Last updated June 2007.

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Introduction

For many parents of disabled children it is very difficult to think about paid employment, particularly if your child needs a lot of care. This factsheet is aimed at parents who are thinking about returning to work or are currently in employment. Many parents tell us that getting a job is not only about the income it provides, they say work gives them the opportunity to make new friends and develop skills outside of their caring role. In this guide you will find information about what support is available if you are thinking of going back to work and your rights when you are in work.

Returning to work

Sometimes parents with disabled children are made to feel like they are ‘expected’ to stay at home and care for their child. However, with support, some parents do manage to work outside the home.

Research by the Joseph Rowntree Foundation [1] illustrated that one of the problems for parent carers was the lack of information about locally based services, benefits and employment policies.

The first steps

You have learned a lot of valuable skills as a parent and many of these can be transferred to work. However, if you have been out of paid employment for some time, it can be daunting to think about returning to work.

You may need to update your skills and there are many ways to do this. Some parents start by trying voluntary work, or by going to college part-time. Your local council for voluntary services (CVS) or volunteer centre will be able to tell you about volunteering opportunities in your area. Alternatively, visit Web: http://www.volunteering.org.uk

For information about courses, you can call the Learn Direct Helpline Tel: 0800 100 900 (for Textphone users dial 18001 then the helpline number to talk to an adviser via Typetalk) or visit Web: http://www.learndirect.co.uk

Alternatively contact your local college.

Schemes to help the move back to work

New Deal

This is a scheme set up across the UK by the government as part of their ‘welfare to work’ strategy. Its aim is to narrow the gap between the skills those wanting to return to work have, and the skills that employers demand. Participants in the New Deal may also be able to access help with work-related expenses such as childcare and travel costs. There are schemes designed to help different groups, including:

• lone parents;
• people over 50 years of age;
• people with disabilities;
• partners of people claiming Jobseeker’s Allowance;
• young people.

More information about the scheme can be found by contacting your local Jobcentre Plus
Web: http://www.newdeal.gov.uk
Tel: 0845 606 2626 (helpline) Textphone: 0845 606 0680

Support services while you’re at work

You may have family and friends to help out while you’re at work but many parents with disabled children need regular alternative care to enable them to carry out paid work.

Finding childcare

Childcare is often a major obstacle for parents considering returning to work in terms of cost, availability and suitability.

Locally, an organisation such as a children’s information service (CIS) or family information service is responsible for providing all parents with information about the different types of childcare and early education available. These services are improving the advice and information they offer to parents with disabled children as a result of new childcare law, the Childcare Act 2006.

To find your local CIS in England and Wales
Tel: 0800 096 0296 or visit Web: http://www.childcarelink.gov.uk

For your local CIS in Scotland, contact Scottish Childcare at Web: http://tinyurl.com/2gldqm

In Northern Ireland you should contact the Northern Ireland Childcare Advice and Information Helpline on Tel: 0800 028 3008 or visit Web: http://www.employersforchildcare.org

Your child’s school or local children’s centre may also offer childcare.

You may find the Contact a Family factsheet ‘Finding and paying for childcare’ helpful. It is available free from our helpline on Tel: 0808 808 3555. It contains information on different forms of childcare, help that may be available to pay for childcare and where to go to find out about childcare in your area.

ACE (Action for Carers and Employment) National

Contact a Family has been working with Carers UK to look at how alternative care services can help carers work outside the home, following a carers assessment. This includes help in emergencies and using direct payments. It also includes caseworker support for people having difficulty getting the right package of services to help them stay in or return to work.

If you would like to know more about ACE National visit: Web: http://www.acecarers.org.uk
Tel: 020 7566 7641

For information on carers assessments visit Web: http://tinyurl.com/2go4zo

A parent’s perspective “Being a mum to three children, who had taken the option to stay at home while they were young, meant that the path back into paid employment was going to be a little rocky. Being a mum with one child having complex needs, epilepsy and learning difficulties meant it was an uphill road. Still, it was one I was determined to pursue. Why should my chances be limited and why should I not have the same opportunities as others? I started off with a part-time job of 15 hours a week with our local CVS. I nervously went to my first day convinced we could manage, childcare in place for all three. After about ten minutes, I was told, ‘Oh, by the way good news - we’ve had some extra funding so we’ll be increasing your hours to 25 per week.’ Trying to present a calm exterior I smiled and gracefully accepted. Inside I was in blind panic. I rushed home after work and told my husband. Three weeks before the start of the summer holidays and my part-time job was nearly full-time! After much brow beating, telephone calls and discussion we decided it would be fine. A clever combination of summer playschemes, annual leave and flexible working would see us through. If I could get through this August there should be no stopping me. It worked.”

