Back door cuts to Personal Budget and assessed needs

[Dunn62]

I am a full time carer for my 28 year old Autistic son.

Several years ago, During the David Cameron term, He was assessed and given a personal budget which was to be used to help him access and socialise in the community. I was told this was to be used on items such as entertainment, trips away, Fuel and other such activities that would support him accessing suitable activities. I was also told that this arrangement should be so simple to understand that the terms of it, using the PM's own words, should be so simple and minimal that it should fit on the back of a stamp.

The simple running of this personal budget was to be that I spend it on the activities and keep receipts which I then hand in to Local Authority every 3 months for auditing, which I have done so for many years. These receipts are always checked and returned, when approved as being correct and inline with his PB requirements.

My son is also asked to make a small contribution to the assessed cost of his personal budget based on his own income, which was DLA and ESA

I can only go back as far as the past 4 years with the documents I have, but his Personal budget has never ever increased despite fuel costs alone increasing by 20%. Everything else he was assessed to need the personal budget for, have also increased with inflation.

Not only does his personal budget not increase with inflation, but his PIP and ESA, although increasing, do not increase in line with inflation. However the amount he is being asked to contribute to his personal budget has gone from £28 per 4 weeks to £95

When I raise these discrepancies with the Local Authority, the explanations to attempt to justify this are far to confusing to understand, but they appear to have completely changed the description assessment of my sons needs to now simply put it into hours of care required per week. They then dismiss the need for his PB to increase with inflation by claiming Carers pay rates have not increased.

However I am still asked to supply receipts for the items such as his original plan, not for Carers hours.

In short I am not able to put petrol in his tank or access his usual activities and ask them to only charge me 2015 prices rather than 2020 prices because his personal budget has not increased. So his activities are having to be reduced which flies in the face of his assessed needs as a young adult with severe Autism and learning difficulties.

To give some idea of the difference over the past 4 years alone, when taking inflation into account....

His Personal Budget is now £88 below his assessed needs

His benefits are now £35 below

Yet he is being asked to pay an extra £67 towards his PB

Has anyone else been hit with similar cuts and if so what have you been able to do about it?

[Shue Community friend]

Hi Dunn62, mmm, infuriating, frustrating, inadequate are just a few terms I now apply to the benefit system, government and the so called social care agencies that are supposed to support our loved ones. I have had issues with social services and cuts in care package and this after he developed Schitzophrenia on top of all his other complex needs including downs syndrome and autism, they have no empathy and in most cases little understanding of complex needs. My advice is get yourselves an advocate, they will fight your case for you and hold more weight with the authorities than us mere carers who no nought! Google advocates for learning disabilities in your area, there should be several. Good luck and keep us updated.

[Dunn62 in reply to Shue]

Thank you for the reply.

I have a couple of 'advocates' lined up to give me a call back regarding this. Hopefully will get somewhere.

However, what is never taken into account is the sheer stress this puts on carers like myself over time. I have been in and out of hospital this past year with a couple of pretty serious, stress related illnesses and came very close to not making it to Christmas as I was just discharged from Cardio ward the week before.

The added cost this must be placing on the NHS alone is ridiculous, considering it all appears to come down to costs rather than lives.

[Shue Community friend in reply to Dunn62]

Totally agree, it sounds as though like me you put your loved ones needs before your own and not always through choice. Could you try and push for some type of respite while you recouperate or is this not an option. Shared lives carers seems a nicer option as I believe our loved ones a placed within a family unit, I myself may look into it further. Best wishes.

[Picklebum in reply to Shue]

Hi I feel for you

Yes I agree shared lives is the way to go within a caring family I am one myself for the young lady I have in my care

[craftygrandma]

My daughter (35) attends 3 day services per week and her charges from our council have gone from £1.10 a week (5 years ago) to £39.65 a week. The money the government says need a week to live on in care assessment has gone down and as she lives at home (and her name not on any utility bills)they do not count that she contributes to the 'household' eg council tax, bed and board etc. If she is ill or has holidays it still has to be paid. She is waiting to have 2 wisdom teeth out. Has bad earache, on meds, soft food and so not been out of house for 3 weeks except for appts but still has to be paid.