[senco-forum] Disability Living Allowance

I have been following some of this erratically but feel that I may have  
something to contribute, as a parent and as an SEN support service  teacher.
I applied for DLA for my son before he was two and got it before anyone  
would admit to me that he had problems. He also got his Statement as soon after  
two as it could have been and received educational support. I have been filling 
 in forms now with monotonous regularity, as he is now 20. I have just filled 
the  40 page booklet again mainly with answers like 'no change' as the same 
forms are  used for people who have acquired their difficulties later in life 
and there  seems to be no way of anyone accepting that a life long condition is 
just  that.
Part of the problem in filling the forms and ascertaining need is that you  
have to imagine a negative a worst case scenario to put your case, when you  
spend the rest of the time trying to show some progress and improvement. If  
someone is 20 and functions at the level of an eight year old, progress can mean  
that it is the level of a nine year old. So what - my life still revolves 
around  him and his needs as it has done since he was born. The difference is 
that at  eight years onwards, most kids start doing things independently and are 
capable  of some sense of danger. Most parents expect their flock to flee the 
nest  eventually and at least to go out with friends and leave you alone one 
night of  the week! My entitlement to respite care is 2 days a year! He was two 
weeks off  being 18 before we saw a Social Worker and then they said they 
(they came as a  pair) couldn't see him again because he was 18, so we have 
battled on for adult  services. The continuous need for assessment is a complete 
waste of time and  money as we know what he can and cant do now - the rest of us 
don't suddenly  learn Russian or sprint 100 yards at speed because we are 
adult. But he looks  'normal' and speaks as though he understands, and we have 
strategies for coping  with motor skills, etc.
In summary, DLA is for those who are not able to function at the level of  
their peers and are not likely to. For parents it involves at least a partial  
acceptance of the severity of their child's condition. Professionals are 
usually  slow to call a spade a spade and parents can be slow to respond to the 
spade  when they are still thinking of a shovel. Having  a child with this level  
of special need is expensive and DLA nowhere near covers it.
I have gone on long enough but it goes on and on and  on....