Re: HMG autism document in files

April 12, 2008

Southwark has one of the new integrated children's services departments bringing together health, education and social care. No effect on anything yet.

>>Ditto for Dorset - we even have an great ASD Strategy, only took the group which included parents and was even chaired by one (pity she is a give em drugs type) about 2 years of meetings but never was it discussed where the money would come from to implement it, so it sits on a shelf although its referred to all the time. The group charged with the consultation locally on the several million up for grabs in Short Breaks funding from central government (also headed by previosuly referred to parent) is limiting number of parent particpants to 100, there are 104 in a group I attend (not biomed focused but loved Russel Blaylock DVD) that has no affilaition with other aforementioned group, its a minefield. I gavce attending the focus group and went out in style, pointedly staring out the main paed that prescribes the ritalin during my rant at their short sightedness and not attending TA conference, and the development worker who said the only thing available for our kids was behavioural modicfication and we aren;t talking ABA here........sigh

Mandi x

April 12, 2008

I don't know how you do it Zoe. I greatly admire your patience,

persistence and steel. I think that when you write us and we you must

really mean I because such dogged and talented bureaucratic infighters

are rare. There can't be more than one in Oldham.

Sally

Zoe wrote:

>

> I know what you mean about documents bearing no relation to what's

> happening on the ground............a document is only as good as

> s/he who uses it.

>

> Thats why ASDGs are important because they provide a focus for

> parents to come together to work towards common goals. It's up to

> us to hold the LA/PCT etc to account: no-one is gonna do it for us

> so if we want change we have to get down and dirty

>

> As you know, I took the decision some time ago to make a commitment

> to local campaigning and it is certainly bearing fruit.

>

> (What will be) Oldham Children's Trust have just agreed to fund a

> Parent Involvement Officer (brief will be to ensure involvement of

> parents of children with disabilities in all levels - including

> strategic commissioning - of the decision-making processes for

> children with disabilities). We parents have been campaigning for

> this for over 2 years - with various setbacks - but because we have

> been able to harness the momentum of the EDCM campaign recently, our

> lobbying has got much much more effective.

>

> In Oldham we believe the only way we are going to achieve real

> change is if we work together with the service providers (holding

> them to account when necessary - we have not had to resort to that

> so far) and get them to resource us to be able to work with them

> effectively (hence the Parent Involvement post).

>

> We have now got Glenys from the Autism Centre for Education

> and Research at Bham Uni on our research project management panel

> and our research is focusing on the barriers to meaningful parent

> involvement in decision-making processes.........that has focused

> the minds of the LA and PCT, I can tell you!

>

> We have spun it to them as a peice of research out of which will

> come Oldham as an exemplar for parental involvement.

>

> We will be using both Austin's guidance and the NAPC in our

> ASDG, as targets to work towards..........it will be like climbing a

> mountain but we have to start somewhere.

>

> Zoe

>

> >

> > Thanks very much for posting this Zoe.

> >

> > It reminds me of the Code of Practice on SEN -- an admirable

> document

> > bearing no relation to events on the ground. You posted a draft.

> Is the

> > final thing published? Interesting that it takes for granted that

> > numbers are increasing and will increase and must be planned for.

> A

> > natural concern for the cost of all this is evident.

> >

> > Southwark has one of the new integrated children's services

> departments

> > bringing together health, education and social care. No effect on

> > anything yet. We are in the middle of a spat between SS and

> education

> > about who should pay for her services.

> >

> > This document feels that ASD-friendly services should be provided

> for

> > people who do not have a diagnosis yet. Edith has got an ss

> assessment

> > which describes her condition as " autism " and goes on to refuse

> all

> > services. The document feels like a message from the fairies or

> perhaps

> > a dream

> >

> > xx sally

> >

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.22.10/1367 - Release Date: 09/04/2008

07:10

>

April 13, 2008

In our area there was also a massive consultation and a shiny policy

document ensued a few years ago but no evidence of where funding

coming from, then everything was delayed to set up the children's

trust...one of the first projects of the trust was to do a review of

SEN which is basically a front for devolving finance into schools

without building up the capacity of any of the services - so it

doesn't bode well for the Trust as an effective vehicule.I do admire

Zoe for tenacity with her local authority and NAS, getting change is

like pulling teeth here and there are far too many who have to give

up the fight if only to maintain their sanity. When I worked in

Brussels the British used to give out about the bureaucratic hurdles -

I genuinely now feel that Brussels is far more accessible than UK

bodies both local and national.

