Ask an Expert - Benefits and Support for Carers - June 2011

Giving up work to care

• I have a 10 year old son who was diagnosed this year with autism and Asperger's syndrome.  I had to give up my job this month to care for him. Is there any help out there for me? I am waiting to see if the claim for Disability Living Allowance (DLA) for my son is approved in July. (Lesley)

Trafford Carers Centre: This is a real issue for many carers; juggling work commitments with their caring responsibilities.  Many carers do end up having to give up work as a result. Please contact your local carers centre (link opens in a new window). They may have funds available to help support you until you find out about the DLA application. They may also be able to give you some benefit advice. If the carers centre can’t help they should know of other local services/organisations who can help. 

If your son is awarded with middle or higher rate DLA, you may also be able to claim Carer's Allowance, and your local carers centre or Citizens Advice bureau will be able to help advise you further on this.

You may also have a local service supporting children with autism/Asperger's. Services may include group activities and funding for breaks or support. You should be able to find out what is local to you by contacting the National Autistic Society (link opens in a new window). Their website lists local services and what they provide.

Karen Holmes (Turn2us): Based on the information provided it seems you may be eligible for Carer's Allowance (CA), and as a carer you could qualify for Income Support (IS) as well. Although you will not qualify for CA until the DLA decision is made, you can make a claim up to three months in advance. IS can also be claimed in advance, as long as the DLA claim has been made. You may be paid IS for up to 26 weeks while you wait for the decision. A successful claim for IS will mean automatic entitlement to Housing Benefit (HB England, Scotland, Wales and HB Northern Ireland) and Council Tax Benefit (CTB). Carers should use the Turn2us Benefit Calculator to ensure they are in receipt of all the relevant benefits for their situation, many don't realise that receiving Carers Allowance can also lead to a carers premium (an extra amount) being added to some other benefits like Income Support.

• I am currently in receipt of Incapacity Benefit (IB)/Disability Living Allowance (high rate care and mobility components). My partner works 14 hours a week and claims Carer's Allowance for me. We also receive a small Housing Benefit (HB). I will in the next 18-20weeks be having a total knee revision and being assessed to go back on the transplant list due to my transplant deteriorating and most probably go back onto dialysis. Carole will then have to finish work to become my full-time carer. I am at my wit's end trying to find out what, if any, additional benefits we may be entitled to, as without Carole's wages we will not be able to pay our current rent and bills. (Robert)

Karen Holmes (Turn2us): You can use the Turn2us Benefit Calculator to make sure you are receiving all the relevant benefits for your circumstances. If your household income is to decrease you should inform your local authority who can reassess your Housing Benefit (HB England, Scotland, Wales and HB Northern Ireland) award and see if you qualify for any Council Tax Benefit (CTB).

Trafford Carers Centre: Perhaps you could contact your local social services to see if you meet their Fair Access to Care (FACs) criteria. This will involve having a Community Care Assessment. If you do meet the criteria, then you may be able to access a personal budget. On some occasions they may allow you to pay your carer to care for you through the personal budget. You may need some help with this though. Your local carers centre may be able to advocate on your behalf.

Generally it is good to make contact with your local carers centre; they all offer different services but should be able to advise you. You can use the Turn2us Find an Adviser tool to find your local one. I would also encourage your carer to request a Carer's Assessment as this will identify what Carole's needs are and will detail what impact caring for you will have, including the financial impact from having to give up work. These factors then will have to be taken into consideration when they are looking at what support you will need.

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Unable to seek work

• Hello, I am writing for a young mother, Debbie, who has three children. Two of the children have special needs. Kieron 14 years old in special school, Billy 13 years old who has ADHD, just diagnosed, who is in a lot of trouble with school and the police. And the youngest Marcus, who is eight, and in normal school. Debbie has dyslexia and attended special school for learning difficulties. Her partner has just left her. Debbie went to the job centre for help and has been told to find a job cleaning and to attend three courses next week. How can she with the three boys? In the meanwhile, what about the rent, food, bills etc. What can she do? Where can she get the help she needs? (Angela)

Trafford Carers Centre: Firstly in relation to the issues regarding the lack of money coming into the household, please encourage your friend to contact the local carers centre (link opens in a new window). Some carers centres can access emergency funds which can support carers in these sort of circumstances for a short period of time, as well as helping to support her in other aspects of her caring role. 

