That is all I ever seem to do to get anywhere with the Local Authority.
Why is it that parents who are already struggling to cope emotionally,physically, mentally and financially with a disabled child, then have to struggle to get any sort of help and support from the very people paid to do such a thing.
Disability Living Allowance is a phone book thick pile of form filling. Answering question after question. Then, once sent to their offices, the form is looked at by someone who has no training or understanding of special needs and disabilities and is only looking for 'key words'. If you have taken your time to honestly fill out their forms, but omit their secret special 'key words' then you will not get what is entitled to you.
An example - I knew we were entitled to DLA. I filled it out correctly and honestly. I receive a standard letter, 12 weeks later, stating we were not entitled to anything from them. Why?
Well, autism, does not feature on their 'key words'. However, 'organic brain dysfunction' does. These two are one and the same, just different words. When I re-applied using these 'key words', 12 weeks later we got an acceptance letter. How disgusting is that?
If I had not done my homework, and trawled through the Internet I would not have found this little jewel of information and would still be poorer for it.
Now on to Carers Allowance.
This is paid to you if you cannot work as you are caring for someone who gets DLA. You can work up to 16 hours per week and still claim, but the majority of us carers have to do this caring job 24/7 so a part time job is out of the question.
So why is it that the allowance is little over £45 per week? How the hell is someone supposed to live on that amount and not work? It is a joke. A joke which this and every other Government love to play, all the while having their swimming pools drained and hedges topiaried.
We have a team of social workers specialising in disabilities in our area. They are a bunch of 'professionals' (I use the term loosely for some of them) with whom you liaise and supposedly get help for a variety of things such as a phyc for your child, a nurse to talk about health concerns, a dedicated worker who is there for you when you need help and advice, an occupational therapist etc.
But these 'professionals' lack a certain something. That being, in my opinion, any kind of pro-activeness. They are re-active.
We had been on a waiting list to get on to a waiting list to see the occupational therapist for one year. Yes you read that correctly - a waiting list to get on to a waiting list! Then, once on the waiting list to see the OT, it took another full year before we got an appointment.
I am only touching the tip of the ice berg here with the faults and failings of the services provided for children with disabilities and their families.
One day perhaps, this Government, the Local Authorities and those in charge of providing these services will get their acts together, stop wasting valuable money on 'team building' exercises and corporate lunches and jollies to top class hotels to discuss how they might achieve a better class service and actually deliver one.
What good is it to a child in a home environment that is struggling to cope if these 'professionals' are not interested until it is too late?
Our area has a respite building for children. The children that get in there are from homes with abuse. The authority do not provide any respite for disabled children who are not from abused homes. Can you see what I am saying here? They only allow children in once they have been abused ( and by abused I refer to physical violence) and not before. So the families struggling to cope get no help, are then pushed to their limits, snap, and then the child is helped. Where is the help before this occurs? Logic dictates this. Sadly logic is missing from most social workers and their office staff.
