Re: applying to look after my son's welfare at...

[Guest guest]

Hi ,

Huge bureaucracy and lots of legal requirements to be met in setting up a

residential home... all of which would have to be met if you want SS funding.

I know a family who are running a supported living service for their son, who

moved out of residental care with a very, very good financial package, and it's

pretty well a full time job for both of them - and they're both now well into

'retirement'. Staff recruitment and retention is one of the really big problems,

especially as there is a cap on the hourly rate you can pay.

We considered it - and backed off.

Patience

> >> >

> >> > Surely this is not right!!!

> >> >

> >> > I am trying to look to the future and pre empt any problems in the

> >> > future regarding decisions about my son's welfare when he is

> >> deemed to

> >> > be an adult....ie having a say in where he lives, what

> >> medications he is

> >> > put on, etc etc.

> >> >

> >> > Mandi posted this very useful document :

> >> >

> >> >

> >>

http://www.challengingbehaviour.org.uk/learning-disability-files/18_Getting-lega\

l-Authority-to-make-decisions-about-money.pdf

> >> >

> >> > Which seems to be saying that deputyship (a say in his welfare)

> >> should

> >> > be applied for if he will be living at home. So I have been in

> >> touch

> >> > with my local MENCAP and been given the name of a solicitor to

> >> use but

> >> > also the name of an independant solicitor to talk to (Bequest -- a

> >> > panel of independent Lawyers who specialise in Private Client law,

> >> > including disabled persons trust, power of attorney. would be

> >> happy to

> >> > speak with you and pass on some information that will save you

> >> time and

> >> > steer you in the right direction. )

> >> >

> >> > I have just phoned the independent solicitor and she said don't

> >> bother

> >> > ....judges are not giving out deputyships as social services

> >> and doctors

> >> > etc are more likely to have the young adult's interest at heart

> >> than the

> >> > parents!!!

> >> >

> >> > Has anyone got anywhere with this or know where else I can get

> >> advise, I

> >> > have been left rather confused!

> >> >

> >> > She said all you can do is make sure things are in place for

> >> him ....what!?!

> >> >

> >> > I am already having problems with such simple straight forward

> >> stuff

> >> > like getting his doctors notes to reflect something that might be

> >> > helpful when we are not around. His current notes only say he has

> >> > 'verbal apraxia'!!!!!!! and does not mention his severe life

> >> threatening

> >> > reactions to some epilepsy medications!!!!! The GP has said he

> >> will put

> >> > 2 of the medications on the list but not the 3rd!? and will not

> >> list all

> >> > of his difficulties and can we go in to the surgery to discuss

> >> them?!?

> >> >

> >> >

> >> > Really fed up with everything.

> >> >

> >> >

> >> >

> >>

> >> No virus found in this message.

> >> Checked by AVG - www.avg.com <http://www.avg.com/>

> >> Version: 2012.0.2171 / Virus Database: 2425/4988 - Release Date:

> >> 05/09/12

> >>

> >

> >

> >

> > No virus found in this message.

> > Checked by AVG - www.avg.com <http://www.avg.com>

> > Version: 2012.0.2171 / Virus Database: 2425/4988 - Release Date: 05/09/12

> >

>

[Guest guest]

Hi ,

Could you please tell me where I would enquire about systems that

might be in place in this area?   I thought that the GP's heading

notes would be ideal for this - as when we went to hospital they

were sent with him?

I would be hugely grateful for any more information on this.

x

 

With regard

to the medical side of things it is worth enquiring

whether there are systems in place for adults with

learning disabilities.  A lot of work has been done on

this and you may find your area has something like a

"health passport" which can be used in any contact with

the health service (GP/hospital/community).  The health

passport contains information that you provide re

medication/communication methods/emotional

responses/phobias/things that help me etc etc.

 

-----Original

Message-----

From: and

To: Autism-Biomedical-Europe

<Autism-Biomedical-Europe >

Sent: Fri, 11 May 2012 11:09

Subject: Re: Re: applying to

look after my son's welfare at...

 

Thanks Mandi,

That is exactly what I have done but have just

got a letter back saying he will put some

stuff on but not others!!! When we went to the

hospital a while ago the locum GP printed off

like a summary of for us to take to the

hospital with him that is to help whoever is

dealing with him (presume they all have the

same software). It was a seal envelope but I

opened it. This is the bit I am trying to get

updated with something that is actually

meaningful (like life threatening allergic

reactions..currently blank and a list of

things that would be helpful to anyone

treating him eg phobias, understanding level

etc).