In relation to the issues about her being told that she needs to find a job, if she would struggle if she had to work, I would suggest that she speaks to the advisor at the job centre to try to make them understand her situation. Jobcentre Plus offices sometimes have a specific staff member who takes a lead on supporting carers into work.  If this doesn’t work, then your local carers centre should be able to advocate on the carers behalf and speak to the Job Centre. This may involve writing a letter explaining the reasons why it would be impossible for the carer to work.  It may also be worthwhile requesting a Carer's Assessment which will detail the impact that caring for the three boys has on the carer and this should be used to help the Job Centre to understand the issues.  Carer's Assessments are usually requested via social services.

Karen Holmes (Turn2us): Carers who are in receipt of Carer's Allowance can qualify for Income Support in recognition that carers may struggle to hold down full time employment alongside caring responsibilities. Where there is no entitlement to Carer's Allowance, usually because the person they are caring for is not receiving an appropriate disability benefit, the situation becomes more difficult. This seems to be the case here where Debbie is being asked to look for employment, presumably as part of a Jobseeker's Allowance claim. It may be worth seeking benefits advice to see if either of the children with additional care needs qualify for Disability Living Allowance.

It is worth noting that as a carer you can still qualify for Income Support if you don't receive Carer's Allowance. However the decision maker will handle these claims on a case by case basis, looking closely at the quality and quantity of the care being provided to see if they consider it 'regular and substantive'.

You can use our Find an Adviser tool to find a local benefits adviser.

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Carer's Allowance

• Is Carer's Allowance means tested?(Marjorie)

  Bridget McCall: Carer’s Allowance is a benefit paid to people aged 16+ who care for someone who has a disability. You have to be providing care for at least 35 hours a week and you mustn’t be a full-time student. You can’t get Carer’s Allowance if you earn more than £100 a week after Income Tax and national insurance have been taken off. Other than that, income and savings are not taken into account.

To qualify, the person you are caring for must be getting one of the following benefits:

• Attendance Allowance
• Disability Living Allowance (at the middle or highest rate for personal care)
• Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit
• Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension.
  

For more details, see the Turn2us information sheet on Carer’s Allowance

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Carer's Allowance and State Pension

• My mother has Alzheimer's disease. She is 65 years old and received Disability Living Allowance, State Pension, a works pension (used to work for the local authority) and has a private pension. My father is her full- time carer. He is 66 years old and receives state pension and a works pension (used to work for the local authority). He used to receive Carer's Allowance but since he started receiving his State Pension does not get Carer's Allowance. Is it correct that he should not be receiving Carer's Allowance now that he is receiving his State Pension? After all, he has not stopped caring for my mother. Also, are their any other benefits which my parents may be entitled to? (Stephanie)

Counsel and Care: Carer’s Allowance is a state benefit to help a person look after someone with a disability but falls within what are known as “overlapping benefit” rules. This means that you do not receive Carer’s Allowance if you receive certain other benefits, including the State Retirement Pension, which are paid at a rate that is the same or more than Carer's Allowance. So, some people who are eligible for Carer’s Allowance do not actually receive the payment and it seems that this is the situation for your father.

Depending on the amount of your parents’ income and capital, there are a number of benefits that they may be entitled to:

You can use the Turn2us Benefit Calculator to see if your parents are in receipt of all the relevant benefits for their circumstances.

Counsel and Care: If a person is not in receipt of benefits and they put off claiming their State Retirement Pension for at least five weeks, they can earn an increase to their State Pension. The increase will be one per cent for every five weeks put off claiming. If the delay in claiming State Pension is for more than 12 months, then a one-off lump sum payment may be chosen, rather than the increase in the weekly payment. However, if a carer defers claiming State Pension and claims Carer’s Allowance, then the days for which Carer’s Allowance is paid will not count towards any extra State Pension or the lump sum payment.

With this in mind, a carer of pensionable age should try to calculate (or seek advice to do so) which benefit would be the most beneficial for them to claim.

A carer claiming Carer’s Allowance can also affect some of the benefits claimed by the person needing care, so this should also be considered when deciding which benefit to claim.

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Benefits dispute

• My wife looks after her disabled son, and she used to get direct payments from social services, but they stopped last year. Her son is paralysed from the waist down due to him having cancer six years ago. Social services wanted to take most of her son's Disabled Living Allowance (DLA) from him. She still cares for him, but does not get any payment for it as they said he needs moderate care now, but he is still in need of care, still in a wheelchair. Can you suggest anything for her to get benefits or support? Thank you. (Nigel)

Trafford Carers Centre: It is hard for me to advise fully without knowing the full picture. Caring for someone can be so stressful, but even more so when you can’t get the support and help that you need.  What I will say though is that there are a number of places for you to go for advice and further support.

