Welfare
What’s the Carer’s Allowance?
You can claim the Carer’s Allowance (which used to be called Invalid Care Allowance) if you look after someone who gets 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 £82 a week, and you’re not a student. A partner’s earnings or savings are ignored. It is usually a good idea to make a claim for the Carer’s Allowance at the same time as you claim DLA for your child. See What can you claim? or contact the welfare benefits advisers at the DSA.
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I’ve just had a child with Down’s syndrome. What benefits can I claim?
You need to find out about:
- Disability Living Allowance (DLA)
- Carer’s Allowance (used to be called Invalid Care Allowance)
- The extra money for having a disabled child in the Child Tax Credit
See What can you claim? and Guidelines for claiming Disability Living Allowance or contact the welfare benefits advisers at the DSA.
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Does everybody with Down’s syndrome get Disability Living Allowance?
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 welfare benefits advisers at the DSA.
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When should I claim Disability Living Allowance for my child?
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 it is possible to 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 6 and 12 months old. See Guidelines to claiming DLA for more detailed information on the DLA rules or contact the welfare benefits advisers at the DSA.
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Why have I been refused Disability Living Allowance for my child?
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 life-long disability.
Why does this happen?
- The rules for DLA are not “commonsense” or 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 definitions. And often they behave as if their definitions are “reality”!
- 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 have a good enough understanding of people with learning disabilities. They do not really grasp the information they are given about an individual child. The DWP are aware of this problem, and have just developed a new training course on learning disabilities for their staff.
- 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 welfare benefits advisers at the DSA.
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Can my child get the higher rate of the mobility component of Disability Living Allowance?
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 to claiming Disability Living Allowance or contact the welfare benefits advisers at the DSA.
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What will happen to my child’s benefits when they reach 16?
Most young people have a renewal of their Disability Living Allowance when they reach 16. Yes, unfortunately, this means filling in the form again. But if your child’s needs haven’t changed, they should continue to get the same amount of DLA.
They can also claim other benefits in their own right. Most young people with Down’s syndrome can get:
- Incapacity Benefit
- Income Support (for the first year they are on Incapacity Benefit)
However, if they claim these benefits, please note that you will stop getting Child Benefit and Child Tax Credit for them. If the whole family is on benefit (Income Support or Jobseeker’s Allowance, for example), you may be better off NOT claiming Incapacity Benefit/Income Support for your child with Down’s syndrome. Check if you are in this situation. See Benefits at 16 or contact the welfare benefits advisers at the DSA.
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What happened to the DSS and the Benefits Agency?
The Department for Social Security (DSS) is now called the Department for Work and Pensions (DWP). The Benefits Agency was the bit of the DSS that actually operated the system (dealt with claims, etc). This is now split into 3 “directorates” but it is simplest to call the whole system “the DWP”.
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I’d love to take my family on holiday but I can’t afford it. Is there any financial help for things like that?
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
PO Box 50
York
YO1 9ZX
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, contact the welfare benefits advisers at the DSA. We are able to use a computer database “FunderFinder” to find grant-making organisations suitable for your situation.
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