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Last updated: November 2023
Last full page review: August 2022

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The impact of rising costs is biting for the SMA Community, many of whom find it hard to keep warm and who rely on energy to power essential equipment. The organisations below give a wide range of information about the schemes and grants  available, along with other advice such as signing up to your energy provider’s priority services register.

Browse to see what support you and your family might be able to get.

Other useful organisations

  • TaxAid – a charity that helps people on low incomes when they get into difficulties with their tax affairs.
  • Step Change – a charity offering free online debt advice and support.

A number of charities provide grants. Eligibility criteria and what they will fund vary considerably and may change depending on their level of funding.

Funding for Equipment on this page outlines what information you will need to apply for a grant from a charity

Wish Granting Charities on this page – lists a number we know of.

There may be other grant possibilities. Please contact the SMA UK’s Support and Outreach Team if you need a grant to see if we can help you to find charities that may assist you.

Many parents find that one or both have to adjust their paid work commitments to manage their caring responsibilities. If you’re 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 to your working week to help you juggle your work and caring responsibilities.

This section lets you know about your rights and where to look for more information.

Time off for dependents

You can take time off work to deal with an emergency relating to a dependant or other unexpected event. As well as for your child(ren), this could be for a parent, partner, or someone for whom you have sole care. Your employer can’t 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 make arrangements for their care
  • Your normal care arrangement has broken down e.g. a carer hasn’t turned up.
  • There’s an unexpected incident at school that you need to deal with.

You can’t 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 won’t cover your providing long term care yourself. For anything like this you’d need to take parental leave (see the open-out box below), annual leave or any other available leave.

There’s 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, whether you have a partner or other family members who can help. If you think you need more time or aren’t 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

Help returning to work

See: Contact: Help returning to work 

Flexible working

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

  • You’ve worked for your employer for 26 weeks on the date you make the application
  • You’re not an agency worker or member of the armed forces
  • You haven’t 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’s a clear business reason.

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

You should also set out:

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

It’s also a good idea to set out why you want to do this – to help you better care for your child with SMA, along with the likely impact on your family life if your request is turned down.

If you get turned down, check with your employer whether they’ll 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

Parental leave gives parents the right to take time off work to look after their children. It’s 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’re 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 less you’re guaranteed you can return to your same job. If you take more than four weeks and it’s not reasonably possible for you to be allowed to return to your old job, you’re 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:

England, Scotland and Wales – people pay Council Tax:

If your home has been adapted or has features that are needed because someone with a disability lives there, you could get a reduction on your Council Tax bill. For example, this could be because you have an extra bathroom or kitchen, or extra space to use a wheelchair indoors. If your home is eligible, your Council Tax will be reduced to the band below, or by one-sixth if you’re in the lowest band.

There’s no set test to decide who’s eligible for this, so you will need to contact your local council to find out more. They may ask you for a letter from your GP.

Council tax may be reduced for other reasons. See:

Northern Ireland – people pay rates:

If you are on a low income, you may be able to get help with paying your rates through the Rate Relief Scheme or, for Universal Credit claimants, through a rate rebate. See: