I have a ds who has asd and in April I had to fill in his DLA form for mobility (he's 5 in August) he was on MRC and has been for a year since his diagnosis of Autism last March.
His key worker at Nursery told me to fill in a change of circumstances form late last year as his care needs had changed alot since I last did the form, I didn't as I knew i'd have to redo it all again anyway before he was 5 so I've done the form now and have waited 11 weeks to hear back from them.
Yesterday I rang them as I was getting worried with it taking so long and they told me a decision has been made HRC til 2024 but no mobility at all. Now I'm happy he's been given HRC as he should have been on this anyway, he needs constant supervision he's been accepted into a sn school in September thats v difficult to get into and he hardly sleeps now but I feel he should have been given some mobility wether its low or high Im not sure.
Can anyone offer me any type of advice, I don't know what to do I did the forms by myself and haven't had any help apart from reading the guidelines online.
Ive been so upset since I found out, I cannot walk anywhere with ds alone, he still goes in a buggy if we HAVE to go somewhere busy, getting out and about with ds is a huge issue for us and its been mentioned at every appointment/meeting etc but non of this is ever put in a letter or his ehc plan as he doesn't go out on trips etc with nursery so its not necessary yet and for the past year the people involved with ds have been more bothered about his sleep/sensory issues and a school place at a sn school.
Can anyone offer me any useful advice, should I appeal or leave it as it is?