Criteria for Higher Rate DLA?

[qwerty]

What are the criteria?

 

My son has Aspergers, but he has been battling with chronic constipation/ feacal impaction.

 

I often have to sit by his bed till 10:30 at night, because he is afraid. Often, around 1:00 am he soils himself, we then get him up and get him cleaned. He won't do poo in the toilet and only goes in a nappy, this has been happening only for one year, he was toilet trained before this.

He goes to mainstream school and gets 1 to 1 assistance 17 hours every week. He has missed a lot of school because of his toiletting problem, and currently goes only for half a day as all the medication for feacal impaction causes him a lot of pain, (well, and feacal impaction does as well).

 

I called DLA, they said you can only receive higher rate if the person needs assistance all through the night. My husband and I, or only him, we stay up till about 1:30 and after that go to bed. I really do not get up to check on my son through the night, but often in the morning he will have a poo in his nappy.

 

What do you think?

Edited May 19, 2010 by qwerty

[justine1]

Hi

Not to sure but I think they also take the childs age into account and how long the problem has been going on for.If it is something recent and he is age 7(I believe?) then prehaps they believe you can try other things to get him back to how he was before the problem.I suppose if the problem continues and its taking its toll on your family you could ask the doctor to write to them about higher rate DLA.

 

How would you make use of the extra money to help this situation?

[call me jaded]

What time do you wake up?

[qwerty]

My son has pain from his impaction and drinking medication. I have a toddler and another son, in the evenings I am alone at home, but I cannot take my two other kids out to play, I am under house arrest with my son who won't go out because of aspergers+ pain form impaction and medication. I could do with someone helping me out at least for 30 mins each day while I take out my other two children. I have no friends ( sad, I know.. but I myself have social phobia) and no family. There is no one to help. I have been practically housebound myself for last two months, because I had to stay at home with my son, while he was having 12 movicols a day and lots of liquid poo into his nappy at random times of day. He won't use the toilet for poo and hasn't done so for a year.

 

I wake up at 6 sometimes earlier, but its because of my 17 month old daughter. My son is fine in mornings, except for me needing to wash him, if he soils.

Edited May 19, 2010 by qwerty

[trekster]

Sorry not connected to your DLA care question.......have you tried gf/cf diet for your kids constipation? i ask as mine used to keep me up all night

until i changed my eating habits and took milk thistle (a plant not real milk but im unsure how suitable for children).

 

Good luck on the appeal application, what does the NAS email helpline say?

[justine1]

I agree with Trekster possibly try a change in diet.Also if its causing so much problems go see the GP,its not right that you dont get to leave the house.Some other members suggested Direct payments TO ME THE OTHER DAY,maybe to help with care for him for an hour or so during the day.

[qwerty]

Thank you for advice, son has been seen by GP and specialist at hospital, blood has been tested, he has no sensitivities or allergies. He has always had sheep droppings ever since he was a toddler no matter how many veg or fruit he had. I am aware there is some sort of testing done by University of Sunderland, but they test urine. Isn't blood test more accurate than urine test?

 

My son has been on so much meds lately they cause him pain in the bottom literally, and the feacal constipation is causing him pain too. He can soil himself any minute, he doesn't want to walk, just lay on the sofa or sit to hold his bottom shut.. He goes to school till 12, then comes home, I medicate and it impares him for the rest of the day/evening. It's awful. We are going for another x-ray to see what has happened to the impaction after so much medication. They hoped to shift it in 2 weeks... knowing how much pain my son had been having for the last year I didn't believe it, well..I was right..

[chris54]

Isn't blood test more accurate than urine test?

Depends what they are testing for.

 

Not sure you have to be up all night, evey night. More a case of having to get up regularly in the night, I think.

 

Not sure how old your son is but if you dont already you may be able to get help with cost of nappys.

[bensmum2]

Hi , you don't have to be up all night at all, like the previous lady said you hav eto be up regularly, does he soil his sheets, do u have to shower him during the night? this sounds ridiculous i know, but they could even say that because you are using nappies in the night that means you don't have to get up so much with him, any excuse to get out of paying you more!! My son went through soiling at about age 7 for a couple of years,both day and night he woudlnt use the loos at school but often his pants were soiled when he came home. We had to go to a poo clinic and throw bean bags into a bin to represent poo going down the toilet!! when he was 11, he suffered severe stomach cramsp so much thta eh was hospitalised twice, they couldn't find anything, so they said it must be cinstipatioan(even though he was very regular and i told them) and there must be poo build up(even though it wasn't on x ray or scan)The put him on movicol and sent him home, the movicol made him worse, he was in excrutiatig pain and it actually made him constipated, it took a couple of months of sever pain to get him right again, i am wondering if the medication could be prolonging your sons problems?? It definately did mine, He was eventually diagnosed with somatic symptoms relating to school anxiety and still has these but not so much , but there was no physical cause and their treatment made him worse!! Now i DO GET FULL CARE DLA for him, the reason i get it is that he wets the bed and has done since age 7 , the soiling stopped but the wetting didn't , He can wet 3 times in a night we have to change his bed and shower or wash him change his clothes etc, all the treatments didnt work, we use nappies when we are away but the enuresis clinic said using them at home stops his bladder training itself, he needs to feel wet to wake up and eventually he will recognise the feeling before he wets and wake up, so far it hasn't worked , and his wetting is definately related to school it's worse in term times . But that's why we get higher rate care. I don't know what the answer is for you , but i would definately look into the possibility that the medication is prolonging this and making it worse, i presuem you have tried rewards for poos in toilets!! we did all that even the psychologist said we should pay him for it!! Good luck x

Edited May 20, 2010 by bensmum2

[call me jaded]

If he is getting up at 7.30 or 8 there isn't sufficient care need during the night for an award of higher care IME. Also the care needs to be ongoing, not the short term result of treatment.

 

Just be aware that if you are going to bed at 1.30am and getting up at 6am on a regular basis that will have an impact on your general health as well as making you function at a lower level during the day. You need to take care of the carer and change something in your routine to get you a better sleep pattern.

[sawjd]

What are the criteria?

 

My son has Aspergers, but he has been battling with chronic constipation/ feacal impaction.

 

I often have to sit by his bed till 10:30 at night, because he is afraid. Often, around 1:00 am he soils himself, we then get him up and get him cleaned. He won't do poo in the toilet and only goes in a nappy, this has been happening only for one year, he was toilet trained before this.

He goes to mainstream school and gets 1 to 1 assistance 17 hours every week. He has missed a lot of school because of his toiletting problem, and currently goes only for half a day as all the medication for feacal impaction causes him a lot of pain, (well, and feacal impaction does as well).

 

I called DLA, they said you can only receive higher rate if the person needs assistance all through the night. My husband and I, or only him, we stay up till about 1:30 and after that go to bed. I really do not get up to check on my son through the night, but often in the morning he will have a poo in his nappy.

 

What do you think?

 

[sawjd]

Hello Qwerty,

 

Just wanted to let everyone know aswell as yourself that in the latest Austim magazine issued in the back there is a brillaint well laid out explaination of DLA and what qualifies as high rate and low rate and medium. It explains everything brilliantly and i just wished that this was done ages ago as DLA is extremely confusing. The money can cover extra nappies and bed protection i think but in the meantime i would keep up with the movicol. Hope this helps.

 

best wishes, sarni

[trekster]

Thank you for advice, son has been seen by GP and specialist at hospital, blood has been tested, he has no sensitivities or allergies. He has always had sheep droppings ever since he was a toddler no matter how many veg or fruit he had. I am aware there is some sort of testing done by University of Sunderland, but they test urine. Isn't blood test more accurate than urine test?

 

My son has been on so much meds lately they cause him pain in the bottom literally, and the feacal constipation is causing him pain too. He can soil himself any minute, he doesn't want to walk, just lay on the sofa or sit to hold his bottom shut.. He goes to school till 12, then comes home, I medicate and it impares him for the rest of the day/evening. It's awful. We are going for another x-ray to see what has happened to the impaction after so much medication. They hoped to shift it in 2 weeks... knowing how much pain my son had been having for the last year I didn't believe it, well..I was right..

 

i didnt have food allergies either since gluten and milk autistic type addictions dont come up.

[trekster]

Thank you for advice, son has been seen by GP and specialist at hospital, blood has been tested, he has no sensitivities or allergies. He has always had sheep droppings ever since he was a toddler no matter how many veg or fruit he had. I am aware there is some sort of testing done by University of Sunderland, but they test urine. Isn't blood test more accurate than urine test?

 

My son has been on so much meds lately they cause him pain in the bottom literally, and the faecal constipation is causing him pain too. He can soil himself any minute, he doesn't want to walk, just lay on the sofa or sit to hold his bottom shut.. He goes to school till 12, then comes home, I medicate and it impairs him for the rest of the day/evening. It's awful. We are going for another x-ray to see what has happened to the impaction after so much medication. They hoped to shift it in 2 weeks... knowing how much pain my son had been having for the last year I didn't believe it, well..I was right..

 

Some parents use "oxypowder" to sort out faecal impaction. Google it to see if you can find some near you.

[trekster]

Depends what they are testing for.

 

Not sure you have to be up all night, every night. More a case of having to get up regularly in the night, I think.