Employment rights

As a working parent you may have a legal right to take time off in certain circumstances. You may also be able to request a change in your working week to help you juggle your work and caring responsibilities. Details of these specific employment rights are outlined below. For the purposes of the information below a disabled child is one for whom a parent is receiving Disability Living Allowance. More detailed information on this benefit can be found in the Contact a Family factsheet ‘A guide to claiming Disability Living Allowance for children’, available free from our helpline.

Flexible working

Parents with children under six years of age or disabled children under 18 have the right to apply to their employer for flexible working arrangements. From April 2007 the right to request flexible working was extended to relatives looking after disabled adults aged 18 and over.

Employers have a statutory duty to consider such requests seriously, and will only be able to refuse when there is a clear business reason. However, it is not an automatic right since there will be circumstances where a business cannot accommodate the request. To be eligible to make a request for flexible working under these provisions you must:

• have a child under six years of age, or 18 years of age in the case of a disabled child; or be looking after a disabled adult aged 18 and over;
• have worked for your employer for 26 weeks on the date the application is made;
• not be an agency worker or member of the armed forces;
• not have made an application for flexible working in the past 12 months.

To exercise this right you need to make the initial written application to your employer. An employee can request a change to the hours they work, a change to the times they work, or to work from home. Since any changes will be permanent it is important to consider the future implications carefully. This may include any drop in salary, and the impact that any reduction in hours may have on state benefits such as Working Tax Credit.

Once your employer has received the application they have 28 days to organise a meeting. This is an opportunity for both parties to discuss the desired work pattern and its impact and to consider any alternatives if the requested pattern of work is difficult to implement.

Within 14 days of this meeting your employer must write to you either confirming the new work pattern and start date, or providing an explanation of why your request can’t be accommodated. If your employer feels more time is needed to take further action then they must let you know in writing within 14 days of the meeting.

If you are unhappy with their decision you have 14 days to appeal. During this time you may wish to consult an organisation like ACAS for further advice, something you can do at any point in the process. Contact details for ACAS and other organisations are in the ‘Useful organisations’ section

Parental leave

Parental leave gives parents of young or disabled children the right to take time off work to look after their children. This leave is normally unpaid. This section explains what parental leave an employer must allow as a statutory minimum. Some employers may have more generous provisions and also give leave to parents who don’t qualify under the statutory scheme.

The law says that parents who qualify must be allowed at least 13 weeks unpaid leave for each child. If the child is disabled, it is 18 weeks. To qualify for leave:

• parents must have worked for an employer continuously for one year and must give at least 21 days’ notice. They must also use the leave time to care for their child;
• parents with a child born on or after 15th December 1999 can take leave up until the child’s 5th birthday (if adopted, up to five years after the date of placement, or up to their 18th birthday, whichever is sooner);
• parents of disabled children born on or after 15th December 1994 can take leave up until the child’s 18th birthday.

Normally leave must be taken in blocks of one week or more, up to a maximum of four weeks per year. However, parents of disabled children can take leave in multiples of one day.

A family’s perspective: Being flexible is key! “We are the standard family of four: husband, wife and two children aged 11 and 9, but that’s where the similarity ends. Our nine year old has a disability. Working and caring has always been a joint responsibility. When the boys were babies, Phil worked full-time and I stayed at home. When the boys started school, I started working in the evenings and Phil looked after the boys. When the number of appointments and meetings with health, then education and then social services started to increase Phil started working part-time. He had to, so that he could attend the endless stream of appointments and meetings that always take place during working hours. When I started working during the day, work had to fit in with our needs as a family, so employers became a partner in meeting our family’s needs.”

Time off for dependents

You can take time off work to deal with an emergency relating to a dependent. This could be a parent, partner, child, or someone for whom an individual has sole care.

An emergency is when someone who depends on you:

• is ill and needs your help;
• is involved in an accident or assaulted;
• needs you to arrange their longer term care;
• needs you to deal with an unexpected disruption or breakdown in care, such as a childminder or nurse failing to turn up;
• goes into labour;
• dies, and you need to make funeral arrangements or attend the funeral.

It does not include situations of which you have advance warning. In such situations, you would need to take parental leave (see above), annual leave or other leave available. Time off for dependants only covers the time taken to make alternative arrangements, for anything longer term you will need to use parental, annual or other leave. In addition you must notify your employer of your absence as soon as possible. The time off is usually unpaid although this depends on the terms of your contract of employment.

