But what about the notion being thrown around that budgets will be lifetime: so you can buy in lots of education but there won't be much left later on and vice versa? i find that very scary tbh. DS1 could go eithert way- incredibly successful or end up in prison or psych care- woudl I make the decision to use the money now to purchase a place at the school he attends (and would that be some kind of auction given there were 20 people for every place?) or save it for later on?
We are blessed to have good schools in place (only took 6 years with a new start beginning in next few months...) but we have no respite, there is a summer club they access although ds1 is now too old and they did almost lose their palces last time, we have lost ds3's transport there which means that I have to drive to different provisions in different villages and that costs a fortune. They can't attend togetehr. The scheme ds3 attends (a scheme available to every local NT child but where there is TA access for the kids with SN) is amazing, but we fund ds1, who never is allowed out alone, was found by me in a carpark last time, plus lots of other horrible things.
DS3 has significant SL delays and stops communicating when stressed has been discharged from SALT. The eating disorder specialist ds1 had to see when he weighed 3.5st at 10 years old asked me to tell her about autism as she did not know much.
When I had a breakdown last year the GP called SSD and told them to sort something she was refused. File closed. My BIL has suggested euthanasia for disabled people becuase apparently 'we cannot afford them'- and that is something the Government seeks to promote, this concept of unaffordability.
Yet as that quote from Tony Benn goes- 'If you can find money to kill people, you can find money to help people'.
Non visible disability seems to be scapegoated a lot, I notice that I get far more empathy if I just say the boys are disabled than if I mention autism- because autism is a modern thing right? bad parenting, working mothers, spoilt kids. just because research shows brain damage and genetic changes and that autism was about in the same proportion before the labels existed- who cares when you have a nice little 'other' to point at?
Sooner or later, the system will implode: people appealing ATOS on ESA will have to work or lose all income- except if they could work at all they wouldn;t be entitled to ESA anyway! Homelessness of people with disabilities will go sky high and suicides will be common; Uniersal credit will bring financial collpase to many, especially those who care for people on MR DLA (will have to work or face workfare, and the work hours are set where CA stops so no help tehre either). People will ask why so many people with MH disorders are on the streets and maybe even cause a risk to- ahem- 'hard pressed working families'. And I will sob becuase I have tried so very, very many times to explain and been ignored, treated as a pest with an axe to grind or even dismissed as 'oh but we don't mean YOUR family, yours are deserving...'. Well, we might be or not depending on how you look at it, but we WILL be affected- £25 PW this year, and it won't get better. A friend who has 3 disabled children and needs her DH to help care for them will lose £200 a month and is terrified.
So really this is just a rant but having professional, academic and actual interests is disability and it's care puts me in a fair place to do that I think. Unless there are suddenly hundreds of businesses willing to hire Carers who need plenty of time off in preference to the many unemployed people without those demands, or disabled people needing adaptations and hospital time off.... a rise in appropriate housing options..... a massive influx of people inspired by some divine light who wish to provide respite and support disability charities.... chances for carers to retrain.... childcare option for disbaled kids 9and that emans those over 12, or 14, as well- when many palces stop accepting children)- well without that everyone is stuffed basically.
And I do mean everyone because all it will do is create a timebomb: people who need far more care because they were let down, carers in psych care or who have killed themselves, disabled people traumatised by a lack of help needing psych in patient care... buty perhaps crucially people who have given in to the whole game of divide and rule the current government is playing and that who DO believe that disabled means a scrounger; that not working is a choice- people who have dangerous opinions and a vote. A terrifying combination.