During Learning Disability Week (15 to 18 June 2021) we had Suzette from Carers UK here.
Suzette helped answer questions about being a carer, and particularly about the challenges carers face when it comes to benefits and finances.
This event is now closed, but please read Suzette's posts for advice and information about being a carer.
There is also lots of support for carers on the Carers UK website here - carersuk.org/
Best wishes
Sarah
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Hi SarahMy daughter is living in a respite centre at this current time with a view to moving to a supported living placement later in the year.
I currently deal with her finances and would appreciate if Suzette could advise on the best way forward when she moves into supported living.
Thank you from Gill
Thanks Gill. This is a fab question. Suzette will be here on Tuesday and your post is top of the list! Best wishes, Sarah
Hi Gill, thank you for your post and good to hear from you.
In respect of your daughter’s benefits, it may depend on if she is going to have housing costs (rent to pay) for the first time, how the accommodation is classed in respect of housing costs, and what benefits your daughter is getting already. (For this advice I am assuming that your daughter is entitled to means tested benefits)
Firstly if your daughter will need to pay rent on the new accommodation for the first time it will either be paid via Housing Benefit or Universal Credit depending on what type of accommodation it is.
For most types of accommodation rent will be paid through Universal Credit. For some “specified accommodation” Housing Benefit can be claimed. See the Disability Rights UK definition of “Specified Accommodation” here: disabilityrightsuk.org/spec...
If your daughter is receiving Universal Credit now, then depending on the accommodation it will be a matter of letting Universal Credit know as she is moving, the new address, and that she will have rent to pay for the supported living placement. This can be updated via her journal. The Supported Accommodation will give you details of the tenancy and payable rent and so on.
If she needs to claim Housing Benefit this can be claimed in advance and you can normally make a claim via the Local Authority Website. You can also make a claim for Council Tax Support/Reduction at the same time if needed. Remember to change the address on the Universal Credit claim also.
Claiming Housing Benefit for “specified accommodation” would mean that your daughter could end up receiving Universal Credit for her day to day living costs and Housing Benefit for her rent at the same time. The landlord should be able to let you know how your daughter’s property is classed for these purposes.
Your daughter might be getting ESA (Employment and Support Allowance) at the moment due to her health needs/disability. If she moves and needs to claim for housing costs and the accommodation is not “specified accommodation” then she may need to change from ESA to Universal Credit. She should not have to undergo a new medical assessment when she changes over.
Universal Credit is quite a different benefit in that it is paid monthly and is mostly conducted online. You can read more about this, including how to claim here: Universal Credit - GOV.UK (gov.uk) Citizens Advice also have some useful information on their website: Universal Credit - Citizens Advice
If your daughter gets PIP or DLA then that will just be a change of address.
I hope this information helps, Gill, but if you would like Carers UK to carry out a full benefit check for your daughter nearer the time, you are very welcome to get in touch with the helpline team on advice@carersuk.uk.
Suzette
Suzette, there is also another post from a carer here - healthunlocked.com/mencap/p...
I have replied, but if you have any general advice about where carers can find support that would be super.
Thanks
Sarah
Thanks, Sarah.
Hello
Here is another question asking about being a carer once you retire - healthunlocked.com/mencap/p...
Suzette, there are already quite a few responses to this but please reply if you have anything more to add. It would be great if you have any advice/information for older carers.
Many thanks
Sarah
Thanks. Sarah.
Hello to everyone and thank you very much to Sarah and Mencap for inviting me to your forum for Mencap Learning Disability Week. I’m delighted to be here.
I’m Suzette and I’m a Welfare Rights Adviser, currently working with other advisers on the Carers UK helpline, answering benefit questions.
I'll be here each day until Friday to answer any benefits questions you may have on Carer's Allowance, Universal Credit, PIP and Council Tax discounts.
I’ll post some information on each of these subjects over the week. I look forward to hearing from you 😊
A big welcome to Hidden
If you want to know more about Carers Allowance and Carers Credit read Suzette's brilliant post here - healthunlocked.com/mencap/p....
Hello Suzette. I care for my adult daughter who currently gets PIP. She is due to be reassessed again soon. Last time it was a long, stressful process and I ended up complaining. She currently gets the daily living component and I am worried that if she doesn't get it again this time I will lose my Carers allowance. If this does happen are there other benefits I could get? I can't believe we have to do this all so often. Her ability doesn't really change, so I wonder why so many assessments. Thanks Grace
Hi Grace, many thanks for your query and for raising the issue that claiming PIP can feel like such a stressful experience for so many people.
