Benefits

What Benefits am I entitled to?

You may be entitled to claim Disability Living Allowance for your child. Recently it has become quite difficult to claim the higher rates for older children with haemophilia.

There are two parts to DLA:

- Care component – comes in high, middle, and low rates

- Mobility component – comes in high and low rates

When your child is younger you have a good chance of receiving both parts, but as they get older you may find benefits are lost or reduced. If you would like to appeal your decision we can advise you on this.

What are the criteria?

For under-16s, you need to show that your child’s needs are ‘substantially in excess’ of those of a child of the same age without haemophilia.

You can claim care component from your child is three months old.

You can claim higher-rate mobility from your child is three, and lower-rate from they are five.

Care focuses on the help your child needs to wash, dress, eat, communicate, have treatment etc. Be sure to mention anything you have to help them with that you otherwise wouldn’t.

Mobility focuses on the ability to walk. As this can vary with haemophilia, you may qualify if you can show that the act of walking could damage your child’s health, e.g. by causing a bleed.

Can we get a car?

The Motability scheme allows people to buy or lease cars if they are in receipt of high-rate mobility component. Unfortunately if you lose this you can also lose your car, sometimes with just two weeks’ notice.

Getting high-rate mobility DLA could also entitle you to a blue badge parking permit.

Important: Before filling in any Benefits forms, we recommend speaking to us at the Society and/or visiting your local Citizens’ Advice Bureau. Someone might be able to sit down with you and go through the form. We have spoken to many families who have had their benefits removed because of attempting to fill the forms in without help. They are quite complicated and an experienced advisor will know what to do.

Others Means of Support

You could also be entitled to other benefits like Carer’s Allowance. Ask us if you'd like advice.

The Haemophilia Society Tanner Fund gives small grants to families affected by bleeding disorders. We have in the past helped people to pay for home improvements, driving lessons, car adjustments, washing machines, and so on. Call Claire on 0800 018 6068.

How will they affect my other Benefits?

DLA is non-means tested. It has nothing to do with how much you earn or savings that you have.

Any payments received from the MacFarlane or Skipton Trusts should have no impact on your eligibility for benefits. If you have any trouble about this, let us know.