Just my tuppence worth

>

> In a message dated 12/04/2008 18:57:12 GMT Standard Time,

> bobsallyeva@... writes:

>

> Southwark has one of the new integrated children's services

departments

> bringing together health, education and social care. No effect on

> anything yet.

>

> >>Ditto for Dorset - we even have an great ASD Strategy, only took

the group

> which included parents and was even chaired by one (pity she is a

give em

> drugs type) about 2 years of meetings but never was it discussed

where the

> money would come from to implement it, so it sits on a shelf

although its

> referred to all the time. The group charged with the consultation

locally on the

> several million up for grabs in Short Breaks funding from central

government

> (also headed by previosuly referred to parent) is limiting number

of parent

> particpants to 100, there are 104 in a group I attend (not biomed

focused but

> loved Russel Blaylock DVD) that has no affilaition with other

aforementioned

> group, its a minefield. I gavce attending the focus group and went

out in style,

> pointedly staring out the main paed that prescribes the ritalin

during my

> rant at their short sightedness and not attending TA conference,

and the

> development worker who said the only thing available for our kids

was behavioural

> modicfication and we aren;t talking ABA here........sigh

>

> Mandi x

>

April 13, 2008

I find it very hard to fight without getting angry and getting angry

makes me exhausted and tetchy with everyone else. I simply get less done

because I'm cross and obsessional. So I think it's better for me

personally to be positive and put 100% into Edith and the rest of my

family -- and not into the general situation. I'm not being altruistic

at all. BB was talking about fighting SLT on behalf of other people's

children. I just don't do that and I try not to think about it because

it reduces my ability to do the positive things that can be done here.

The best revenge is to live well -- I try not to think of it as revenge.

I just try to do my best for the people in front of me, those given to

me to care for, and to forget everything else.

Without money the whole thing is just a waste of trees, as they say.

xx Sally

claire_downey wrote:

>

> In our area there was also a massive consultation and a shiny policy

> document ensued a few years ago but no evidence of where funding

> coming from, then everything was delayed to set up the children's

> trust...one of the first projects of the trust was to do a review of

> SEN which is basically a front for devolving finance into schools

> without building up the capacity of any of the services - so it

> doesn't bode well for the Trust as an effective vehicule.I do admire

> Zoe for tenacity with her local authority and NAS, getting change is

> like pulling teeth here and there are far too many who have to give

> up the fight if only to maintain their sanity. When I worked in

> Brussels the British used to give out about the bureaucratic hurdles -

> I genuinely now feel that Brussels is far more accessible than UK

> bodies both local and national.

>

> Just my tuppence worth

>

> >

> > In a message dated 12/04/2008 18:57:12 GMT Standard Time,

> > bobsallyeva@... writes:

> >

> > Southwark has one of the new integrated children's services

> departments

> > bringing together health, education and social care. No effect on

> > anything yet.

> >

> > >>Ditto for Dorset - we even have an great ASD Strategy, only took

> the group

> > which included parents and was even chaired by one (pity she is a

> give em

> > drugs type) about 2 years of meetings but never was it discussed

> where the

> > money would come from to implement it, so it sits on a shelf

> although its

> > referred to all the time. The group charged with the consultation

> locally on the

> > several million up for grabs in Short Breaks funding from central

> government

> > (also headed by previosuly referred to parent) is limiting number

> of parent

> > particpants to 100, there are 104 in a group I attend (not biomed

> focused but

> > loved Russel Blaylock DVD) that has no affilaition with other

> aforementioned

> > group, its a minefield. I gavce attending the focus group and went

> out in style,

> > pointedly staring out the main paed that prescribes the ritalin

> during my

> > rant at their short sightedness and not attending TA conference,

> and the

> > development worker who said the only thing available for our kids

> was behavioural

> > modicfication and we aren;t talking ABA here........sigh

> >

> > Mandi x

> >

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.22.10/1367 - Release Date: 09/04/2008

07:10

>

April 13, 2008

Zoe,

Would it be possible to send the document direct to me as a Word

attachment or pdf please? I can't save it to my desktop from the

files page and for some reason the link on the opened document

doesn't work either - I'd like to forward it to the Chair of our

local group as they tried (and failed) to get a scrutiny review of

autism services.