Maternity, paternity and adoption rights

All pregnant employees are entitled to 12 months’ maternity leave. As long as you have worked for your employer for at least 26 weeks by the 15th week before your baby is due, you will also be eligible for Statutory Maternity Pay (SMP). You can be paid this for the first 39 weeks of your leave. For the first six weeks SMP is 90 per cent of your average earnings. For the remaining 33 weeks you get either £112.75 per week, or 90 per cent of earnings, whichever is less. The rules are different if your child was born before 1st April 2007. Contact the helpline for further details.

Those who adopt children are entitled to up to 52 weeks’ adoption leave. If you have worked for your employer for at least 26 weeks by the date you are matched with a child, you can be paid statutory adoption pay for the first 39 weeks. This is paid at the rate of £112.75 per week, or 90 per cent of earnings, whichever is less. There is also the option of taking a further 13 weeks leave, usually unpaid. Leave may be taken by either partner if a couple adopt. The rules are different if a child was placed with you for adoption prior to 1st April 2007. Call our helpline for further details.

Fathers are also entitled to paternity leave for either one week or two consecutive weeks, paid at the rate of £112.75 per week or 90 per cent of earnings, whichever is less. To qualify for paternity leave you must have worked for an employer for 26 weeks by the 15th week before the baby is due, and be the baby’s biological father or the mother’s husband or partner.

Please note that if your average earnings are less than the lower earnings limit (£87 per week for April 2006-07) you may not qualify for Statutory Maternity Pay, Statutory Adoption Pay or Statutory Paternity Pay. Seek further advice if this applies to you. Other support may be available such as Maternity Allowance or certain state benefits.

The government intends to extend Statutory Maternity Pay and Adoption Pay to 52 weeks. It also intends to extend Statutory Paternity Leave to six months, the first three of which will be paid, provided certain criteria are met. At the time of writing there is no timetable for when these changes will happen.

More Information

Please note that the above is not an authoritative statement of law. The Department for Business, Enterprise and Regulatory Reform (DBERR) publish a range of leaflets on the issues mentioned above. If you have any queries about employment rights, and for contact details of the DBERR, see ‘Useful organisations’ at the end of this factsheet.

Benefits and work

Returning to work is likely to alter your financial position. It is important that you get advice as soon as possible. Contact a Family employ welfare rights specialists who can offer advice on whether your financial situation will improve if you return to work, and if so, by how much. To access this service either call the Contact a Family helpline or contact us at e-mail: helpline@cafamily.org.uk

Benefits which ARE NOT affected by going back to work

Disability Living Allowance (DLA)
DLA is the main benefit for disabled children. This is not affected by work or earnings and you should continue to receive this in full.

Child Benefit
Child Benefit is not affected by work or earnings and you should continue to receive this in full.

Benefits which ARE affected by work or earnings

Carer’s Allowance

You can receive Carer’s Allowance so long as your wages do not exceed an earnings limit. This figure is £87 per week for the year April 2007-08. In calculating earnings, deductions are made for tax and national insurance contributions. Childcare costs of up to half of your earnings can also be deducted, so long as you are paying someone other than a close relative to provide this care.

Income support (IS) and income-based Jobseeker’s Allowance (ibJSA)

You cannot usually qualify for IS or ibJSA if you work 16 hours or more a week, or if your partner works more than 24 hours a week. However some carers can claim regardless of the number of hours worked. Even if you are still eligible for IS or ibJSA, your earnings are likely to reduce your entitlement and may take you off benefit altogether.

Council Tax and Housing Benefit

If you receive IS or ibJSA, you should also get Housing Benefit towards rent and Council Tax Benefit to help with your council tax. In Northern Ireland you may qualify for rent and rate rebates. If you stop getting IS or ibJSA because you start working, you may still qualify for some Housing Benefit and Council Tax Benefit. The amount you receive will depend on your income (including earnings) and savings. In calculating these two benefits it is sometimes possible for certain childcare costs to be deducted from your earnings.

Child Tax Credit

The Child Tax Credit is paid to people who look after a child under 16 years of age or under 20 if they remain in certain types of education or training. The amount paid depends on your income and personal circumstances and you may get extra if you have a disabled child. While Child Tax Credit can be paid both in and out of work, your earnings can affect the amount you receive. If you qualify for Child Tax Credit but not Working Tax Credit, the amount of tax credit will be reduced if your annual income for tax credit purposes is more than £14,495. If you do qualify for Working Tax Credit (see section on ‘In work benefits’) the amount of tax credit will be reduced if your annual income is more than £5,220.

