Benefits, contributions and inflation. What help is out there?

[Galwaybay2]

Is Mencap or any other group campaigning to protect disability benefits from inflation and clawbacks from Social Services? My adult son is in supported living, I still manage his money and have seen how it is becoming less easy for him to replace items, (he has to buy furniture etc), access some social events, (like others in society), and pay for modest holidays when any benefit increase is lost to increased contributions to social services. Of course he can rely on family to help, but why should he and what if it's not available?

This is a downward trajectory into poverty. I have seen this decline over recent years as my son's direct payments have stopped, his much needed one-to-one support hours have been reduced and as his mental ill health meant that need for extra support, increased. All the hile household bills and outgoings have been increasing. I am deeply concerned that without a concerted effort this will be overlooked and that this may be a good time to bring this to the attention of government forced to look at social care costs. I have always been grateful that we live in a society that looks after its vulnerable but I'm really worried.

[Jofisher]

Speak to Mencap does he have an Advocate as well as yourself it might be worth seeking one out for him to give you some moral support as well and join any LD carer groups and try and find out what they’re doing or where you can go to challenge these things

[Galwaybay2 in reply to Jofisher]

I'm pretty much on top of those things having been doing this for 33 years. It is a general issue that needs some urgent attention.

[Dolton in reply to Galwaybay2]

You are absolutely right. This is a crisis of massive proportions and "talking to Mencap" will not solve it. I too am interested same position with my son. I manage his finances and recently saw on here someone from mencap actually advising people to approach Client Financial Services at their local council to have them manage money for their learning disabled relative. That is the worst piece of advise I've ever heard- like asking the fox to look after the chickens. A few years ago I was desperate to be relieved of the pressure of handling my son's finances and CFS just took thousands of pounds from my son's savings to give to the "Fairer Charges Unit" - these are the people who claw back money for the "services" provided to them by Social Services. No-one asked his Care Manager, me or the Service Provider about Disability Related Expenditures which reduce the amount they can claw back. I found out purely by chance and it took me 2 years to get that money back. It won't go down so well on this forum but I really think some charities have become part of the problem is some ways. This is an attack on the most vulnerable in our society and there are precious few voices out there sounding the alarm. A whistle blower in one local authority about this abuse was hounded out of his job and the forced 'inquiry' which resulted from the massive financial abuse he uncovered was a total whitewash. It led to some monies having to be repaid but the one who led the inquiry was paid a fortune to do the systematic cover up by pretending it was a number of errors rather than a systematic and regular occurrence across that authority snd other across the country. That person was a former director of social services so there we have a fox looking after the chickens. Much like the police investigating their own crimes which of the 1000s of deaths in police custody have never yet resulted in a single police officer being prosecuted. It's a national disgrace and should be addressed now more than ever.

[FragileXmum in reply to Dolton]

Reading your response concerned me greatly. We are a family with two adult learning disabled sons whose finances we have to manage as they are unable to. Moving forward we have no family who can take this over when we're no longer able to/around and it has been troubling me for some time to know what to do about it.

[HolisticMum in reply to FragileXmum]

Yes we have a similar situation. I have been trying to get our Wills & Trusts together after attending a couple of Mencap's seminars during Covid. I got draft wills and need to write Letter of Wishes but we've been sitting on it since about January. I feel what ever I write for future there's no one going to take on our job. Others have said How easy it has been to write it all. I feel frozen to the spot thinking of their futures. Finance Services wanted costings because I appealed what they wanted to charge for Care Costs!! We provide the care, they provide a small budget! No time to think in our household and can't even get the future sorted.

[Creamcrackers20 in reply to HolisticMum]

So agree, it gets more scarey the older we get. Who the hell will care as we do. What does life hold for them when we're gone, I'm terrified.

[Jofisher in reply to Dolton]

I couldn’t agree with you more the financial abuse that was going on it my sons previous care home was criminal and I reported it to cqc and safeguardings and. O body seemed interested it’s like the bosses of these big corporations somehow know the bosses of social services and the cqc and it’s all hidden away it’s a disgrace

[HolisticMum in reply to Dolton]

You have explained that so well. We often think that the Charities are not looking after the welfare of the vulnerable but the top people are looking after their own interests. We have 2 lovely helpers who worked for a top charity for years and they gradually saw it go down hill, in as far as the clients didn't have access to all the lovely services they had years before and their family felt like they were being helped. They were employing those who just cared about themselves. It's such a shambles. It is a frightening situation when you have young people and you can't see the light at the end of the tunnel when you want to help them for the future.

[Dolton in reply to Jofisher]

The advocacy services have been defunded by local authorities. They don't want eyes on what they're doing.

[Sarah_Mencap in reply to Dolton]

Hello

Mencap do not offer an advocacy service, but if you contact our Learning Disability Helpline (0808 808 1111 or email [e-mail]) we may be able to put you in touch with someone who does.

Here is a little more about advocacy on our website in case anyone wants to know more about what it is - mencap.org.uk/advice-and-su...

