ssi, disability

We applied for SSI for Bede last year. I can’t remember if I blogged about it at the time or not. For those who don’t know what that is, SSI stands for Supplemental Security Income, and it’s much like Social Security Disability, except it’s for people who have never paid Social Security taxes and is funded from the general federal budget. So, in a general sense you can think of it as being like SSDI, pretty much.

Anyway, we found out today that he was approved for it. It maxes out at around $640 a month, and we don’t yet know how much he’ll receive. We plan to immediately begin using it for at least monthly occupational therapy (he’s never had any because we couldn’t afford it) and more frequent visits to his psychologist. All of that will depend on how much his payment is, which will be dependent on our income, which we have to update for the SSA. Clear as mud?

I have some interesting feelings about the whole thing. I’m VERY happy that this money will be available to Bede. I know he will really benefit from OT and seeing his psychologist more often. But at the same time it is a heavier yoke to bear for me as I am reminded that my son is considered disabled. Even the gummint thinks so. Myself, I forget that he is. It sounds silly that I could live with this little naked boy who cannot really speak and forget somehow that he is, but I do forget it.

I don’t think of him as disabled. Impaired, handicapped… sure. But not disabled. I just don’t think that’s what he is.

Ah me. Ran out of steam, I think. In the meantime the ABFH has a post on a similar topic, here. She’s more eloquent than I. She didn’t have a 22mo clinging to her leg or trying to reboot the computer, no doubt.

Now that there’s a handicap.

7 thoughts on “ssi, disability

  1. That’s great!!!
    If it wasn’t so late I’d call to jump up and down and holler, but here it is an hour past my bedtime.

    I know what you mean about the ambivalence, however, I see it as what a meaningful society does to help all it’s citizens. Getting Josh on the waiver program was hugely beneficial and he was 12! We’ve seen so much improvement over the past year, and we have another year to work on issues. I just wish we could have exchanged him for Breanna.

    I’m so glad for you!

  2. Okay, me again.
    Improvement sounds demeaning. Like he was a oil painting that never quite got finished.

    I should have said more like, he has received many more of the supports that he desires to be able to function in society as it is presented to him. He is happier and is more capable of dealing with the world in all the ways that it veers from his own logical routine and expectation. Does that sound better?

    Thanks for letting me correct.

  3. OK, you know me pretty well, and I think you trust me.

    Me? I use the word disabled. A lot.

    Argh… I have a five month old wanting to to nurse and a nine year old wanting to use the computer, but I’m going to spam you with disability-studies links. Seriously.

    Handicapped? Impaired? No… I don’t necessarily think he is. But disabled? Probably. Google (or wikipedia) “social model of disabilty,” and look at a couple of the links on my page. We’ll talk more about this when I have some time, and you do too.

    Wishing you and yours all the best… I just had a HOLIDAY party. For reals. I have to post about this, it was intense and interesting.

  4. Glad that’s settled. Do understand how it’s hard to need to classify him as such to get there though. I”m dragging my feet on getting the appt to put in the MA waiver for C.

  5. Thanks everyone.

    Hala I absolutely want to talk more with you about this (and yes, you are spot on I do trust you very much!) I talked briefly to Sean about it and he seems to be more comfortable than I with the notion. He says it’s sort of arbitrary and then he said some other smart thing but Gilbert started hollering about something and that was it.

    I will read on social model of disability, definitely. I want to be Bede’s greatest advocate as I’m already his number one fan, yk?

  6. Phoebe-

    Here are some disability-studies sites. You might enjoy taking a look at these, they give great definitions of the Social Model:

    Here’s a quote from Lady Bracknell’s blog (she’s awesome) explaining the Social Model in real terms:

    “Traditional/Medical Model
    John can’t get into this building because he’s in a wheelchair.

    Social Model
    John is a wheelchair user. He’s disabled by the fact that this building doesn’t have a ramp or a lift.

    There’s no point in inviting Susan to this meeting because she’s deaf, so she won’t be able to contribute.

    Susan is disabled by the fact that the room we’re holding the meeting in doesn’t have an induction loop.

    Damon can’t use this website because he’s blind.
    Damon is disabled by the fact that this website doesn’t meet the legal accessibility requirements.

    Linda can’t be given a job on the reception desk because she’s not what our visitors will want to see.

    Linda is disabled by people’s attitudes towards facial disfigurement.”

    So, using this as an example, we could say:

    “Bede is disruptive and shouldn’t be brought to the SCA event because he’s autistic.”

    OR (social model)

    “Bede is disabled by the fact that the chatelaine didn’t consider the possibility of special needs children attending this event.”

    Am I being clear? Nico is on the boob right now… he ate a lemon tonight. Seriously. A lemon. That’s MY kid, there… I swear I lived on lemons and cider vinegar for my first four years. Sour things rule.

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