You may be eligible for the the two main benefits described in this section - Disabled Living Allowance (DLA) and Carer's Allowance. There are also other possible benefits, allowances and tax credits.
Page last reviewed / updated: February 2021
Next review due: February 2022
Disability Living Allowance (DLA)
This is the main benefit for children with SMA. DLA helps to meet the extra costs that you might have because of your child's disability. It’s paid regardless of whether you're working or not and it isn't means-tested.
DLA is made up of two components:
- Care component
This can be paid from age 3 months (or if a child is terminally ill, from birth). If your child needs a lot of extra watching over or help with personal care, they should qualify for the care component of DLA. This is paid at one of three different rates - lowest, middle and highest - depending on how much extra care your child needs.
- Mobility component
The lower mobility component can be paid from the age of five. This is for children who need extra guidance or supervision out of doors.
The higher rate of the mobility component can be paid from the age of three. This is for those with severe walking difficulties
For more information see Contact for Families with Disabled Children: www.contact.org.uk/advice-and-support/benefits-financial-help/benefits-and-tax-credits/disability-living-allowance/
They also provide advice on DLA when your child is in hospital: www.cafamily.org.uk/media/944865/dla_and_children_in_hospital.pdf
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’s not means-tested so it doesn’t matter what savings you have, but it may 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 to see if you may be eligible for this benefit, please go here: www.gov.uk/carers-allowance
For more information, you can also see:
Contact for Families with Disabled Children: www.contact.org.uk/advice-and-support/benefits-financial-help/benefits-and-tax-credits/carers-allowance/
Carers UK: www.carersuk.org/help-and-advice/financial-support/help-with-benefits/carers-allowance
Assistance with Healthcare Travel Costs
The Healthcare Travel Costs Scheme provides assistance with travel costs for hospital visits for people on low incomes. It only covers travel for treatment, not to visit patients. You can find out more:
Northern Ireland: www.nidirect.gov.uk/articles/hospital-travel-costs-scheme
You may be entitled to other benefits, for example to help with your income, any child care and housing costs. This will depend on your individual circumstances. Universal Credit is being introduced in stages across the UK. It will replace the following benefits:
- Child Tax Credit
- Housing Benefit
- Income Support
- Income-based Jobseeker’s Allowance (JSA)
- Income-related Employment and Support Allowance (ESA)
- Working Tax Credit
If you currently receive any of these benefits, you can’t claim Universal Credit at the same time.
Unless you have a change in circumstances, advice is not do anything about moving to Universal Credit until you hear from the Department for Work and Pensions (DWP). Over the next three years the DWP are working through what is called a 'managed transfer process'. Anyone whose entitlement to Universal Credit is assessed through this system will have their income protected, but anyone who moves prematurely or as a result of changed circumstances won’t. So if you’re considering applying for Universal Credit it’s important to get specialist advice (see below).
There are also other possibilities such as Carer’s Credit. This is a National Insurance credit which you’re entitled to if you're 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.
The Gov.UK website has up-to-date information on all benefits including an online benefits calculator: www.gov.uk/browse/benefits
It’s extremely complicated to work out what you’re entitled to. It’s well worth seeking specialist advice from one or more of the following organisations:
- Advicelocal – enter your postcode and find out what services are nearest to you: https://advicelocal.uk/
- Contact for Families with Disabled Children has a freephone national helpline on 0808 808 3555 and can provide you with a free benefits check service. Their website pages are very comprehensive: https://contact.org.uk/advice-and-support/benefits-financial-help/
- Carers UK has a very helpful website area: www.carersuk.org/help-and-advice/financial-support/help-with-benefits Their free helpline is 0808 808 777 Monday / Tuesday (10.00am – 4.00pm). You can also email them them through here: www.carersuk.org/help-and-advice/talk-to-us
- Turn2Us is national charity that helps with access to welfare benefits, charitable grants and support services, Their free helpline is 0808 2000 Monday – Friday (9.00am – 5.30pm). Their website is full of information: www.turn2us.org.uk/ They also have a benefits calculator you can use: https://benefits-calculator.turn2us.org.uk/AboutYou