Balancing Working with Caring for a Disabled Child

Flexible Working requests are made under the Employment Act 2002. Parents of disabled children (up to the age of 18) have the right to request flexible working arrangements. This is not a right to have flexible working arrangements put in place – it is the right to have a request for flexible working considered.

What is flexible working?

Flexible working is a change to hours, time or location of work and includes any method of working which is different to the standard work pattern, for example, flexi-time, home working, job-sharing, shift working, part-time working and term-time working.

This includes:

Adjusted hours
Working from home
Compressed hours
Job sharing

Your employer must consider your request and can only refuse for legitimate business reasons.

How to request flexible working

To request a flexible working arrangement, it is advisable to:

Make the request for flexible working in writing
Outline how your pattern needs to change and why
Explain how refusal would affect your caring responsibilities

What is the best course of action if these are refused?

The approach most conducive to an ongoing working relationship is to reach an amicable agreement. For example, considering alternative approaches such as reorganising shifts or an increase in another employee’s hours instead.
However, where this is proving impossible, the working relationship deteriorates, or you are concerned about losing your job, you should consider raising a grievance and/or seeking advice from a union representative or legal adviser.

Flexible Working requests are made under the Employment Act 2002. Parents of disabled children (up to the age of 18) have the right to request flexible working arrangements. This is not a right to have flexible working arrangements put in place – it is the right to have a request for flexible working considered.

What is flexible working?

Flexible working is a change to hours, time or location of work and includes any method of working which is different to the standard work pattern, for example, flexi-time, home working, job-sharing, shift working, part-time working and term-time working.

This includes:

Adjusted hours
Working from home
Compressed hours
Job sharing

Your employer must consider your request and can only refuse for legitimate business reasons.

How to request flexible working

To request a flexible working arrangement, it is advisable to:

Make the request for flexible working in writing
Outline how your pattern needs to change and why
Explain how refusal would affect your caring responsibilities

What is the best course of action if these are refused?

The approach most conducive to an ongoing working relationship is to reach an amicable agreement. For example, considering alternative approaches such as reorganising shifts or an increase in another employee’s hours instead.
However, where this is proving impossible, the working relationship deteriorates, or you are concerned about losing your job, you should consider raising a grievance and/or seeking advice from a union representative or legal adviser.

You’re entitled to time off for emergencies relating to your child’s care. Time off for dependents under the Employment Rights Act 1996 – the right to a reasonable amount of unpaid time off work where necessary (this does not extend to planned appointments and is intended to cover last minute or emergency situations). A dependent includes a disabled child at any age where you have primary caring responsibility for them.

What counts as an emergency?

Your child falls ill, is injured, or is assaulted.
There is a sudden breakdown in care (e.g., childminder cancels last-minute).
School contacts you about an incident.

There’s no fixed limit on the amount of time—you can take what’s reasonable in the circumstances.

You must let your employer know as soon as possible why you need the time off and how long you expect to be away.

You’re entitled to time off for emergencies relating to your child’s care. Time off for dependents under the Employment Rights Act 1996 – the right to a reasonable amount of unpaid time off work where necessary (this does not extend to planned appointments and is intended to cover last minute or emergency situations). A dependent includes a disabled child at any age where you have primary caring responsibility for them.

What counts as an emergency?

Your child falls ill, is injured, or is assaulted.
There is a sudden breakdown in care (e.g., childminder cancels last-minute).
School contacts you about an incident.

There’s no fixed limit on the amount of time—you can take what’s reasonable in the circumstances.

You must let your employer know as soon as possible why you need the time off and how long you expect to be away.

Under the Employment Rights Act 1996 all employees have statutory right to up to 18 weeks of unpaid parental leave per child (up to 4 weeks per year) after one year’s continuous employment. This must be taken in one week blocks.

Parents of a child with a disability have the right to take this leave more flexibly in short chunks (days/hours) if the child received Disability Living Allowance or PIP.

You must give your employer at least 21 days notice that you intend to take Parental Leave.

Employers can postpone, but not cancel, parental leave for up to 6 months if it causes serious disruption to their organisation. 

Under the Employment Rights Act 1996 all employees have statutory right to up to 18 weeks of unpaid parental leave per child (up to 4 weeks per year) after one year’s continuous employment. This must be taken in one week blocks.

Parents of a child with a disability have the right to take this leave more flexibly in short chunks (days/hours) if the child received Disability Living Allowance or PIP.

