Re: Funding decision next week

July 26, 2006

In a message dated 26/07/2006 17:54:01 GMT Daylight Time, MaddiganV@... writes:

Decision should be next week.

Keeping it all crossed for you Vicky

lots and lots of luck

Luv Caroline

xxx

July 27, 2006

Margaret I was told for yrs there was a shortage of SLT's, I only discovered the truth at my older HFA boys unit, another mum told me at the language unit they have 2 full time SLT's 2 full days a week for a very small group of children!

My oldest boy was refused a place at this unit when he was 4 even though he had Language and Communication difficulties as his main dx at that time.

Anyway when I confronted head of SLT the next day, by coincidence I had a meeting scheduled, he pretty much owned up, admitted there was no shortage, just a case of prioritizing, I put it bluntly to him and said "My son is not worth spending the time on" !

He agreed to put it in writing for me and wasn't in the least bit fazed, his whole attitude screamed he was perfectly entitled to allot therapists in this way.

Naturally I won't be leaving it at that and will see M.P. Sat morning and see what we can do if anything, but my first thoughts were discrimination also.

It's interesting that SLT is part of Health who I believe have discriminated against my son all the way down the line, at the very least this should be out there for all to see, I will approach the local papers and see if they are interested, but would be interesting to know if this is going on across the Country, do all of you out there who have been told of shortages know for a fact there really is one, do you all know how your authority allot speech therapy?

If this is legal, it still doesen't excuse wholesale lying to parents and paints a very clear picture of what we are all up against when we try and access provision for our children.

Vicky

July 27, 2006

Dear Vicky,

I found something similar is going on with my PCT too. I wrote for

information on the speech therapy service under the Freedom of

Information Act and discovered that they discriminate against people

who have difficulties additional to a speech problem. I am taking it

up with a group called Partners in Policymaking and shall consider

going to the Disability Rights Commission. (I am currently doing the

partners course which involves a group of about 30 of whom about 6

are adults with disabilities and the rest parents of young children.

We spend 2 days a month for 8 months together being trained in quite

a nice hotel.) Once a course of action is decided upon I shall post

again. Discrimination against disabled people (and autism counts as

a disability)in the provision of health care is now illegal. (Yes

don't all laugh out loud cynically at once!)

Margaret

>

> Spoke to PCT today and they have sent Dr Downing's report on s

> treatment to paed, apparently they want her thoughts, even though

she

> said months ago she supports our request.

> Decision should be next week.

> Also have letter coming from head of SLT explaining that far from

> having a shortage of speech therapists they actually prioritize in

so

> much as those thought to benefit most from SLT get therapy and

those

> considered least likely to benefit being my son and everyone else

who

> is non verbal and autistic does not get therapy, well 30 mins a

week

> which is pretty much nothing. Letter is promised by end of the

week and

> meeting with my M.P. is scheduled for Saturday a.m.

> Vicky

>

July 27, 2006

>> Discrimination against disabled people (and autism counts as a disability)in the provision of health care is now illegal.

Where does it state this?, as I am currently battling to get sensory OT provision for my son, who cannot receive this simply because he has autism. I got nowhere with the DRC, they just said I had to prove he had a disability (receiving DLA isn't enough!) then if the PCT has legislation stating why autistic children are excluded from receiving OT, then they can't overrule it. It would be really helpful if I have a statement like that.

