MNHQ, may I give you some feedback about your survey?
The question:
"Within the first 24 months after your childs' diagnosis, did you receive any formal advice and support on available services from specialist agencies (such as local authorities, disability charities and organisations)?"
Is very, very ambiguous. It was hard to know if you wanted to hear about
a) advice given about services that were available, with the advice coming from local authorities, disability charities and organisations
b) advice given from other agencies about the service that are available from local authorities, disability charities and organisations
c) advice given after parents were initially told there was nothing available but the parents persisted
d) advice freely and openly given
What constitutes 'formal' advice?
I'm not being picky, but perhaps my story will illustrate how hard that question is to anwer in a meaningful way, that will give you results that you can analyse:
DD1 was 'flagged' as having SN when she was 2.9. The first 'professional' we met was the Area Inclusion Co-Ordinator. She considered DD1 'immature' and gave no advice - she arranged 1:1 support at preschool.
DD1's Health Visitor arranged Portage, but only after I had heard about it on MN and contacted the Health Visitor, who said she was doubtful I would get Portage, but she'd give it a whirl. Does that constitute 'advice'? I couldn't self-refer, so in a sense, the HV 'advised' me of how the process worked. But it was me that went to the HV and said 'I want this'.
DD1's Paed didn't mention DLA, but when I asked about it, he said 'well you must be getting higher rate care, surely?' I got all my knowledge of DLA from this site. However, the Paed, once I brought it up, gave me some information. Did he 'advise' me?
DD1's social worker came to assess her. She didn't even know what piedro boots were. She 'advised' me of family fund, which we already knew about from this board.
OT 'advised me' about weighted blankets etc., but only after I approached them to ask about them because I'd heard of them here.
I was also 'advised' that
a) DD1 didn't have SN, then
b) DD1 was just 'immature', then
c) DD1's SN weren't that bad
d) She wouldn't get a Statement
c) She wouldn't get a social worker
d) She wouldn't get social services support
e) She wouldn't get specialist provision
f) There are many worse kids in MS schools
If I'd listened, and didn't have MN at that time, I would have believed.
DD1, by the way, does have special needs, does have a statement, does have a social worker, does get social services support, does have specialist provision.
It's a bit of an essay, but basically, the question is so ambiguous, that I ended up ticking 'yes' despite all of the above.