Benefits at 16

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 Benefits advisers at the DSA.

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 advisers at the DSA.

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 Benefits advisers at the DSA.

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 are not "common sense" 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 Benefits advisers at the DSA.

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 Benefits advisers at the DSA.

Most young people have a renewal of their Disability Living Allowance when they reach 16. Yes, unfortunately, this means filling in the form again. The form will be different as it is the adult form. 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:

• Employment and Support Allowance (ESA)

ESA replaced Incapacity benefit from 27th October 08. Those already receiving Incapacity Benefit will remain on it for the time being.

However, if they claim Employment and Support Allowance, 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 Benefits advisers at the DSA.

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".