Re: UK benefits

[Guest guest]

Its going really well. We get funding from our LEA which means we can afford

to pay our main volunteer (who is amazing and works 15 hours a week) and

afford to pay for some courses and consultations etc. Other volunteers do

4-6 hours a week. Run it 50 hours a week - 7 days.

We have been running it for a year and we have a totally different little

boy. He was a pale, sullen little boy - almost non-verbal, no eye contact,

wouldn't notice if someone walked in the room, not at all interested in

people - we now have a very happy little boy (aged 4 1/2), speaks in small

sentances, great eye contact, loves his volunteers and show great interest

in people, loves playing with his sister (only in last 4 month), comforted

recently when she was crying. Got into drawing 2 months ago - and loves to

draw - especially bathrooms and toilet - I think he has a talent

Bio-medics going so slow.... Luke reacts big time to all supps - so I have

started from scratch again - and have nearly got to full dose of pro-biotics

and plan to start enzymes next (have Dr H as consultant).

Had good results from homeopathy... I think!!

Best wishes

Nic

Re: UK benefits

Thank you Nicola that's really helpful. We used to run Son Rise with

Tom! how's it going with Luke? Tom loved it and we had a big troupe

of volunteers (14) in 2003, then in 2004 we could only recruit 3 and

then they all left. They were terrific baby sitters because he

thought it was a social visit for him and couldn't get us out the

door fast enough. But you're right, somewhere to look again. Most of

ours were psychology or PE students.

> >

> > In a message dated 20/02/2006 00:44:40 GMT Standard Time,

> > sassremtom@ writes:

> >

> > Can anybody help me? We were refused DLA a while back because

the

> form

> > really annoyed me and I filled it in as quickly as I could,

> thinking

> > that the diagnosis would get us the money. I am about to re-

apply

> >

> > >>>Brace yourself - this is a seriously depressing form but you

> have to do

> > this - a potenial £400 per month buys lots of therapy and

> > supplements......................

> >

> > You have to spend an evening being as NEGATIVE about your child

> as possible.

> > Think of his worst day, his worst night and his worst week.

Relive

> it all,

> > have a cry, finish the form and get it in the post!!

> >

> >

> > but

> > I have just heard that people running ABA courses are entitled to

> > something called direct payments from the local authority.

however

> you

> > are not entitled to both and direct payments may also stop you

> > receiving other benefits. anyone know about this?

> >

> > >>>Incorrect. Direct Payemtns has nothing at all to do with DLA.

> DLA is your

> > sons benefit.

> >

> > If you earn less than about £80 per week, you can claim ICA for

> yourself if

> > you get muiddle or higher rate on the DLA. Both benefits come

from

> central

> > governement

> >

> > Direct Payments come from Social Services as a cheap form of

> RESPITE. YOu

> > need to ask for and go through a 'Carers Assessment' to see if

> somebody who

> > knows nothing decides if you qualify. If you have other children,

> tell them you

> > need protected time with your chidls sibling/s as the affected

> child takes

> > more of your time. Say you and partner need to get out and relax

> without

> > worrying for the sake of your relationship, crying often helps

> too - what was that -

> > did someone call me cycnical (this is therapy hours we are

> talking here!!)

> >

> > In Dorset surprizing, the assessed award is always the same

except

> for

> > perhaps one or two families who were part of the pilot who get

> more - we get 4

> > hours per week and an extra 4 for school holidays which works out

> out 5 hours

> > per week. We get funded at £7.40 per hour, I don;t knwo whether

> that is national

> > or local decision. We get funded in advance every quarter.

> >

> > What you have to do is fnd people willing to fill in a very long

> Social

> > Services appliaction form, fill in Criminal Records Bureau

check -

> you always

> > refer to them as CARERS when social worker is about (Wink).

> >

> > So if your therapists are happy to fill inthe form, you will

> alreaddy have

> > CRB I am sure, then you can use that for ABA - sorry CARERS!!

