Benefits

When someone in your family is diagnosed with autism, money isn't usually the first concern. But autistics can be expensive, even if they are not being deliberately destructive. Extra fireguards, lockable boxes and cupboards, high fences, bedding and spare clothes, special diets, buying twice as much loo roll because of a shredding perseveration ... The list goes on, and the costs mount up.

There are benefits available that mean you might not have to pick up the entire tab if you need to fortify your house and replace your possessions. The bad news is that if you want them, there are a lot of forms to fill in.

Disability Living Allowance

Disability Living Allowance (DLA) is available to people under 65 with a disability, even if they are working. It takes into account invisible disabilities such as autism, and you may be pleasantly surprised by how much you can claim. DLA is divided into a care component and a mobility component. The mobility component is only available at the higher rate for a child over 3, and only at the lower rate for a child under 5. The care portion comes at three different rates.

There are two booklets to fill in, both A4 and quite long. Section 1 is simply for general information. Section 2 is the more difficult to fill in. Although it is unlikely that you will need to fill in every page completely, there are a lot of questions and some of them are quite invasive. Be prepared to write about toiletting, sleep patterns, getting dressed, and so on. The people reading the form will not have met your child, so you have to write as much as you can to give a clear picture. Then you are asked to estimate how long you spend on each activity every day, and how many times this may happen. Although this is often impossible to quantify, it's a case of making your best guess. If you can, get a professional such as your health visitor to go over your answers with you.

DLA attempts to put a value on the extra time it takes someone to carry out activities, compared to other, typical people of the same age. This includes how much supervision a person needs, how much help with communication and encouragement to do things, as well as taking account of day to day self-care issues.

The Family Fund Trust

In spite of the name the Family Fund Trust is not a charity, but is funded by the government. They allocate grants to families with severely disabled children.

Don't let the "severe" part dissuade you: what constitutes severe depends on your point of view (and possibly, in part, on whether they have spent all their budget yet). If you apply there are forms to fill in, and you will also get a visit from an assessor.

You may be eligible for a grant even if you are working, as long as your income does not exceed a certain threshold and you do not have savings over £8000. In 2001 this was a gross of £20300.

If your application is accepted, the Fund will pay you a lump sum. This can be very generous. However it is annual, and subsequent years' grants will usually be less substantial or even non-existant. Money is allocated for specific purposes, and you will need to keep your receipts in case you are asked to prove that you have spent it on the right things. There are restrictions on the things that they will pay for. In practice grants can go towards such things as repairs, replacement furniture or bedding, and even holidays.

Vaccine Damage Payments

The government claims that MMR is safe, but if your child has declined seriously after being given the triple vaccine you may think otherwise. The Vaccine Damage Payment is a one-off payment worth a hefty £100 000, for those who are left severely disabled following a vaccine.

"Severely disabled" means being 80% disabled - but what the heck does that mean? A person who is registered blind is regarded as 80% disabled, and there are ways of working this out. But while there may be some simple objective measures for physical disabilities, it is less obvious how neurological disorders like autism fit into the picture. New laws are due to be passed that will change this threshold to 60% disabled. Ask your GP what these percentages mean if you suspect that your child might qualify.

There is a time limit for making a claim, currently within 6 years of the date of vaccination or the date the disabled child reached his or her second birthday, whichever is later. This may be extended to the age of 21 if proposed new laws come into effect.

If you want to claim this payment, you will have to be able to prove that your child's disability was the result of a vaccine. This means getting a case together, so ensure that medical records do not go astray and that you have clear evidence.