You must give your employer at least 21 days notice that you intend to take Parental Leave.

Employers can postpone, but not cancel, parental leave for up to 6 months if it causes serious disruption to their organisation. 

You have the right to Carer's Leave from day one of your employment.

The maximum amount of leave you can take is one week in any 12-month rolling period. The minimum amount of any period of carer’s leave is half a day.

You are required to give notice to your employer when you want to take carer’s leave. You need to give twice as many days’ notice as the length of the leave itself, but the minimum amount of notice you can give is three days. However, an employer can waive the notice requirement if it wishes.

Examples of when you might use Carer's Leave include:

Taking your disabled child to medical appointments
Providing care at home
Time off to arrange longer-term support for someone you provide care for

You have the right to Carer's Leave from day one of your employment.

The maximum amount of leave you can take is one week in any 12-month rolling period. The minimum amount of any period of carer’s leave is half a day.

You are required to give notice to your employer when you want to take carer’s leave. You need to give twice as many days’ notice as the length of the leave itself, but the minimum amount of notice you can give is three days. However, an employer can waive the notice requirement if it wishes.

Examples of when you might use Carer's Leave include:

Taking your disabled child to medical appointments
Providing care at home
Time off to arrange longer-term support for someone you provide care for

Under the Equality Act 2010, it is possible for discrimination to be because of someone else’s disability.

Parents of disabled children can sometimes face unfair treatment not because they are disabled themselves, but because of their child’s disability. This is known as disability discrimination by association.

When can this type of discrimination happen?

You may experience discrimination by association in situations such as:

Your employer overlooks you for training because they assume your child’s disability will make you “unreliable.”
You experience negative comments or harassment linked to your child’s disability.

Direct discrimination and harassment linked to someone else’s disability are unlawful under the Equality Act.

What isn’t covered?

It’s important to know that discrimination by association does not apply to everything under the Equality Act. In particular service providers, schools, and employers are required to make reasonable adjustments for the disabled person themselves, not for someone associated with them.

What parents can do if they think discrimination has happened

1. Keep records

Write down:

What happened
Who was involved
Dates, times, and locations
Any witnesses

2. Ask questions or raise concerns early

You can informally raise the issue with your employer (line manager, HR).

3. Consider a formal complaint

If informal steps don’t resolve the issue, you can use your employer’s grievance procedure

Key points to remember

You are legally protected from discrimination because of your child’s disability.
Direct discrimination and harassment by association are unlawful.
Not all parts of the Equality Act apply, but the core protection is strong.
Keeping evidence and seeking early advice can make a big difference.

The Equality Advisory and Support Service (EASS) provides free advice on discrimination under the Equality Act. EHRC also sets out key rights for those who believe they’ve experienced disability discrimination, including discrimination by association.

Under the Equality Act 2010, it is possible for discrimination to be because of someone else’s disability.

Parents of disabled children can sometimes face unfair treatment not because they are disabled themselves, but because of their child’s disability. This is known as disability discrimination by association.

When can this type of discrimination happen?

You may experience discrimination by association in situations such as:

Your employer overlooks you for training because they assume your child’s disability will make you “unreliable.”
You experience negative comments or harassment linked to your child’s disability.

Direct discrimination and harassment linked to someone else’s disability are unlawful under the Equality Act.

What isn’t covered?

It’s important to know that discrimination by association does not apply to everything under the Equality Act. In particular service providers, schools, and employers are required to make reasonable adjustments for the disabled person themselves, not for someone associated with them.

What parents can do if they think discrimination has happened

1. Keep records

Write down:

What happened
Who was involved
Dates, times, and locations
Any witnesses

2. Ask questions or raise concerns early

You can informally raise the issue with your employer (line manager, HR).

3. Consider a formal complaint

If informal steps don’t resolve the issue, you can use your employer’s grievance procedure

Key points to remember

You are legally protected from discrimination because of your child’s disability.
Direct discrimination and harassment by association are unlawful.
Not all parts of the Equality Act apply, but the core protection is strong.
Keeping evidence and seeking early advice can make a big difference.

The Equality Advisory and Support Service (EASS) provides free advice on discrimination under the Equality Act. EHRC also sets out key rights for those who believe they’ve experienced disability discrimination, including discrimination by association.

Some employers offer more generous policies than the statutory minimum—this may include paid emergency leave or extended periods of time off.

Always check:

Your contract
HR handbook
Internal policies

Some employers offer more generous policies than the statutory minimum—this may include paid emergency leave or extended periods of time off.

