reduced tax credits

nannytone_2

if the night care needs are waking her up to get her to drink then middle rate care is appropriate.

kingfisherblue

Although I appreciate the problems with eating and drinking, the OP's daughter doesn't sound as though she needs a great deal of personal care.

My son has physical and learning disabilities. He was born with a number of digestive problems, requiring surgery at birth. The surgery saved his life, but left him with long term feeding difficulties. At 13, he still needs to be fed high calorie milk overnight - he can't have a peg because he has had so much surgery and it would be dangerous.

In addition to the feeding, my son is doubly incontinent, has speech problems which make him very difficult to understand, has learning difficulties, needs help with dressing, washing, etc, takes nine different medications a day, and also has major problems with mobility. The only page on the DLA form that doesn't get an essay about his difficulties is the one where they ask about blackouts, fits and seizures. My son's conditions and disabilities are lifelong and he is unlikely to ever reach a level of independence where he can look after himself without supervision, even for short periods of time.

Personally, I would be delighted if my son could manage with less care, as this would mean that he was more independent.

I think that it is likely that the DWP are expecting the child to be able to manage their condition more as they get older. Obviously this depends on the child's condition and their capabilities, but it isn't unreasonable to think that a seven year old (without any learning disability) is beginning to understand their condition and know that there are certain foods that they cannot eat. The amount of times that you are up int he night, and the length of time, also affects whether you qualify for HRC. Once only, to give a drink (no matter how unpleasant), probably won't qualify.

To answer the original question, the severe disability premium will not be replaced by an increase in income support. Someone mentioned that IS should be about £65 a week - for anybody receiving Carer's Allowance, a carer's premium is added on, then it is reduced by the amount of CA (£55.55 a week). This gives a total of £40 and some pence a week, plus the CA.

sunnyone

esmerelda98 wrote: »

An NG tube or a PEG for a child who can take food and drink orally? Don't forget these interventions have their own risks, which can be serious, and it seems this girl must take these drinks for the forseeable future.

I'm no DLA expert, but I was thinking only a few days ago about how stressful life would be with a child with PKU, because I would be watching everything they eat, even taking special food to birthday parties etc. How on earth would I be able to let them go off to school, with there always being a risk that they would be offered, and accept some of a classmate's food?

A child with say a nut allergy is much more at risk than a child with PKU in out of the home situations but it can be managed, a child with PKU isnt going to drop down dead within seconds of being in contact with an allergen like allergy sufferers, they must learn to adapt to their condition just like many other similar conditions and eight isnt a baby!

I can see no reason at all for HRC for an eight year old for PKU (and i have experiance of the condition) and even middle rate care will be pushing it come a few years time.

minx_101

A lot of nights it is a real struggle as I have to try maybe two or three times to get her to drink it, and this situation was still the same when she was receiving the high rate care, so i don't believe the middle care rare is appropriate. It is by encouraging my child to drink these supplements that she can lead a normal life and not end up with severe brain damage.

sunnyone

minx_101 wrote: »

A lot of nights it is a real struggle as I have to try maybe two or three times to get her to drink it, and this situation was still the same when she was receiving the high rate care, so i don't believe the middle care rare is appropriate. It is by encouraging my child to drink these supplements that she can lead a normal life and not end up with severe brain damage.

But how long can you claim it takes out of 24 hours to get her to drink 4 drinks?

Certainly not 24 hours as you would like because a lot of the household income has now gone, an income that dosnt go on her illness.

esmerelda98

sunnyone wrote: »

A child with say a nut allergy is much more at risk than a child with PKU in out of the home situations but it can be managed, a child with PKU isnt going to drop down dead within seconds of being in contact with an allergen like allergy sufferers, they must learn to adapt to their condition just like many other similar conditions and eight isnt a baby!

I can see no reason at all for HRC for an eight year old for PKU (and i have experiance of the condition) and even middle rate care will be pushing it come a few years time.

Many adults with health problems caused by lifestyle choices struggle to change, even though their discomfort would probably be eased by making changes, so I would expect parental monitoring of this girl's diet for a while to come. The negative outcome may not be instantaneous, but it is very serious.

However, as regards DLA, I suppose there are fairly straightforward criteria. I am no expert, so I will leave that to others. It may simply be that the original award was wrong and the situation is now being corrected, what with the push to reduce Government spending.

kingfisherblue

sunnyone wrote: »

A child with say a nut allergy is much more at risk than a child with PKU in out of the home situations but it can be managed, a child with PKU isnt going to drop down dead within seconds of being in contact with an allergen like allergy sufferers, they must learn to adapt to their condition just like many other similar conditions and eight isnt a baby!

I can see no reason at all for HRC for an eight year old for PKU (and i have experiance of the condition) and even middle rate care will be pushing it come a few years time.

I have a serious allergy to various substances, including almonds - I carry two Epipens and my two children without disabilities (obviously not the one with disabilities because he doesn't understand) know that if I have to use them, they need to dial 999 as my throat swells and I could stop breathing. I've never thought to claim DLA and wouldn't consider doing so now. I have, as Sunnyone says, learned to adapt to my condition. Admittedly I am an adult, not a child, but often children have to adapt to manage a condition, often from a young age.

OP, I appreciate that you feel that your child should be in receipt of HRC. The only thing that you can do about this is go to a tribunal, where you risk losing MRC. Only you can decide whether it is worth doing this. FWIW, I know a large number of children who have a variety of disabilities. In the last year or so, only two have been turned down for DLA - one because the headteacher provided inaccurate information (this child had HRC and HRM reinstated on appeal as it could be proven that he has major care and mobility needs) and the second because it is mum who thinks that her child has disabilities - doctors do not agree.

Your original question about the tax credits premiums has now been answered and I'm not sure what else can be added to this thread.

esmerelda98

sunnyone wrote: »

But how long can you claim it takes out of 24 hours to get her to drink 4 drinks?

Certainly not 24 hours as you would like because a lot of the household income has now gone, an income that dosnt go on her illness.

Whilst I am bearing in mind that according to the rules the higher rate award may not be due, if the condition is PKU the care required is much more than giving dietary drinks. There is all the checking of ingredients in foods, and more expensive 'special' foods. I suppose by now one would expect the family to have identified a range of foods that are safe, then again manufacturers do change formulations from time to time, so I suppose constant vigilance is necessary.

pipkin71

Is there a reason why your daughter has to be woken up to take the drink, minx 101?

Although it must be difficult because she doesn't like it, can you not time it so that she can have it before bed time, or must she have it during the night?

Sam____2

Maybe I'm just not understanding how it all works, but what difference is it going to make to anyone if more money is awarded for having to wake a child up during the night to give them a drink? if that's the main issue, I don't see what difference income makes in this situation...if you get another £x per week how is that going to change the situation or help it? would the OP then pay for someone to do the night drink for them? I just don't get how more money will make a difference...