> >

> > I use mine for Speech Therapist, I pay double the rate I am

funded

> so I only

> > get half the hours. You are free to pay what you like, you just

> only get

> > funded the set amount.

> >

> > The downside, sigh, you knew there would be one - you have to run

> a payroll

> > to pay the CARERS. You need a separate bank account for them to

> make the

> > payments that is not used for anythign else, deal with PAYE

unless

> your therapist

> > sign as self employed. Its not so hard.

> >

> > The idea is they give you the set amount and you are responsble

> for finding

> > and paying that person. YOu need to have reconciled accounts

which

> sounds

> > scarey but isn't really. They come and reassess you periodically

> at which time

> > you thank then profusely and say what a differene its made to

the

> while family!

> > That should secure funding for the next period

> >

> > Cynical Mandi in Dorset Who waited 12 months for the Carers

> Assessment in

> > the first place and that took a formal complaint. IF Sam had not

> made the

> > gains he has through Biomed then I would need to use it for real

> respite. NIcky

> > the SALT loves to take him out anyways, she is happy to babysit

> too which is

> > awesome

> >

>

>

>

>

>

>

> DISCLAIMER

> No information contained in this post is to be construed as

medical advice.

> If you need medical advice, please seek it from a suitably

qualified

> practitioner.

>

>

[Guest guest]

How old do they have to be so we can claim mobility? Someone mentioned 5 yrs earlier - is this right?

Nicola

Re: Re: UK benefits

We get higher rate DLA and higher rate Mobility, our award is till is 16yrs old, he is profound though.

Vicky

x

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.375 / Virus Database: 267.15.11/264 - Release Date: 17/02/2006

[Guest guest]

Hi Steph,

Sounds like you are having a rough time at the moment. Did you try Virgin for sponsored flights. I have a few friends who get very discounted rates every year. We unfortunately fly during the school holidays because eldest is in high school so tend to miss out. However, if you want contact details for the cheap flights let me know off line.

Hope things improve soon.

Jane

Re: UK benefits

We get middle rate DLA - does anyone get higher rate? We thought you had to be immobile to get it, but we certainly don't get £400 a month.We were promised baby sitting 3 hours a week and a befriender 3 hours a month by Social Services. This was last August - since then they've written three times to say "we haven't forgotten you", increased council tax and cut services. We now can't find a baby sitter who can cope with Tom (or at least not until he's unconscious which is about 10pm, not leaving a whole lot of time for a social life) and haven't been out since ooh about beginning of December, in fact, just before big crash. My lovely brother comes up and takes over but lives three hours away. Any one got any bright ideas about finding a baby sitter who doesn't mind being attacked every now and then? THe last one hasn't returned since Tom pushed her glasses into her face... We're all covered in Tom related bruises (except his brother thank goodness) so perhaps best we don't go out as a family - people would probably think Mark beats me (or I him). PLUS got turned down by Caudwell on Friday and can't get sponsored flights to either Usman or Growing Minds. Someone pass me a violin and make it a biggun.>> In a message dated 20/02/2006 00:44:40 GMT Standard Time, > sassremtom@... writes:> > Can anybody help me? We were refused DLA a while back because the form > really annoyed me and I filled it in as quickly as I could, thinking > that the diagnosis would get us the money. I am about to re-apply> > >>>Brace yourself - this is a seriously depressing form but you have to do > this - a potenial £400 per month buys lots of therapy and > supplements......................> > You have to spend an evening being as NEGATIVE about your child as possible. > Think of his worst day, his worst night and his worst week. Relive it all, > have a cry, finish the form and get it in the post!!> > > but > I have just heard that people running ABA courses are entitled to > something called direct payments from the local authority. however you > are not entitled to both and direct payments may also stop you > receiving other benefits. anyone know about this? > > >>>Incorrect. Direct Payemtns has nothing at all to do with DLA. DLA is your > sons benefit. > > If you earn less than about £80 per week, you can claim ICA for yourself if > you get muiddle or higher rate on the DLA. Both benefits come from central > governement> > Direct Payments come from Social Services as a cheap form of RESPITE. YOu > need to ask for and go through a 'Carers Assessment' to see if somebody who > knows nothing decides if you qualify. If you have other children, tell them you > need protected time with your chidls sibling/s as the affected child takes > more of your time. Say you and partner need to get out and relax without > worrying for the sake of your relationship, crying often helps too - what was that - > did someone call me cycnical (this is therapy hours we are talking here!!)> > In Dorset surprizing, the assessed award is always the same except for > perhaps one or two families who were part of the pilot who get more - we get 4 > hours per week and an extra 4 for school holidays which works out out 5 hours > per week. We get funded at £7.40 per hour, I don;t knwo whether that is national > or local decision. We get funded in advance every quarter.> > What you have to do is fnd people willing to fill in a very long Social > Services appliaction form, fill in Criminal Records Bureau check - you always > refer to them as CARERS when social worker is about (Wink).> > So if your therapists are happy to fill inthe form, you will alreaddy have > CRB I am sure, then you can use that for ABA - sorry CARERS!! > > I use mine for Speech Therapist, I pay double the rate I am funded so I only > get half the hours. You are free to pay what you like, you just only get > funded the set amount.> > The downside, sigh, you knew there would be one - you have to run a payroll > to pay the CARERS. You need a separate bank account for them to make the > payments that is not used for anythign else, deal with PAYE unless your therapist > sign as self employed. Its not so hard. > > The idea is they give you the set amount and you are responsble for finding > and paying that person. YOu need to have reconciled accounts which sounds > scarey but isn't really. They come and reassess you periodically at which time > you thank then profusely and say what a differene its made to the while family! > That should secure funding for the next period > > Cynical Mandi in Dorset Who waited 12 months for the Carers Assessment in > the first place and that took a formal complaint. IF Sam had not made the > gains he has through Biomed then I would need to use it for real respite. NIcky > the SALT loves to take him out anyways, she is happy to babysit too which is > awesome >