Thank you,

Diane

Re: Funding decision next week

Dear Vicky,I found something similar is going on with my PCT too. I wrote for information on the speech therapy service under the Freedom of Information Act and discovered that they discriminate against people who have difficulties additional to a speech problem. I am taking it up with a group called Partners in Policymaking and shall consider going to the Disability Rights Commission. (I am currently doing the partners course which involves a group of about 30 of whom about 6 are adults with disabilities and the rest parents of young children. We spend 2 days a month for 8 months together being trained in quite a nice hotel.) Once a course of action is decided upon I shall post again. Discrimination against disabled people (and autism counts as a disability)in the provision of health care is now illegal. (Yes don't all laugh out loud cynically at once!)Margaret >> Spoke to PCT today and they have sent Dr Downing's report on s > treatment to paed, apparently they want her thoughts, even though she > said months ago she supports our request.> Decision should be next week.> Also have letter coming from head of SLT explaining that far from > having a shortage of speech therapists they actually prioritize in so > much as those thought to benefit most from SLT get therapy and those > considered least likely to benefit being my son and everyone else who > is non verbal and autistic does not get therapy, well 30 mins a week > which is pretty much nothing. Letter is promised by end of the week and > meeting with my M.P. is scheduled for Saturday a.m.> Vicky>

July 27, 2006

Margaret,

I ask for my sons Speech and Language record under FOI and Data

protection and got back a form to complete along with £50 charge. A

week later I got a letter of apology that the first letter was send

in error and a pre-paid envelope to return the letter(?). The S & T

Manager is always in a meeting. Please can you email me to explain

PCT 'discriminate against people

> who have difficulties additional to a speech problem' because it

would confirm my gut feeling of my PCT bad S & L provision.

Thanks

Bridget

-- In Autism Treatment , " mcollins2001uk "

<m.collins9@...> wrote:

>

> Dear Vicky,

> I found something similar is going on with my PCT too. I wrote for

> information on the speech therapy service under the Freedom of

> Information Act and discovered that they discriminate against

people

> who have difficulties additional to a speech problem. I am taking

it

> up with a group called Partners in Policymaking and shall consider

> going to the Disability Rights Commission. (I am currently doing

the

> partners course which involves a group of about 30 of whom about 6

> are adults with disabilities and the rest parents of young

children.

> We spend 2 days a month for 8 months together being trained in

quite

> a nice hotel.) Once a course of action is decided upon I shall

post

> again. Discrimination against disabled people (and autism counts

as

> a disability)in the provision of health care is now illegal. (Yes

> don't all laugh out loud cynically at once!)

>

> Margaret

>

> >

> > Spoke to PCT today and they have sent Dr Downing's report on

s

> > treatment to paed, apparently they want her thoughts, even

though

> she

> > said months ago she supports our request.

> > Decision should be next week.

> > Also have letter coming from head of SLT explaining that far

from

> > having a shortage of speech therapists they actually prioritize

in

> so

> > much as those thought to benefit most from SLT get therapy and

> those

> > considered least likely to benefit being my son and everyone

else

> who

> > is non verbal and autistic does not get therapy, well 30 mins a

> week

> > which is pretty much nothing. Letter is promised by end of the

> week and

> > meeting with my M.P. is scheduled for Saturday a.m.

> > Vicky

> >

>

July 27, 2006

hi just a thought if you are in the u.k there is a charity called bibic who do holistic therapy plans and assesements which includes a sensory program they have a website if you are interested and they have a funding program for people on low incomes but i know of families where both families work and have had the assesement fully funded they are based in somerset. melissam_d33@... wrote: >> Discrimination

against disabled people (and autism counts as a disability)in the provision of health care is now illegal. Where does it state this?, as I am currently battling to get sensory OT provision for my son, who cannot receive this simply because he has autism. I got nowhere with the DRC, they just said I had to prove he had a disability (receiving DLA isn't enough!) then if the PCT has legislation stating why autistic children are excluded from receiving OT, then they can't overrule it. It would be really helpful if I have a statement like that. Thank you, Diane Re: Funding decision next week Dear Vicky,I found something similar is going on with my PCT too. I wrote for information on the speech therapy service under the Freedom of Information Act and discovered that they discriminate

