Please click on a FAQ below to expand.
For more information, please see our families and carers section.
You can claim the Carer’s Allowance (CA) if you look after someone (who is in receipt of the middle or higher rate of the care component of DLA), for 35 hours or more a week, and you aren’t working and earning more than £128 a week, and you’re not a student. A partner’s earnings or savings are ignored.
Claim for the Carer’s Allowance within 3 months of the decision to give Disability Living Allowance to your child, and your CA will be backdated in full.
See our Carer’s Allowance page for more information or contact the Benefits adviser at the DSA on +44 (0)333 1212 300.
You need to find out about:
- Disability Living Allowance (DLA)
- Carer’s Allowance
- The extra addition for having a disabled child in Universal Credit (if on DLA)
- See our Guidelines for claiming Disability Living Allowance or contact the Benefits advisers at the DSA on +44 (0)333 1212 300.
Yes, in our experience – eventually. About one in 5 have a problem with their claim.
If you are having trouble claiming, see Guidelines for claiming Disability Living Allowance or contact the Benefits adviser at the DSA on +44 (0)333 1212 300
This is one of the hardest questions to answer, because it depends on each individual child’s situation. You should claim when you feel that your child’s needs are a lot greater than those of most other children of the same age.
The earliest time you can claim is when your child is 3 months old and in some cases, a claim should be made then (for children with medical problems, such as a heart defect, or babies with feeding problems.) Probably most claims should be made somewhere between 8 and 12 months old. See Guidelines for claiming DLA for more detailed information on the DLA rules or contact the Benefits adviser at the DSA on +44 (0)333 1212 300.
Many parents claim DLA for their child at some time during her/his first year. Then they are upset and confused when they get a refusal from the Department for Work and Pensions (DWP), saying “your child doesn’t have any more needs than any other child of the same age.” This can feel like a very personal and insulting attack, as they have just been told that their child has a lifelong disability.
Why does this happen?
The rules for DLA may not always appear make sense or seem logical. They are defined in legislation, where words and phrases have a very specific meaning. So, for example, the phrase “your child does not have any more needs than any other child of the same age” actually refers to a complicated definition of whether your child’s needs are “substantially greater” than those of most other children of the same age. Parents know that their child has greater needs, but the DWP is trying to fit individual children into their system of definition.
The DWP need a lot of information to make a proper decision on DLA. Unfortunately, the claim form is not actually very clear about the level of detail that they need. This means that decisions are made wrongly based on insufficient information.
Decision makers do not always have a good enough insight of people with learning disabilities. Some may not always grasp the information they are given about an individual child.
Making a DLA decision for a child involves comparing that child with other children of the same age. Decision makers are not medically trained, and often they are confused about or simply ignorant of “normal” child development.
It is possible that you have claimed before your child’s needs are “substantially greater” than those of most other children of the same age. However, in our experience, it is more common for children to be wrongly refused.
If you’ve been refused DLA for your child, there are steps you can take. See Guidelines for claiming DLA or contact the Benefits adviser at the DSA on +44 (0)333 1212 300.
Yes, some people with Down’s syndrome get the higher rate of the mobility part of Disability Living Allowance. However, they are a minority. It is the most difficult rate to qualify for. If your child has problems with walking, or serious behavioural problems, they may qualify. See Guidelines for claiming DLA or contact the Benefits adviser at the DSA on +44 (0)333 1212 300.
Personal Independence Payment (PIP) has been introduced and will replace DLA for those age 16 – 64. This is still being done in stages. Anyone who is renewing a DLA claim for someone who reaches age 16 will be invited to claim for PIP.
They may also claim other benefits in their own right but please get advice or read our information below first
Since the change from ESA to UC, it is not as easy for students at 16 to qualify, and if they do make a claim, you will stop getting Child Benefit and associated Child Tax Credit or child amounts in Universal credit for them. If the whole family is on benefit, you may be better off NOT claiming UC for your child with Down’s syndrome. Check if you are in this situation. Contact the Benefits adviser at the DSA on +44 (0)333 1212 300.
The Down’s Syndrome Association is not able to give financial help to individual families. However, there are organisations that are able to give grants. One of the best known is the Family Fund Trust. They can help with needs to do with a child’s disability (including holidays). The grants are means-tested. Children with Down’s syndrome do receive help, but each case is considered individually.
The Family Fund Trust
Tel: 0845 130 4542
There are many other organisations that give grants for a wide variety of needs, though be aware that many receive far more requests for help than they are able to meet. If you need financial help for something that would make dealing with your child’s disability easier, see our Financial help from other charities or contact the Benefits adviser at the DSA.