[Guest guest]

So there is a precedent. We have to reapply in 2007 for it to be renewed

>>>>Appeal Steph and I would get advice from Welfare Rights - they take all the hassle out of filling out the dam forms. They do it everyday and know how to word these documents. We wasted years accepting their initial decision. It was wrong and they have just admitted it.

Jane

Re: UK benefits

Hi DianeI work full time but Mark is a house husband. Don't think he can get carers allowance - unless someone knows different. We applied via our local council for the badge and spoke about Tom's knack of running off, being difficult to keep under control walking long distances and total lack of road sense. But he definitely only gets middle rate DLA (and nothing for mobility that I can think of, we get about £150 a month in total...) .> >> > In a message dated 20/02/2006 00:44:40 GMT Standard Time, > > sassremtom@ writes:> > > > Can anybody help me? We were refused DLA a while back because the > form > > really annoyed me and I filled it in as quickly as I could, > thinking > > that the diagnosis would get us the money. I am about to re-apply> > > > >>>Brace yourself - this is a seriously depressing form but you > have to do > > this - a potenial £400 per month buys lots of therapy and > > supplements......................> > > > You have to spend an evening being as NEGATIVE about your child > as possible. > > Think of his worst day, his worst night and his worst week. Relive > it all, > > have a cry, finish the form and get it in the post!!> > > > > > but > > I have just heard that people running ABA courses are entitled to > > something called direct payments from the local authority. however > you > > are not entitled to both and direct payments may also stop you > > receiving other benefits. anyone know about this? > > > > >>>Incorrect. Direct Payemtns has nothing at all to do with DLA. > DLA is your > > sons benefit. > > > > If you earn less than about £80 per week, you can claim ICA for > yourself if > > you get muiddle or higher rate on the DLA. Both benefits come from > central > > governement> > > > Direct Payments come from Social Services as a cheap form of > RESPITE. YOu > > need to ask for and go through a 'Carers Assessment' to see if > somebody who > > knows nothing decides if you qualify. If you have other children, > tell them you > > need protected time with your chidls sibling/s as the affected > child takes > > more of your time. Say you and partner need to get out and relax > without > > worrying for the sake of your relationship, crying often helps > too - what was that - > > did someone call me cycnical (this is therapy hours we are > talking here!!)> > > > In Dorset surprizing, the assessed award is always the same except > for > > perhaps one or two families who were part of the pilot who get > more - we get 4 > > hours per week and an extra 4 for school holidays which works out > out 5 hours > > per week. We get funded at £7.40 per hour, I don;t knwo whether > that is national > > or local decision. We get funded in advance every quarter.> > > > What you have to do is fnd people willing to fill in a very long > Social > > Services appliaction form, fill in Criminal Records Bureau check - > you always > > refer to them as CARERS when social worker is about (Wink).> > > > So if your therapists are happy to fill inthe form, you will > alreaddy have > > CRB I am sure, then you can use that for ABA - sorry CARERS!! > > > > I use mine for Speech Therapist, I pay double the rate I am funded > so I only > > get half the hours. You are free to pay what you like, you just > only get > > funded the set amount.