Firstly I would recommend that you ensure that your wife gets a Carer's Assessment (if she hasn’t already had one). This should ensure that your wife’s needs are taken into consideration by social services when they are looking at what care her son needs. All carers are entitled to request a carers assessment by contacting social services. 

I would also suggest contacting your local carers centre (link opens in a new window). All centres provide different services but you may be able to access funding or support so that your wife can get a break from her caring role. The carers centre should also point you in the right direction in relation to other organisations that could provide things for your wife’s son to do during the day. You can find your local one using the Turn2us Find an Adviser tool.

Your wife may be able to get Carer's Allowance if her son is on the middle or higher rate of Disability Living Allowance (DLA). There are a number of criteria in relation to this allowance but again the local Carers Centre should be able to give you more information about this. Your local Citizen’s Advice bureau (CAB) is also good at providing advice in relation to benefits. In the North West of England there is a part of the Citizens Advice bureau which offers support in relation to Community Care Law, with specialist legal advisors to help carers challenge social services.  Contact your local Citizens Advice bureau to see if this service is offered near you.  You can find your local one using the Turn2us Find an Adviser tool.

In summary it is important for all carers to contact their local carers centre (link opens in a new window) as they can offer so much help and support no matter what the problem is and if they can’t help they should be able to signpost onto another organisation or service who can.

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The Blue Badge Scheme for parking

• My husband has just been in hospital with a small stroke and has also a problem walking any distance. How do we apply for a parking badge? (Sheila)

Bridget McCall: People who have severe mobility problems or who are registered blind can apply for a Blue Badge parking permit. This allows them – as a driver or a passenger – to park close to where they need to go. Although available throughout the UK, the rules about where you can park differ in each country and there are some restrictions in four central London boroughs. The scheme also provides exemption from some tolls at river crossings, bridges and tunnels as well as the London Congestion Charge, although in most cases you have to apply in advance to qualify. It can also be used in some European Union countries.

You apply for a Blue Badge, which is usually valid for up to three years, through your local council. There may be a small charge of £2 (£20 in Scotland).

If your husband is receiving the higher rate of the mobility component of Disability Living Allowance or a War Pensioner’s Mobility Supplement, he will automatically qualify for a Blue Badge.  If not, he may qualify following assessment by your local council.

For more details, see the Turn2us Travel Concessions for people with disabilities and their carers information sheet

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Support for carers

• Whenever discussion surrounding carers take place, it seems that the issue is dominated by the Carer's Allowance and benefits in general. I have been at screaming pitch, desperate for help and support, and not able to get this help anywhere. Some things, money can't buy - but this is the dominant issue apparently. (Rose)

Counsel and Care: As a carer, you have a right to a Carer’s Assessment from your local social services. They will look at your situation and see if you are entitled to any services that could help with your caring role. The kind of help and support you can get includes respite care and day care to give you a break. Day centres offer social activities and outings for disabled adults.  Your council should be able to tell you what services are available in your area.

Local carers’ support groups, such as those run by the Carers Trust (link opens in a new window), can also provide essential emotional and practical support for carers. Services do differ from area to area, so for further information about your local group contact 0845 450 0350.

You may also find it helpful to look at the Carers Direct website (link opens in a new window) for information about financial help, legal matters, keeping well, working and other sources of support.

• My Husband has epilepsy, his seizures happen during the night and I have to care for him when this happens. Due to this I never have a good nights sleep. Could I claim care allowance. My husband is 67 and I am 64. We live in Sheltered housing and we only have one bedroom. His seizures are under control during the day but for some reason they still happen during the night. I can't cope much longer and I don't know what to do. (Pat)

Counsel and Care: It is important that you seek support to help you care for your husband. As your husband’s main carer, you have a right to a carer’s assessment from social services. Social services will look at your situation and see if you are entitled to any services that could make caring easier for you.

There are also local carers’ support groups, such as those run by the Carers Trust (link opens in a new window), which can provide essential emotional and practical support for carers. Services do differ from area to area, so for further information about your local group, contact 0845 450 0350.

Counsel and Care has a team of experienced advice workers able to talk to people about both straightforward and complex care and support issues for older people, whether they are in their own home, in hospital, in residential care or in any other care environment. You can call 0845 300 7585 to speak with someone about your situation.

For you to qualify for Carer’s Allowance, your husband must be getting Attendance Allowance or Disability Living Allowance. Carer’s Allowance is an ‘overlapping benefit’, so you will not qualify for Carer’s Allowance if you receive certain other benefits, including the State Retirement Pension, which are paid at a rate that is the same or more than Carer's Allowance.

