applying to look after my son's welfare at 18

May 9, 2012

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.

May 9, 2012

try the lawyers Pannone and Pannone in Manchester they have a specialist person who will advise, and they give you half an hour free..

we thought about debutship, but have not gone that route yet. I also did hear that if you wanted to go that route you can only get it for welfare rights etc.. but as I and most families will have is appointeeship, we thought we would not bother. Difficult to predict.... but you are so right to get advice before they become adults... it is another story with our "kids" who are now adults... especially when you are working with social services and the mental capacity bill... have you had any training on that. Maybe see if the local NAS ! ha or Mencap have any on offer.

x

applying to look after my son's welfare at 18

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.

May 9, 2012

,

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-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.

>

May 9, 2012

Far behind you but you got me thinking and thank you so very much for that, you

sound like you are living through hell, I pray you come through it

Eileen

> >

> > 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.

> >

>

May 9, 2012

Thanks, Eileen,

Much of the angst is behind me now. Just a matter of keeping an vigilant eye on

things and offering many prayers for her future.

> > >

> > > 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.

> > >

> >

>

May 10, 2012

Hi ,

Many thanks for the reply....it appears it is the welfare bit (the

most important bit) that you CAN'T get! So there is little point in

applying. Is the appointeeship the thing that happens at 16 ? We

had a chap visit to check was not capable of looking after

his DLA finances ..is that it?

x

try the lawyers Pannone and Pannone

in Manchester they have a specialist person who will

advise, and they give you half an hour free..

we thought about debutship, but have

not gone that route yet. I also did hear that if you

wanted to go that route you can only get it for welfare

rights etc.. but as I and most families will have is

appointeeship, we thought we would not bother.

Difficult to predict.... but you are so right to get

advice before they become adults... it is another story

with our "kids" who are now adults... especially when

you are working with social services and the mental

capacity bill... have you had any training on that.

Maybe see if the local NAS ! ha or Mencap have any on

offer.

x

applying to look after my

son's welfare at 18

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: 2425/4987 - Release Date:

05/09/12

May 10, 2012

I would try another solicitor, one with a positive attitude

Mx

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!!!

May 10, 2012

,

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.

,

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

May 10, 2012

Hi,

I go along with everything says. IME caring for our children in adulthood

makes the childhood difficulties with schools etc seem a doddle.

One of the most useful things appears to be to have a high-ranking NHS medical

professional behind you to support all or part of your child's needs eg

gastroenterologist to support gut issues, as the hierarchical structure of the

NHS and social services means that a specialist's advice will most probably

always be followed. Ds's supportive paediatrician wrote a very useful summary

for his adult psychiatrist, which has been referred to more than once when

dietary questions have arisen, for example. I hadn't realised how much impact

professional stuff from childhood has on later life, when parent's medical

knowledge, in particular, counts for very little.

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.

> > > >

> > >

> >

>

May 10, 2012

This is worrying to me because Henry basically doesn't have a paediatrician and

he is high need and complex. He has a neurologist but he isn't really concerned

with health and developmental issues only with management of seizures. Henry

hasn't seen a gastroenterologist for about 3 years.

However, we do now have a first appointment at the Maudsley's learning

disability service and I shoudl be very grateful for any advice form listmates

about whar to try and get out of it. I am hoping they will do a comprehensive

assessment and, as well as drawing up and monitoring a plan re mental health

and behaviour, will keep him on their books until adulthood.

Maybe the first thing to establish will be where he lies on the IQ scale. We

know his autism is severe.

Margaret

> > > > >

> > > > > 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.

> > > > >

> > > >

> > >

> >

>

May 10, 2012

Hi ,

You can get the forms for both types of deputyship - health and welfare and

financial - direct from the Court of Protection. I think you may be able to

download them directly. There is explanation and you can fill most of it in

yourself, though there are parts where you need professional statements. (We've

got the forms but not filled them in).