> > > > The downside, sigh, you knew there would be one - you have to run > a payroll > > to pay the CARERS. You need a separate bank account for them to > make the > > payments that is not used for anythign else, deal with PAYE unless > your therapist > > sign as self employed. Its not so hard. > > > > The idea is they give you the set amount and you are responsble > for finding > > and paying that person. YOu need to have reconciled accounts which > sounds > > scarey but isn't really. They come and reassess you periodically > at which time > > you thank then profusely and say what a differene its made to the > while family! > > That should secure funding for the next period > > > > Cynical Mandi in Dorset Who waited 12 months for the Carers > Assessment in > > the first place and that took a formal complaint. IF Sam had not > made the > > gains he has through Biomed then I would need to use it for real > respite. NIcky > > the SALT loves to take him out anyways, she is happy to babysit > too which is > > awesome > >> > > > > > > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.> > > > >

[Guest guest]

---diane how old is your child unless hes 5 they re is no chance that

he will get the higher rate.

however if you get the higher care componet and the child has a

diagnosis of autism then you dr needs to fill a simple form for you.

go back to social services ask to apply . get the forms . return the

form ignore when they tell you that you cant have it allow it go

further . you will recive a form for you gp to fill in. after this you

should get it.

just dont back down . say why it is important that you have one.

nasreen

In Autism Treatment , " Diane McGregor "

<m_d33@...> wrote:

>

> Hi Steph,

> Can you not get carer's allowance? I don't know if you

work or not, but if not, you should just get it with 1 phone call.

Also, you mentioned you have a disabled badge for your car. I was

turned down for one, as I was told I could only get one if I got high

rate disability, but 's the same as Tom, no road sense and very

fast. How did you manage to get one? I get middle rate care and low

rate mobility.

>

> Diane

>

> Re: UK benefits

>

>

> We get middle rate DLA - does anyone get higher rate? We thought

> you had to be immobile to get it, but we certainly don't get £400 a

> month.

>

> We were promised baby sitting 3 hours a week and a befriender 3

> hours a month by Social Services. This was last August - since then

> they've written three times to say " we haven't forgotten you " ,

> increased council tax and cut services. We now can't find a baby

> sitter who can cope with Tom (or at least not until he's unconscious

> which is about 10pm, not leaving a whole lot of time for a social

> life) and haven't been out since ooh about beginning of December, in

> fact, just before big crash. My lovely brother comes up and takes

> over but lives three hours away. Any one got any bright ideas about

> finding a baby sitter who doesn't mind being attacked every now and

> then? THe last one hasn't returned since Tom pushed her glasses

> into her face... We're all covered in Tom related bruises (except

> his brother thank goodness) so perhaps best we don't go out as a

> family - people would probably think Mark beats me (or I him).

>

> PLUS got turned down by Caudwell on Friday and can't get sponsored

> flights to either Usman or Growing Minds. Someone pass me a violin

> and make it a biggun.