 

Not sure how old your son is but if you dont already you may be able to get help with cost of nappys.

 

Agreed, personally i didnt want to spend money on a test when i knew which symptoms were likely to disappear

once i went completely gf/cf. Agree about the frequent attention at night thing, DLA are improving the forms for

children supposedly, has anyone seen the new forms? They might shed some light on this issue.

[Suze]

A friends son had bad feacal impaction and eventually a short stay in hospital was needed to clear him out, I,d be trying to get back to the pead earlier and get this sorted , missing school and the impact its having on family life make it an urgent case imo.good luck suzex

[trekster]

Hello Qwerty,

 

Just wanted to let everyone know as well as yourself that in the latest Austim magazine issued in the back there is a brilliant well laid out explanation of DLA and what qualifies as high rate and low rate and medium. It explains everything brilliantly and i just wished that this was done ages ago as DLA is extremely confusing. The money can cover extra nappies and bed protection i think but in the meantime i would keep up with the movicol. Hope this helps.

 

best wishes, sarni

 

Which magazine is this please? i would like to get a copy if possible.

 

[Tally]

I think DLA consider night time to be after the household has "shut down" for the night, so they might not consider you having to sit by him until 10.30 as night-time care. However, if you can explain that you are staying up to provide care until 1am, rather than because you choose to stay up until 1am, then I think they may consider it night-time care, but I don't really know. To put across your strongest case, you need to stress that he needs to be taken out of bed during the night to be cleaned and changed.

 

However, you can only claim for conditions that are likely to continue for a certain length of time. If the medical evidence is that your son's digestive problems can be treated within a short time, the DLA people may not take it into account.

[sawjd]

Which magazine is this please? i would like to get a copy if possible.

 

 

Hello Trekster,

 

The magazine is called 'The Autism File' Issue 35.Page 82. This magazine in this issue contains information on Housing Benefit, Jobseekers Allowance, Tax Credits, Benefits for a disabled child reaching the 16 years of age. Also something new to me, Contributory Employment support allowance in youth (CESA(Y). The magazine also details Pension Credit, Housing costs, Carers Allowance and Income support. It is very well explained and laid out and more importantly up to date. Absolutely brilliant to whoever has done this. At last. Hope this helps, this magazine i think comes out quaterly. So you should still be able to get hold of it. If not let me know and i can send you an email and type what is in the magazine for whatever section you want or you can order a copy from WH Smiths if you like. Not sure i would be allowed to copy from magazine on here. copyright law . Only the moderator would know this.

 

Hope this helps.

 

best wishes

 

Sarni

[call me jaded]

The Turn2Us website has good benefits advice.

[zenemu]

What are the criteria?

 

My son has Aspergers, but he has been battling with chronic constipation/ feacal impaction.

 

I often have to sit by his bed till 10:30 at night, because he is afraid. Often, around 1:00 am he soils himself, we then get him up and get him cleaned. He won't do poo in the toilet and only goes in a nappy, this has been happening only for one year, he was toilet trained before this.

He goes to mainstream school and gets 1 to 1 assistance 17 hours every week. He has missed a lot of school because of his toiletting problem, and currently goes only for half a day as all the medication for feacal impaction causes him a lot of pain, (well, and feacal impaction does as well).

 

I called DLA, they said you can only receive higher rate if the person needs assistance all through the night. My husband and I, or only him, we stay up till about 1:30 and after that go to bed. I really do not get up to check on my son through the night, but often in the morning he will have a poo in his nappy.

 

What do you think?

 

I just asked my partner about this, she sits on the judicial appeals panel for DLA.

 

The night time care you provide your son should not be so much continuous, but continual if that makes sense.

 

My partner feels that middle rate care is pretty much a shoe-in, if you want higher rate care be prepared to go to an appeal with a medical report on the bowel issues your son has and it will almost certainly be granted at appeal.

 

Hope that helps.

 

Zen

 

[cmuir]

Hi

 

Receiving assistance all through the night is not the case – I wrote on my son's DLA form that although he takes melatonin to help get him off to sleep, he awakens 5 nights out of 7 generally and can be awake from 20 mins +. DLA applications are scored on frequency/time, which is often hard to break down or quantify. Often there's no doubt that a child requires a lot of care, however, when it comes to putting pen to paper, it's difficult to quantify time or problems. Tally hit the nail on the head – you do need to convey exactly what a typical night time is like and what's involved when cleaning/changing/etc and how long that takes/how many times a night, etc. So it's best to seek advice from your local CAB or similar organisation.

 

Regards

 

Caroline.