against people who have difficulties additional to a speech problem. I am taking it up with a group called Partners in Policymaking and shall consider going to the Disability Rights Commission. (I am currently doing the partners course which involves a group of about 30 of whom about 6 are adults with disabilities and the rest parents of young children. We spend 2 days a month for 8 months together being trained in quite a nice hotel.) Once a course of action is decided upon I shall post again. Discrimination against disabled people (and autism counts as a disability)in the provision of health care is now illegal. (Yes don't all laugh out loud cynically at once!)Margaret >> Spoke to PCT today and they have sent Dr Downing's

report on s > treatment to paed, apparently they want her thoughts, even though she > said months ago she supports our request.> Decision should be next week.> Also have letter coming from head of SLT explaining that far from > having a shortage of speech therapists they actually prioritize in so > much as those thought to benefit most from SLT get therapy and those > considered least likely to benefit being my son and everyone else who > is non verbal and autistic does not get therapy, well 30 mins a week > which is pretty much nothing. Letter is promised by end of the week and > meeting with my M.P. is scheduled for Saturday a.m.> Vicky>

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July 27, 2006

Thanks,

I doubt we would get it paid for, we can't get most things. I already know of somewhere I could take him, I just don't see why I should have to pay for it when other areas of my PCT get it paid for by the NHS. My dd can get OT, but my ds can't, because he is more severe, the fact that he needs it more than her is beside the point. My plan is to badger them until I get on their wick and they offer me what I need to shut me up, this has worked before! For my sins, I came to live in the north east of England, where most medical people have never even heard of Shattock, and as far as I'm aware, I am the only person in this group from the NE, PLEASE correct me if I'm wrong, because everyone up here thinks I'm wasting my time, autism can't be treated and I'm sadly deluded and need to accept my children's diagnosis.

Sorry about the moan!! Just feeling a bit isolated,

Diane

Re: Funding decision next week

Dear Vicky,I found something similar is going on with my PCT too. I wrote for information on the speech therapy service under the Freedom of Information Act and discovered that they discriminate against people who have difficulties additional to a speech problem. I am taking it up with a group called Partners in Policymaking and shall consider going to the Disability Rights Commission. (I am currently doing the partners course which involves a group of about 30 of whom about 6 are adults with disabilities and the rest parents of young children. We spend 2 days a month for 8 months together being trained in quite a nice hotel.) Once a course of action is decided upon I shall post again. Discrimination against disabled people (and autism counts as a disability)in the provision of health care is now illegal. (Yes don't all laugh out loud cynically at once!)Margaret >> Spoke to PCT today and they have sent Dr Downing's report on s > treatment to paed, apparently they want her thoughts, even though she > said months ago she supports our request.> Decision should be next week.> Also have letter coming from head of SLT explaining that far from > having a shortage of speech therapists they actually prioritize in so > much as those thought to benefit most from SLT get therapy and those > considered least likely to benefit being my son and everyone else who > is non verbal and autistic does not get therapy, well 30 mins a week > which is pretty much nothing. Letter is promised by end of the week and > meeting with my M.P. is scheduled for Saturday a.m.> Vicky>

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July 27, 2006

Hi Diane,

I don't know how far North you are, we are on the West Yorkshire /

North Yorkshire border (I know how you feel it does feel like the

back of beyond most of the time).

.

> >

> > Spoke to PCT today and they have sent Dr Downing's report

on s

> > treatment to paed, apparently they want her thoughts, even

though

> she

> > said months ago she supports our request.

> > Decision should be next week.

> > Also have letter coming from head of SLT explaining that

far from

> > having a shortage of speech therapists they actually

prioritize in

> so

> > much as those thought to benefit most from SLT get therapy

and

> those

> > considered least likely to benefit being my son and

everyone else

> who

> > is non verbal and autistic does not get therapy, well 30

mins a

> week

> > which is pretty much nothing. Letter is promised by end of

the

> week and

> > meeting with my M.P. is scheduled for Saturday a.m.

> > Vicky

> >

>

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

----------

> See the all-new, redesigned .com. Check it out.