Thanks,

Margaret

> >

> > Thanks very much for posting this Zoe.

> >

> > It reminds me of the Code of Practice on SEN -- an admirable

> document

> > bearing no relation to events on the ground. You posted a draft.

> Is the

> > final thing published? Interesting that it takes for granted that

> > numbers are increasing and will increase and must be planned for.

> A

> > natural concern for the cost of all this is evident.

> >

> > Southwark has one of the new integrated children's services

> departments

> > bringing together health, education and social care. No effect on

> > anything yet. We are in the middle of a spat between SS and

> education

> > about who should pay for her services.

> >

> > This document feels that ASD-friendly services should be provided

> for

> > people who do not have a diagnosis yet. Edith has got an ss

> assessment

> > which describes her condition as " autism " and goes on to refuse

> all

> > services. The document feels like a message from the fairies or

> perhaps

> > a dream

> >

> > xx sally

> >

>

April 13, 2008

In many ways I think you are right and I have put a time limit on my

involvement locally now ~(unless I start getting paid for it) - then

I see something inexcusable and get angry and the cycle starts up

again.....seeing progress despite the efforts of the PCT as you

say is the best revenge. But when they start claiming credit for his

progress then I see red! I am generally an extremely laid back person

but the abuse of power perpetrated on families like ours by the DOH

and PCTs is very hard to be placid about.

> > >

> > > In a message dated 12/04/2008 18:57:12 GMT Standard Time,

> > > bobsallyeva@ writes:

> > >

> > > Southwark has one of the new integrated children's services

> > departments

> > > bringing together health, education and social care. No effect

on

> > > anything yet.

> > >

> > > >>Ditto for Dorset - we even have an great ASD Strategy, only

took

> > the group

> > > which included parents and was even chaired by one (pity she is

a

> > give em

> > > drugs type) about 2 years of meetings but never was it discussed

> > where the

> > > money would come from to implement it, so it sits on a shelf

> > although its

> > > referred to all the time. The group charged with the

consultation

> > locally on the

> > > several million up for grabs in Short Breaks funding from

central

> > government

> > > (also headed by previosuly referred to parent) is limiting

number

> > of parent

> > > particpants to 100, there are 104 in a group I attend (not

biomed

> > focused but

> > > loved Russel Blaylock DVD) that has no affilaition with other

> > aforementioned

> > > group, its a minefield. I gavce attending the focus group and

went

> > out in style,

> > > pointedly staring out the main paed that prescribes the ritalin

> > during my

> > > rant at their short sightedness and not attending TA conference,

> > and the

> > > development worker who said the only thing available for our

kids

> > was behavioural

> > > modicfication and we aren;t talking ABA here........sigh

> > >

> > > Mandi x

> > >

> >

> > ------------------------------------------------------------------

------

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.5.516 / Virus Database: 269.22.10/1367 - Release Date:

09/04/2008 07:10

> >

>

April 13, 2008

Hi, I did as you're doing Sally and I wouldn't have changed it, except I still couldn't stop hitting the buffers, slowly deteriorating eyesight (a retinal detachment and cataract), so that he's now blind in his left eye, badly affected his and our way of lives. Couple with that, many visits and no action from SS, and the Learning and Skills Council refusing to fund anything that didn't take place in one of their establishments, despite great efforts from our Connexions adviser and many others as well, and the recipe was laid out for disaster. Out of all that has, however, come the good(?) thing of moving into supported living. We're still very much involved in making sure that is going to work as best it can but we're no longer 'hands on' 24 hours a day. All of which is a preamble to say that I do now feel I must do

something to try to make life better for others, but, at the same time, there's no way I can cope with the bureaucrat-ese in which this and other such documents are written. It's a language which nobody speaks. I take my hat off to you Zoe and to anyone else making progress in such a world. Patience Eva family wrote: I find it very hard to fight without getting angry and getting angry makes me

