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Ask an Expert Carers and help at home - August 2012

Every month, through our Ask an Expert feature, Turn2us users are given the chance to ask a panel of experts their specific questions about issues relating to benefits, grants and managing money.

Carers and help at home

This month’s Ask an Expert feature focused on carers and support for disabled people at home.

Here are the answers to a selection of the questions we received:

 

Our experts


Disability Rights UK website (link opens in new window)Banane Nafeh, Disability Rights UK (link opens in new window) specialist on independent living. She provides advice on funding from social services in relation to care at home, including direct payments, personalisation, individual budgets, and advice on employing personal assistants



Trafford Carers Centre website (link opens in new window)Kelly Hunter, Centre Manager, Trafford Carers Centre (link opens in new window), which provides comprehensive support to for carers living in the borough of Trafford. 



Independent Age website (link opens in new window)The advice team, Independent Age (link opens in a new window), provides a national information and advice service for older people, their families and carers, focusing on social care, welfare benefits, befriending and other social support.

Struggling to cope

  • My husband was diagnosed with idiopathic dilated cardiomyopathy and renal failure five years ago and given three days to live. He only gets Incapacity Benefit, did not qualify for Disability Living Allowance (DLA) and had his Blue Badge refused when we reapplied after three years. Due to his condition, he will never work again, cannot help me round the house and struggles to walk very far without getting out of breath. He has recently been in and out of hospital with pneumonia, deep vein thrombosis (DVT) and respiratory problems. I am the main wage earner working full-time, a mother to two teenage boys, run the house single handed and care for my husband. I am now really struggling to juggle everything on my own. I am constantly tired and feeling very low. Is there any help available to help me with the home so I can continue to care for my husband, children and work? Kaz

Trafford Carers Centre logoKelly Hunter:: It sounds like you have been going through a difficult time lately which has not been helped by your struggle to access services.

Look after your own health

The first thing that I would like to say is that it is essential that you look after yourself in all of this. Very often carers neglect their own health due to the fact that they are so busy caring and juggling other responsibilities. You say you are feeling tired and low. You must address this otherwise there is a danger that your health will impact your caring role. A first port of call might be your GP to make sure you health is taken care of. 

Seek advice and ask social services for an assessment

You can also contact your local carers centre for support for you. They will be able to advise what is available in your area both to support yourself as a carer and help you access services for your husband. They should be able to refer you to the local council for a Carer's Assessment for yourself and a Health and Social Care Assessment for your husband.

Please be aware that every local council sets its own local eligibility criteria for care services, under the Fair Access to Care Services (FACS) guidance.

This sets the level of need that the local council will fund, under four bands:

  • Critical
  • Substantial
  • Moderate
  • Low.

If your husband's assessed needs fall within one of the bands that the local council is able to fund, those needs must be met. The local council must publish details of its eligibility criteria and which of the bands it is prepared to fund. It is common now for councils to fund only those needs which fall into the “critical” or “substantial” bands.

There may also be support to enable you to have regular breaks from caring. This is called respite care. You may be able to access this through your Carer's Assessment. 

Employer support

Your employer has a responsibility to consider flexible working if this will help you in your caring role. Your local carers centre should be able to advise you further. See Carers UK information about caring, work and your career (link opens in a new window).

Your husband's benefits

If your husband needs personal care and has mobility problems due to his illness, you should also consider reapplying for Disability Living Allowance (DLA). If he previously received DLA, you should check with an adviser whether it may be possible to link any new claim you make with his old one. You can use our Find an Adviser tool to find a local advisor.

There is no automatic right of appeal against a local council's decision to refuse a Blue Badge Parking Permit application. You can however ask it to reconsider its decision if you feel your husband's mobility problems have become more serious or that not all the facts were taken into consideration when the decision was made.


