The whole business of who should inform people of the benefits, support and services they may be entitled to has been playing on my mind for the last few weeks. In some work I’m doing, involving interviews with people with long term conditions, there are consistent reports of people not knowing. Not knowing they were entitled to x, y or z.

Similarly, I was surprised to be told by mates that LB has been entitled to Employment and Support Allowance since he was 16. Eh? Wha? Are you sure?? How do you know? (Other parents told them). How could I not know?

I cast my mind back over all the meetings I’ve had with various profs over the past year or so:

• There was that DWP woman who travelled 100 miles to see for herself whether LB could manage his own finances.
• Two annual reviews with a Connexion worker and a social worker in attendance, as well as school staff.
• At least three meetings with a transition social worker (to increase LB’s care package (from 4 hours a month, to 4 hours a week and discuss the future).
• The Direct Payments police.
• School nurse, paediatric neurologist, adult neurologist, GP, local authority funded care agency… and so on.

Now I ain’t suggesting it is the responsibility of any one of the above to inform us of benefits. I’m just surprised that given the huge layers of bureaucracy and meetings that having a child like LB involves, we could get to him being over 17 without a mention of ESA.

On Twitter yesterday, a couple of people said there are welfare rights experts based in CABs (currently under threat from government cuts). But it boils down to the old saying; you don’t know what you don’t know. I didn’t know I should contact the CAB at this point (or a year ago). And, given the amount of time I have spent in meetings like the ones listed above, I suppose I didn’t think I needed to.

For me, there is an opaqueness to the benefit system in this country. So much information seems to be passed on from parent to parent, disabled person to disabled person, support group to members, rather than through ‘official’ channels.  I’ve had a shufty at the government website providing information about ESA and other benefits. Reading the information, it wouldn’t have crossed my mind that LB is eligible. A quick look at the other benefits/allowances left me as much in the dark. It took seconds to be told about ESA, by mates, and to be emailed the number I then rang to organise it. Seconds.

Makes me wonder, really, who is doing the cheating?