Disability Living Allowance (DLA) is a non-means tested and tax-free benefit paid to under 16s who need help with their personal care or with getting around outdoors.

There are different rates of DLA; the rate you get will depend on the amount of care or support you need with your personal care or mobility. In the experience of NSPKU an award of middle rate DLA is the most typical for children with PKU.

When to consider applying for DLA?

Many general DLA advice leaflets suggest waiting until the extra care needed is very clear; as all babies are highly care dependent and to qualify for DLA you need to show a need for substantially more care, the timing of your DLA application is important.

We advise parents or carers to wait until the child with PKU is 1 year old before applying for DLA.  This is because the extra care for a baby with PKU starts to happen at weaning, and then further once a child is mobile and needing supervision around food. For these two reasons, waiting until a child is 12-13 months old is advised.

How can the NSPKU help?

Applying for DLA can be a challenge!  Contact us for help – we have a DLA pack which has full guidance and tips, together with reports to send with your application.

Personal Independence Payment (PIP)

Personal Independence Payment helps with some of the extra costs caused by long-term ill-health or a disability if you’re aged 16 to 64.

Navigating the PIP claims process is time-consuming and challenging.  You can also Contact us for help and our detailed guide on claiming PIP.