PIP - Fragile X

Hi Tullulah

We do not have information that specifically relates to Fragile X. You could try the Fragile X society. They do have information booklets specific to the condition but you have to request them. I don't know whether there is a cost. www.fragilex.org.uk/benefits

The important thing for the parents to remember is that there is a big difference between DLA and PIP.

PIP was engineered to be more difficult to award than DLA and many DLA claimants will receive reduced awards or even no award at all on transfer.

DLA looks at generic care needs in regard to bodily functions, PIP looks at the claimant's specific ability to carry out an activity such as eating. DLA was awarded because the claimant needed an amount of care (in time) during the day, the night of both, to help them with that bodily function. PIP looks at the claimant's ability to complete specific tasks within the activity and is points-based, these are clearly defined and it is easy not to score points because the claimant has not shown that they meet those specific criteria.

DLA treated the use of aids as a reason to reduce the amount of care needed, PIP treats aids as an indication of disability and in general they score extra points.

DLA's care need was reasonably generic, PIP treats prompting, assistance and supervision as different activities and as a result, they can score different points.

DLA required that the care was required for the majority of the time, for PIP it is the majority of days.

For PIP activities must be completed reliably, this means

• Safely – in a fashion that is unlikely to cause harm to themselves or to another person.
• To a necessary and appropriate standard – given the nature of the activity.
• Repeatedly – as often as is reasonably required.
• In a timely manner – in a reasonable time period.

Although DLA considers these terms, they are poorly defined as they are implemented through Case Law rather than being defined in the legislation as they are for PIP.

So DLA referred to Cutting up food, eating or drinking, PIP looks at

a. Can take nutrition unaided. 0 points.
b. Needs –
(i) to use an aid or appliance to be able to take nutrition; or
(ii) supervision to be able to take nutrition; or
(iii) assistance to be able to cut up food. 2 points.
c. Needs a therapeutic source to be able to take nutrition. 2 points.
d. Needs prompting to be able to take nutrition. 4 points.
e. Needs assistance to be able to manage a therapeutic source to take nutrition. 6 points.
f. Cannot convey food and drink to their mouth and needs another person to do so. 10 points.

They should also be aware that there is less focus on the condition/s that people suffer from but their ability to fulfill the tasks as set out in the PIP criteria.

BIS