>

>

> >

> > In a message dated 20/02/2006 00:44:40 GMT Standard Time,

> > sassremtom@ writes:

> >

> > Can anybody help me? We were refused DLA a while back because the

> form

> > really annoyed me and I filled it in as quickly as I could,

> thinking

> > that the diagnosis would get us the money. I am about to re-apply

> >

> > >>>Brace yourself - this is a seriously depressing form but you

> have to do

> > this - a potenial £400 per month buys lots of therapy and

> > supplements......................

> >

> > You have to spend an evening being as NEGATIVE about your child

> as possible.

> > Think of his worst day, his worst night and his worst week. Relive

> it all,

> > have a cry, finish the form and get it in the post!!

> >

> >

> > but

> > I have just heard that people running ABA courses are entitled to

> > something called direct payments from the local authority. however

> you

> > are not entitled to both and direct payments may also stop you

> > receiving other benefits. anyone know about this?

> >

> > >>>Incorrect. Direct Payemtns has nothing at all to do with DLA.

> DLA is your

> > sons benefit.

> >

> > If you earn less than about £80 per week, you can claim ICA for

> yourself if

> > you get muiddle or higher rate on the DLA. Both benefits come from

> central

> > governement

> >

> > Direct Payments come from Social Services as a cheap form of

> RESPITE. YOu

> > need to ask for and go through a 'Carers Assessment' to see if

> somebody who

> > knows nothing decides if you qualify. If you have other children,

> tell them you

> > need protected time with your chidls sibling/s as the affected

> child takes

> > more of your time. Say you and partner need to get out and relax

> without

> > worrying for the sake of your relationship, crying often helps

> too - what was that -

> > did someone call me cycnical (this is therapy hours we are

> talking here!!)

> >

> > In Dorset surprizing, the assessed award is always the same except

> for

> > perhaps one or two families who were part of the pilot who get

> more - we get 4

> > hours per week and an extra 4 for school holidays which works out

> out 5 hours

> > per week. We get funded at £7.40 per hour, I don;t knwo whether

> that is national

> > or local decision. We get funded in advance every quarter.

> >

> > What you have to do is fnd people willing to fill in a very long

> Social

> > Services appliaction form, fill in Criminal Records Bureau check -

> you always

> > refer to them as CARERS when social worker is about (Wink).

> >

> > So if your therapists are happy to fill inthe form, you will

> alreaddy have

> > CRB I am sure, then you can use that for ABA - sorry CARERS!!

> >

> > I use mine for Speech Therapist, I pay double the rate I am funded

> so I only

> > get half the hours. You are free to pay what you like, you just

> only get

> > funded the set amount.

> >

> > The downside, sigh, you knew there would be one - you have to run

> a payroll

> > to pay the CARERS. You need a separate bank account for them to

> make the

> > payments that is not used for anythign else, deal with PAYE unless

> your therapist

> > sign as self employed. Its not so hard.

> >

> > The idea is they give you the set amount and you are responsble

> for finding

> > and paying that person. YOu need to have reconciled accounts which

> sounds

> > scarey but isn't really. They come and reassess you periodically

> at which time

> > you thank then profusely and say what a differene its made to the

> while family!

> > That should secure funding for the next period

> >

> > Cynical Mandi in Dorset Who waited 12 months for the Carers

> Assessment in

> > the first place and that took a formal complaint. IF Sam had not

> made the

> > gains he has through Biomed then I would need to use it for real

> respite. NIcky

> > the SALT loves to take him out anyways, she is happy to babysit

> too which is

> > awesome

> >

>

>

>

>

>

>

> DISCLAIMER

> No information contained in this post is to be construed as

medical advice. If you need medical advice, please seek it from a

suitably qualified practitioner.

>

>

>

>

>

[Guest guest]

---i know what you mean my eldest sleeps with me and when i argued

with the girl on the phone vla about not getting the

middle and refused mobility rate . she told me i should lock him in

the room/

i turned round and said i wish a day like this will fall on you too.

nasreen

>

> Absolutely. I think I've been scared of losing level 2 DLA but

> really just the fact of Tom getting bigger makes him more difficult.

