Benefits, Entitlements and Grants

Our role in Fanconi Hope is to help guide people towards organisations that specialise in the right type of support.

Organisations that can help with Benefit Claims

It is certainly the case that the benefits system has been tightened up as of late 2012, and we have evidence from one of the hospitals involved in disability living allowance (DLA) claims that claims that always used to be accepted are now routinely being rejected. Applications for claims therefore now need to be much more robust, and support should be drawn from multiple sources to ensure the robustness of any claim. Note that from April 2013 DLA for adults 16-64 is being replaced by a Personal Independence Payment (PIP). More details can be found on the Contact a Family website here.

For DLA claims it has been recommended to us that you keep a diary for a week and detail the differences  between your child’s care and mobility as compared with a fully fit child of the same age.  This can be attached to the application form.  It should also help you to complete the questions on the form.  It is important to provide as much detail as possible including up-to-date supporting medical evidence to ensure your application can be properly evaluated. Make sure you keep a copy of the whole application.

To reinforce your case, our Standards of Care for Fanconi Anaemia affected Individuals and their Families document, although primarily written for clinicians/consultants  does serve to illustrate just how much ongoing monitoring may be required, most of which is likely to be carried out in a hospital environment.  This is summarised in the Introductory section on Page v.

Organisations that can provide Grants, equipment or home makeovers

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