There are also some other websites/charities that have useful information -

> disabilityrightsuk.org/advo... - do have a look at all the links at the bottom to other places that offer advocacy

> pohwer.net/

> voiceability.org/about-us

Best wishes

Sarah

[Galwaybay2 in reply to Sarah_Mencap]

Not sure the issue is personal. I am worried that inflation and cutbacks are impacting on all people with disabilities who rely on social services support. It needs a serious campaign.

[Dolton in reply to Sarah_Mencap]

We are well aware of what services have been cut my councils and we all know the reason why since the swingeing cuts came into force in 2010. Advice isn't whata needed- a service is whwts needed and I don't think Mencap should be an apologist for local councils either. Can you explain why Mencap don't offer an advocacy service in lieu of the ones that have been cut by councils? Its absolutely crucial. Councils also cut the welfare rights service too at a time whe they're needed more than ever and CAB is collapsing under the strain. Paret s like us feel were drowning under these ever I creasing pressures . Please don't cut this reply as you have done others I've made.

[Sarah_Mencap in reply to Dolton]

Hello

Thanks for your reply. I have raised your question about advocacy with our campaigns and policy team.

Many people using this community do want information, so I post links when I have some that people may find helpful.

You are welcome to share how you feel on here, and other parents will really value your posts and to know that they are other people in similar situations.

I can't offer immediate answers to your questions, but I will try my best to get feedback from other people at Mencap who may know more than me.

The only immediate thing I can offer you is our Learning Disability Helpline if you, or someone else reading this post, would like to talk to someone about advocacy or any other issues raised on here.

Best wishes

Sarah

[Sarah_Mencap]

Hello

Looking after someone else's finances is a stressful task, particularly when you are concerned that they are short of money. Have you talked to anyone/got advice about this locally?

As I understand it many benefits are inflation linked. This means that they will rise by 0.5%, in line with the Consumer Prices Index (CPI) rate of inflation in September 2020. I found this information here - commonslibrary.parliament.u...

After a bit more digging it goes on to say that this includes Jobseeker’s Allowance, Employment and Support Allowance, and Income Support and Universal Credit.

I am sorry that your son's direct payments have stopped- it there a reason for this?

If you have any questions about this, or any other questions, do get in touch with our helpline on 0808 808 1111 or email [e-mail] (mencap.org.uk/advice-and-su...

I will raise your question with our campaigns team too.

Best wishes

Sarah

[Galwaybay2 in reply to Sarah_Mencap]

I think my point is missed in this. Thanks for your help though.

[Dolton in reply to Galwaybay2]

Yes I think your point has been missed.

[class9F in reply to Sarah_Mencap]

ESA is increased in line with inflation but any increase is immediately taken by the Local Authority as part of the contribution towards services received. The weekly amount left has been fixed at £24.90 for years, from which toiletries, clothes, hairdressers, days out, clubs etc has to be paid. If they’re lucky and get the mobility part of PIP there is enough money but if not it’s a case of relying on relatives to help out.

[Sarah_Mencap in reply to class9F]

Hello class9F

Thanks for posting about this - I didn't know this. That must be very difficult for many families where relatives can't help out.

I am looping in our policy and campaigns team to these posts.

Best wishes

Sarah

[HolisticMum in reply to class9F]

When the Council's Finance Team were quoting about this £25 thing, I must say I don't know what they are talking about?? Are they allowing £25 for personal products like toiletries etc or our young adults are OK if they have £25 left out of it all. It baffles me. I stated that we buy in a nutritionist and then buy supplements etc but they reckoned this was like private health care, which is certainly isn't. They know nothing of how my young persons immune system is and how we have to pull out all the stoppers to keep him healthy. I was so angry. I did some other costings, some don't count and then they wanted more but I just can't face up to itemising everything we spend out on. So infuriating. Sorry if I'm rambling.

[Creamcrackers20 in reply to HolisticMum]

So agree, it's exhausting. We just do what's needed without thinking about it or logging it, most times out of our own pocket anyhow.

[Maurdek]

My daughter cannot afford to live in her home . I am really struggling I have had to go back to work to help her stay in the house . Her outgoing are more than her incoming . I don't know what to do. She share with other young adults who have wealthy families. We have no family to help with clothe and spends . They want to buy a new car which I have to part of after paying for food ,utilities, transport to her day centre and contribution she has not a penny left for clothe and treats. I thought once my husband pass she will be on her own she has no siblings and I feel very stressed she can't afford her house . It feels like it's never ending to buy things for the home they now want a car and ask me to pay my part and I just don't have the money . I am thinking of bringing her home she had at least some holidays and nice clothes . It's just so stressful I think I made a mistake sending her there . Can I ask for a financial assessment? And what will it tell me ? I would love to hear from others please in a similar situation.

[Shedman1]

I couldn’t agree more. A campaign is needed to highlight what is happening to the most vulnerable people in our society. Mencap has provided individual advice to me following a recent financial assessment which would leave my brother with very little money for any quality of life. That’s ok but unless there is a concerted effort to work collectively and highlight the issues to media and politicians, councils will continue with this approach to clawing back money. Mencap can you and your legal team help please?