What he has decided to include is all a bit

random as our GP is just a bully and showing

us who is boss. I have come across this so

many times and it is  one of the reason that I

am now panicking that I will have even less

say when he is 18+. Thank goodness he has put

the2 most serious ones on...the internal

bleeding one was actually denied strenuously

at the time in the hospital and it was only

admitted that it was the medication verbally

by his paediatrician  when was 'out of

the woods'. I did not think it had been

officially noted. It is important that they

mention all reactions (obviously) mostly so

that it can be clearly seen that he has had a

bad reaction to all medications and so to be

very wary in the future.

We are booking a half hour appointment to

'discuss it'.

I have also requested his GP medical records

as I was hoping to get this done before he is

18, got a letter back saying he is over 16 and

therefore I need his written permission....it

has started already! I have sent the form back

anyway 'for their consideration', so will see

what they do.

I wonder how straight forward it would be to

set up a very small residential home myself? I

know there is one in the local town that looks

after 3 adults....

x.

On 10/05/2012 13:30, Mum231ASD@...

wrote:

 

lINDA COULD YOU WRITE A

LETTER TO gp WITH THE DETAISLL YOU

WANT PUT IN AND HAVE IN RED ON IT THAT

THIS MUST BE FILED WITH YORU SONS

MEDCIAL RECORDS FOR EVER MORE?

 

MX

 

In a message dated 10/05/2012

11:32:13 GMT Daylight Time, peteandlindajohnson@...

writes:

 

,

What a complete nightmare! It

will be worse in the UK as

doctors are less independent.

I have a fight on my hands

just getting my son's bad

reactions to medication and a

list of his symptoms written

up on his GP notes. I thought

that would be a good starting

place as they should go

everywhere with him. What

difference is it to his GP to

write something meaningful

....doctors generally just seem

to want to throw their weight

around and show whose boss

just for the sake of it and

that seems to be the attitude

of most 'care professionals'

(ha!) that I have come across.

I am going to have to have a

serious rethink about a lot of

things if I can't get

deputyship of his welfare.

What is the point of it being

something you can apply for if

it is always refused by the

judges!!

Sounds to me like your

daughter is a very lucky lady

to have you fighting her

corner.

On 09/05/2012 18:51, mbrookh

wrote:

 

,

It should NOT be right!!!

But......

This is from USA; After

going through the last

6mos trying to get my

daughter[27y] into what

seemed like a good

residential setting, what

you describe seems to be

the attitude; anyone but

parent knows what is best!

- much like the school

setting! I had 2 social

workers saying the

meds/supplements had to be

trimmed to 12 items/day,

that epsom salt baths

would not be done, that

topicals and anything not

in pill form would not be

given etc. They even said

that any specialist out of

our geographical area

would not be acceptable.

Thanks heavens for a

doc[out of area]with lots

of credentials who was

fully supportive of

comprehensive medical plan

and who 'could not in good

conscience remove any of

the prescibed items.' My

daughter learned long ago

to give her MB12

injections and topicals

because her father will

not when she's w him. She

also had to learn the 2

liquids she uses. All else

was available in

pill/capsule form. There

is NO leeway for varying

things - constipation,

meltdowns,

hyperventilation, seizures

can not be addressed as

happen. Currently, I am

allowed to package

supplements for daily use.

I need to renew

pharmaceuticals that the

overseeing pharmacy can

not get from their

supplier if I want her to

stay on the precise med

i.e there is only one

thyroid item she can take

due to allergies so that

comes from another

pharmacy same w MB12 and a

couple of others.

Things went down to the

ridiculous and minute

level as we were trying to

work this out w

accusations flying left

and right. I hired an

attorney who was a great

help - don't have the bill

for that yet. Toss in a

dad who bad mouths all the

supps and most of the

pharmas and refuses to pay

for anything and it is

most difficult.

