So, I wrote this, spent hours emailing and phoning and tweeting everyone I could think of, and then got a call from the surveyors supervisor (who knew that was a real job!).
We're the only private high priority case he currently has that isn't already allocated. Our details will be passed to a surveyor next week, they'll be in touch the week after at the latest.
As far as I can see, there are two possibilities here.
- There was no waiting list - everyone who told us there was (including four separate professionals familiar with the process) must have been mistaken.
- One of those emails or phone calls or conversations or tweets landed in front of someone with the power and authority to do something about it, and they did.
I got what I wanted, right? So I should be thrilled, right? I can move forward, get the things done that Smiler needs done, and never look back, right?
But my feelings are mixed.
Yes, I'm glad it looks like things are moving.
Yes, I'm immeasurably relieved that the situation did not get as dire as it could have before our need was recognised. I did not, I should add, ever leave Smiler sat at the foot of the stairs in jeans saturated with urine.
Yes, my son will get access to the facilities that he needs, which is what I wanted after all.
But what about the parents out there who don't have the time to make those calls? Whichever of the options above are in fact the case
and I know what I think happened another parent might have let the matter lie and their child's needs would not be met.
We should not have to scream and shout and do research and make demands before people listen to us.
Smiler is getting what he needs, but is that fair? I've spoken to parents who waited for two years in similar situations, and that is not good enough. I'm still up for creating a fuss - it is not okay that parents are given misleading advice. It is not fair that professionals are resigned to months of waiting for things that should take days. It is not okay that individuals who don't have the energy or opportunity to challenge get pushed to the bottom of the list.
It's been suggested to me that these delays are because Bristol doesn't have enough money to meet the needs of the populace. I understand that that may be the case, in which case clearly the best solution is to :
(a) ensure people are constantly put off from applying by being told it will take months and months and months. This means they will find other ways to get their needs meet, whether that will be borrowing money to get necessary works done, or moving when they don't really want to, or coming up with unsafe solutions to manage on a temporary basis.
(b) find out how to make sure it is recognised within central government the number of potential applicants for DFGs in Bristol, together with a reasoned forecast of how this figure is expected to change over time.
If more money is needed from central government, then BCC clearly has to be able to back this up with evidence. Evidence of unmet need, reports of complaints, pages of figures demonstrating that cities such as Bristol with major hospitals, special schools, (relatively) good transport systems attract those individuals whose families need them.
I get that there are complex issues here. I know very little of the in depth information required, but I can make some gross generalisation that I imagine are relevant.
Nationwide, children are surviving birth and infancy with conditions that would have been fatal fifteen years ago, some of whom will have significant additional health, education and social care needs, as well as the implications this has for their parents and siblings. People of all ages are surviving major health crises such as cancers and strokes, some of whom will require various levels of support for varying lengths of time. Adults in the UK are living longer, decades past retirement, which combined with a trend towards older people wanting staying in their own homes rather than moving into residential care means a greater proportion of Bristolians are likely to be seeking help to do so, through schemes such as DFGs.
Proper analysis of these national trends, together with an evidenced explanation of why Bristol in particular is experiencing increased applicants, would surely be a starting point. But what it comes down to is this.
- The council should not be putting potentially genuine applicants off of applying by exaggerating the length of the wait.
- Council departments and staff should not be either tacitly or explicitly encouraging assessors to limit the number of cases they classify as high priority.
- The process should encourage, not ignore, elements of the legislation which would make the wait more manageable for families.
I'd love to hear what you think, and what you think could be done. Have you applied for a Disabled Facilities Grant (in Bristol or elsewhere)? I'd be really interested to hear how it went, and what you thought the weak areas of the process were. Maybe you're a professional who is equally frustrated by the way it works - please do leave a comment or email me. In the meantime, I'll let you know how it goes with the surveyor - cross your fingers for me that I haven't pissed them off so much they will now be hugely unhelpful ... but actually, how sad is it that that is a genuine concern of mine moving forwards?
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