Dla and son with autism advice

Mummyboo777

Thanks for the positive inputters, I shall see what happens. Good luck to those wanting to change the system. And the ones taking the moral high ground.... Me I shall be enjoying quality time with my boys
:rotfl:

ab1982

Indie_Kid wrote: »

You'e lucky then. One of the first things I had to buy was a pair of noise cancelling headphones which were £200.

I'm sure that expensive noise cancelling earphones are a necessity due to your medical condition but surely you must see why without knowing any details of your condition this winds people up when they see 1/2 their wages disappear to the tax man each month.

Mummyboo – if you’re entitled to it based on the DWP descriptors that others on here can advise you of better than I can then claim it I say. We don’t NEED child benefit but are claiming it.

SingleSue

In answer to your question, a large part goes towards transport/fuel costs, something you would not expect and are not normal for a person his age. This is not just for travel to normal things but also for appointments, therapies etc. A basic week with no appointments or therapies comes in at around £30, some weeks it can be triple this.

Additionally, therapy costs, bedding costs/clothing costs over and above what is 'normal' (he has a bowel disorder connected to his autism), special food costs, paying for for someone to be with him if I am unable to etc for example if I am having to deal with something concerning my middle son who although has a milder form of ASD, still has needs outside of those normally expected of an 18 year old.

To be honest, his PIP has to be supplemented rather than any of it being spare.

rogerblack

As you have repeatedly been told, this is not correct in any way.

DLA (and PIP) are paid based on the degree of disability.
This degree of payment is _NOT_ related to the likely costs of the assessed need.
For example, I am currently assessed as requiring help with preparing food.
In order to actually get this help (purchasing food pre-prepared does not count), I would need to spend at a fairly conservative estimate 70 pounds a week for someone to help me cook. DLA (care) is 20 pounds a week).

Similarly, on the mobility component, getting a meaningful amount of help out-of-doors for 20 quid a week seems problematic.

I am currently appealing the decision on both these on the grounds I reasonably need 'continual supervision' to enable me to be safe and with help throughout the day, which would entitle me to an extra 30 pounds or so a week.

I am really curious where I can find someone that would provide 'continual supervision' on 50 pounds a week, for 126 hours a week or so.

DLA / PIP is _NOT_ only for self-care.
It's also to help with costs of day-day life beyond self-care.

This can be in practice things which make supervision less required - for example being able to pay for breakages without worry.
Or being able to employ someone for a few hours a week for domestic tasks that you can't do anymore.


You might have some-sort of moral point if a high-rate care DLA award on the basis of requiring continual supervision to remain safe would actually pay out the 2500/week or so required for that 24*7 care.

SingleSue

Oh I know, just thought I would lay out what youngest's PIP is spent on to give an example of the sort of payments for someone with his particular needs (and to reassure some that the money is being spent wisely ). I know everyone is different, everyone has different needs and for some, there is no additional expenses (middle son was one of them for a few years, becoming slightly more different now he is getting older though - he is not in receipt of DLA/PIP).

Talking about middle son, one of the things which has calmed him down and allowed him to move on from the very stressful time I had with him when he was younger is drumming. Drumming is not cheap but the rewards he and all of us have gained from it has been brilliant. He went from unteachable, very aggressive and quite violent to a gentle giant, academically brilliant and is off to uni tomorrow....to study music.

Personally, I cost my parents an absolute fortune, I was a dancer complete with the very expensive costumes and dance classes :rotfl:

rogerblack

bloolagoon wrote: »

If you NEEDED that amount of care that you don't have how are you alive?

DLA is not paid on the basis that you need care to be able to survive, if the adaptions you have to make to your life are so unreasonable that it amounts to 'need'.

For example - I am 'managing' without that care by not cooking, not bathing at all often, never going out as I can't do it safely.

