Yes, self-reporting (or not) is a major issue. E.g. DWP RR1089: "It was common for such participants to express that they neither identified as ‘disabled’, nor as someone that asks for support or benefits." But @resfoundation don't explore this in their report #HardTruths

@resfoundation suggest a 'participation element' for people with higher levels of disability but no extra costs (again, they didn't get any in-depth qualitative or quantitative data to allow us to understand who these people are or why they report higher limits without costs).

@resfoundation suggest that it may be more appropriate for some people to get PIP as a one-off sum, such as paying for house adaptations. PIP isn't for house adaptations. The Disabled Facilities Grant is for house adaptations. Unfortunately, it's badly under-funded.

Given that RF want to claim that 12% of PIP recipients shouldn't get PIP at all, RF's failure to explore apparent mismatches between level of limitation and degree of extra costs is disappointing.

This is another area where it would have been really helpful for RF to have explored this topic in detail. Leaving it without explanation contributes to our lack of understanding about who claims PIP, why, and what they use the money for.

Looking at people who report being limited 'a lot' and have at least some extra costs: - what does it mean for someone to say their costs are 'a lot' higher, but only limited 'a little'? - what does it mean for someone to say that they are limited 'a lot', but no extra costs?

There are some interesting ambiguities in @resfoundation's data, and it's a shame these weren't explored in depth.

@resfoundation suggest that PIP should only be awarded to those disabled people who can also identify the extra costs they experience. One problem is that RF themselves admit that identifying specific extra costs can be difficult.

@resfoundation recently published a report in which they claim that 12% of PIP recipients report neither higher costs than non-disabled people nor being limited in their day-to-day life. Unfortunately, they don't speak to these people to explore this issue more deeply.

Yes, one might hope that there are some obvious 'likely to have these difficulties' areas that the assessors should be thoroughly trained in (whilst also being flexible enough to accept that people may have other difficulties that aren't the 'common' ones for their condition(s)).

Some difficulties include - range of severity for any given condition; - other factors, e.g. larger house = higher utility costs; rural area = more taxis; local NHS provision of therapy or going private; - different combinations of conditions have a different cumulative impact.

Some difficulties include: - range of severity for any given condition; - other factors, e.g. larger house = higher utility costs; rural area = more taxis; local NHS provision of therapy; - different combinations of conditions have a different cumulative impact

What do people use their PIP for? Based on the @resfoundation report (I haven't seen the survey questions and answer options), RF only gave respondents the following options: (Economically valuable activity) - childcare; - other care; - training/education; - work; - volunteering.

I'm going back to Chapter 1 of the @resfoundation report, #HardTruths, on #PIP I started with Ch2 yesterday because I was interested in the claim that some PIP recipients don't need this. Sadly, I feel that RF just didn't collect enough data to allow them to make this claim.

@resfoundation "We recommend retaining a points-based functional assessment as the gateway to receiving PIP, but improving what is included in the assessment." I also wonder if there's merit in a DLA+ approach (based on amount of care needed, plus some additional questions).

@resfoundation explain that a condition-based assessment for PIP would not work. "Most people have several conditions, in combinations that are rarely shared, and where conditions alone are a poor guide to both how people are affected by their disability day-to-day" + extra costs

"Moving to a...disability benefit assessment that measure people’s actual spending would likely mean that the sort of large expenditures that could make a big difference to disabled people’s lives... would be underrepresented, while small everyday costs would be overrepresented."

@resfoundation rightly note some of the problems with a disability benefit assessment that attempts to directly assess individual people's extra costs: 1) It's very difficult to actually separate some disability-based from non-disability expenses; and

Yes, so I think it's a real missed opportunity for @resfoundation to say that there are people on PIP who report no costs and only lower levels of limitation, but then not ask any of those people for more detail. As it is, the only conclusion here is 'more research needed'.

Similarly the separation of cooking and eating. One usually cooks just before eating. But if I cook, I'm then so tired that I feel sick, and then I don't want to eat. And they don't care whether or not you can wash up after cooking and eating.

Yes, particularly, the separation of dressing and washing/bathing! Granted, I usually dress without washing. But I never wash and then don't get dressed... I just have to sit in a towel till I've dried off enough to have the energy to finish drying and get dressed.

There are also some extra costs that are, essentially, an accumulation of minor aids and appliances. But realistically, I think people who get PIP on these grounds usually have pain/fatigue that means they have care needs (e.g. for household chores) that PIP doesn't assess.

... other Daily Living costs that people incur do include things like extra utility bills and specialist foods, which aren't accounted for by considering 'hours of care' needs. They could be covered by their own question.

The most expensive element of Daily Living needs often is the sheer cost of paying for another person's time. Labour just is expensive. Therefore, assessing how much of it a person needs is a relatively simple proxy of their extra costs, surely? Yes, there are some other costs...

Granted, my mobility needs = expensive aids, but the Mobility component has always considered this need. I'm struggling to see why an assessment of how much help I need from another person *isn't* an assessment that helps my independence. Genuinely interested to hear from others.

"More philosophically, it would be odd to use care needs as a way of assessing eligibility for a benefit whose end goal is independence." Why? Getting someone to help with household chores means I can safeguard my health and do other things. It boosts my independence.

"There is no intrinsic reason why a functional assessment has to be used: when PIP was introduced, DWP provided no evidence to justify why it decided that its functional assessment was the best proxy for extra costs." This is key. Why wasn't this done at the time, or since?

Majors issues with PIP are: a) it misses out some major activities of daily living, like keeping your house clean, tidy, & safe; b) it struggles to assess generalised/diffuse limitation, partly because of a); & c) the really really high levels of need aren't adequately captured.

The real question is not whether any one individual activity on PIP is, purely by itself, a good indicator of all of a person's extra costs. The question is whether all of the activities together, and the descriptors within them, are a good indicator.

I think the attempt here was just to say that, for any given policy intent, the proxies should be a good indicator of how someone matches against that intent. The actual policy intent itself is then a separate question, which also needs to be considered.