In work benefits

Working Tax Credit

Working Tax Credit is a means-tested credit for working people on a low income. To qualify you must be:

• aged 16 years or over;
• living in the UK and not subject to immigration control (with some exceptions);
• working for at least 16 hours per week and be responsible for one or more children.

You should note that some other workers without children (for example, disabled workers) are also able to claim Working Tax Credit. If you do not care for a child you should seek advice from a local CAB or welfare rights service.

If you qualify for Working Tax Credit the amount you will receive depends on your income and personal circumstances. For example, extra amounts will be added if you have a partner or if you are a single parent. There are also extra amounts for disabled workers, people who work more than 30 hours a week, and to help meet certain childcare costs.

For detailed information on eligible forms of childcare and on how average childcare costs are calculated see our factsheet ‘The tax credits guide’, available free from our helpline. You can also call them to speak to an adviser.

You can contact the Tax Credit Helpline on Tel: 0845 300 3900 (Text: 0845 300 3909). Lines are open seven days a week from 8am-8pm.

If you are working you may still get help with healthcare costs such as prescriptions and dental treatment. Whether you qualify for help with these costs will depend on your income and personal circumstances. For more information see our free factsheet on ‘Benefits, tax credits and other financial help’, available from the helpline.

Extra financial help returning to work

Extended payments of Housing Benefit and Council Tax Benefit.

If you were getting IS, ibJSA, Incapacity Benefit or Severe Disablement Allowance (SDA) for at least 26 weeks and this stops because you are now working more than 16 hours a week, you can receive an extra four weeks’ Housing Benefit and Council Tax Benefit at the existing rate. To qualify for extended payments you must expect to be working for at least five weeks. To access this help you must inform your local authority within four weeks of starting a new job/increasing your working hours. Once the extended payments stop you may still be able to get some Housing Benefit or Council Tax Benefit based on your new circumstances, but you will need to make a new claim.

Mortgage interest help

IS and ibJSA can include help towards mortgage interest payments. If you have been claiming one of these benefits for at least 26 weeks and this stops because you are working more than 16 hours a week, any payments towards mortgage interest can continue for an extra four weeks. To access this help, simply inform your local Jobcentre Plus office that you are starting work.

Job Grant

If you take up work of 16 hours or more you may be entitled to a one-off Job Grant. To access this lump sum you must have previously spent at least 26 weeks on income support, ibJSA, Incapacity Benefit or SDA and your job must be expected to last for at least five weeks. If you were claiming ibJSA then you must normally be aged over 25 years of age to qualify. However this age restriction does not apply to lone parents or to people who were in receipt of Income Support, Incapacity Benefit or SDA. Lone parents and couples with children will receive a Job Grant of £250, those without children will get £100. To access a Job Grant contact your local Jobcentre Plus office.

Child Maintenance Bonus

If you have been on IS/ibJSA since before 3rd March 2003 and have also been receiving child maintenance payments, you may be able to apply for a one-off payment when you return to work. Contact the helpline for further details.

New Deal Childcare Assist

Lone parents who are participating in the New Deal for Lone Parents and partners who are participating in the New Deal for Partners may get a one-off payment to pay for approved childcare during the week immediately before they start a job. To qualify the job must involve at least eight hours a week and you must have children who will need care when you are at work. This payment is intended to allow you time to prepare for your new job and to help your child settle into a childcare place. See the section on the ‘New Deal’

New Deal Childcare Subsidy

This provides help with approved childcare costs if you start part-time work of less than 16 hours a week and are still entitled to Income Support. To qualify you must have found your job via the New Deal for Lone Parents or the New Deal for Partners. Contact your New Deal advisor for more information on this scheme.

Extra help in pilot areas

In some parts of the UK, the government are running pilot schemes offering extra support to help lone parents move into employment. This includes an In-Work Credit of £40 per week paid during the first year of starting a new job. Some areas offer a £20 per week premium to lone parents who are taking steps to look for work. In some parts of London some of these schemes are not only open to lone parents but to other parents as well. If you would like to find out if your area is covered by one of these pilot schemes contact your local citizens advice bureau (CAB) or local Jobcentre Plus office.

Useful organisations

Action for Carers and Employment (ACE National)/Carers UK
Carers UK, 20-25 Glasshouse Yard, London EC1A 4JT
Tel: 020 7490 8818
Web: http://www.acecarers.org.uk

ACE National is a development partnership, led by Carers UK. They campaign to support the inclusion of carers in training and work.

ACAS (Advisory, Conciliation and Arbitration Service)
Brandon House, 180 Borough High Street, London SE1 1LW
Helpline: 08457 474747 Helpline
Web: http://www.acas.org.uk

Offers a free confidential advice service to anyone seeking information on employment matters.

