Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 You may be able to obtain specialist advice and assisstance in filling in the DLA forms etc from a local Disability Rights organisation. If you don't know whether such an organisation is to be found, perhaps ask at the local reference library or try the Citizens Advice Bureau. It makes things much easier, I find. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Just to add to that apparently in our borough the direct payments are handled through a payroll company so you don't have to keep accounts, just inform company when and who to pay. Yes I am going to apply this week too! Mum231ASD@... wrote: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 In a message dated 20/02/2006 17:46:50 GMT Standard Time, saqabisa@... writes: £ 9.20 in lancs direct paymentmum 231 asd what are they actually asking you to do to refill theform in or justify by appealing to the decision. >>>Wow, I must tell our SSW about the difference! I think the adult disabled get more per hour than we do for kids. Its not me, it was somebody else I was replying too. In your situation, ask for another assessment and tell them DH has to go back to work as you cannot afford to subsidise the respite any more and you want direct payments. See what they say. My DH is a house husband, works only 12-15 hours per week in flexible employment so he can be off when needed. 'Normal' families get to be mum dad and kids, why not ours? Mandi in Dorset Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 In a message dated 20/02/2006 21:00:11 GMT Standard Time, mark.grabiec@... writes: Any one got any bright ideas about finding a baby sitter who doesn't mind being attacked every now and then? >>>Teaching assistants at school, they don't get paid as well as they should and are often looking for extra cash. Thats where I have always got mine. I would say that as they are unbale to come up with the goods and its been 6 months, ask for Direct Payments - that will concentrate their minds. We also have agenices locally who will provide ASD friendly NNEB's but it costs more. Jumping up and down, daily phone calls and tears are helpful I have found (wink) Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 In a message dated 20/02/2006 21:00:11 GMT Standard Time, mark.grabiec@... writes: 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. >>>Oh bugger, still haven't heard about mine - did they say why? Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 In a message dated 20/02/2006 21:27:09 GMT Standard Time, mark.grabiec@... writes: I think they meant in financial terms because I do work full time (even though Mark can't with the Boy Wonder taking up so much time). It literally landed on their mat and >>>Yep that whats they said to my mate, who for the life of her can't figure HOW they can be too rich to get some. Bugger. Mark shoudl be claiming the ICA if he isn't already- says that about £43 per week. When he is on a contract - he tells them and they stop the ICA while he's working, then tell them again when project over and its restarts. You can claim this if income less than about £80 per week. This means you can also sign soemthing or other ( sorts all this out) so when you are claiming ICA your NI contributions get paid so you are not short on the pension, if they have such things till when we retire. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 In a message dated 20/02/2006 21:44:03 GMT Standard Time, mark.grabiec@... writes: I work full time but Mark is a house husband. Don't think he can get carers allowance - unless someone knows different. >>>YEah! YOu just got yourself £40 per week better off - as long as Mark earns no more than about £80 per week he gets ICA - its not means tested. This is if he is providing care for 35 hours per week or more, which he does. Howeverm, I do think you can only clain this for middle or higher rate CARE award on the DLA. DLA is key to getting to other stuff Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 We get higher rate DLA and higher rate Mobility, our award is till is 16yrs old, he is profound though. Vicky x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 In a message dated 20/02/2006 21:54:19 GMT Standard Time, n.trotman@... writes: We have been running it for a year and we have a totally different littleboy. 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 inpeople - we now have a very happy little boy (aged 4 1/2), speaks in smallsentances, great eye contact, loves his volunteers and show great interestin people, loves playing with his sister (only in last 4 month), comfortedrecently when she was crying. Got into drawing 2 months ago - and loves todraw - especially bathrooms and toilet - I think he has a talent >>>Awesome work congratulations!! I have a buddy locally who gets funding of £14K as a pilot for her Son Rise programme - little Josh is doing very well, he used to at Sam school. The LEA funding are a nightmare, but his place at ASD specific school was costing them £30K plus as its out of borough and he had intensive staffing. So they are saving half what they were paying before and more importnatly the child has come on in leaps and bounds. Havent; caught up with her recently, they may have others families now. Not sure where they got the £14K from, my buddy does have to rub budgets and the LEA sit in on interviewing therapists and I think go along to Team training, they have had the US person come over. Keep up the good work and keep chipping away with the biomed, slow is better than none at all Mandi in Dorset Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Disability Living Allowance (care component) Weekly rate if you need looking after Highest rate £60.60 Middle rate £40.55 Lowest rate £16.05 Disability Living Allowance (mobility component) Weekly rate to help you get around Higher rate £42.30 Lower rate £16.05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Definitely younger than that because was still in Nurserey when we got it unless they have changed things he is now 8yrs old, wait a minute just counting on my fingers he was 3 and a half when we got it. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 £ 9.20 in lancs direct payment mum 231 asd what are they actually asking you to do to refill the form in or justify by appealing to the decision. you best bet is to ask somebody else to fill in for you on e with authority. like health vistor or social services .etc make sure you know what your child should be reciving. you could ask your pead or gp or social services. this is because the dla will try to give you a lower outcome then you should get. i have made that mistake and it too late for me to appeal. if they asking you to appeal get letters from your child pead and a teacher to justify what hes like. and send it in. i use this approach and this works great. ps i tryed to claim direct payments only to be told that i could not get them because my husband left his job to help me out with the boys. my pead said this was not a wise judgement. nasreen > 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. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Try contacting Welfare Rights - they have worked very well for my son. Jane Re: UK benefits £ 9.20 in lancs direct paymentmum 231 asd what are they actually asking you to do to refill theform in or justify by appealing to the decision.you best bet is to ask somebody else to fill in for you on e withauthority. like health vistor or social services .etcmake sure you know what your child should be reciving. you could askyour pead or gp or social services. this is because the dla will tryto give you a lower outcome then you should get.i have made that mistake and it too late for me to appeal.if they asking you to appeal get letters from your child pead and ateacher to justify what hes like. and send it in. i use this approach and this works great.ps i tryed to claim direct payments only to be told that i could notget them because my husband left his job to help me out with the boys.my pead said this was not a wise judgement. nasreen > 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 theform > 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 youhave to do this - a potenial £400 per month buys lots of therapy andsupplements......................> > You have to spend an evening being as NEGATIVE about your child aspossible. 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 foryourself if you get muiddle or higher rate on the DLA. Both benefitscome from central governement> > Direct Payments come from Social Services as a cheap form ofRESPITE. YOu need to ask for and go through a 'Carers Assessment' tosee if somebody who knows nothing decides if you qualify. If you haveother children, tell them you need protected time with your chidlssibling/s as the affected child takes more of your time. Say you andpartner need to get out and relax without worrying for the sake ofyour relationship, crying often helps too - what was that - didsomeone call me cycnical (this is therapy hours we are talking here!!)> > In Dorset surprizing, the assessed award is always the same exceptfor perhaps one or two families who were part of the pilot who getmore - we get 4 hours per week and an extra 4 for school holidayswhich 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 fundedin advance every quarter.> > What you have to do is fnd people willing to fill in a very longSocial Services appliaction form, fill in Criminal Records Bureaucheck - you always refer to them as CARERS when social worker is about(Wink).> > So if your therapists are happy to fill inthe form, you willalreaddy have CRB I am sure, then you can use that for ABA - sorryCARERS!! > > I use mine for Speech Therapist, I pay double the rate I am fundedso I only get half the hours. You are free to pay what you like, youjust only get funded the set amount.> > The downside, sigh, you knew there would be one - you have to runa payroll to pay the CARERS. You need a separate bank account for themto make the payments that is not used for anythign else, deal withPAYE unless your therapist sign as self employed. Its not so hard. > > The idea is they give you the set amount and you are responsblefor finding and paying that person. YOu need to have reconciledaccounts which sounds scarey but isn't really. They come and reassessyou periodically at which time you thank then profusely and say what adifferene its made to the while family! That should secure funding forthe next period > > Cynical Mandi in Dorset Who waited 12 months for the CarersAssessment in the first place and that took a formal complaint. IF Samhad not made the gains he has through Biomed then I would need to useit for real respite. NIcky the SALT loves to take him out anyways, sheis happy to babysit too which is awesome > > > > > > > > DISCLAIMER> No information contained in this post is to be construed as medicaladvice. If you need medical advice, please seek it from a suitablyqualified practitioner.> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 I get higher rate of care for DLA. A nice Social Worker helped me fill in the form and she stressed the most important thing to stress is that my son needs care day AND night. It is the fact that Luke needs care in the night that bumps the allowance up from middle to high apparently! Have you ever thought of trying to get a volunteer in to help. I run a Son-Rise program for my son and have 5 volunteers who are all wonderful - but a BIG bonus of this is that I have 5 potential babysitters for nights out who know and understand Luke's ways! Good luck Nicola Mum of Luke 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 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.. > > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Thank you Mandi, as ever you are a god send. (Even to a knackered old atheist like me). They said they couldn't do direct payments but they could do baby sitting and befriending. THey've already admitted the need and not provided the service. Grrr. Cheers matie. > > > In a message dated 20/02/2006 21:00:11 GMT Standard Time, > mark.grabiec@... writes: > > Any one got any bright ideas about > finding a baby sitter who doesn't mind being attacked every now and > then? > > > >>>Teaching assistants at school, they don't get paid as well as they should > and are often looking for extra cash. Thats where I have always got mine. > > I would say that as they are unbale to come up with the goods and its been 6 > months, ask for Direct Payments - that will concentrate their minds. We also > have agenices locally who will provide ASD friendly NNEB's but it costs more. > > Jumping up and down, daily phone calls and tears are helpful I have found > (wink) > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 You applied ages before me so that's probably a good sign. They said they had more deserving cases. I think they meant in financial terms because I do work full time (even though Mark can't with the Boy Wonder taking up so much time). It literally landed on their mat and ounced back despite a great letter from the school saying how much it would benefit them to send a teacher with us to Growing Minds to learn how they work with Tom. Bit gutted. But it's been weeks since you sent yours hasn't it so fingers crossed for you. At least they're seriously considering it or I am sure they'd have put you out of your misery. Sx > > > In a message dated 20/02/2006 21:00:11 GMT Standard Time, > mark.grabiec@... writes: > > 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. > > > > >>>Oh bugger, still haven't heard about mine - did they say why? > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Hi Diane I 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...) So there is a precedent. We have to reapply in 2007 for it to be renewed. > > > > 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. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 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. > Quote Link to comment Share on other sites More sharing options...
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