This Is My Child update

[RowanMumsnet]

Hello all

Just wanted to let you know what’s happening with This Is My Child.

We’ve been really keen to do something on how some local authorities make it difficult for families to gain access to statutorily mandated support (for health, social care and/or education.)

But given that the new Children and Families Act will have a big impact on the service-provision landscape, we think it’s best to wait until the Act has been fully implemented (which is due to happen in September), and then ask for your views on how it’s working, and make some noise with the results.

In the meantime, we’re going to be putting up a (hopefully) informative and useful page about the statementing process, and arranging some webchats following the enthusiastic reception for Professor Richard Hastings; let us know if you have any suggestions.

Finally, two things you may be interested in: there’s a thread running here about the possibility of us doing some material on invisible disabilities in adults, and a thread here about what would be on your policy wishlist for the main parties, so please let us know what you think.

Thanks
MNHQ

Hello, I saw this
As some of you will know, there is a bit of an emphasis on invisible disability (albeit among children) in our This Is My Child campaign
on the thread discussing a campaign about hidden disabilities.

I just wondered whether there had been a change of focus, because although I know that the hidden disabilities aspect of This Is My Child is an important one to remind people about, I think there is a danger of it becoming about just this. In the excellent article in the Guardian about the campaign, 2 of the mumsnetters interviewed had children with genetic conditions, highly visible conditions and physical disabilities - all of which come with their own difficulties.

It is a battle for all children with disabilities to get the support they need, the healthcare they need (slightly embittered after a 2 month battle to get an X-ray on ds's hips!) and to have a voice.

Hazey I agree completely let's make this about all diabolities

Sorry for apalling typo disabilities

sorry, burst out laughing at diaboloties!

Hi, I think there is (rightly) some emphasis on hidden disabilities I agree with hazey, and as ds has cp a physical noticeable disability one big concern I have is that he is just the child who falls in the gaps with the children and families act as his needs are medical (or easily characterised as medical anyway). Now we fought and got a statement but as physical disabilities make up a fairly small percentage of disabilities in children we get lost in the system too, especially within the NHS.

Now don't get me wrong the NHS saved ds life, but getting resources ds is entitled to from the NHS gets harder every year and I have to fight them (and explain both patient protocol and GP commissioning to everyone I deal with) for everything. Funding is cut everywhere, no experience left anywhere in the system for therapists (they retire, go abroad, go private) and appointments are gold dust.

Tbh, I think all the current 'invisible' v. 'Visible' disabilities talk is just so much baloney.

At the moment, anyone disabled is starting to be considered (by the political types, and increasingly by the rest of society) as an expensive wasted opportunity. For childhood disabilities, if it's invisible, it doesn't exist. If it's visible, you should've had dc earlier /got an amnio / been more careful, whatever. You certainly should not expect the rest of society to subsidise their education / DLA / NHS costs: look how that dc monopolises the teacher and gets a 1-1, and how come only the dad works, I heard they get everything paid for. Wish we had a guaranteed parking spot, bet they always get a GP appointment

Unless of course, it's the young, previously healthy, unexpectedly terminally ill, very white, tragically sweet dd from the lovely family down the road, we're fundraising for her, as dolphin therapy is their last hope.

Reminds me of racists in the 1980s. "Some of my best friends are black", but . No, of course, I don't mean you, Mr Patel, I just forgot you were listening in there.

There is NO WAY The Act will be fully Implemented in September. The previous act still hasn't even been half implemented.

On the note of diagnosis, do you realise how hard it is to get one and how little it is prioritised? My DD1 got a few standard tests, a couple of less usual ones and now, with no diagnosis, her Paed says 'I've got nothing else up my sleeve.'

That's it. Her and probably 40% of her special school population. No diagnosis and nobody blinks ab eye.

It just seems like local authorities put up such a fight against provision whatever the problem. I fought all the way for DD for her statement and ultimately went to tribunal and got her the provision she needs to support her and which is making a big difference to her life. Meanwhile I am helping another parent I know who has a DD with learning issues. The school refuse to get her tested for anything as "we don't do that". The local authority refused to get anything other than an Ed Psych report for statutory assessment despite the family requesting various concerns were looked at and stating that that had very specific worries. As the LA have no evidence of these other specific worries they now will not statement the child as there is not enough evidence that she needs extra support (and are ignoring the Ed Psych recommendations meanwhile!) What can they do? The LA will not carry out the other assessments, the family can not afford to go privately for this and the child is left without provision. The system is designed to fail children right now and only those parents who are able to negotiate the maze and usually only then with vast additional expense too are finally able to secure some help for their children. I can't see how the new system is going to help. The LAs will turn the whole change around to their advantage, misinterpret the rules to their own benefit and get away with it because they will plead "new policy sorry" when or if challenged over their decisions. Zen's experience above is very worrying but confirms the way I feel things are likely to go countrywide.