Edited May 21, 2010 by cmuir

[qwerty]

Thank you everyone for your input, ideas and advice! I just wanted to get an idea whether I should bother aplying for higher rate DLA or should I not waste my time. If there is no improvement, I will do. Thank you again!

 

We had an x-ray at the hopsital today and the impaction has cleared. They recommended that I keep my son on 4 Movicols, so I will be sending him back to school. This, unfortunately is not the end of our troubles, as I really cannot figure out what is still wrong with him. He was running around all evening in distress and in pain until he had a poo in the nappy, but still he was in pain after that, he kept pacing around and later jumping up in his bed whilst sitting with his legs crossed going "ow, ow, ow"., The doctors and continence people are convinced my son is holding things in on purpose and I am supposed to teach him to start to use the toilet again. But they have no idea how distressed he gets and how much in pain he is every day. They have told me there will be no tests of any other kind. Really, can a child hold his poo causing himsef so much pain? Or is there something WRONG with him inside and causing him pain and that is why he is afraid to have a poo?

[trekster]

Hi

 

Receiving assistance all through the night is not the case – I wrote on my son's DLA form that although he takes melatonin to help get him off to sleep, he awakens 5 nights out of 7 generally and can be awake from 20 mins +. DLA applications are scored on frequency/time, which is often hard to break down or quantify. Often there's no doubt that a child requires a lot of care, however, when it comes to putting pen to paper, it's difficult to quantify time or problems. Tally hit the nail on the head – you do need to convey exactly what a typical night time is like and what's involved when cleaning/changing/etc and how long that takes/how many times a night, etc. So it's best to seek advice from your local CAB or similar organisation.

 

Regards

 

Caroline.

 

How about keeping a detailed diary for a week on how much you need to help your son, mention in it hours slept, beds changed and the state of yourself and your son.

[qwerty]

Yes, I have started something like that, but I find I don't have much time to write those things down.. I do and will try (when I can) and especiallywhen things get really bad.

Edited May 21, 2010 by qwerty

[trekster]

Vitamin C powder tends to shift my constipation when it occasionally occurs.

 

http://www.enzymestuff.com/rtstools.htm for ideas on why his stools are x way.

[trekster]

Hello Trekster,

 

The magazine is called 'The Autism File' Issue 35.Page 82. This magazine in this issue contains information on Housing Benefit, Jobseekers Allowance, Tax Credits, Benefits for a disabled child reaching the 16 years of age. Also something new to me, Contributory Employment support allowance in youth (CESA(Y). The magazine also details Pension Credit, Housing costs, Carers Allowance and Income support. It is very well explained and laid out and more importantly up to date. Absolutely brilliant to whoever has done this. At last. Hope this helps, this magazine i think comes out quaterly. So you should still be able to get hold of it. If not let me know and i can send you an email and type what is in the magazine for whatever section you want or you can order a copy from WH Smiths if you like. Not sure i would be allowed to copy from magazine on here. copyright law . Only the moderator would know this.

 

Hope this helps.

 

best wishes

 

Sarni

 

Thanks for your help Sarni, ive asked on another list that subs to the magazine.

Thanks also "call me jaded" will check out that site.

[trekster]

Thank you everyone for your input, ideas and advice! I just wanted to get an idea whether I should bother applying for higher rate DLA or should I not waste my time. If there is no improvement, I will do. Thank you again!

 

We had an x-ray at the hospital today and the impaction has cleared. They recommended that I keep my son on 4 Movicols, so I will be sending him back to school. This, unfortunately is not the end of our troubles, as I really cannot figure out what is still wrong with him. He was running around all evening in distress and in pain until he had a poo in the nappy, but still he was in pain after that, he kept pacing around and later jumping up in his bed whilst sitting with his legs crossed going "ow, ow, ow"., The doctors and continence people are convinced my son is holding things in on purpose and I am supposed to teach him to start to use the toilet again. But they have no idea how distressed he gets and how much in pain he is every day. They have told me there will be no tests of any other kind. Really, can a child hold his poo causing himself so much pain? Or is there something WRONG with him inside and causing him pain and that is why he is afraid to have a poo?

 

He could have severe gas pains they really do hurt so much you think someone has kicked you sometimes.

[qwerty]

He could have severe gas pains they really do hurt so much you think someone has kicked you sometimes.

 

Sorry, I didn't specify, his pain is usually only bottom, rectal kind. On occasion he will have abdominal pain, sometimes I rub his tummy and he does pass gas, but he has constant bottom pain.

Edited May 21, 2010 by qwerty

[trekster]

Yes, I have started something like that, but I find I don't have much time to write those things down.. I do and will try (when I can) and especiallywhen things get really bad.

 

A typed one might be easier that you could save on the pc. i find i type quicker than i write.