> He's been downstairs eight times since I put him to bed. He's

> totally knackered but that's his current thing. He'll wake at 3am

> and come down with duvet, no question.

>

>

> >

> >

> > In a message dated 20/02/2006 21:21:10 GMT Standard Time,

> > mark.grabiec@ writes:

> >

> > that could make a big difference! Is Sam not mobile (sorry, being

> > dim) We get a disabled badge for the car because Tom has no road

> > sense and the disabled spaces are nearer the destination usually

> (we

> > rarely use it as Tom runs like a whippet and we get funny looks).

> Is

> > the sum paid for providing mobility? £99 a week actually would

> pay

> > for Tom's biomed. That would be an awesome thing..

> >

> >

> >

> > >>>He is very mobile - this is a kid who jogged with a full leg

> plaster on

> > when it was broken LOL

> >

> > The refused us the badge first time out - but if you get higher

> rate they

> > have to give it to you no questions asked. So we have one.

> >

> > Now then, you have to say SEVERE MENTAL INCAPACITY, no road sense,

> too big

> > carry, parents with bad backs (well you would have if you tried to

> carry him

> > wouldn;t you? I already had one to start with!), too strong for

> reins, fights

> > too much to be strapped in maxi buggy. Remember this si the worst

> day in the

> > worst week you are thinking of here

> >

> > HIgher rate care, its has to be the night duty I think - i had

> once

> > somewhere, maybe my friend Pip still has it, a how to fill in your

> DLA for ASD kid

> > that another mother wrote - she was the one getting 'for life' (I

> can't bring

> > myself to put that - maybe next application - needs must). YOu

> really have to

> > detach yourself form what you are writing. If they say no, apply

> again,

> > appeal.

> >

> > When we applied Sam was still having the squitty acidic poops and

> bleeding

> > eczema - I had to change nappy at night in case because it used to

> burn him on

> > contact. Then you add in time to settle the child again. Waking at

> night may

> > happen several times. You need to know what they are looking for,

> though

> > there does not seem to be consistency there for some folks I know

> who have been

> > refused and had to appeal...........

> >

> > Worst day, worst night, worst week - now with Tom these things are

> fresh in

> > your mind, keep them there - this is the info you use to fill in

> that form,

> > this is real life with ASD.

> >

> > Sam sleeps better now, poops are sorted. I shoudl notify them of

> that but he

> > does still wkae sometimes at night and has a party in his room

> bless him.

> >

> > As far as I am concerned government negligence hurt my kid whether

> that was

> > vaccines, tuna or my fillings, I pay them bloody VAt and customs

> duty on

> > supplements to help my kid because they have nothing to offer me

> or him, they

> > sure as hell can pay DLA so I can pay them the VAT and customs

> duty while I try

> > to help my son. Grhhhhhhhhh you got me started now!!

> >

> > Mandi x

> >

> > Just watched that BBC programme about benefit fraud - most of

> these folks

> > were on DLA - you can see why they are so hard some time but they

> are picking on

> > the wrong peeps here.

> >

>

[Guest guest]

all the reasons already mentioned, we have our allowance until is 16, I wasn't aware you could get it for life, when I asked DWP about this, they said after 16 it may be possible, but childrens claims are dealt with on the basis things could change whether or not dx is lifelong disability. Apparently at 16 they become responsible for their own claim if that isn't possible then parents have to apply to represent them, someone tell me if I have that wrong.

Vicky

[Guest guest]

Hi Steph,

If you get a car badge and free parking with it then I thought this

meant you were on the higher rate mobility.

The key to higher rate mobility is things like road sense, having to

get back the car quickly, or mobility problems ( can walk quite

a distance on the flat but needs a lot of rests so we described how

long it takes us to get any where and that worked for us)

The key to higher rate care is getting up more than once a night.

