acts like such and patronises me because I'm autistic.
I just want someone to assist me in stuff I can't do whilst acknowledging me as an intelligent and coherent human being. I know someone else who's autistic and got someone they know to become their carer but unfortunately I don't really have a large circle and I'm awful at networking. I don't care about them having qualifications or being professional, just someone nice and understanding of the autistic spectrum who doesn't mind doing things for me and getting paid for it.

TL ; DR : has anyone had any experience employing a carer / personal assistant yourself or know how to go about it?

More info:
My diagnosis is "autism spectrum disorder" but I'm considered "high functioning" due to my late diagnosis and education status as well as my overall presentation. I can't do much for myself. I'm getting old now (18) and soon my parent's are moving away so I'll have to fend for myself and I don't think I can do things without having some kind of personal assistant to give me support.
I can't make phone calls or order food / pay for things in a shop due to selective mutism (I've never had a speech / language assessment but I've had this issue all my life) I can go up to a counter but if they talk to me it's just really awkward because I can't reply back. I can't go to the doctor's alone, I need someone to ring up and make appointments for me and also talk to the dr for me when I'm there as a lot of the time I struggle to speak. I can't go on public transport alone at this point either. If I lived alone, I wouldn't be able to go out to get groceries as I find it impossible to leave the house alone as I experience meltdowns and shutdowns and get overwhelmed and disorientated. The other option would be to order food to the house but I can't answer the door either, I just hide.

So I'd need someone to make phone calls for me, come with me to the doctor and supermarket, as well as a few other places. Nothing too heavy. Imo it sounds like a pretty great job description. But I have no idea where to find someone who'd be up for it. I was thinking maybe a university student studying some kind of psychology / social work but I won't be able to advertise to uni students until I become one myself in 2 years. (Don't even get me started on how I'm going to live at uni alone...

Thanks for reading. (also - yes, despite all this, the DWP say I'm not disabled.)

we advertised in the job centre !but you might be more successful ,,I think more people would want to help you, we had quite a few replies don't be put off by what I've said !my mother has a physical disability from a progressive disease and it wasn't easy work! and it was a basic wage offered! keep fighting to get ESA !I was turned down but given it on appeal! I went to a local welfare centre and they helped me or a law centre!
I don't know what the Basic wage is now !

 

[Mr Allen]

we advertised in the job centre !but you might be more successful ,,I think more people would want to help you, we had quite a few replies don't be put off by what I've said !my mother has a physical disability from a progressive disease and it wasn't easy work! and it was a basic wage offered! keep fighting to get ESA !I was turned down but given it on appeal! I went to a local welfare centre and they helped me or a law centre!
I don't know what the Basic wage is now !

Basic wage is £7.50 an hour, well it was when it first came in, might've gone up a tiny bit by now.

 

[Gracey]

If it makes things any easier,
Check to see if your gp practice offers an online service for appointments (mine does)
And the lady I now see at my gp’s makes my next app’ whilst I’m in the room with her and hands it to me.
She’s brilliant.

She’s also mentioned I can email/snail mail her at the surgery when I can’t phone or leave the house.
Takes a whole load of pressure off

Check with your practice to see if they offer anything like the above?

 

[LucyPurrs]

Have you ever considered learning sign language? If you could sign then you could carry a card to show shopkeepers etc saying you sign. They could give you something to write on if they don't sign. Just a thought re making your life a bit easier.

 

[Streetwise]

or you could go to your doctor and get referred to a neurologist !then they might be able to give you an iPad with an app !so it could speak for you !people with motor neuron disease in the UK get them for free .
what I do with deliveries is put in the request instructions box just leave in the porch ,all you have to put is leave it in a safe place so you wouldn't have to talk to them.

 

[the_tortoise]

If I lived alone, I wouldn't be able to go out to get groceries as I find it impossible to leave the house alone as I experience meltdowns and shutdowns and get overwhelmed and disorientated. The other option would be to order food to the house but I can't answer the door either, I just hide.