I do hope the reassessment goes more smoothly this time, but it might help to get some support with this if you feel it’s needed.
The Advice Local website lets you search for welfare rights advice by putting in your postcode. Most advice agencies are open but may be carrying out telephone and email advocacy and support at the moment. advicelocal.uk
Some councils have dedicated welfare rights services also.
We would advise gathering together in advance any useful documents or letters that you may have from health or social care professionals, and pulling together details of any other services your daughter may access. These will all help evidence the needs she is reporting.
To go back to your question. Unfortunately, as you know, if a person loses their daily living component of PIP, then a carer cannot carry on getting their Carer’s Allowance. You can continue to get support for local carer services and the local authority if you are in touch with them.
Other benefits will depend on the income and savings of you and any partner, as these are mostly means tested. For example if you have a low income you may be entitled to Universal Credit for yourself and an amount towards any rent you pay. If you are on a benefit such as Income Support because you are a carer, then losing your Carer’s Allowance may mean that you need to move on to Universal Credit. ( Universal Credit explained - Money Advice Service )
This is because Universal Credit has replaced most other means tested benefits. I will be posting more about Universal Credit tomorrow so please do check back then.
As above I do hope that the assessment goes smoothly, but if things do change and you want to have a check of your benefits, and get some more personalised advice, please do contact our Carers UK email helpline. We can carry out full benefit checks and give full advice.
Our email address is: advice@carersuk.org
Kindest regards
Suzette
Hello
This question was shared by a direct message - so I am posting it on their behalf.
"Our family is in desperate need of holiday. We have one child with a LD and one without. Are there any places that can help out with the cost of this? This is made more complicated as my son needs a lot of support (we usually have paid carers in each day), and accessible accommodation."
Thanks
Thanks for this message.
We do not provide grants ourselves at Carers UK, but we may have some information that may help.
Please do see our section on taking a break here: carersuk.org/help-and-advic...
This includes links to statutory and charitable support that may be available. Please also see here: carersuk.org/help-and-advic...
If you are not already in touch, Contact (Previously Contact a Family) hold information on grants for parents: contact.org.uk/help-for-fam...
They are also an excellent source of other information on help for your child: contact.org.uk/
I do hope this is of some help and you are able to have a holiday before too long.
Suzette
Hello. We've never had a carers assessment even though we care for our son (who has DS). We both work I'd very much doubt we'll be eligible for any money but one of our friends said we should still have one. I've done a bit of research and they do seem to be more than just financial assessments. We've never really had any contact with the council/social services and I feel wary of asking them anything. Partly as I'm not sure I want them involved, but mainly as they are so stretched and there must be people who need their help more than us. On the other hand are we missing out. I'd appreciate your advice. Thanks
Dear Freddy44,
Good morning and thank you for your post.
You are right that carers assessments are more than just assessments for financial support, they are a way to provide more practical support to a family, and as such please do not feel that your needs are not a priority with social services.
In brief these assessments are part of the Care Act 2014 or the Children Act and as such are carried out by or on behalf of your local authority.
If your son is under 18 years the assessment would be under The Children Act. If you visit our website, you can find out more and download a fact sheet here. As you will read, you could request a parent carer assessment for yourselves.
The procedure for requesting an assessment varies between local authorities. Generally, local councils are also encouraged to consider combining the assessments of people within the same family, for example those of the carer and cared for, so that the assessments are linked and are most effective.
Contact is a UK charity supporting families with disabled children. They have useful information about assessments on their website and booklet about Services and Support from your local authority . If you would prefer to talk through the options and have questions, then you can contact them on 0131 659 2930 or you can use their live chat facility on the website or you can email helpline@cafamily.org.uk or post a query on their Facebook page.
If your son is an adult then the carers assessment will be under the Care Act 2014.
To apply for either assessment you will need to speak with your local council - social services department, or children’s services department. You can search for your local council using this link here - gov.uk/find-local-council.
Both types of carers assessment are opportunity to explore what your caring role is and what support you may need in your role as a carer. It must take into account your own health and wellbeing as well as any outcomes you want to achieve.
Please see more information here about carers assessments - carersuk.org/help-and-advic....
A local independent carers centre is a good way to get further information and to explore your options for statutory and other forms of support.
We have a local carer’s centre search and I do recommend having a look and getting in touch with your local centre. carersuk.org/help-and-advic...
