Response to Alzheimer Europe questionnaire on support for carers

Can you identify THREE good measures in your country that enable carers of persons with Alzheimer’s disease to reconcile family care and a career ?

1. The Work and Families Act 2006 and the Employment Rights Act 1996 give working carers rights to help them manage work and caring including the right to request flexible work patterns and leave entitlement.

2. In June 2008 the Government published its UK strategy for carers. The strategy sets out the Governments short and long term plans for supporting carers in the UK. The strategy recognises that the current systems available to help people return to work do not include carers nor meet the specific needs of people who have been involved in caring. The new strategy outlines plans to offer better levels of support for carers who wish to return to work and which are responsive to the particular needs of carers.

3. The Pension Act 2007 makes it easier for carers who cannot work or work part time to accrue rights to a full basic state retirement pension and to the state second pension. It does this by reducing the number of years national insurance contributions or credits required to accrue a full Basic State Pension from 44 years (for men) 39 years (for women) to 30 years. The Act also abolishes Home Responsibilities Protection from 2010 and replaces it with a more generous system of Carers Credits. Carers Credits will be available to those caring for a disabled person for 20 hours per week (35 hours under home responsibilities protection) This means that the new credit will be available to more carers than the current system and as a result more carers will be able to satisfy the contribution conditions to qualify for a full basic state pension and the state second pension.

Can you identify THREE measures in your country that do not deliver the intended goal of caring for a person with dementia and resuming a career?

1. The main social security benefit for carers is Carer’s Allowance. Carer’s Allowance is paid at £50.55 per week and cannot be paid at all to carers who work and have net earnings of more than £95 per week, or to full time students (defined as 20 hours or more per week). Carer’s Allowance does not provide reasonable level of income and as a result many carers experience financial hardship. Withdrawing Carer’s Allowance once net earnings exceed £95 does not promote or support carers to combine work with caring or a return to work. Similarly, preventing carers who are studying 20 hours or more per week from receiving carers allowance means that carers lose the opportunity to obtain qualifications or skills that would be helpful to them return to work when their caring role ends.

2. The Department for Work and Pensions (DWP) is the government department responsible for the social security system in the UK. Jobcentre Plus is the part of the DWP that deals with people of working age and has personal advisers to assist people who have been claiming benefits return to work. Jobcentre Plus developed as part of the governments Welfare to Work Strategy aimed at reducing the numbers of people claiming benefits by steering them towards retraining or employment. Jobcentre plus offers a “New Deal” service to specific groups of people, who have been claiming certain benefits, to help them back into employment. The groups include lone parents, young people, people over 50, and people who have a disability. Anyone planning a return to work can contact Jobcentre Plus but greater levels of support are given to those who qualify for the new deal schemes. There is no existing new deal for carers so unless they happen to fall within one of the categories above the help they get will provide less support. Even if they do fall within the above categories the help the get will not be tailored to recognize the specific needs of carers or former carers. (This may be about to change see second answer to question 1 above)

3. Services available to people who need care do not take sufficient account of carers who work or want to work. For example a carer may work form 9 – 5 pm but services are from 10 -4pm. As a result carers may find it hard to get a job or be under real pressure trying to sustain a job and care for someone at the same time.

Can you suggest THREE measures that would support the carers of people with dementia to go resume a career after a break caring for a person with dementia ?

1. Carers Benefits that recognises the contribution of carers and provide a reasonable level of income to those carers who are unable to work because of their caring commitments and that support those who wish to combine work with caring without loss of benefit (at present Carers Allowance is withdrawn if a working carer’s net earnings exceed £95 per week). Carers Allowance cannot be paid to people who are classed as full time students (defined as 20 hours of supervised study per week). This is a barrier to carers who wish to prepare for employment after their caring role ends. Allowing Carers benefits to be paid to those who combine study with their caring role would enhance their chances of future employment.

2. Carers should have the right not to be discriminated at work and to be treated fairly. Carers should not feel their caring responsibilities.that affect how they are treated by employers or their chances of being offered a job.

