We want to hear from you: please tell us about your experience of the online community.
Hi @DannyMoore it's a difficult subject to address and I get exactly what you mean it's hard when it's written to get the point across as intended isn't it?
For us personally,no it's absolutely NOT about the money,it never was and never will be.We are fortunate in that my husband has always worked so we can cover our expenses,unlike many.
I have a son with Autism and I suppose, I've become like him in a lot of ways after having to live such a regimented life as it where for nearly twenty years..He is an absolute star and his simple way of looking at the world is very refreshing but he has a real issue when people do not follow rules!!
My issue is fairness,the fact procedures in their own rules are not being followed,which then has a knock on effect.
This in turn can lead to a detrimental effect on someones health . If I use my son's mobility issues for example he has always been provided with transportation or he doesn't travel.Not because he's lazy because it's unsafe and he physically can't do it,let alone safely etc.
I totally agree with you since disability has been 'monetised' it has become more of an issue all round.It is hard though because of the many types of disabilities no one size approach fits all hence the need for the system so disabled users can use the benefit for services they need.
My cousin as I said in another thread was provided with a Reliant Robin type car and eventually supported housing.I think back then approx. 40 years ago any help was given in services and goods rather than cash support.
P.S I forgot to add the most important bit that I would rather have two healthy son's,but despite their differences they are my world and I would not change them
We also did not claim benefits for many years until someone saw me strolling to school with my son's spare back brace and we got chatting I had never even heard of DLA and didn't even think they would get it.
Hi @DannyMoore it's lovely to meet you and I for one think the way you and my son look at the world is amazing.
He has taught me so much and allows me so often, to celebrate the smallest joys in life that other people may not even notice!
There are many people working very hard to try and help get the system right.I know I won't be giving up anytime soon
Fairness is very important to me and my son and one of the questions I actually put to the DWP ministers,regarding support for people who do not have family etc.
It will take time to get the system right and the more we try to help hopefully the better it will get.
It's nice to have a moan once in a while but I believe in being constructive and trying to help put things right as well (my son's influence again I get told off if I rant for too long lol)
Hi @DannyMoore oh yes I so know what you mean.Going back many years now ,my son is 19,the first thing we learned as parents was to think outside the box as it were..He's our youngest (we have three sons) and everything we ever learnt as parents with the other two literally went straight out the window and we had to start from scratch!
Fortunately the internet had also been born by then so it has been a godsend in a lot of ways to help us learn how to support him best. I find it quite a refreshing outlook to be honest,in such a difficult world we sometimes we live in.
@Nystagmite yes I think my son was more worried about when he attends appointments and not having his blue badge as parking is such a nightmare in London.You are so right it is more for him at least the other bits that come with it rather than financial.
.I'm hoping my son's will both be able to eventually live independently with support, so it's nice talking to young people who are already able to manage this.
Thanks @DannyMoore I'll take a look at that later.Sounds like just the sort of thing I'm looking for!
I was fortunate to stumble upon Jacqui Jackson and her family in a documentary regarding diet and autism.Her son Luke is an amazing young man. It gave me hope for my son when we were really struggling.
I needed info mainly on the sensory side as he had and still has a lot of issues with this side of things,over time we came to understand more why he did what he did (he was non verbal til around 5).
We dabbled in the early years with many things,not to change my son,but to try to make his life easier as we got to know his needs.I don't think we'll ever STOP learning and he keeps us on our toes but it is also fascinating to watch him grow up and achieve things.
@Geoark yes I agree the criteria is so different as it concentrates on function mostly and I think it takes a little getting used to filling out the forms differently to the old style DLA.
I think my main issue with 'the system' is the lack of consistency being applied. Again this comes back to quality of assessments,are we all expecting too much of the assessors do you think???
They can't after all be experts on everything I understand that,but are we ever going to get a fair system? One that always works?
The value must be greater than or equal to 1.
Get more out of your online community by signing in or registering