We have the verbage of

'client rights' here which

applies to anyone older

than 18y. If they[client]

refuse, then that is a

choice they can make

irrespective of the

consequences. Diet

guidelines -gfcfsf and all

allergy free were called

into question - several

items provoke delayed

seizures! Thank heavens my

daughter is tuned into

most of this. She has 18y

olds making life

threatening decisions for

her re food and can

'chose' herself to vary

her program. No one seems

to get the picture that

our children are in a

sheltered setting for life

because they are unable to

make good decisions for

themselves due to the

injuries and toxicities

that have overwhelmed

them.

Make a detailed list of

EVERYTHING you deem

important for your child

diet, exercise[what, how

many times or

hours/day/week],

social[what, when, how

many

times/day/week/month],

work[same], what to do in

free time[family, friends,

library, volunteering,

programs liked[a horse

program here etc which my

daughter loves],

developmental areas you

want addressed,

limitations[video, tv,

etc] vacation - our system

limits time to a certain

number of days/year 'out

of care' - based mainly on

reimbursement for the

supervising agency. Get it

in writing!! and keep

copies of everything at

each stage. Keep important

parties in the loop - one

social worker totally

misrepresented our doc's

position and did it in a

email to the 'team' w/o

copy to the doc. Doc was

not a happy camper! Don't

delete even what seems

like trivia. It does no

good here to 'hope' it

will get done or to not

address it. I initially

felt like I was walking on

eggshells but then

realized that my daughter

needed the same advocacy

[more really] that has

been the pattern through

her life. I'd rather be

known[and you bet I am] as

a difficult mom than have

her suffer in the setting

because 'they didn't know

or couldn't do it' You get

some of the same responses

that the regular docs give

when you bring up things

like methylation,

chelation, immune

dysfunction, dysbiosis,

etc because you're

treading on hallowed

ground[the social system

vs the medical system].

The arm of the state is as

strong and as wide as the

traditional medical path

and has no trouble using

its might. In the long

term they need to

hear/honor all that our

children need to live

daily life as successfully

as they can. Right now the

older children are just

trickeling into the

system. Soon it will be an

onslaught. Sorry this got

so long,

>

> Surely this is not

right!!!

>

> I am trying to look

to the future and pre empt

any problems in the

> future regarding

decisions about my son's

welfare when he is deemed

to

> be an adult....ie

having a say in where he

lives, what medications he

is

> put on, etc etc.

>

> Mandi posted this

very useful document :

>

> http://www.challengingbehaviour.org.uk/learning-disability-files/18_Getting-legal-Authority-to-make-decisions-about-money.pdf

>

> Which seems to be

saying that deputyship (a

say in his welfare) should

> be applied for if he

will be living at home. So

I have been in touch

> with my local MENCAP

and been given the name of

a solicitor to use but

> also the name of an

independant solicitor to

talk to (Bequest -- a

> panel of independent

Lawyers who specialise in

Private Client law,

> including disabled

persons trust, power of

attorney. would be happy

to

> speak with you and

pass on some information

that will save you time

and

> steer you in the

right direction. )

>

> I have just phoned

the independent solicitor

and she said don't bother

> ....judges are not

giving out deputyships as

social services and

doctors

> etc are more likely

to have the young adult's

interest at heart than the

> parents!!!

>

> Has anyone got

anywhere with this or know

where else I can get

advise, I

> have been left rather

confused!

>

> She said all you can

do is make sure things are

in place for him

.....what!?!

>

> I am already having

problems with such simple

straight forward stuff

> like getting his

doctors notes to reflect

something that might be

> helpful when we are

not around. His current

notes only say he has

> 'verbal

apraxia'!!!!!!! and does

not mention his severe

life threatening

> reactions to some

epilepsy medications!!!!!

The GP has said he will

put

> 2 of the medications

on the list but not the

3rd!? and will not list

all

> of his difficulties

and can we go in to the

surgery to discuss them?!?

>

>

> Really fed up with

everything.

>

>

>

No virus

found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus

Database: 2425/4988 -

Release Date: 05/09/12

No virus

found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus Database:

2425/4988 - Release Date: 05/09/12

No virus

found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus Database: 2425/4990 - Release Date:

05/10/12

[Guest guest]

Suggest you look at the websites for your local authority and your nhs. find references to learning disabilities - may be separate organisations under nhs and council or maybe a joint organisation. Learning disabilities tend to cover autistic adults (unless they are hfa/high functioning). If you can't see a relevant section or information send me the relevant links and I'll suggest where in the system you may want to contact.