If your husband is not already claiming Attendance Allowance, you can initiate a claim by contacting the Attendance Allowance helpline number 08457 123456 or the Benefits Enquiry Line 0800 882200.

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Grants and peer support for carers

• I look after my diabetic type 1 daughter on my own. I am 37 years old and my daughter 14. I put a claim for carer's allowance and I don't have the right to receive any more help apart from my working tax credit and my daughter's DLA . It's really hard without the money and there are weeks where my wallet is empty for 4 days. I wait for thursdays to come in and then I just spend on food and bills. The next following week is the same issue. I work only 16 hours a week because I need to look after her. I had my brother here in England but he died from the same condition, age 35. My brother used to help me but I don't have really a lot of help from other people. Can you help(Raquel)
  
  Bridget McCall: Based on the information you have given, it is quite possible that you might be eligible for financial and other help from a charitable fund. You can use the Turn2us Turn2us Grants Search database database of over 3,500 funds to find any that may be relevant to your situation and background.  

Practical help might also be available to you as a carer from your local council. If you have not already done so, I would suggest that you contact your local council and ask for a Health and Social Care (or Community Care) Assessment for your daughter and a Carer’s Assessment for you. This will identify the particular issues that you need help with and services may then be provided to help you and your daughter.  

Many carers get invaluable support from carers’ organisations such as Carers UK (link opens in a new window) and the Carers Trust (link opens in a new window). This includes contact with other carers for mutual support.

The Carers Trust has 144 independently managed carers centres (link opens in a new window) throughout the UK. You might also find it helpful to contact Diabetes UK (link opens in a new window), the national charity for people with diabetes, for information and advice on managing your daughter’s condition as well as opportunities to meet other families living with diabetes.

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Continence issues and support

• My husband aged 80, who was fit and well before entering hospital for a minor day surgery procedure 10 days ago, is due to return from hospital on Tuesday, as a doubly incontinent invalid. What support and care is available to us? (Marian)

Counsel and Care: Your husband’s GP should be able to help you both manage this situation and will have details of the nearest NHS continence clinic. A continence adviser based there will provide an assessment and advice about treatment.

Your husband may also be assessed by the hospital urologist and ward staff should be able to advise you about who is managing your husband’s discharge from hospital to ensure that the appropriate professionals are involved. They will discuss with you how to manage the condition and specialist treatments available. If it is agreed that pads or other products are necessary to manage your husband’s condition, they should be available from the NHS. What is available varies from region to region but if your husband meets the eligibility criteria, you should be told which ones he will need and given details of how to receive regular supplies.

You may want to contact the Bladder and Bowel Foundation (link opens in a new window) for information and advice on continence issues, tests and treatments. Their specialist nurses offer help by phone or email.

To talk about both care and support issues for older people you could also call Counsel and Care on 0845 300 7585. We have a team of experienced advice workers who are able to talk with you as a carer about the situation you face.

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Find your local carer's centre

If you do not know which local carers organisations there are in your area, you can use our Find an Adviser tool to find local ones, including Carers Trust local carers centres and respite care schemes (formerly Crossroads Care schemes).

Further information

• Alzheimer's Society (link opens in a new window)
• Bladder and Bowel Foundation (link opens in a new window)
• Carers Direct (link opens in a new window)
• Carers Trust main website (link opens in a new window)
• Carers Trust respite care schemes (formerly Crossroads Care (link opens in a new window)
• Carers Trust young carers website (link opens in a new window)
• Carers UK (link opens in a new window)
• Carers UK Looking after someone guide (link opens in a new window PDF file size 1,387kb)
•  Gov.UK carer's section (link opens in a new window)
• Diabetes UK (link opens in a new window)
• Epilepsy Action (link opens in a new window)
• Independent Age (link opens in a new window)
• National Autistic Society (link opens in a new window)
• Useful links: Heath conditions and disabilities

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Disclaimer:

The opinions expressed are those of the expert only. The answers and associated material are for general information only and do not constitute financial, legal or other form of advice. You should not rely on this information as an alternative to financial, legal or professional advice from a qualified professional for your own particular situation. The answers are given in response to specific questions submitted by other users. You should not rely on this information alone to make (or refrain from making) any decisions.

Whilst effort has been taken to ensure the accuracy of the information, Turn2us does not accept any liability for this information. It is the responsibility of users to check the accuracy of relevant facts and opinions given as part of any answer before entering into any commitment based upon the information given.

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Date of publication: 22 June 2011

Updated: 4 January 2013