Always check:

Your contract
HR handbook
Internal policies

Do I have to bring my child’s illness up at interview?

You are under no obligation to discuss your child’s illness at interview but if you volunteer this information the interviewer should not let it influence their decision.

My work is insisting I increase my hours from now on. I have childcare issues with my disabled son. Can I refuse?

If your contract does not allow for changes to your work hours then your employer will need your agreement to the change.
However, when people are working flexibly, the contract will often say that the employer ‘reserves the right’ to make changes to this term. This does not give an employer carte blanche and Tribunals have typically interpreted these sorts of clauses very restrictively.

I need to take time off for hospital visits. Do I need to make up my hours?

There is no statutory right to time off to attend planned appointments with dependents. You should agree unpaid or annual leave with your employer in advance, or request permanent flexible arrangements.

Do I have to bring my child’s illness up at interview?

You are under no obligation to discuss your child’s illness at interview but if you volunteer this information the interviewer should not let it influence their decision.

My work is insisting I increase my hours from now on. I have childcare issues with my disabled son. Can I refuse?

If your contract does not allow for changes to your work hours then your employer will need your agreement to the change.
However, when people are working flexibly, the contract will often say that the employer ‘reserves the right’ to make changes to this term. This does not give an employer carte blanche and Tribunals have typically interpreted these sorts of clauses very restrictively.

I need to take time off for hospital visits. Do I need to make up my hours?

There is no statutory right to time off to attend planned appointments with dependents. You should agree unpaid or annual leave with your employer in advance, or request permanent flexible arrangements.

Be proactive about discussing your caring responsibilities with your employer.

Let your employer know you are a carer and engage them in a collaborative conversation about how to make things easier for you.

Plan ahead for medical appointments, reviews, therapy sessions and school meetings.

Give as much notice as you can when you need time off and discuss the best way to do it, i.e. is it better to take annual leave, carer's leave, dependant's leave or parental leave?

Know your rights so you can advocate confidently without fear of negative consequences.

Be confident that your employer should respect your caring role and work with you. Be sure of your rights and who you can reach out to if you feel these are not being upheld. Consider joining a union for extra support if you need it.

Be proactive about discussing your caring responsibilities with your employer.

Let your employer know you are a carer and engage them in a collaborative conversation about how to make things easier for you.

Plan ahead for medical appointments, reviews, therapy sessions and school meetings.

Give as much notice as you can when you need time off and discuss the best way to do it, i.e. is it better to take annual leave, carer's leave, dependant's leave or parental leave?

Know your rights so you can advocate confidently without fear of negative consequences.

Be confident that your employer should respect your caring role and work with you. Be sure of your rights and who you can reach out to if you feel these are not being upheld. Consider joining a union for extra support if you need it.

Working Families is the UK’s national charity for working parents and carers. They have lots of helpful information on their website: Working Families - Time Off for Parents and Carers As well as The Working Families Legal Advice Service – an e-mail and telephone helpline for employment and rights‑based queries.

The Advisory, Conciliation and Arbitration Service (ACAS) work with millions of employers and employees every year to improve workplace relationships. They provide free advice on employment rights, rules and best practice, free letters, forms and policy documents to adapt and dispute resolution services

Acas -Taking parental leave

Government Guidance - Time off for family and dependants

GOV.UK - Time off for family and dependants

Contact - Charity for families of disabled people

Contact have a huge range of information on their website, including:

An A-Z of medical conditions
Information & advice
A Listening Ear Service
Workshops & events
Parent carer participation Opportunities
Information on Campaigns & research

Contact - Flexible working and time off

Carer's UK provide information and advice on caring, help carers connect with each other, campaign with carers for lasting change, and use innovation to improve services.

Carers UK provide:

Information and guidance on their website
A Helpline available on 0808 808 7777 from Monday to Friday, 9am – 6pm (including Bank Holidays).
A change to connect with other carers via the forum Carers Connect or their weekly Care for a Cuppas, where you can chat with other carers via Zoom.
Support for your wellbeing on their Carers Active Hub to help you stay active while caring, including short exercise videos, carer stories and expert tips.

Carers UK | Your right to parental leave

My Family, Our Needs provides advice and information for parents and carers of children with additional needs. You are able to ask their experts questions if you cannot find the answer you need. You can also look through past answers to questions other parents have asked.

My Family Our Needs - Work | Supporting Yourself