We also have a web tool especially designed for new carers or carers who are looking for support for the first time. It's called Up Front and you can just answer some quick questions and you’ll be sent an email with useful information, tailored to your own situation. carersuk.org/upfront/
I do hope this is of some help and have a lovely day.
Suzette
Don't miss Suzette's post all about Universal Credit here - healthunlocked.com/mencap/p......
Hello Carers UK
I care for my adult daughter I do worry about would happen if I wasn’t able to do that. The money side of things worry me, but to be honest it is the practical stuff that worries me more. What if I was taken ill, would someone know she was waiting for me. I have tried looking for local support on this but no joy. It is hard to know what I am asking for really so I might just not be searching for the right thing.
I have freinds and family who could help in the short term.
Thank you
Hi there, thank you very much for your post.
That’s such an understandable worry.
We have some specific information on our website about making an emergency plan for carers, and about carrying an emergency carers card. The card would tell people that you are a carer and there is someone reliant on you, and the plan would set out vital information and could be left with family/friends as well as the local authority.
We have long advised setting up a plan but it became quite an urgent matter for many carers to think about during this pandemic.
Please see fuller information here: carersuk.org/help-and-advic... . On this page you will also see an interactive tool that will help you collate all the information you should consider.
I do hope this information helps.
Kindest regards
Suzette
Suzette has posted about Personal Independence Payment here - healthunlocked.com/mencap/p....
She has included a great video too.
Hi. This feels like an odd question. But how to you prove you are a carer? I have seen places that offer free entry for a carer - but what paperwork will they want you to show. I don't have anything official, and I really hate the idea of being challenged on it once I am there.
Hi there,
This is a great question to ask, and it’s one that we get asked much more often than you would think.
This is because as it stands there is currently no national register of carers or national carers ID card. This means there is no one way to prove your caring role.
However many local councils or carers’ organisations run schemes of their own wherein they provide support and issue carers cards or similar and this might be helpful for you.
During the pandemic many councils and carers centres were stepping up registration of carers as people were worried about being challenged for being outside during the earlier lockdowns, so please do consider getting in touch with your local carers centre in the first instance.
It's worth checking the entry criteria for the places that you wish to visit to see what proof they will accept. They often want to see proof that the person cared for is in receipt of a disability benefit such as Disability Living Allowance, Personal Independence Payment or Attendance Allowance, and you can carry their letter with you.
Also if you do receive Carer’s Allowance but don’t have a recent letter (or a letter at all), you can phone them up and ask them to send you a “letter of entitlement”. They should be happy to do this for you.
You might also benefit from a Carer's Assessment from the local authority in connection with you caring role. As well as offering you some help with your caring role, the local council adult social services department may have carer’s cards which are carried on your person to alert others that you have caring responsibilities in the event of an emergency.
Have a look at our link here, which talks about emergency cards and also provides a link to search for your local carers centre: carersuk.org/help-and-advic...
I do hope this helps.
Kindest regards
Suzette
Good morning to Sarah, Mencap and the HeathUnlocked Community. I want to say a heartfelt thank you for your kind invitation to join you this week on behalf of Carers UK.
This is my final day on the forum, and I will be finishing at noon. However if you wanted to ask something or post something today, please do and I will ensure I come and respond to any queries on Monday.
If you do need some more personalised email advice on the benefit or community care issues you may face as a carer, you are very welcome to email our advice helpline on advice@carersuk.org. Wishing everyone a very good weekend and my kindest regards, Suzette
Thank you so much for your awesome posts and replies this week Suzette. I am delighted that carers have had a chance to hear more about support that they might be able to get.
Many, many thanks
Sarah
Another great post from Suzette here about council tax discounts - healthunlocked.com/mencap/p...
Hello
I hope you found this event about caring helpful. A big thank you to everyone who joined in, and also to Suzette for being our expert.
This topic is now closed, but please do read the posts for advice and information for anything to do with being a carer.
Here are links to the other posts from Suzette:
> Carer’s Allowance and Carers Credit - healthunlocked.com/mencap/p....
> Universal Credit - healthunlocked.com/mencap/p......
> Personal independence Payment - healthunlocked.com/mencap/p....
> Council tax reductions - healthunlocked.com/mencap/p...
There is also lots of information and support for carers on the Carers UK website - carersuk.org/ . They even have a helpline for carers on 0808 808 7777 or advice@carersuk.org
You can contact Mencap's helpline on 0808 808 1111 (10am to 3pm, Monday to Friday) or email helpline@mencap.org.uk.
Best wishes
Sarah
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