Look into grocery delivery services, you order online and they often will just leave the box of groceries at your door.

For the carer/assistant, i don't have ideas about where to find one but i suggest having someone help you to interview/vet people if you have any doubts about your ability to read people and/or do a background check to protect yourself.

 

[Streetwise]

I forgot if you could afford Amazon they deliver groceries !if it's in your area ?!and I think they would just leave them the other supermarkets want a signature.

 

[the_tortoise]

I forgot if you could afford Amazon they deliver groceries !if it's in your area ?!and I think they would just leave them the other supermarkets want a signature.

do you not have places in the uk that are just online+delivered groceries -- that deliver from a warehouse and do not have even have a store for in-person shopping?

 

[Streetwise]

do you not have places in the uk that are just online+delivered groceries -- that deliver from a warehouse and do not have even have a store for in-person shopping?

yes but they are more expensive Amazon are doing one but only in certain areas of the uk not everywhere! and the choice is limited .
apart from that it's organic which is expensive if you're on benefits

 

[the_tortoise]

yes but they are more expensive Amazon are doing one but only in certain areas of the uk not everywhere! and the choice is limited .
apart from that it's organic which is expensive if you're on benefits

oh, i didn't know they were all organic....seems they are here, too.

They should have non-organic outfits that do the same thing.

 

[Streetwise]

with The amount of unemployment in the country I'm amazed there is anybody working in supermarkets at all it's a thankless job
it's legalised slavery ,some delivery employees actually don't have time to go to the toilet ,one employee defecated on somebody's driveway into a bottle !because they are so frightened to take a break.
there are a food deliveries that are non-organic but you have to sign for them.
sometimes the supermarket machines don't work so you don't have to sign which I love .
I think some of the delivery companies have realised I don't answer the door so they just leave it in the porch .
that happens when I have a bad period of panic attacks ,other times I take in parcels for other people ,I don't like to think of the waste of gasoline coming back to redeliver it.

 

[SusanLR]

@As sweet as-pie sweet
Sounds like you have a mixed multitude of what would be called disablities in USA. I have never lived alone and don't think I would be able to handle it either. But, I am not 18 and have physical disablities also.

Your age is still young enough that in time with help
you might be able to live on your own. Only time would tell. But, in the mean time you need help.
If you can afford private pay help that would be what I would choose. Don't know how it works in UK even if you could get disablilty.
Here in America, I have checked into this type of resource also. I have disability and the only things it gets here is either a place to live in a group home if you can't live alone or if you can live alone they do provide people to help with household chores such as light house work, cooking and transportation to medical appointments. There are some volunteer organizations that will help with getting groceries or driving you to get them.
That's about it here. Advice to me was "you can dial 911 can't you?"

 

[xudo]

Basic wage is £7.50 an hour, well it was when it first came in, might've gone up a tiny bit by now.

It's still £7.50, but it goes up to £7.83 on 1st April this year.

 

[Southern Discomfort]

I know Jamie Knight, a guy who is relatively famous in the autism circle, uses a baby sitter to help him get certain things done. He has a website, Spaced Out & Smiling. Might be helpful for getting a few ideas.

 

[As sweet as-pie]

I know Jamie Knight, a guy who is relatively famous in the autism circle, uses a baby sitter to help him get certain things done. He has a website, Spaced Out & Smiling. Might be helpful for getting a few ideas.

Honestly, I find the entire tone of his blog patronising. I understand that him and many others may find regression a useful coping strategy but to conflate it with autism is completely inaccurate and doesn't help with the societal infantilisation of us as a whole. Thanks for the resource though.

 

[Southern Discomfort]

Honestly, I find the entire tone of his blog patronising. I understand that him and many others may find regression a useful coping strategy but to conflate it with autism is completely inaccurate and doesn't help with the societal infantilisation of us as a whole. Thanks for the resource though.

Yeah that's fine. And also understandable.