Getting help for a neighbour

  • I live next door to a old lady. She seems to be struggling to manage living by herself and seems to me to be very isolated. She goes out to the local shop and I sometimes bring some shopping in for her, but she doesn't seem to have any family or friends who visit her. Although I do what I can to help her, I think she needs support. What can I do to get her help? I am conscious that I am not a family member but she doesn’t have any one that I can call upon.   Doris

Independent Age logoIndependent Age: Without knowing more about how your neighbour is struggling to manage living by herself, we can’t give complete advice. However, there are some things that you could consider:

Assessment of needs

If she is struggling with daily tasks, like bathing, getting about the home or cooking, she can request a Health and Social Care Assessment from the local council (from the adult social services department). A visit will establish what needs she has and if she meets the criteria for assistance from the local council. Help may be in the form of a carer to help her get up and wash or dress or help with preparing meals or shopping or it could mean her being eligible for a direct payment, a sum of money paid directly to her, so she can choose and pay for whatever type of support she feels she needs. She will need to call the local council to request this assessment or, with her permission, you can call and request this on her behalf.

Extra money

If your neighbour has care needs, she may also be entitled to Attendance Allowance. This is a benefit designed to provide extra income for people over 65 years who have long-term disabilities. She could use the extra money to pay for taxis, getting a cleaner or on anything she wishes. It is not means tested, so it is based purely on her care needs and is not connected to her income or capital.

The Attendance Allowance form is quite complex and we always recommend people get help to complete this from a local advice agency like Age UK or a Citizens Advice Bureau. You can use the Turn2us Find an Adviser tool to find a local office.

Social contact

You mention that she is isolated and doesn’t seem to have many friends or family who visit her. If so, she may benefit from joining a befriending scheme or local social activities group. There are lots available both locally and nationally and you can contact you local Age UK to find out about local schemes and services. You can use the Turn2us Find an Adviser tool to find your local Age UK office.

At Independent Age, we provide a befriending service through our volunteers as well as our ‘Live Wires’ groups - telephone book groups where people chat over phone (like a conference call) once a month. You can visit the Independent Age website (link opens in a new window) to find out more or call us on 0207 605 4200

Contact the Elderly (link opens in a new window) - telephone: 0207 240 0630 - do local tea parties for people over 75.

Friends of the Elderly (link opens in a new window) - telephone: 0207 730 8263 - have a telephone befriending scheme.


Discharge from hospital

  • My elderly father was the carer for my mother. She has recently been admitted to hospital, but is likely to be discharged soon. He has health problems of his own and is terrified that he will not be able to cope when she returns home. What will happen when she is discharged? Rose

Independent Age logoIndependent Age: It is the hospital's duty to arrange a discharge plan before your mother returns home. The hospital should carry out a needs assessment to assess the level of care your mother will need in order to return home safely. This assessment should be co-ordinated by a hospital social worker or care manager, but your local council social services should also be involved. As your mother’s carer, your father should be involved in the planning of this assessment.

He is also entitled to a Carer’s Assessment for himself which could be carried out at the same time as your mother’s needs assessment. Your father may need regular breaks or a sitting service in the future, in order to maintain his caring responsibilities, so it is important that any need for this is included in these assessments.

A local carer’s centre may provide further information on what is available to support carers in your parents' local area.

You may also find it helpful to look at the Independent Age Carers guide (link opens in a new window). 

Your mother will remain the responsibility of the NHS for six weeks after discharge, after which she becomes the responsibility of the local social services department.

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Stopping caring

  • I was on Carer's Allowance and Income Support before my mother died.  Now I am worse off as I have only Jobseeker's Allowance which is considerably less. I also find that the Department for Work and Pensions (DWP) now want me to repay £431 that was given to me while my Mum was in hospital as Carer's Allowance. I was unaware that I should have applied as a job seeker even though there was a chance she would be discharged as she had been many times in the past. So now my Jobseeker's Allowance will only be £57 a week and not the statutory £65.45. So now I am quite sad that my caring for my mum has ended in this manner as she would not have wanted me to be so poor.      Fiona

Trafford Carers Centre logoKelly Hunter: I am really sorry to hear that your caring experience has ended in such a negative way and has now left you financially out of pocket.