I will not go into all the details, but suffice it to say that the words 'living in squalor' have been used.

http://www.osscsc.gov.uk/Aspx/view.aspx?id=3896

Quoting in part:

The tribunal found that neither test for the lrcc was met and it therefore dismissed the appeal. A key aspect of its reasoning was its view that the appellant had made a decision to prioritise his energy and concentration on his work and because of the limitation on his energy (caused primarily by the CFS) this resulted in him having problems with certain aspects of self care. From this the tribunal reasoned that if, however, the appellant put his own self care as his first priority he would be capable of cooking a main meal and self caring. The tribunal thus reasoned that the attention was not reasonably required because “f [the appellant] put his own personal care as his priority he would be likely to be able to look after his bodily functions reasonably” and “he would be likely to have sufficient energy and stamina to be able to cook a main meal safely most of the time”

The tribunal therefore misdirected itself in law by seeking to assess the appellant’s cooking ability in isolation from his work and as if he was not working. What had, and still has, to be assessed is whether in the course of his normal life - which here included his attempting to work – the appellant over a broad period could or could not prepare a cooked main meal for himself because of his CFS and other health conditions.

I accept that, in some cases, engaging in what Lord Woolf in Mallinson (R(A)3/94) called “extreme situations” may mean that the person may be found not to reasonably need help to engage in that activity (see, for example, the examples of a blind person wishing to try mountaineering, and windsurfing referred to in CDLA/8167/1995). I would also accept, by extension, that unreasonably engaging in conduct which, for that reason alone, makes a person unable to cook or unable to eat for himself might mean that the inability to cook or the help needed to eat might not qualify under s.72 of the SSCBA. However, that unreasonable conduct or activity has to be measured against societal norms and I cannot see how seeking to work might be said to be abnormal and thus amount to unreasonable conduct or an unreasonable activity (save, perhaps, where the very act of working might endanger the person’s health). 


Clearly here for 'work' can be read 'reasonable leisure activities'.

It is not reasonable to say someone can cope, if they can during a day, wash, dress, feed, undress themselves - and nothing else.

To say that is reasonable is treating them as less than those that have committed violent murder, who are not solely allowed those activities.

Indie_Kid

My parents get some of my money to do the tasks I can't do. And then it's things like transport costs, (because my disabilities mean I don't drive; so I have to sometimes pay petrol money) ear plugs, elastic shoe laces, (I go through at least 2 pairs of shoes a year and it's not always possible to get hold of shoes with velcro, despite having small feet) wet wipes, nappy sacks, extra handwash due to having OCD, having to pay money to attend a group 40 miles away, (the local group isn't accessible and is free) coloured paper, etc.

bloolagoon

I think it's just personal. My son saves me money due to his mild disability. He doesn't go out or do anything. So I save on activities and clothing as he'd wear anything which many teenagers won't. He also doesn't eat much and so isn't a bottomless stomach like many growing boys.

He probably saves me £100 a month over a child with no disability.

He costs me time, he takes up more time than his sibling but not monetary.

Eg residential trip coming up and he can't go as school cannot staff the extra time he needs, if he was bothered I could go on trip and provide the care but he doesn't want to go so I save money.

It's just so personal which is why I think the blanket approach isn't the best way forward.

rogerblack

I am addressing the legal basis of DLA (and PIP). PIP adds the distinction of being able to reheat a prepared meal.
In my case, in addition, I have major problems even reheating food often.

Also, it is important to understand that the 'cooking test' of DLA/PIP is _NOT_ABOUT_COOKING_.
It is a theoretical calibration of disability that uses cooking merely as a concrete example of a common task. People with difficulty cooking are expected to have significant difficulties in day-day life to the point they are awarded DLA to in part pay for those. It is _NOT_ to pay for food, or the extra costs of disabled peoples food.

http://www.disabilityrightsuk.org/moyna-v-secretary-state-work-and-pensions-formerly-against-social-security-commissionerappellant2003

The cooking test is a theoretical one, “a thought-experiment, to calibrate the severity of the disability”. The test says nothing about how often the person should be able to cook.

“It involves looking at the whole [nine month] period and saying whether, in a more general sense, the person can fairly be described as a person who is unable to cook a meal. It is an exercise in judgment rather than an arithmetical calculation of frequency.”

Tigsteroonie

The latest item to be bought from our son's DLA ... a new curtain rail for his room, to replace the one he ripped down and broke during a severe autistic meltdown last week.

So, no, DLA isn't only spent on care costs - but on any additional costs that result from his disabilities