Re: Re: applying to

look after my son's welfare at...

Thanks Mandi,

That is exactly what I have done but have just

got a letter back saying he will put some

stuff on but not others!!! When we went to the

hospital a while ago the locum GP printed off

like a summary of for us to take to the

hospital with him that is to help whoever is

dealing with him (presume they all have the

same software). It was a seal envelope but I

opened it. This is the bit I am trying to get

updated with something that is actually

meaningful (like life threatening allergic

reactions..currently blank and a list of

things that would be helpful to anyone

treating him eg phobias, understanding level

etc).

What he has decided to include is all a bit

random as our GP is just a bully and showing

us who is boss. I have come across this so

many times and it is one of the reason that I

am now panicking that I will have even less

say when he is 18+. Thank goodness he has put

the2 most serious ones on...the internal

bleeding one was actually denied strenuously

at the time in the hospital and it was only

admitted that it was the medication verbally

by his paediatrician when was 'out of

the woods'. I did not think it had been

officially noted. It is important that they

mention all reactions (obviously) mostly so

that it can be clearly seen that he has had a

bad reaction to all medications and so to be

very wary in the future.

We are booking a half hour appointment to

'discuss it'.

I have also requested his GP medical records

as I was hoping to get this done before he is

18, got a letter back saying he is over 16 and

therefore I need his written permission....it

has started already! I have sent the form back

anyway 'for their consideration', so will see

what they do.

I wonder how straight forward it would be to

set up a very small residential home myself? I

know there is one in the local town that looks

after 3 adults....

x.

On 10/05/2012 13:30, Mum231ASD@...

wrote:

lINDA COULD YOU WRITE A

LETTER TO gp WITH THE DETAISLL YOU

WANT PUT IN AND HAVE IN RED ON IT THAT

THIS MUST BE FILED WITH YORU SONS

MEDCIAL RECORDS FOR EVER MORE?

MX

In a message dated 10/05/2012

11:32:13 GMT Daylight Time, peteandlindajohnson@...

writes:

,

What a complete nightmare! It

will be worse in the UK as

doctors are less independent.

I have a fight on my hands

just getting my son's bad

reactions to medication and a

list of his symptoms written

up on his GP notes. I thought

that would be a good starting

place as they should go

everywhere with him. What

difference is it to his GP to

write something meaningful

....doctors generally just seem

to want to throw their weight

around and show whose boss

just for the sake of it and

that seems to be the attitude

of most 'care professionals'

(ha!) that I have come across.

I am going to have to have a

serious rethink about a lot of

things if I can't get

deputyship of his welfare.

What is the point of it being

something you can apply for if

it is always refused by the

judges!!

Sounds to me like your

daughter is a very lucky lady

to have you fighting her

corner.

On 09/05/2012 18:51, mbrookh

wrote:

,

It should NOT be right!!!

But......

This is from USA; After

going through the last

6mos trying to get my

daughter[27y] into what

seemed like a good

residential setting, what

you describe seems to be

the attitude; anyone but

parent knows what is best!

- much like the school

setting! I had 2 social

workers saying the

meds/supplements had to be

trimmed to 12 items/day,

that epsom salt baths

would not be done, that

topicals and anything not

in pill form would not be

given etc. They even said

that any specialist out of

our geographical area

would not be acceptable.

Thanks heavens for a

doc[out of area]with lots

of credentials who was

fully supportive of

comprehensive medical plan

and who 'could not in good

conscience remove any of

the prescibed items.' My

daughter learned long ago

to give her MB12

injections and topicals

because her father will

not when she's w him. She

also had to learn the 2

liquids she uses. All else

was available in

pill/capsule form. There

is NO leeway for varying

things - constipation,

meltdowns,

hyperventilation, seizures

can not be addressed as

happen. Currently, I am

allowed to package

supplements for daily use.

I need to renew

pharmaceuticals that the

overseeing pharmacy can

not get from their

supplier if I want her to

stay on the precise med

i.e there is only one

thyroid item she can take

due to allergies so that

comes from another

pharmacy same w MB12 and a

couple of others.

Things went down to the

ridiculous and minute

level as we were trying to

work this out w

accusations flying left

and right. I hired an

attorney who was a great

help - don't have the bill

for that yet. Toss in a

dad who bad mouths all the

supps and most of the

pharmas and refuses to pay

for anything and it is

most difficult.