Overpayments

I don't know how long ago the DWP made the decision to reduce your weekly benefit in order to collect an amount of Carer’s Allowance that they say was overpaid while your mother was in hospital. However, you should try to find a local adviser and discuss whether it may be worth making an appeal about the decision to recover the overpayment. You normally have to make an appeal within one month of a decision you disagree with, but you can appeal up to 12 months late if you can show ‘good cause’. In your circumstances of bereavement you may have good cause.  See also the Turn2us information sheet on Overpayments: benefits and tax credits.

Support for former carers

You should also contact your local carers centre to see if they can help you with this situation. For instance, there are a number of charitable funds which may be able to help you out financially, depending on your background, circumstances and needs. You can also use the Turn2us Grants Search database to look for charitable funds like these.

Depending on how you are feeling following your loss, it may also be worthwhile talking to the carers centre about what support they offer to former carers. You may be able to access counselling through it or your GP or there may be a former carers group that meets regularly. Many carers find contact with other former carers for mutual support invaluable.

You may even want to put your valuable caring experience to good use - for instance by supporting others who may be struggling with their caring role.  I know that having carer and former carer involvement in helping to shape the work that carers centres do is essential, so this may be something that you feel you could contribute to.  In our centre, we have carers and former carers who volunteer or are employed to give carers direct support, to help shape the work that we do or to train professionals on carer awareness. Perhaps your local carers centre does a similar thing. This may help you to get back into work or to even decide what you may want to do in the future.

You may also find the following online resources about stopping caring helpful:


Living independently

  • I am the carer for my 20 year old son with moderate to severe learning difficulties. He currently lives with me but he wants to consider living independently in his own flat. He receives Employment and Support Allowance (ESA)in the support group and Disability Living Allowance (DLA) with high care and low mobility. What support could he get if he lived independently? How would my benefit entitlement be affected if he was to move out? Julia

Banane Nafeh from Disability Rights UKBanane Nafeh: The first step in supporting your son to live independently is to contact your local adult social services department (link opens in a new window)

Assessment

The local council has a legal duty to assess the support needs of disabled people who ask for an Health and Social Care Assessment. Each local council sets its own eligibility criteria, based on national Government guidelines called Fair Access to Care Services (FACS)

The local council will use this assessment to devise a care plan that specifies the practical support needed to enable your son to live as independently as possible. The care plan should be person centred and “outcome based” (i.e. focused on his need and what is required in terms of services and support to address them).

It should state:

  • Your son’s eligible needs
  • Associated risks to independence
  • His preferred way of getting the support
  • Options on how to act in emergency situations
  • The services provided.

A full assessment should assess a disabled person’s need for support in these areas:

  1. Personal care required to carry out daily tasks such as washing, dressing or preparing food,  and help to manage at home
  2. Suitability of accommodation
  3. Ability to manage and arrange for own health care
  4. Ability to manage finance
  5. Access to education, employment or leisure facilities
  6. Mobility and transport requirements, physical access to buildings.

 

The assessment should cover the full range of his needs, what he is able to do and not able to do, his preferences and aspirations. They will also consider whether his independence is affected in these areas:

  1. Choice and control
  2. Health and safety
  3. Management of daily routines
  4. Involvement in family and wider life.

 

The assessment must take into account both his immediate, day-to-day needs and his longer-term needs. The social worker making the assessment should look at how any risks that could affect his physical and mental health, both now and in the future.

Under the FACS framework there are four bands of need;

  • Critical
  • Substantial
  • Moderate
  • Low.

There are eight risk factors that are considered when assessing which band to place a person’s eligible needs:

  • A threat to life
  • The development (or future development) of health problems
  • A reduced choice or control over aspects of the immediate environment
  • The occurrence or likelihood of abuse or neglect
  • A reduced ability to carry out vital personal care or domestic routines
  • A reduced involvement in many aspects of work, education or learning
  • Reduced social support systems and relationships
  • A reduced ability to maintain or undertake family and other social roles and responsibilities.