>

July 27, 2006

Hi ,

I feel like I've been a real whinge now! I'm north of Durham City, very close to where Durham play county cricket. Watch out for the castle next time the cricket is on, I'll be up there walking my dog.

Thanks!

Diane

Re: Funding decision next week

Hi Diane,I don't know how far North you are, we are on the West Yorkshire / North Yorkshire border (I know how you feel it does feel like the back of beyond most of the time)..> >> > Spoke to PCT today and they have sent Dr Downing's report on s > > treatment to paed, apparently they want her thoughts, even though > she > > said months ago she supports our request.> > Decision should be next week.> > Also have letter coming from head of SLT explaining that far from > > having a shortage of speech therapists they actually prioritize in > so > > much as those thought to benefit most from SLT get therapy and > those > > considered least likely to benefit being my son and everyone else > who > > is non verbal and autistic does not get therapy, well 30 mins a > week > > which is pretty much nothing. Letter is promised by end of the > week and > > meeting with my M.P. is scheduled for Saturday a.m.> > Vicky> >> > > > > > > --------------------------------------------------------------------> See the all-new, redesigned .com. Check it out.>

July 27, 2006

hi don't worry everyone needs a good moan now and again, i live in rual ireland the midwest and noone here knows much about any autism treatments with the execption of aba, i am in the process of moving back to the midlands in england can't wait i go on sunday, only draw back is there the paed doesn't even see autistic children he dx them and then you are on your own , we got the bibic thing paid and were on 2000+ a month and they saw my daughter too as she has learning problems with maths and working memory, it was them who first introduced me too vitamins and diet intervention and i was so grateful as shane has gone from being dx servre autism to mild-moderate asd (mostly due to biomed) ttfn melissa m_d33@... wrote: Thanks, I doubt we would get it paid for, we can't get most things. I already know of somewhere I could take him, I just don't see why I should have to pay for it when other areas of my PCT get it paid for by the NHS. My dd can get OT, but my ds can't, because he is more severe, the fact that he needs it more than her is beside the point. My plan is to badger them until I get on their wick and they offer me what I need to shut me up, this has worked before! For my sins, I came to live in the north east of England, where most medical people

have never even heard of Shattock, and as far as I'm aware, I am the only person in this group from the NE, PLEASE correct me if I'm wrong, because everyone up here thinks I'm wasting my time, autism can't be treated and I'm sadly deluded and need to accept my children's diagnosis. Sorry about the moan!! Just feeling a bit isolated, Diane Re: Funding decision next week Dear Vicky,I found something similar is going on with my PCT too. I wrote

for information on the speech therapy service under the Freedom of Information Act and discovered that they discriminate against people who have difficulties additional to a speech problem. I am taking it up with a group called Partners in Policymaking and shall consider going to the Disability Rights Commission. (I am currently doing the partners course which involves a group of about 30 of whom about 6 are adults with disabilities and the rest parents of young children. We spend 2 days a month for 8 months together being trained in quite a nice hotel.) Once a course of action is decided upon I shall post again. Discrimination against disabled people (and autism counts as a disability)in the provision of health care is now illegal. (Yes don't all laugh out loud cynically at once!)Margaret >> Spoke to PCT today and they have sent Dr Downing's report on s > treatment to paed, apparently they want her thoughts, even though she > said months ago she supports our request.> Decision should be next week.> Also have letter coming from head of SLT explaining that far from > having a shortage of speech therapists they actually prioritize in so > much as those thought to benefit most from SLT get therapy and those > considered least likely to benefit being my son and everyone else who > is non verbal and autistic does not get therapy, well 30 mins a week > which is pretty much nothing. Letter is promised by end of the week and > meeting with my M.P. is scheduled for Saturday a.m.> Vicky> See the all-new, redesigned .com. Check it out.

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August 1, 2006

Blimey Margaret!

The treatment of our children by the authorities shocks me every day. Well done

for finding this out and well done for doing something about it! Everything’s

crossed for you! Sara x