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Page last updated: April 2024

This is the main benefit for carers. You may qualify for this benefit if you provide at least 35 hours of care per week to your child who must receive the care component of Disability Living Allowance at the middle or highest rate. It is not means-tested so it does not matter what savings you have. It may though be affected by the income you earn or other benefits you or the person you care for receive. Also, if you share the care of your child with someone else and you each provide at least 35 hours a week care, only one of you can get Carer’s Allowance for your child.

For more information and eligibility:

Contact for Families with Disabled Children: Carers Allowance >

Carers UK: Carers Allowance >

In Scotland the equivalent benefit is Carers Support Payment

You can request a carer’s assessment from your Local Authority (LA) to see if you can get support for your caring role.

Even if your child does not have ‘eligible needs’ that have been agreed via a Needs Assessment (see the tab on this page), you can still request a Carer’s Assessment.

In some areas, other organisations may complete a Carer’s Assessment for the LA, but you still have to contact your LA to ask for the Assessment.

If you are not sure which LA you come under, type your postcode into this search bar.

You can find further information on making your carer’s assessment request, from Carers UK:

Contact for Families With Disabled Children – Carers Assessments >

You may also want to read about the Carer’s Allowance on our Financial Benefits tab above.

Before your assessment, it may be helpful to keep a diary of day and night tasks for a week and record:

  • What care you give your child. Record details of the time all these tasks take you on your worst day. This blank diary template may be helpful.
  • How you manage to maintain your home and look after other family members. This may include how you organise this each day – the time it takes you to shop, cook, clear up, do housework, take children to and from school etc.

Write down:

  • How your caring role has impacted on your work or education. Have you had to reduce your hours? Have you had to have time off
  • What impact caring has had on your sleep and any leisure time you had. Do you get any breaks?
  • What impact caring has had on you emotionally and psychologically.

Your child’s medical team should provide you with information about your child’s condition.

Please contact SMA UK if you would like:

  • more help with explaining the impact of your child’s SMA on them and your family
  • any other support preparing for or during your carer’s assessment.

Contact for Families with Disabled Children – Carers Assessments (pdf) >

As of 6th April 2024, carers in England, Scotland and Wales are now entitled to one week’s unpaid leave to fulfil their caring responsibilities.

Working carers – which includes anyone providing or arranging care for a relative or dependent – will be able to take the unpaid leave in half or full days.

Read about the Carer’s Leave Act in more detail on the Carers UK website.

You can take time off work to deal with an emergency relating to a dependant or other unexpected event. This could be for your child(ren), a parent, partner, or someone for whom you have  sole care. Your employer cannot penalise you for taking dependants leave as long as your reasons for taking it are genuine. Any leave you take will be unpaid unless your contract of employment says otherwise. You must let your employer know the reasons for your absence as soon as possible and tell them how long you expect to be absent.

Examples of dependants leave are if:

  • Your child is ill and needs your assistance, or for you to take time to make arrangements for their care
  • Your normal care arrangement has broken down e.g. a carer has not turned up.
  • There is an unexpected incident at school that you need to deal with.

You cannot take dependants leave to deal with a situation that you could have predicted or was planned. You can usually only take time off to deal with the immediate event and to make alternative arrangements. Dependants leave will not cover your providing long term care yourself. For anything like this you would need to take parental leave (see the open-out box below), annual leave or any other available leave.

There is no set time limit on the amount of time you can take. Normally this will only be a day or two – but it must be reasonable in all the circumstances. For example, if you have a partner or other family members who could help instead of you. If you think you need more time or are not clear what your rights are you can get specialist advice:

Contact: Flexible working and time off >
Government advice pages: Time off for dependants >
ACAS: Employment law and workplace advice >
Working Families: Free helpline >

Regardless of whether you have got childcare responsibilities, you have the right to apply to your employer for flexible working arrangements. You may apply for a change to the times or hours you work or to have the option to work from home if:

  • You have worked for your employer for 26 weeks on the date you make the application
  • You are not an agency worker or member of the armed forces
  • You have not made an application for flexible working in the past 12 months.

Employers must consider requests seriously and are only able to refuse the request when there is a clear business reason.

You should make your request in writing, making clear that it is a statutory request.

You should also set out:

  • How you want to work – days, hours, where (home / workplace)
  • When you would like this to start.
  • What the impact will be on your employer’s business
  • How you think this may be dealt with
  • Whether you have made a request before and if so when
  • Date your request.

It is also a good idea to set out why you want to do this. For example: no longer having travel time might help you better care for your child with SMA; what the likely impact will be on your family life if your request is turned down.

If you get turned down, check with your employer whether they will allow you to appeal. If not, write to them asking them to reconsider. You can seek advice from a service specialising in employment advice such as:

Parental leave gives parents the right to take time off work to look after their children. It is normally unpaid but some employers are more generous.

Check your employment contract. To qualify you must:

  • have worked for your employer continuously for one year
  • give at least 21 days’ notice
  • use the leave time to care for your child.

If you qualify, you must be allowed at least 18 weeks unpaid leave for each child aged under 18, regardless of whether they are disabled or not.

Both parents have the right to parental leave so each can take up to 18 weeks leave per child, to be used before the child’s 18th birthday.

Normally you have to take parental leave in blocks of one week or more. However, parents of a child on Disability Living Allowance (see this page) or Personal Independence Payment (see this page in the Adults’ section) can take leave one day at a time. This means you could use parental leave for regular hospital visits.

The maximum amount of leave a parent can take for any one child in one year is normally four weeks, but your employer can let you take a longer period of parental leave each year if they wish.

If you take four weeks parental leave or fewer, you are guaranteed you can return to your same job. If you take more than four weeks and it is not reasonably possible for you to be allowed to return to your old job, you are entitled to a similar job with the same or better status as the previous one.

Your employer can ask you to postpone your leave for up to six months if it would cause disruption to their business. If this happens to you, you can get specialist advice:

This is a UK-wide possibility – a National Insurance credit which you are entitled to if you are caring for someone for at least 20 hours a week. It helps with gaps in your National Insurance record (your State Pension is based on your National Insurance record).

See: Gov.UK/Carers Credit for more information.