I intended to write an article on the governments disability policies; listing them, analysing them and then saying YAYY it’s all going to be ok!
But…and I’d love someone to show me the link I’ve clearly missed as I can’t find a simple list of policies. An actual list that normal people can digest. There are lots of reports on supposed childcare supplements to encourage parents of disabled children back to work (a rather simplistic suggestion clearly initiated by someone who does not live with a disabled child,) support in moving from full time education into adulthood plus numerous articles on benefits but nothing explanatory for your every day parent.
I’m not going to get on my politic high horse again, I promise…ok, well maybe a little bit…
What I thought would be useful instead would be a little Glossary of confusing initials and breakdowns of ridiculously long titles.
I’ll do a few each week so as not to a) bore you to tears and b) confuse you like I’ve done myself.
So here we go…and in no alphabetical order:
EHCP – Education, Health and Care Plan. This was introduced in September 2014 to replace the Statements of Special Educational Needs. An EHCP is a legally binding document that explains the educational, health and social and care support needs of your child. One little trick councils like to do is to regularly use words like “should” so for example “Jude SHOULD receive an hours physiotherapy every week.” You see what they’ve done there?? He SHOULD doesn’t mean he will so when I was sent the newly drafted copy in the post, I crossed out every should and could and wrote will in it’s place! They don’t always agree with your alterations and it can be again re-worded by them but you’re able to contest anything you’re unhappy with (good luck though!)
An EHCP is reviewed annually; parents and professionals meet to discuss changes, it’s written up and sent to you for checking and then made formal on agreement of the wording and content.
But to get a Statement transferred to an EHCP your child first has to have an EHC Assessment. Yep, they need assessing again! Councils can turn down EHCP’s following these assessments or can even refuse to undertake an assessment altogether in which case you need to put your case forward to an Special Educational Needs and Disability Tribunal (SENDIST) who will consider your case. This is where the infamous Panel reside – I always imagine a panel of people X-Factor stylee all sitting in a row reading your forms. What annoys me about this “panel” is that it is made up of people who have never met Jude. They are literally reading documents and making life affirming decisions FOR YOUR CHILD. What is even more concerning is that I don’t even know who these people are! So someone I don’t know, who doesn’t know Jude is deciding what is best for him to do/receive in life. Makes sense, non?
How are you doing? Confused much?
Ooh one that regularly gives me a chuckle (I’ll explain in a minute) is DLA – Disability Living Allowance.
This is allocated by way of an incredibly in depth amount of paper work which the government use to assess your level of disability. Nice, eh? Higher, middle or lower bands are employed for mobility and care needs as separate allowances. Jude, for example gets middle rate for mobility (despite the fact they won’t allow him to have a blue badge for car parking) and the higher rate for care. Calling it higher rate makes it sounds like a lot of money but it really isn’t. I’m hoping with every hope I have that it increases when he reaches sixteen because it certainly isn’t enough to replace the income of a salary.
The bit that makes me chuckle is every year in December you get a letter stating the amount you’ll receive that month and it also states that Jude will get a £10 Christmas bonus. £10!! Woo hoo let’s go Christmas shopping Jude!!!
BUT just when you thought you were starting to understand a tiny element of the disability benefits system… CABOOOM Sorry guys, DLA has now been made redundant for all new claimants and the government has brought in the shiny new system called PIP – Personal Independence Payments. Wahooo another new load of terminology to read about!
So what is PIP? It’s for people aged sixteen to sixty four and is broken down to a daily living and mobility allocation, similar to DLA. The standard amount for daily is £55.10 and mobility £22.80 so my wish for Jude to be able to actually survive alone are unlikely. There is an enhanced amount which is for £82.30 daily and for £57.45 mobility so hopefully Jude will receive this but even that amount isn’t really a living income.
This graph is incredibly simplistic but shows where the government will be able to eek some money back which is pretty scary. You would think that those on the higher end of the middle rate would move up rather than down.
The paper work for both the Statement of Education Needs and DLA are vast but thankfully do not have to be repeated too often but I won’t go into that now and I think I’ll leave it there for an initial glossary introduction. Your brains are probably twirling and your eyes glazing over but I just wanted to show you a teensy morsel of information I’ve had to look at in detail over the years.