3. Services that take account of the work commitments of Carers. Many carers feel the services provided to the person they care for do not take account of the hours that the carer works. Need not only flexibility from employers but from the services so that they can successfully combine their work commitments with their caring role.

Is there anything in place in your country that supports these carers to go back to a paid job when their caring activities end?

The support available to carers to return to work may vary indifferent parts of the UK. Devolved government means that provisions may vary between Scotland, England, Wales and Northern Ireland. However, some issues, like social security, remain the responsibility of the UK Government and therefore apply across the UK.

The Department for Work and Pensions (DWP) is the government department responsible for the social security system in the UK. Jobcentre Plus is the part of the DWP that deals with people of working age and has personal advisers to assist people who have been claiming benefits return to work. Jobcentre Plus developed as part of the governments Welfare to Work Strategy aimed at reducing the numbers of people claiming benefits by steering them towards retraining or employment. Jobcentre plus offers a “New Deal” service to specific groups of people, who have been claiming certain benefits, to help them back into employment. The groups include lone parents, young people, people over 50, and people who have a disability. Anyone planning a return to work can contact Jobcentre Plus but greater levels of support are given to those who qualify for the new deal schemes. There is no existing new deal for carers so unless they happen to fall within one of the categories above the help they get will provide less support. Even if they do fall within the above categories the help the get will not be tailored to recognize the specific needs of carers or former carers. The Jobcentre in general can offer

• training programs for former carers to learn new skills or refresh existing skills
• support to make applications, write your CV or prepare for interviews
• financial help when you move into work (this can include extended payments of benefits for up to four weeks to cover rent and council tax costs)

The level of help available to carers who want to return to work may be about to change. In June 2008 the Government published its UK strategy for carers. The strategy sets out the Governments short and long term plans for supporting carers in the UK. The strategy “Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own” This strategy recognises that Jobcentre Plus does not currently meet the needs of carers and outlines the Governments aims to improve services to Carers. The strategy is available at the following link.

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345

Vocational Training

Learning for Living is an initiative between Carers UK and in Scotland (Carers Scotland) and City and Guilds. It is a scheme to offer a qualification and learning resource through is an online learning programme for carers. It builds on the skills that carers and former carers have developed in their caring roles and is intended to help them return to work.

You can find out more about this at

http://www.carerscotland.org/Policyandpractice/Workingforcarersandemployment/LearningforLiving

Are there any pension rights for the carers?

The State Retirement Pension in the UK is based on an individual’s national insurance contributions throughout their working life. Under some circumstances people who are not working and paying national insurance contributions can receive national insurance credits that help towards their State Retirement Pension. Carers who are unable to work because they are caring for someone for 35 hours or more per week can receive national insurance credits in this way by claiming Carer’s Allowance (a social security benefit paid to certain carers) or Home Responsibilities Protection (a scheme to provide national insurance credits to people who have child care or caring responsibilities).

National Insurance Credits can help towards accruing the Basic State Retirement Pension and state second pension. Generally an individual can only contribute to an occupational pension or personal pension if they have earned income from employment. This means that while they are caring for someone carers have less opportunity to make provision for their retirement beyond the basic state retirement pension. Clearly this has a financial impact on carers, particularly who have been caring for many years, once they reach retirement age.

Recent Changes
The Pension Act 2007 reduces the number of years national insurance contributions or credits required to accrue a full Basic State Pension from 44 years (for men) 39 years (for women) to 30 years. The Act also abolishes Home Responsibilities Protection from 2010 and replaces it with a more generous system of Carers Credits. Carers Credits will be available to those caring for a disabled person for 20 hours per week (35 hours under home responsibilities protection) This means that the new credit will be available to more carers than the current system and as a result more carers will be able to satisfy the contribution conditions to qualify for a full basic state pension.

What is in place to help those carers who have become impoverished because of caring for a person with dementia at home?