Any needs that are identified in the assessment, and which meet the council’s eligibility criteria, are called "eligible needs". If your eligible needs fall within one of the bands which the council is able to fund, they must be met by the council. The council must publish details of its eligibility criteria, and which of the bands it is prepared to fund. It is common now for councils to fund only those needs which fall into the “critical” or “substantial” bands.

You should ask how long you might have to wait for an assessment.  Seek advice if you think this the waiting time is too long, or if your health, safety or wellbeing are at risk.

If you or someone else is helping to look after your son on an informal basis (i.e. not as a professional and usually without payment), even if he is living independently, their needs and wishes should also be taken into account. They can ask for a Carer's Assessment in their own right, to identify any support needed to help them in caring tasks.

Once a local council has assessed a person’s eligible needs and a care plan has been agreed, the local council will either arrange to put services in place or will make a direct payment (explained below) to the service user to arrange their own services.

If you disagree with the assessment of your needs or any aspect of your care plan, you can complain to the local council and ask for the assessment to be reviewed.

Direct payments

Direct payments and personal budgets are a central part of the Government’s personalisation ("Self-Directed Support") agenda that aims to give service users choice and control over their care.

Direct payments give a disabled person more control over the way their assessed care needs are met. Direct payments are cash payments made to the individual by the local council to pay for the care services (e.g. employing your own personal assistants or equipment) that that person has been assessed as needing. This payment is made instead of the local council providing services directly. A direct payment gives you greater choice over how your care package is arranged.

The council has a duty to offer direct payments as an option. It is up to the service user to either accept direct payments or ask the council to arrange services. You can choose a combination of some services arranged by yourself via direct payments as well as some support provided directly by your local social services.

If your son chooses to have direct payments, he will get support to manage them. He needs to contact his local centre for independent living and direct payment support service.  Your local council can provide the contact details. You could get support in looking after this money through independent brokers, agents, user controlled trusts or even the local council. He is entitled to have his personal budget managed in the way that best suits his needs, as well as getting the necessary advice and support.

For more information on personal budgets and direct payments, see:

Benefits

If your son does moves to live independently in his own flat, he will continue to be entitled to Employment and Support Allowance (ESA) and Disability Living Allowance (DLA) as before.

He will also be able to claim Housing Benefit (England, Scotland, Wales)/Housing Benefit (Northern Ireland) and Council Tax Benefit (England, Scotland and Wales) to help pay for his new accommodation.

There are two scenarios and you will both need advice to decide which one is best for you and your son:

  1. You can continue to claim Carer’s Allowance after your son moves out, as long as you are still providing at least 35 hours of care a week. If you receive Income Support in addition to your Carer's Allowance, this will also continue. Your son will get the same rate of ESA as he received while living at home.
  2. However, if your son lives alone, gets either middle or higher rate of DLA care component and has no one receiving Carer’s Allowance for looking after him, his ESA may be increased to include a severe disability premium, which is currently worth an extra £58.20 per week. If he does this, you will not be able to be paid Carer’s Allowance.

 

However, you should both seek advice from a specialist benefits adviser to discuss your benefits options if your son moves out to live independently. You can use the Turn2us Find an Adviser tool to find a local one. 


Complex needs and housing adaptations or repairs

  • Myself and my ex-husband, Robert, share the care needs of our son John (23) whom has complex special needs and requires 24 hour care. He is disabled and has severe learning difficulties and has needed care since birth. He is also doubly incontinent and needs quite a lot of help with aids to help us with caring for him between our homes. He lives with his Dad in an adapted bungalow and stays with me weekends and odd days through week and also if Robert is ill. All we want to do is just care safely. We both had to give up full-time employment to care for John, so financially it is a struggle to say the least. My health is suffering -  I have a slipped disc in my neck through having to lift him to get through the front door - and how will the care carry on then. It is too much for either one of us to care full time.
  • Another problem is my home which had adaptations done 12 years ago through a Disability Facilities Grant (DFG) for John's needs. He had a bedroom/shower room built and level access to the front of the property. This is now however deteriorating and in need of fixing. The paving outside has subsided and this has caused the concrete around the manholes they put in to sink and is now uneven! Flags have sunk to a point where his wheelchair is unstable going over them. The shower extractor fan will not work above the walk in shower he had put in and the front door is no longer big enough for his wheelchair to fit through due to bigger chair! Yet when I ask for help, I get this is not his main residence! I supposed to do if I cannot get help to sort the current issues out and also if they are not addressing his care needs when he stays with me. Debra