We have the verbage of

'client rights' here which

applies to anyone older

than 18y. If they[client]

refuse, then that is a

choice they can make

irrespective of the

consequences. Diet

guidelines -gfcfsf and all

allergy free were called

into question - several

items provoke delayed

seizures! Thank heavens my

daughter is tuned into

most of this. She has 18y

olds making life

threatening decisions for

her re food and can

'chose' herself to vary

her program. No one seems

to get the picture that

our children are in a

sheltered setting for life

because they are unable to

make good decisions for

themselves due to the

injuries and toxicities

that have overwhelmed

them.

Make a detailed list of

EVERYTHING you deem

important for your child

diet, exercise[what, how

many times or

hours/day/week],

social[what, when, how

many

times/day/week/month],

work[same], what to do in

free time[family, friends,

library, volunteering,

programs liked[a horse

program here etc which my

daughter loves],

developmental areas you

want addressed,

limitations[video, tv,

etc] vacation - our system

limits time to a certain

number of days/year 'out

of care' - based mainly on

reimbursement for the

supervising agency. Get it

in writing!! and keep

copies of everything at

each stage. Keep important

parties in the loop - one

social worker totally

misrepresented our doc's

position and did it in a

email to the 'team' w/o

copy to the doc. Doc was

not a happy camper! Don't

delete even what seems

like trivia. It does no

good here to 'hope' it

will get done or to not

address it. I initially

felt like I was walking on

eggshells but then

realized that my daughter

needed the same advocacy

[more really] that has

been the pattern through

her life. I'd rather be

known[and you bet I am] as

a difficult mom than have

her suffer in the setting

because 'they didn't know

or couldn't do it' You get

some of the same responses

that the regular docs give

when you bring up things

like methylation,

chelation, immune

dysfunction, dysbiosis,

etc because you're

treading on hallowed

ground[the social system

vs the medical system].

The arm of the state is as

strong and as wide as the

traditional medical path

and has no trouble using

its might. In the long

term they need to

hear/honor all that our

children need to live

daily life as successfully

as they can. Right now the

older children are just

trickeling into the

system. Soon it will be an

onslaught. Sorry this got

so long,

>

> Surely this is not

right!!!

>

> I am trying to look

to the future and pre empt

any problems in the

> future regarding

decisions about my son's

welfare when he is deemed

to

> be an adult....ie

having a say in where he

lives, what medications he

is

> put on, etc etc.

>

> Mandi posted this

very useful document :

>

> http://www.challengingbehaviour.org.uk/learning-disability-files/18_Getting-legal-Authority-to-make-decisions-about-money.pdf

>

> Which seems to be

saying that deputyship (a

say in his welfare) should

> be applied for if he

will be living at home. So

I have been in touch

> with my local MENCAP

and been given the name of

a solicitor to use but

> also the name of an

independant solicitor to

talk to (Bequest -- a

> panel of independent

Lawyers who specialise in

Private Client law,

> including disabled

persons trust, power of

attorney. would be happy

to

> speak with you and

pass on some information

that will save you time

and

> steer you in the

right direction. )

>

> I have just phoned

the independent solicitor

and she said don't bother

> ....judges are not

giving out deputyships as

social services and

doctors

> etc are more likely

to have the young adult's

interest at heart than the

> parents!!!

>

> Has anyone got

anywhere with this or know

where else I can get

advise, I

> have been left rather

confused!

>

> She said all you can

do is make sure things are

in place for him

.....what!?!

>

> I am already having

problems with such simple

straight forward stuff

> like getting his

doctors notes to reflect

something that might be

> helpful when we are

not around. His current

notes only say he has

> 'verbal

apraxia'!!!!!!! and does

not mention his severe

life threatening

> reactions to some

epilepsy medications!!!!!

The GP has said he will

put

> 2 of the medications

on the list but not the

3rd!? and will not list

all

> of his difficulties

and can we go in to the

surgery to discuss them?!?

>

>

> Really fed up with

everything.

