Someone asked me about my futire plans amd age etc.
Background to these posts whilst I was being somewhat criticised re a cinema trip I learnt that my brother had had a severe medical emergency was hospitalised for 5 days but had not want to tell me to avoid distress. Suddenly I’m thinking about my own mortality - my mum had the same - and what happens to my son if I get dementia or die.
i was going to draft a post for advice re social housing or supported living but the level of nastiness has actually stopped me wanting to post re these things, so as things stand the current tone of MN is stopping people using it for one of its purposes which is to get advice from people who have experienced the same issues. I don’t trust it not to get hijacked by someone telling me for instance, that my son would be lucky to get housing when hard working tax payers are living in cars etc. Yet surely this is one of the purposes of MN to get help with challenging things where advice is not easily available.
How many people with a disabled offspring have contemplated suicide and then thought better not as we are going to have to stay alive to look after them? I know form talking to people a fair few.
The fact that I am thinking this about getting advice for my son who clearly has complex and challenging needs means that he will have needs which are more than John down the pub etc
The Government has not helped as their messages are really mixed making out that it’s all about people with a bit of mental health issue when their Green paper is far more wide sweeping than that. It’s been presented in a disingenuous way which is quite shocking. This is the most radical overhaul of benefits in at least 10 years. The whole purpose of pip was to trust the recipient and to avoid expensive administration in weighing up the multitude of ways. Quite frankly some of these costs just pop up and are not anticipated eg should we get an updated Ed Psych report for university costing £1500 as old reports more than 3 or so years are not accepted and also to inform the DSA?
what sort of tech should he have for university - do you have a clue as I don’t?
This reform is nothing to do with a bit of mental health but a desire to slash the pip budget thought a dubious consultation. It will impact people and it will most likely cost more.
You want to slash the cost of pip here’s a few ideas
Stop fighting people and provide the direct therapies eg OT and SALT that is needed to make real progress
Offer genuine support in school and also proper specialist school placements so that kids can reach their true potential
Offer life skills as part of that education form an early age- my son went through 19;years of life with no life skills from education - you reap what you sow.
improve buses to make them more ND friendly eg so my son does not have to stand on a busy bus and get brushed against which tortures him
Make sure buses turn up so that they don’t throw someone who had rigid thinking
make buses clean so that they don’t repulse someone with a high sense of smell
ban eating on buses
Set up local minibus services to transport the disabled - most were cost cut
Have swimming quiet hours for the disabled at public pools
offer more disabled sports
set up more disabled clubs or support more grass roots attempts because charitable status is impossible to get and it’s hard to get donations. They need premises and some funds as organisers usually have disabled kids and are carers themselves.
A lifetime need is a huge cost - help as you do with people, putting money away in pensions - parent to put away money tax fresh for their off spring to a reasonable level.
Educate the people to be aware that some people can’t make choices easily and will take time at a counter instead of people tutting
Allow people who get stressed in queues to fast track so they avoid the stress and make shopping more accessible - by stress I mean have sensory issues that make being touched feel like an electric shock
Develop body suits so people can experience life as someone with moderate needs ASD eg the intense fear of touch or the loud sounds and the force of the sound waves.
Sort out pavements so that there is no on pavement parking on narrow roads so that a disabled person is scared to go by for fear of being brushed against
likewise remove all overgrown bushes that impede movement along the pavement
restrict on pavement signage and general street furniture that impedes progress as agin it causes fear and distress.
So how is that for a start?