If the judges are not awarding parents deputyships now that is a change of

policy - and maybe we should be drawing attention to it through organisations

like MENCAP and NAS. Parents were usually granted deputyships in the past.

Keep going and keep smiling - none of it is easy, unless you give up, which is

just what the bureaucrats want, I think!

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.

>

May 10, 2012

Margaret how long did you wait for Maudsley appt?

As for Paed, we have had support from paed but she does say "Whilst under paediatric care" in all her letters, not very comfortable with that, seems unecessary to me. Maybe it would all change anyway?

Vicky

Re: applying to look after my son's welfare at 18

This is worrying to me because Henry basically doesn't have a paediatrician and he is high need and complex. He has a neurologist but he isn't really concerned with health and developmental issues only with management of seizures. Henry hasn't seen a gastroenterologist for about 3 years.

However, we do now have a first appointment at the Maudsley's learning disability service and I shoudl be very grateful for any advice form listmates about whar to try and get out of it. I am hoping they will do a comprehensive assessment and, as well as drawing up and monitoring a plan re mental health and behaviour, will keep him on their books until adulthood.

Maybe the first thing to establish will be where he lies on the IQ scale. We know his autism is severe.

Margaret

> > > > >

> > > > > 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.

> > > > >

> > > >

> > >

> >

>

May 10, 2012

About 10 weeks from the receipt by the Maudsley of the referral letter

confirming the funding by the PCT.

Margaret

> > > > > >

> > > > > > 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.

> > > > > >

> > > > >

> > > >

> > >

> >

>

May 11, 2012

Thanks Patience,

I will down load the forms and also phone a few solicitors to

confirm how unlikely it is to get the welfare bit. The solicitor I

spoke to was an 'independent' solicitor which my local mencap

directed me to and said talk to her before taking it further as she

may save you some time and point you in the right direction..they

also gave me the name of different solicitor to use if I was going

to pursue it.....sounds to me like mencap knows it is not something

that is granted any more and they are trying to save me money etc by

warning me not to pursue it..,,

I have been thinking about this and think it is actually corrupt...

if there is a legal process whereby you can get deputyship for

welfare then who is directing judges to not grant it ? and surely

this is a change in the law effectively without an official change

in the law? What do you think? Is this worth pursuing with my MP?

x

Hi ,

You can get the forms for both types of deputyship -

health and welfare and financial - direct from the Court

of Protection. I think you may be able to download them

directly. There is explanation and you can fill most of it

in yourself, though there are parts where you need

professional statements. (We've got the forms but not

filled them in).

If the judges are not awarding parents deputyships now

that is a change of policy - and maybe we should be

drawing attention to it through organisations like MENCAP

and NAS. Parents were usually granted deputyships in the

past.

Keep going and keep smiling - none of it is easy, unless

you give up, which is just what the bureaucrats want, I

think!

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-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

May 11, 2012

The sort of scenario I'm thinking of is - child X is gf/cf, takes enzymes and

epsom salts baths, He turns 18 and as an adult can choose to continue with these

or not for himself depending upon his mental capacity to make each individual

decision. Along comes social worker, asks questions about diet and treatments,

questions whether he can decide, calls in a dietitian (who is probably not

knowledgable on the subject!) who follows orthodoxy that diet and other

treatments don't help in autism, then the GP and probably the adult psychiatrist

are also called in ........ because, perhaps the parents are deluded and not

acting in X's best interest. This is where outside evidence, eg from a speialist

gastro, is so very, very useful to present to a 'best interests' meeting and, in

fact, that sort of evidence is likely to be accepted long before a 'best

interests' meeting is called, IME.

Does that make sense?

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.

> > > > > >

> > > > >

> > > >

> > >

> >

>

May 11, 2012

'Out of sight, out of mind!' If you don't go there, they won't be able to help.I have had amazingly good support from my local M.P. To: Autism-Biomedical-Europe Sent: Friday, 11 May 2012, 11:17 Subject: Re: Re: