Carers Allowance should be increased

[Noras]

Recent events on Mumsnet has made me even more upset about continuing to be a carer for my adult son. There are many carers out there doing the job voluntarily. Their kids are adult and there is no duty of care owned by adults. Moreover there is no asset against which the state can claim against for social care. The decision to care for our off spring is a fervent belief this is best for the time being.

Whilst my son lives at home I get £81 carers allowance a week. If my son lived in supported living I would

Be able to charge £15 per hour carers rate (including holiday and pension).

Be free to choose my hours and never have to worry about cover to go out - that is the States duty of care

Can opt never to have to complete a pip form or universal credit form again - leave it to another carer!

So the push is for me to want my son either on social housing or supported living

Caring duties include

Sourcing and recruiting PA / interview / draft advert and check applicants etc

Send out contracts to PA’s

Chase and send in timesheets

Train PA on how to deal with DS

Draft comments and arrange attendance at EHCP reviews. Chase updated EHCP and check it for amendments and liaise with council etc

Apply for transport for college - if needs be advocate. Liaise college and transport and taxi driver for changes of which there are many
Weekly exchanges of chase up and changes

apply for Pip - complete lengthy form. Be available for interview and conduct interview - DS clearly can’t

Universal credit - apply - argue legal points if necessary - administer funds - set up bank account for DS and administer it via a monintjon or poa

Care

Take for hairdressing appointments
Cut finger and toe nails
Hold tissue and encourage to blow nose as required
prompt shaving and if needs be husband shaves him
grapple with him and insist clothes are changed
laundry
take to dentist and keep eye on teeth cleaning
laundry
clear blocked toilet
prompt meds when constipated or asthmatic and hands on care with cold as he can’t blow nose

Supervision

Stop overeating and monitor diet
Stop crazy eating eg microwaved salad or eating microwaved tuna and sweetcorn at midnight
check his desire to experiment in kitchen
discuss and practice food cookery and what he will do at residential
Ensure healthy diet because that would not otherwise occur
Stop him cutting bread rolls whilst in hand
shopping/ clothing

do all clothes shopping
check wardrobe periodically to ensure shoes js clothes all fit still - he cannot seem to vocalise that need well

Toileting

Be on hand to unblock toilet and clean mess

Activities

Organise all his activities to encourage socialisation eg disabled group or drama group - this includes research for holiday activities

Get debrief form Pa re activity

Liaise with social groups eg one council one needs to know if taxi required weekly etc

Receive feedback form groups re how he is doing/ accessing community

Help with social disabled group so organise an event or two ( to make these things happen)

Take to the gym to swimming to maintain health - this involves micromanagement in say swimming pool

Take out on bus to train and persevere with this
Make him experience busy bus times

Train how to do shopping and wait for change

math skills - ongoing - mental maths an issue due to lack of working memory on 2 and 4 percentile - yet he can do algebra and has a gcse!

Try to train to use Apple Watch as he won’t wear a tracker ( we bought it for him with our own money!)

training - social interaction eg on dog walk or in shops etc

Also keep up to date on all learning activity opportunities and be excellent welfare / eduction lawyers advocates

Finally be there every evening and night due to his anxieties and vulnerabilities unless relieved by PA or activities so I CAN HAVE A GLASS OF WINE

Pay rate £81 per week

as opposed to several hundred for fewer hours work and shared load in supported living / social housing

I agree, plus carers allowance is a trap.

Because all the political parties read mumsnet and take note of it.

I cared for my adult son until 18 months ago. Due to the total lack of day services or support for those living at home we decided to look at residential. My son could not continue to sit at home day in and day out doing nothing as it’s impossible for me to take him out on my own. We spent a year looking and found a perfect place. He has very complex needs and has 1:1 support most of the day, goes down to regular support over night. His care package is in excess of £6k per WEEK. I said to the SW that if they offered parents even half if that they could move to a bigger house and employ their own carers, build an annexe, even rent another property and employ carers. The system is broken.

Do I believe carers allowance bus too low yes .. however your rant does no favours . This is your child so we will always be involved to greater or lesser extents.

some of the things you write concern me . Grappling to change clothes . Ensure his shoes fit well . My Ds is on higher rate care on pip however he is over 6ft . If he won’t change clothes I need to find a better way . Assuming your Ds is an adult his feet will have stopped growing .

I know been a carer is exhausting but sometimes you are not helping yourself . Carers are on nmw - why would a mum be paid more?

Why?

elaborate please

My family ( of which I am many) paid my dads IHT bill - that shows we did not try to use some odd trusts to avoid etc as many do on mums net

I have many siblings - the state got more the to got - put it that way. I don’t begrudge that because it’s needed.

