Money for a disability...

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Well, the neurologist has advised me to try to get disability for my child. I am very short funded and her words were "I don't see any reason why you couldn't get it as long as you meet the income guidelines."

So... I started an application for him, and have an appointment. Writing down all the doctors/schools/specialists/evaluations/medication and what each was seen/used/indicated has left me feeling a bit like a "traitor". Writing down everything he has problems with and all, I feel just horrible about it all.

He's a great guy and I love the guy like mad and only want the best for him and a little extra money might be able to help me get some stuff for him I couldn't get before.

I just feel like a traitor for listing things that could be considered "faults".

I ask myself if he was missing a leg would I feel anything about it? But that is a physical handicap and his social/sensory/focus issues are much more personal I guess, I have no clue.

Anyway, kind of looking for comments or people to agree with me/bash me or tell me I'm being ridiculous. I'll let you know how the whole process goes for anyone thinking about applying as well.

You are not a traitor for attempting to get more help for your son.

It's all just as humiliating when applying for physical disability.

If you don't put everything down as it is at it's worst you might not get anything.

It might be worth getting an advisor to go over you application before sending it.

If you have to go to an appeals tribunal be sure to get an advocate.

People are often so busy coping they don't realise how many difficulties they are over coming compared to the average person until they have to write it all down.

I'm in Australia, I think things are slightly different here, however every time I have to fill out forms about my sons difficulties I always feel bad. He never fits all the little box's just right so he can and has ended up to any one else reading the information sounding almost ret*d. I know he's not but you know to get the help you need you have to fill these things out when the child is at his/her worst. Aspergers is a difficult one to explain to some people. It doesnt just effect one aspect of someones life it effects everything-depending of course on what is going on. Good luck. Just remember your doing this to help your child, you have just as much right to financial support as the next person. If he were missing a leg, you wouldn't feel bad because everyone else can physically see for them selves his difficulties, your right though his issues now are a bit more personal, because your probably the only one to see them all you probably (as I did) feel like you have to explain and justify all that you can see that isnt obvious to the rest of the world. Your not betraying him, your acknowledging him.

My assessment when I was 14 made me sound ret*d, and it wasn't worth it, because I didn't need help anyway.

It wouldn't be to help him directly, it would for the most part help me keep the electric and gas on. So it would help him that way, I guess. Things are really tight around here and I think I just need to use what may be available.

My appointment is on the 26th.

But it does help him directly. If your son has sensory issues, say doesn't like wearing lots of clothes (I know of an Aspie mum who's son just like to wear a nappy, or nothing at all, I don't know if your son is like that), or even if your son just doesn't like to wear lots of layers to keep warm, then to avoid sensory meltdowns you need to keep the temperature in your home regulated to a comfortable level for your son. And there's also the fact that if you're at home, or if he's at home a lot of the time, when other children might be in the garden playing relatively safely and not closely supervised, or going round to friends for playdates, then because families with children with disabilities are often more homebound, they will have higher running costs for their home, for gas and electric, than other families who have more flexible lifestyles and don't have such intensely restrictive caring needs.

You may also need to have heating on to dry clothes on radiators, or perhaps use more electricity for a washer/dryer. Many children on the spectrum are more likely to be enuretic or have problems with bladder control till a much older age than NT children, so even though you may not realise it, you may have a lot more laundry to do than parents of a similar aged NT child (I was enuretic, on and off, till the age of nine, for example). It may be that your son likes to wear the same clothes all the time, so you might use more electricity washing and drying overnight while he's sleeping, or perhaps he can't stand getting the slightest bit dirty and needs lots of changes of clothing, or he might like rough and tumble play, and get quite dirty. Some people on the spectrum are OCD-ish and more obsessed with cleanliness and hygiene so you might need to bathe/shower him more often, using more hot water, which costs more to heat.

I don't know what his eating habits are, but for example, does he like the same foods cooked the same way, is he a 'creature of habit' in that respect? If he likes a cooked meal every day at a certain time, and you can't get away with perhaps making him a sandwich or giving him salad that doesn't need cooking, then there are potentially extra costs associated with cooking you might have to do in order to avoid a 'disruption to routine malfunction does not compute' i.e. meltdown.

You might have some difficulties with using public transport, and you might have to either run a car and meet the expense of buying, maintaining, insuring, fuelling a car, or maybe use taxis, which are more expensive than buses or trains.

Those are just examples that I can think of that might be additional expenses incurred. And you shouldn't feel guilty or feel I need this money to pay household bills, what additional expenses do you have that *do* directly relate to him, which mean that your overall household budget struggles to cover the utilities? I'll bet there are things that you do prioritise directly for him, which come out of your available budget, that mean you're juggling the rest of your finances to meet the utility bills. I think you shouldn't think of it in terms of it doesn't directly go towards him, it does, it goes directly towards maintaining a safe and secure and comfortable environment in which you can raise him. Alternatively, don't think of the extra money as going towards paying gas and electricity, think of your previous, inadequate, income as covering gas and electricity and the extra money going towards clothes for him, or educational/therapeutic games toys, or occasional special treats.

I think EnglishLulu makes a lot of good points. Aspies are more expensive to raise I think. And you may not be experiencing that yet but as he gets older you may. As an adult Aspie I see I have extra expenses that other people don't have. Like with being allergic to so many things I have the expense of allergy meds, inhalers, HEPA filters, dust covers for pillows. Then there's the cost of special organic lactose-free milk, lactaid pills. Not to mention the germaphobia is expensive for buying lots of antibacterial wetwipes to take with me to restaurants and the laundry mat and other weird things like that. Plus I have sensory issues that require blackout curtains on the windows which cost a small fortune, plus disposal earplugs to sleep in and keeping the place warm because I have sensory issues and will stim if cold. The list could go on and I think the list gets bigger the older we get.

I hated seeing all my son's "shortcomings" in black and white in his IEP. The paperwork focuses on the needs, not the gifts, and that onesided view can be very hard to swalllow. I am not surprised you are feeling that here. I guess the best to do is stay focused on the goal. If you believe in the goal, what it takes to get there is just process.

I've always been sure my son wouldn't qualify, but if your son does, it means you will need the extra funding. Make good use of it and try not to dwell on the difficulties of the path.

I did go to my appointment. Gave them all the information they wanted, got home, reported the inaccuracies, as I was instructed. (they had the 2 year old in school and said I didn't have a bank account though they made copies of my statements.)

They will get back to me with their answer within 107 days of when my initial appointment was. What is that? 3.5 months? Something like that.

Couldn't find child care, (though I admit I didn't look very hard.) The 2 youngest did okay there, they are well behaved children, all mine are really. (Everyone tells me so, even when they are bouncing around and trying out every chair in the waiting room. haha) The poor 2 year old fell off the chair and smacked his head on the desk. Poor guy has a purple stripe across his brow still. (Nothing a mystery flavor dumdum from a lady at another desk couldn't cure though.

it's very hard to see it all written down on paper.........it becomes second nature to overlook their more milder difficulties. but when it's all written down, you can't do anything but face the facts.

it is going to be a painful experience but you need the money. cringe. cry. grind your teeth, but get that disability money for your child. you sound like a great mom. he is lucky to have a great mom like you!

We have had our application Denied. He has his first "behavioral clinic" appointment within the next 2 weeks, so I will talk to them about it. If they say to pursue it further I will take a copy of their "findings" with me to my next appointment.

If not, hey, it was worth a try.

sorry to hear it was denied.....hang in there