We’ve recently received lots of enquiries on the TSA Support Line about Disability Living Allowance (DLA), which can help with additional costs of looking after a child under 16 who needs more care because of a disability. It can be hard to know where to start with DLA, so we created this short guide

Please note: DLA in Scotland has been replaced by a benefit called Child Disability Payment. For more information see this page.

Disability Living Allowance (DLA) can support families where a child has things like learning difficulties, developmental delay, and physical disabilities. Many caregivers in the TSC community are therefore eligible for DLA.

Claiming for DLA can be a lengthy process and it can be difficult to know where to start. Frustratingly, it can also take many months to get a response. The claim form, DLA1 Child (ALT), is available through the Disability Living Allowance helpline or they’ll post it out to you with the date you made your call, so that once you’re approved you’re paid DLA from the earliest possible starting point. You can also download it from the Gov.uk website here.

DLA isn’t means-tested, so your current financial situation isn’t considered when you apply. It’s also not considered income when applying for other benefits. This means DLA can make a more positive difference to your family’s income, especially when considering the additional costs that living with TSC can bring.

Things to consider when completing the form:

  • Take time to read through the form before filling it out, and again after completing it to make sure it accurately portrays your child’s needs
  • Don’t downplay the challenges. It might feel like you should ‘get on with things’, but the application should be clear about any ongoing things that are tough, so the assessor gets a good understanding of what life is like for you and your family
  • Keep a diary for at least a week before completing the form, as a record of the care your child needs during the day and night. This can be used as evidence
  • Give as much information as possible about your child’s needs, as it’s unlikely the assessor will know a lot about TSC. You might want to include
  • information from the TSA, or your child’s TSC doctor to help the assessor understand TSC better
  • Take breaks and be kind to yourself. Completing the form can be triggering
  • Keep a copy of anything you send. You might need it if you’re unhappy with the outcome and want to challenge it

The DLA helpline is available by phone: 0800 121 4600 (England and Wales) / 0800 587 (Northern Ireland). Contact the TSA Support Line if you’ve got any questions about applying for DLA or any other benefits.