BW from

> >

> >

> > In a message dated 20/02/2006 21:00:11 GMT Standard Time,

> > mark.grabiec@ writes:

> >

> > We get middle rate DLA - does anyone get higher rate? We

thought

> > you had to be immobile to get it, but we certainly don't get

£400

> a

> > month.

> >

> >

> >

> > >>>I just checked with - we get higher rate for both care

> and mobility

> > - he says thats £99.75 Approx per week, so actiually more than

> £400 a month

> > here. All that and more goes on supps, we wouldn't be able to

> biomed much

> > without it.

> >

> > The key to getting the higher rate is having to get up more than

> one night

> > per week, I think. I know ASD kids who have been awarded

> DLA/Mobility 'for

> > life' - we have to apply again when Sam is nearly 12, this was

> awarded when he

> > was 5 I think, when the mobility became available. I think you

can

> get it

> > younger age now

> >

> > Mandi x

> >

>

[Guest guest]

In a message dated 21/02/2006 21:28:48 GMT Standard Time, catherine.devereux@... writes:

What reasons are justified for applying for the mobility as we certainly meet the criteria Mandi mentioned in an earlier post re severely affected etc.. ?

Severe mental impairment is the criteria for our kids and what we used for Sam

Mandi x

[Guest guest]

In a message dated 21/02/2006 21:56:58 GMT Standard Time, catherine.devereux@... writes:

Funny - we've just been redoing wills - cheery subject and came across the same thing - best to leave as much as poss in discretionary trusts - also avoids inheritance tax well.

>>>We won't leave Sam anything, Joe will have his and be guardian for Sam. Tom I think would prefer wine fast cars and loose woman so Joe is safer bet This is my 10 year old who started saving for his mortgae depsoit at 7 years old bless him. Had a chat to dad abotu interest and stuff and was horriefied at paying people to borrow, daddy is very proud

Mandi x

[Guest guest]

Thank you! that's really helpful

> > >

> > >

> > > In a message dated 20/02/2006 21:00:11 GMT Standard Time,

> > > mark.grabiec@ writes:

> > >

> > > We get middle rate DLA - does anyone get higher rate? We

> thought

> > > you had to be immobile to get it, but we certainly don't get

> £400

> > a

> > > month.

> > >

> > >

> > >

> > > >>>I just checked with - we get higher rate for both

care

> > and mobility

> > > - he says thats £99.75 Approx per week, so actiually more than

> > £400 a month

> > > here. All that and more goes on supps, we wouldn't be able to

> > biomed much

> > > without it.

> > >

> > > The key to getting the higher rate is having to get up more

than

> > one night

> > > per week, I think. I know ASD kids who have been awarded

> > DLA/Mobility 'for

> > > life' - we have to apply again when Sam is nearly 12, this was

> > awarded when he

> > > was 5 I think, when the mobility became available. I think you

> can

> > get it

> > > younger age now

> > >

> > > Mandi x

> > >

> >

>

[Guest guest]

Hi Mandi/Steph

just back from a week's break (did I say break!!! more like same sh*t change of scene!!) hence no emails from my quarter for the past week! We too are on higher rate DLA but didn't apply for mobility allowance as assumed they had to be wheelchair bound for this? What reasons are justified for applying for the mobility as we certainly meet the criteria Mandi mentioned in an earlier post re severely affected etc.. ?

Took Jack for bloods for CBC and RBC elements today at local hospital and can proudly report for the second time ever he was fantastic and handled the whole process really well - no pin downs required!! What a star - I'm so happy how he's come on in this dept (at least) when I thi nk back to horrendous experiences over the years!!!

Hope everyone had a good half term,

On 20/02/06, Mum231ASD@... <Mum231ASD@...> wrote:

In a message dated 20/02/2006 21:00:11 GMT Standard Time, mark.grabiec@... writes:

We get middle rate DLA - does anyone get higher rate? We thought you had to be immobile to get it, but we certainly don't get £400 a month.

>>>I just checked with - we get higher rate for both care and mobility - he says thats £99.75 Approx per week, so actiually more than £400 a month here. All that and more goes on supps, we wouldn't be able to biomed much without it.