>

>

>

No virus

found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus

Database: 2425/4988 -

Release Date: 05/09/12

No virus

found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus Database:

2425/4988 - Release Date: 05/09/12

No virus

found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus Database: 2425/4990 - Release Date:

05/10/12

[Guest guest]

Hi

This is a link to the health passport in Milton keynes - just so you know what you are looking for

http://www.milton-keynes.gov.uk/learningdisability/displayarticle.asp?id=32206

Re: Re: applying to

look after my son's welfare at...

Thanks Mandi,

That is exactly what I have done but have just

got a letter back saying he will put some

stuff on but not others!!! When we went to the

hospital a while ago the locum GP printed off

like a summary of for us to take to the

hospital with him that is to help whoever is

dealing with him (presume they all have the

same software). It was a seal envelope but I

opened it. This is the bit I am trying to get

updated with something that is actually

meaningful (like life threatening allergic

reactions..currently blank and a list of

things that would be helpful to anyone

treating him eg phobias, understanding level

etc).

What he has decided to include is all a bit

random as our GP is just a bully and showing

us who is boss. I have come across this so

many times and it is one of the reason that I

am now panicking that I will have even less

say when he is 18+. Thank goodness he has put

the2 most serious ones on...the internal

bleeding one was actually denied strenuously

at the time in the hospital and it was only

admitted that it was the medication verbally

by his paediatrician when was 'out of

the woods'. I did not think it had been

officially noted. It is important that they

mention all reactions (obviously) mostly so

that it can be clearly seen that he has had a

bad reaction to all medications and so to be

very wary in the future.

We are booking a half hour appointment to

'discuss it'.

I have also requested his GP medical records

as I was hoping to get this done before he is

18, got a letter back saying he is over 16 and

therefore I need his written permission....it

has started already! I have sent the form back

anyway 'for their consideration', so will see

what they do.

I wonder how straight forward it would be to

set up a very small residential home myself? I

know there is one in the local town that looks

after 3 adults....

x.

On 10/05/2012 13:30, Mum231ASD@...

wrote:

lINDA COULD YOU WRITE A

LETTER TO gp WITH THE DETAISLL YOU

WANT PUT IN AND HAVE IN RED ON IT THAT

THIS MUST BE FILED WITH YORU SONS

MEDCIAL RECORDS FOR EVER MORE?

MX

In a message dated 10/05/2012

11:32:13 GMT Daylight Time, peteandlindajohnson@...

writes:

,

What a complete nightmare! It

will be worse in the UK as

doctors are less independent.

I have a fight on my hands

just getting my son's bad

reactions to medication and a

list of his symptoms written

up on his GP notes. I thought

that would be a good starting

place as they should go

everywhere with him. What

difference is it to his GP to

write something meaningful

....doctors generally just seem

to want to throw their weight

around and show whose boss

just for the sake of it and

that seems to be the attitude

of most 'care professionals'

(ha!) that I have come across.

I am going to have to have a

serious rethink about a lot of

things if I can't get

deputyship of his welfare.

What is the point of it being

something you can apply for if

it is always refused by the

judges!!

Sounds to me like your

daughter is a very lucky lady

to have you fighting her

corner.

On 09/05/2012 18:51, mbrookh

wrote:

,

It should NOT be right!!!

But......

This is from USA; After

going through the last

6mos trying to get my

daughter[27y] into what

seemed like a good

residential setting, what

you describe seems to be

the attitude; anyone but

parent knows what is best!

- much like the school

setting! I had 2 social

workers saying the

meds/supplements had to be

trimmed to 12 items/day,

that epsom salt baths

would not be done, that

topicals and anything not

in pill form would not be

given etc. They even said

that any specialist out of

our geographical area

would not be acceptable.

Thanks heavens for a

doc[out of area]with lots

of credentials who was

fully supportive of

comprehensive medical plan

and who 'could not in good

conscience remove any of

the prescibed items.' My

daughter learned long ago

to give her MB12

injections and topicals

because her father will

not when she's w him. She

also had to learn the 2

liquids she uses. All else

was available in

pill/capsule form. There

is NO leeway for varying

things - constipation,

meltdowns,

hyperventilation, seizures

can not be addressed as

happen. Currently, I am

allowed to package

supplements for daily use.

I need to renew

pharmaceuticals that the

overseeing pharmacy can

not get from their

supplier if I want her to

stay on the precise med

i.e there is only one

thyroid item she can take

due to allergies so that

comes from another

pharmacy same w MB12 and a

couple of others.