Trafford Carers Centre logoKelly Hunter: There appear to be a number of issues that need addressing. Firstly I would say that your own health and wellbeing has to be a priority. As you quite rightly point out, what would happen if you end up in a situation where you are too ill to continue to care?

Make look after yourself and visit your GP if you need to.

Also, the local council has a responsibility to support all carers. The fact that you and your husband share the caring duties means that you both are coping the best you can to continue caring for your son. If one of you was to no longer able to undertake the caring role, then the local council would have to intervene. You can request a Carers Assessment by contacting your local council (link opens in a new window)

You could also request the help of your local carer's centre. They could act as an advocate between yourself and the local council to access help and support. It could also help you look into what types of support could be available to you in relation to grants and funding for the adaptations that you need.  It could also look at making sure you are getting all the benefits you are entitled to and any other help to support you and your husband while caring for your son. 

One of the rules for the Disabled Facilities Grant is that the person on whose behalf you are applying intends to occupy the property as their only or main residence throughout the grant period (which is currently five years). From what you have said, this is not the case in your situation. Therefore I would imagine it would be unlikely that you would be able to progress this source of funding. However, there is another way of looking at this that might ensure that John gets the help he needs.  See Banane Nafeh's reply below.

If you cannot get any further support from your local council social services, you may want to consider applying for a charitable grant to help with the cost of repairs to your home. There are a number of charitable funds which may be able to help you out financially, depending on your background, circumstances and needs. You can use the Turn2us Grants Search database to look for suitable charitable funds.   

 

Banane Nafeh from Disability Rights UKBanane Nafeh:  There is another way of looking at this that might enable John, your ex-husband and you to get the help you need.

John’s choice of where he wants to live and the requirement to ensure that his accommodation is able to meet his needs should be an essential element of his health and social care assessment.

John is 23 years old, so he is an adult. He can choose what his main place of residence is (whether his Dad’s or Mum’s residence). Alternatively, he could choose to live independently or in supported living accommodation and could have his own living-in carers/personal assistants. In any case, he is entitled to have a Health and Social Care Assessment carried out and a care plan devised - one that will enable to live as independently as possible and have an element of choice and control over his living circumstances. The council has a legal duty to assess John’s needs and how they can best be met. There is no reason why this assessment shouldn’t take account of his needs at both places. You could argue that the arrangement you have, whereby John lives part of the time with his father and the other part with his mother, provides him with both physical care and appropriate emotional support. You could also argue this arrangement ensures that both you and your ex-husband are able to maintain your caring role effectively.

If social services agree to assess John in both homes, then there will need to be an assessment by an occupational therapist of both properties to ensure that John can get around safely.

Carer's assessment and direct payments

Carers are entitled to a Carer's Assessment in their own right to enable them to get the support needed to care for the service user. You and your ex-husband could be assessed as carers under exceptional circumstances, especially given that John’s needs are high. It is likely he will meet the council's eligibility criteria as his needs would be considered "substantial"/"critical - a requirement that many councils now have for funding care needs.

John may be able to get direct payments to pay for his support needs. In exceptional circumstances a disabled person can pay a family member to be their personal assistant, but this is not normally allowed.  It is important to get information and advice if John wants to use the direct payments scheme, as the process is complicated and he would have legal obligations as an employer. You can use the Turn2us Find an Adviser tool to find a local adviser.

See also the answer to the question on Living independently above as this also discusses direct payments and personal budgets and contains links to several useful resources.


Further information

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