Carers can claim a social security benefit called Carer’s Allowance. It is a non means tested benefit paid at £50.55 per week with additional amounts if the claimant has a dependent adult or children. Carers can work and be paid Carer’s Allowance at the same time provided their net earnings do no exceed £95 per week. This means that only those in part time low paid jobs are likely to continue to receive Carer’s Allowance.

Carers Allowance cannot be paid to more than one person even if there is more than one carer looking after the same person. This means that one carer may lose out.

In some circumstances the person who needs the care can lose benefit if someone else claims Carer’s Allowance, so there are many cases where cares do not claim Carer’s Allowance because it will have a detrimental financial effect on the person that they care for.

Carers can also claim other social security benefits such as Income Support (provides a minimum level of income depending on individual circumstances) and Housing and council Tax Benefit (helps those who are liable to pay rent or council tax). However, these benefits are means tested and so many carers who have modest savings or income may have no entitlement.

Carers Allowance is one of a group of benefits known as earnings replacement benefits but at £50.55 if fails to provide even a basic level of income for carers.

The UK Government has announced its intention to review the benefits available to carers.

Is their role recognised in any way?

Carers have certain right in employment but, because of devolved government, these vary across the UK although some of the measures are UK wide.

Rights to a carers assessment in respect of carers who also work or want to work

In the UK carers have right to be assessed on their ability to care. This means that local authorities should take account of the carers needs when planning services for the person who needs the care. Carers Assessments cannot lead to services for the carer but may influence the service offered to the person who needs care. There are different provisions on the obligations for local authorities to take account of the fact that a carer works or wants to work when carrying out a carers assessment.

The Carers (Equal Opportunities) Act 2004 (effective in England in Wales) creates a duty on local authorities to offer carers an assessment of their needs and requires the local authority to take into consideration whether the carer works or wants to work.

In Scotland Carers have a right to an assessment by virtue of the Carers Recognition of Services Act 1995 which was enhanced by the Community Care and Health (Scotland) Act 2002. However, there is no statutory requirement on local authorities to consider if the carer works or wants to work although the guidance issued to Scottish Local Authorities does say that this should be considered.

Other rights at work

The Work and Families Act 2006 and the Employment Rights Act 1996 give working carers rights to help them manage work and caring including the right to request flexible work and leave entitlement.

Right to request Flexible working

The Work and Families Act 2006 took effect in April 2007 and extends the rights of carers to ask there employer for more flexible working patterns to fit with their caring responsibilities. This might mean starting later or earlier or working over four days instead of five etc.

The right to time off in emergencies

This gives all employees the right to take a 'reasonable' amount of time off work to deal with an emergency involving a dependant. Whether the time off is paid or not is at the discretion of the employer.

Parental leave

For Parents who have at least one year's continuous service with their employer and who are responsible for a child aged under 5, or under 18 if the child is disabled. They are entitled to:

• 13 weeks (unpaid) leave per child to look after a child, or
• 18 weeks (unpaid) leave per child to look after a disabled child

• Carers Benefits that recognises the contribution of carers and provide a reasonable level of income to those carers who are unable to work because of their caring commitments and that support those who wish to combine work with caring without loss of benefit (at present Carers Allowance is withdrawn if a working carers net earnings exceed £95 per week).
• Carers Allowance cannot be paid to people who are classed as full time students (defined as 20 hours of supervised study per week). This is a barrier to carers who wish to prepare for employment after their caring role ends. Allowing Carers benefits to be paid to those who combine study with their caring role would enhance their chances of future employment.
• Carers should have the right not to be discriminated at work and to be treated fairly. Carers should not feel that their chances of being offered a job, or how they are treated in a job are not affected by their caring responsibilities.
• In Scotland the same statutory rights as England and Wales for carers assessments to take account of the fact that a carer works or wants to work.

The following link is to a report compiled by Carers UK. The report is the summary of a survey of 3,000 carers across the UK to determine the priorities for carers. They report summarises the top 5 priorities for carers in the UK.

Carers voices report (pdf)

Jim Pearson
Welfare Rights Manager
July 2008