The key to getting the higher rate is having to get up more than one night per week, I think. I know ASD kids who have been awarded DLA/Mobility 'for life' - we have to apply again when Sam is nearly 12, this was awarded when he was 5 I think, when the mobility became available. I think you can get it younger age now

Mandi x

DISCLAIMERNo information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

[Guest guest]

WHen they are sixteen they do need to make their own claim and this

is why we should all (with low functioning kids) be setting up

discretionary trusts for when we peg it. If we don't anything we

leave them will be means tested and deducted from their adult

claimed DLA. Sorry, not very jolly. Only found this out a few

weeks ago.

Sunny Steph in Nottingham xx

>

> all the reasons already mentioned, we have our allowance

until is

> 16, I wasn't aware you could get it for life, when I asked DWP

about this,

> they said after 16 it may be possible, but childrens claims are

dealt with on

> the basis things could change whether or not dx is lifelong

disability.

> Apparently at 16 they become responsible for their own claim if

that isn't

> possible then parents have to apply to represent them, someone

tell me if I have

> that wrong.

> Vicky

>

[Guest guest]

Hi Steph,

Funny - we've just been redoing wills - cheery subject and came across the same thing - best to leave as much as poss in discretionary trusts - also avoids inheritance tax well.

On 21/02/06, Sirr <mark.grabiec@...> wrote:

WHen they are sixteen they do need to make their own claim and this is why we should all (with low functioning kids) be setting up discretionary trusts for when we peg it. If we don't anything we leave them will be means tested and deducted from their adult claimed DLA. Sorry, not very jolly. Only found this out a few weeks ago.

Sunny Steph in Nottingham xx >> all the reasons already mentioned, we have our allowance until is > 16, I wasn't aware you could get it for life, when I asked DWP about this, > they said after 16 it may be possible, but childrens claims are dealt with on > the basis things could change whether or not dx is lifelong disability. > Apparently at 16 they become responsible for their own claim if that isn't > possible then parents have to apply to represent them, someone tell me if I have > that wrong.> Vicky>

DISCLAIMERNo information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

[Guest guest]

I've been pondering this subjet of wills for a while now. Who would be put in charge of a trust?

Both my boys are on the Spectrum, we only have the two children, I don't have any relatives I would trust so how can we make sure everything comes to them?

Vicky

[Guest guest]

We're facing a similar issue. OUr younger son is probably not on teh

spectrum (jury still out) but he's five and making him a trustee seems

a bit of a grand gesture. I think you need a few trustees to work

around people dying before you do. I got a quote to create a

discretionary trust from a local solicitors that specialises £1000!

Not using them then. Apparently there's a cheaper way of doing it

which I'm researching now via Mencap (who are very clued up about it

all)

>

> I've been pondering this subjet of wills for a while now. Who would

be put

> in charge of a trust?

> Both my boys are on the Spectrum, we only have the two children, I

don't

> have any relatives I would trust so how can we make sure everything

comes to

> them?

> Vicky

>

[Guest guest]

Hi mandi,

Didn't see your post till today - how sweet!! not to mention how sensible!!! Looks like Joe will look after Sam very well. Not sure Mattie will be as careful with the cash, so will be ensuring we have trustees to oversee his spending till he reaches a sensible age - 40 perhaps!!!!!!

Love

On 21/02/06, Mum231ASD@... <Mum231ASD@...> wrote:

In a message dated 21/02/2006 21:56:58 GMT Standard Time, catherine.devereux@...

writes:

Funny - we've just been redoing wills - cheery subject and came across the same thing - best to leave as much as poss in discretionary trusts - also avoids inheritance tax well.

>>>We won't leave Sam anything, Joe will have his and be guardian for Sam. Tom I think would prefer wine fast cars and loose woman so Joe is safer bet This is my 10 year old who started saving for his mortgae depsoit at 7 years old bless him. Had a chat to dad abotu interest and stuff and was horriefied at paying people to borrow, daddy is very proud

Mandi x

DISCLAIMERNo information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.