exhausted and tetchy with everyone else. I simply get less done because I'm cross and obsessional. So I think it's better for me personally to be positive and put 100% into Edith and the rest of my family -- and not into the general situation. I'm not being altruistic at all. BB was talking about fighting SLT on behalf of other people's children. I just don't do that and I try not to think about it because it reduces my ability to do the positive things that can be done here. The best revenge is to live well -- I try not to think of it as revenge. I just try to do my best for the people in front of me, those given to me to care for, and to forget everything else.Without money the whole thing is just a waste of trees, as they say.xx Sallyclaire_downey wrote:>>> In our area there was also a massive consultation and a shiny policy> document ensued a few years ago but no evidence of where

funding> coming from, then everything was delayed to set up the children's> trust...one of the first projects of the trust was to do a review of> SEN which is basically a front for devolving finance into schools> without building up the capacity of any of the services - so it> doesn't bode well for the Trust as an effective vehicule.I do admire> Zoe for tenacity with her local authority and NAS, getting change is> like pulling teeth here and there are far too many who have to give> up the fight if only to maintain their sanity. When I worked in> Brussels the British used to give out about the bureaucratic hurdles -> I genuinely now feel that Brussels is far more accessible than UK> bodies both local and national.>> Just my tuppence worth>> >> > >> >> > > >> > Southwark has one of the new integrated children's services> departments> > bringing together health, education and social care. No effect on> > anything yet.> >> >> > >>Ditto for Dorset - we even have an great ASD Strategy, only took> the group> > which included parents and was even chaired by one (pity she is a> give em> > drugs type) about 2 years of meetings but never was it discussed> where the> > money would come from to implement it, so it sits on a shelf>

although its> > referred to all the time. The group charged with the consultation> locally on the> > several million up for grabs in Short Breaks funding from central> government> > (also headed by previosuly referred to parent) is limiting number> of parent> > particpants to 100, there are 104 in a group I attend (not biomed> focused but> > loved Russel Blaylock DVD) that has no affilaition with other> aforementioned> > group, its a minefield. I gavce attending the focus group and went> out in style,> > pointedly staring out the main paed that prescribes the ritalin> during my> > rant at their short sightedness and not attending TA conference,> and the> > development worker who said the only thing available for our kids> was behavioural> > modicfication and we aren;t talking ABA here........sigh>

>> > Mandi x> >>> > ---------------------------------------------------------->> No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.22.10/1367 - Release Date: 09/04/2008 07:10>

Yahoo! for Good helps you make a difference

April 13, 2008

Fighting

the LEA and the tribunal and re-call of the tribunal nearly killed me. In

retrospect I don’t think it was worth it and wish I’d concentrated

my efforts on Tom and biomed. However, when there are amazing people like Zoe out there (and there are quite a few on this list) then

I think they give us the power to unite. As a group things

become way less stressful and less likely to drive us angry/insane, etc, a bit

like coming on this forum. Going to the GMC with other parents was a complete

pleasure and makes me feel REALLY sane and justified, etc. If I’d gone

there alone I wouldn’t be feeling like that.

-----Original

Message-----

From:

Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of Patience Elliott

Sent: 13 April 2008 10:53

To:

Autism-Biomedical-Europe

Subject: Re:

Re: HMG autism document in files

Hi,

I did as you're doing

Sally and I wouldn't have changed it, except I still couldn't stop hitting

the buffers, slowly deteriorating eyesight (a retinal detachment and cataract),

so that he's now blind in his left eye, badly affected his and our way of lives.

Couple with that, many

visits and no action from SS, and the Learning and Skills Council refusing to

fund anything that didn't take place in one of their establishments, despite

great efforts from our Connexions adviser and many others as well, and

the recipe was laid out for disaster.

Out of all that has,

however, come the good(?) thing of moving into supported living. We're

still very much involved in making sure that is going to work as best it can

but we're no longer 'hands on' 24 hours a day.

All of which is a

preamble to say that I do now feel I must do something to try to make life

better for others, but, at the same time, there's no way I can cope with

the bureaucrat-ese in which this and other such documents are written.

It's a language which nobody speaks.

I take my hat off to you

Zoe and to anyone else making progress in such a world.

Patience

Eva family

<bobsallyevantlworld> wrote:

I find it very hard to

fight without getting angry and getting angry