Surviving Summer (E15)

Day We-Are-Actually-Mid-August-For-Real:
So. I am in what one may describe as 'a tizzy.' My knickers are well and truly twisted, and unfortunately not thanks to any extra-curricular excitement. I had a phonecall a couple of days ago regarding the dreaded annual review for the B-boy's budget. For those of you fortunate enough to be blissfully unaware of such things as CHC budgets, DP funding, SEN, EHCPs, assessment tools and many more acronyms extraordinaire, allow me to enlighten you.
B requires a substantially higher level of care than a typical kid his age. I snigger when I write that since it's not even comparable; constant line of sight supervision is necessary to ensure survival- his and that of everyone else in his immediate vicinity. Think over-excited toddler. Zero social awareness. Host of medical issues. No idea of danger. On crack. That pretty much covers it. Due to this INSANE level of care, and the fact he is unable to verbally communicate or do anything - anything - for himself, we'd be dead in the water without help.
Thankfully, the government recognise this. They provide a care budget which we can use accordingly to ensure B's needs are always met. It's not all shits and giggles though- the responsibility of transforming the dosh into actual care provision falls squarely on our shoulders as parents. Cue learning how to manage a team, how to be an employer, how to train people up, how to sort out rotas... the list goes on. It's been a few years now and we're fairly all over that shit, but the annual review process is an utter bitch. Here's why.
B has a life-long, potentially life-limiting chromosome disorder. His condition is genetic and will therefore never go away. The fallout of that condition is a host of ever-evolving diagnoses-many clinical in nature. His current medical profile boasts the following; intractable (uncontrolled) epilepsy, food refusal with unknown cause and thus he is currently tube fed, dup15q syndrome, failure to thrive, ADHD, autism, double incontinence, reflux, non-verbal communication, sensory processing disorder, hypotonia, severe learning disability, likely Ehlers-Danlos syndrome and possible Von-Willebrand's disease. His care needs can only logically increase as he grows, due to him being bigger. SO WHY THE FUCKING ANNUAL REVIEW? Is it to ensure we get additional care as he grows? Is it fuck. It's entirely a money thing. It's a chance for our budget to be nitpicked, excruciatingly examined and ultimately cut.
Every year it's the same drill- we have to provide evidence to a panel from every professional involved stating (again) how his care needs are the same, or more severe. Occasionally the government move the goalposts, and suddenly we don't hit criteria on one thing or another, despite his care needs being the same. We have to rely on the professionals involved with us, who often barely see B due to our ability to manage him well at home, plus his complete hysteria at every medical appointment ever, to submit accurate and detailed reports of the levels of care B needs on a daily basis. And finally, we have to trust a panel of people sitting in a room somewhere in deepest darkest Dorset to interpret the evidence correctly and make an imperative, life-or-death kind of decision for a child they've never even met. It's ludicrous. We as parents get to attend the review to give input. We do not, however, get to meet anyone involved on the panel. We are reduced to a nameless, faceless pile of paperwork.
All this is incredibly anxiety-inducing. Because clearly we don't have enough shit already going on. Because clearly looking after a child like B is a fuckin' breeze. We NEED that budget in order to function. Not have a jolly. Not palm off our kids for a merry old holiday. Not any of that shit. To SURVIVE. To keep everyone alive with some measure of sanity in-tact. So my current life happenings involve trying to track down all the professionals involved (over summer, good one) and ensuring we are all on the same page. Basically, since they're not all hugely involved, making sure they know exactly how crazy it is raising a B, despite us appearing to manage so well. His needs remain the same regardless of our ability to cope, and I refuse to let my boy be disadvantaged by budget cuts and poor communication.
Meanwhile in Westminster, dickheads like my own MP (Robert Syms, by the way -check him out. Retro Tory gold) are claiming thousands upon thousands in shitty expenses without anyone batting an eyelid. Maybe putting them through this asinine review process and making them accountable in the same microscopic way for every single need they claim for would put us on an equal footing. Being made to 'prove' B's disability is heartwrenching, callous, and entirely unnecessary. And it matters massively. Without this we go under, simple as that.
Join me in the funding dance people, it's a good a route as any...

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