As my father said ‘people have to pay tax’

I don’t have to care for my son. I can flatly refuse I can care for him and claim an hourly rate if he lived elsewhere.

For the avoidance of doubt many people do exactly this. I find it perverse that we have a system that encourage people to put their disabled adult kids into social housing or supported living and then claim an hourly rate for PA care given.

Totally get this OP. We have a weird system where there is almost no help for families which then means adults end up in state care, costing far more. It’s only cost effective for the givernment because so many families continue to care for their adult disabled kids against all odds and to their absolute detriment because they love them. But we will have some truly appalling situations in 10 or so years if nothing changes with elderly people found dead after a heart attack, weeks later and a disabled adult left traumatised with the body. It’s not a long term solution. There needs to be decent adult care for disabled adults with learning disabilities that involves families closely but isn’t reliant on an increasingly frail elderly lady.

I don’t think the political parties are all sitting basing their policies on Mumsnet

Carers allowance is not minimum wage.

My DS is also high needs for many reasons

grappling can be psychological eg persuasion

• it means struggle to deal with or overcome a challenge

If carers allowance was minimum wage, parents of adult DC would be getting £1441 a week. Assuming they're doing 18hour days and their adult DC is at home (some do more, some do less, to work this out I didn't include the time the DC is asleep but you'd still have to be on call)

Bit different from £81!

@Doodahday88

It is a weird system. My uncle is a carer for his disabled wife. What he wants is one day off a week and approx 3 weeks annual leave. He is content to do the rest.

But social care seem to want to either do all the care in a care home or none.

I'm not trying to be that person but just incase you're sending your list somewhere you've repeated a couple of points

And yeah you're not paid enough

Yes, it’s madness isn’t it. Of course he should get respite care.

Carers allowance should be increased and it would benefit all of us. Here is why:

Hospitals are full of elderly people who cannot be discharged without either having a carer at home, a residential place or a care package.

People cannot afford to live on carers allowance, so they are forced to work rather than care for their relative.

Residential place or care package it is then - but there is a massive shortage of availability. People remain in hospital beds when they could be recovering at home.

You or I go to A&E and sit for hours or days...partly because the place is stuffed with people waiting for beds.

The only remedy for the impact of our ageing population on the health and social care system is to allow families to do the brunt of the work, but they have to be paid fairly for it. At least a living wage.

It's £81.... so what are you hoping it will go up to? £85? £90 maybe?

I doubt there would be a massive leap

As an example - my son has these nocturnal moments so weekly now we are still having to get up and make sure he is in bed. I can’t relax with him wandering around the house. It’s quite tiring when you hear that at 2am. it then knocks out the next day.

Even when he is at life skills you get the anxiety phone call not once but several times eg I’m waiting for the bus. I’m on the bus, I’m back at the base.

My summary was an outline. I can go into more specifics and a blow by blow of the time.

The shoe thing was exactly what happened as trainers are all odd sized and don’t equate to normal shoe sizes so we still have to check them and had to throw away/ donate to charity some perfectly good ones that were not correctly sized. He said they were ok but they were not. I guess if we stuck to the same brand it would not be an issue so much but he has to be allowed to choose and not be ‘grappled with’ If shoes are so easy why do we all have to try on shoes when we buy them as adults? How many times have they not felt right despite being your size? Even within brands they vary due to different suppliers. So another daft comment from a person who no doubt still tries on shoes themselves like the rest of the planet.

Wow. Absolutely unnecessary. Reported.

Can you claim universal credit along side carers allowance? My dad did this when caring for his mother, although he rents so maybe that helps?

CA is deducted £ for £ from UC.

Personally it would suit me fine to have a low tax economy and a small state. But I don’t vote for that.

I think it would make society even more unbearable.

I am just amazed that carers allowance is so low and I’m incentivised to put my adult son into social housing or supported living. That will cost the State far more. it seems crazy.

As it happens as part of his development it will be best for him to go into independent living at some point shortly to continue life skills. It’s choosing when would be best to ensure his mental and physical well being. At that point I can choose to claim an hourly rate - it’s all quite perverse really - less care / more money. Also I don’t have the limit on earning.

Sp I’m not arguing this point for myself but others in my wake so to speak. Nothing will happen by the time my DS is living independently with support.

Im happy to put myself on the parapet today to be abused whilst showing what a crazy system it is for all the other carers out there. For adult children carers there is a clear push out of the family home at 18.

CA isn't meant to be payment for a job, it's compensation for not being able to get a job. That's why you can't get it at all if you're over pension age.

I completely agree that the amount is ridiculously low but an argument about paying for hours worked isn't going to get anywhere.