Daycare Trust
21 St. George’s Road, London SE1 6ES
Tel: 020 7840 3350
Web: http://www.daycaretrust.org.uk

Daycare Trust is the national childcare campaign. They promote quality, affordable childcare for all and advise parents, providers, employers and policy makers on key childcare issues.

Department for Business, Enterprise and Regulatory Reform (DBERR)
1 Victoria Street, London SW1H 0ET
DBERR Publications Orderline Tel: 0845 015 0010
Web: http://www.dti.gov.uk

Supplies leaflets on a range of employment issues including flexible working and parental leave for both employers and employees. Provides detailed information on employment rights.

Direct Gov
Government information and services
Carers and employment.
Web: http://tinyurl.com/2t86te

Tiger (Tailored Interactive Guidance on Employment Rights)
Web: http://tinyurl.com/2yeqqj

Employers for childcare
87 Main Street, Moira, BT67 OLH
Tel: 0800 028 3008
Web: http://www.employersforchildcare.org

Helps working parents find childcare solutions.

Equality Commission for Northern Ireland
Equality House, 7-9 Shaftesbury Square, Belfast, BT2 7DP
Tel: 028 90 890 890
Textphone: 028 90 500 589
Web: http://equalityni.org

Provides information and advice on issues of discrimination and equal opportunities in Northern Ireland.

Equal Opportunities Commission (EOC)
Arndale House, Arndale Centre, Manchester M4 3EQ
Tel: 0845 601 5901
Web: http://www.eoc.org.uk

The Disability Rights Commission (DRC) will merge with the EOC in October 2007 to form the Commission for Equality and Human Rights. The web link above has contact details for EOC Scotland and EOC Wales.

Jobcentre Plus
Web: http://www.jobcentreplus.gov.uk

Part of the Department for Work and Pensions. In some areas they offer a fully integrated work and benefits service and this is planned to be introduced throughout the UK.

Labour Relations Agency
2-8 Gordon Street, Belfast BT1 2LG
Tel: 028 9032 1442
Web: http://www.lra.org.uk

Offers an impartial and confidential advice service to employers and employees in Northern Ireland.

National Childminding Association
Royal Court, 81 Tweedy Road, Bromley BR1 1TG
Tel: 0800 169 4486
Web: http://www.ncma.org.uk

Offers help and support with all areas of childminding, including pay and conditions, contracts, benefits and much more.

Northern Ireland Childminding Association
16-18 Mill Street, Newtownards, BT23 4LU
Tel: 028 9181 1015
Web: http://www.nicma.org

Works to support and develop registered home-based childcare. Provides a range of services to support childminders, parents and children.

National Group on Homeworking
Office 26, 30-38 Dock Street, Leeds LS10 1JF
Advice Line: 0800 174 095 (Mon-Fri, 10am-12.30pm and 1-3.30pm)
Web: http://www.ngh.org.uk

The National Group on Homeworking is a non-governmental organisation which campaigns for improved employment rights and condition for homeworkers.

Sure Start/Department for Children, Schools and Families
Caxton House, Tothill Street London SW1H 9NA
Tel: 0870 000 2288
Web: http://www.surestart.gov.uk

Government support for children, parents and communities including details of local Sure Start children’s centres.

Sure Start Scotland
Web: http://tinyurl.com/2lvg4e

Cymorth (Wales) (including Sure Start)
Web: http://tinyurl.com/34e3hf

Sure Start Northern Ireland
Web: http://tinyurl.com/2l3mcs

Working Families
1-3 Berry Street, London EC1V 0AA
Tel: 0207 253 7423
Web: http://www.workingfamilies.org.uk
Helpline: 0800 013 0313 (Wed-Fri, 9.30am-1pm and 2-4.30pm)

Has an established network for working parents of disabled children.

Useful reading

Caring for Sick or Disabled Children: Parents’ experiences of combining work and care
By Carers UK and Contact a Family, as part of the ACE National (Action for Carers and Employment) partnership.

Looks in detail at parents’ experiences, attitudes and aspirations around work.

Executive summary
Web: http://tinyurl.com/2gpg9x
or the full report
Web: http://tinyurl.com/26r7su

Managing more than most: a statistical analysis of families with sick and disabled children
By Lisa Buckner and Sue Yeandle from Leeds University.

Full report on
Web: http://tinyurl.com/25gfzc
Copies available from:
Contact a Family
Tel: 020 7608 8700
e-mail: info@cafamily.org.uk
Website: http:/www.cafamily.org.uk

References

1 Combining work and care: working parents of disabled children, 1998, Joseph Rowntree Foundation