Things went down to the

ridiculous and minute

level as we were trying to

work this out w

accusations flying left

and right. I hired an

attorney who was a great

help - don't have the bill

for that yet. Toss in a

dad who bad mouths all the

supps and most of the

pharmas and refuses to pay

for anything and it is

most difficult.

We have the verbage of

'client rights' here which

applies to anyone older

than 18y. If they[client]

refuse, then that is a

choice they can make

irrespective of the

consequences. Diet

guidelines -gfcfsf and all

allergy free were called

into question - several

items provoke delayed

seizures! Thank heavens my

daughter is tuned into

most of this. She has 18y

olds making life

threatening decisions for

her re food and can

'chose' herself to vary

her program. No one seems

to get the picture that

our children are in a

sheltered setting for life

because they are unable to

make good decisions for

themselves due to the

injuries and toxicities

that have overwhelmed

them.

Make a detailed list of

EVERYTHING you deem

important for your child

diet, exercise[what, how

many times or

hours/day/week],

social[what, when, how

many

times/day/week/month],

work[same], what to do in

free time[family, friends,

library, volunteering,

programs liked[a horse

program here etc which my

daughter loves],

developmental areas you

want addressed,

limitations[video, tv,

etc] vacation - our system

limits time to a certain

number of days/year 'out

of care' - based mainly on

reimbursement for the

supervising agency. Get it

in writing!! and keep

copies of everything at

each stage. Keep important

parties in the loop - one

social worker totally

misrepresented our doc's

position and did it in a

email to the 'team' w/o

copy to the doc. Doc was

not a happy camper! Don't

delete even what seems

like trivia. It does no

good here to 'hope' it

will get done or to not

address it. I initially

felt like I was walking on

eggshells but then

realized that my daughter

needed the same advocacy

[more really] that has

been the pattern through

her life. I'd rather be

known[and you bet I am] as

a difficult mom than have

her suffer in the setting

because 'they didn't know

or couldn't do it' You get

some of the same responses

that the regular docs give

when you bring up things

like methylation,

chelation, immune

dysfunction, dysbiosis,

etc because you're

treading on hallowed

ground[the social system

vs the medical system].

The arm of the state is as

strong and as wide as the

traditional medical path

and has no trouble using

its might. In the long

term they need to

hear/honor all that our

children need to live

daily life as successfully

as they can. Right now the

older children are just

trickeling into the

system. Soon it will be an

onslaught. Sorry this got

so long,

>

> Surely this is not

right!!!

>

> I am trying to look

to the future and pre empt

any problems in the

> future regarding

decisions about my son's

welfare when he is deemed

to

> be an adult....ie

having a say in where he

lives, what medications he

is

> put on, etc etc.

>

> Mandi posted this

very useful document :

>

> http://www.challengingbehaviour.org.uk/learning-disability-files/18_Getting-legal-Authority-to-make-decisions-about-money.pdf

>

> Which seems to be

saying that deputyship (a

say in his welfare) should

> be applied for if he

will be living at home. So

I have been in touch

> with my local MENCAP

and been given the name of

a solicitor to use but

> also the name of an

independant solicitor to

talk to (Bequest -- a

> panel of independent

Lawyers who specialise in

Private Client law,

> including disabled

persons trust, power of

attorney. would be happy

to

> speak with you and

pass on some information

that will save you time

and

> steer you in the

right direction. )

>

> I have just phoned

the independent solicitor

and she said don't bother

> ....judges are not

giving out deputyships as

social services and

doctors

> etc are more likely

to have the young adult's

interest at heart than the

> parents!!!

>

> Has anyone got

anywhere with this or know

where else I can get

advise, I

> have been left rather

confused!

>

> She said all you can

do is make sure things are

in place for him

.....what!?!

>

> I am already having

problems with such simple

straight forward stuff

> like getting his

doctors notes to reflect

something that might be

> helpful when we are

not around. His current

notes only say he has

> 'verbal

apraxia'!!!!!!! and does

not mention his severe

life threatening

> reactions to some

epilepsy medications!!!!!

The GP has said he will

put

> 2 of the medications

on the list but not the

3rd!? and will not list

all

> of his difficulties

and can we go in to the

surgery to discuss them?!?

>

>

> Really fed up with

everything.

>

>

>

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05/10/12