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cinlewis
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PostPosted: Fri Dec 14, 2012 11:20 am    Post subject: Do parents of autistic children get disability SSI? Reply with quote

I know a single mom who gets over $500/month social security disability because her 6 yr old daughter is autistic.

She's high functioning and I've spent a lot of time with her and the only impact I see from her autism is that she rides a special short schoolbus to the public school which involves no extra expense, and she tends to throw a tantrum when she doesnt get her way, until you make her understand she isn't the only person in the world. It's beyond me what that SSI money is needed for but she claims his special needs has made her sacrifice her career to spend more time with her daughter but I just don't see how. (except that she might require a more patient after school babysitter if her mom were working)

Do other parents of autistic children get SSI disability? And why is it needed?
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Cornflake
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PostPosted: Fri Dec 14, 2012 12:18 pm    Post subject: Reply with quote

[Moved from General Autism Discussion to Parents' Discussion]
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PostPosted: Fri Dec 14, 2012 12:19 pm    Post subject: Reply with quote

Since parents try to mainstream their kids if at all humanly possible, the fact that the child is riding the short bus clearly indicates she has far more challenges than you have yet noticed.

The "tantrums" are far more likely to be meltdowns than an attempt to impose her will.
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PostPosted: Fri Dec 14, 2012 12:25 pm    Post subject: Reply with quote

She probably gets the kids SSI, not her own. You don't get disability for taking care of someone.

As for the kid, she may have more problems than you can see on the surface or they could just be getting SSI because they can. People do it for many reasons. My son could get it because he's deaf in one ear since birth but he doesn't need it and is against getting it, so I respect his wishes and I've never filed for it for him. It doesn't effect him really.

BTW, what kind of a first post is this anyway? You're not likely to make many friends here with it.
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PostPosted: Fri Dec 14, 2012 12:27 pm    Post subject: Reply with quote

i get ssi at 740/month because iam i unable to work and hold jobs. I am 23 and have aspergers, adhd, and some other mental and physical problems. I also get food stamps. I do hope to be successful one day however. I would like to go to grad school soon to become a psychologist and hold a career doing so despite not being able to hold any other jobs. I did graduate from school.
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Wandering_Stranger
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PostPosted: Fri Dec 14, 2012 12:47 pm    Post subject: Reply with quote

OliveOilMom wrote:
She probably gets the kids SSI, not her own. You don't get disability for taking care of someone..


In the UK, you can get a benefit for caring for someone. Is that the same in the US?

OP - I wonder how much really you know about this child's needs? You won't see the sensory overload, the various social / interaction / communication issues, the child screaming because someone has changed their routine with no warning. (which could be another the cause of their "tantrums")

Some people with Autism also have other medical conditions, which you may not know about.
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PostPosted: Fri Dec 14, 2012 1:28 pm    Post subject: Re: Do parents of autistic children get disability SSI? Reply with quote

cinlewis wrote:
I know a single mom who gets over $500/month social security disability because her 6 yr old daughter is autistic.

She's high functioning and I've spent a lot of time with her and the only impact I see from her autism is that she rides a special short schoolbus to the public school which involves no extra expense, and she tends to throw a tantrum when she doesnt get her way, until you make her understand she isn't the only person in the world. It's beyond me what that SSI money is needed for but she claims his special needs has made her sacrifice her career to spend more time with her daughter but I just don't see how. (except that she might require a more patient after school babysitter if her mom were working)

Do other parents of autistic children get SSI disability? And why is it needed?


I do not, yet, but I do plan to look into it. I have three kids on the spectrum, and have recently become a single father. Taking care of the three of them as well as household chores, errands, helping with homework etc. etc. There is no way on earth I can possibly work full time, or even half time, and take care of their needs. It's exhausting, and taking a toll on my health.

A "more patient babysitter" isn't an option. Been there, done that quite a few times. Finding people around our area who understand how to deal with Autistic kids is like looking for needles in haystacks, and the needles aren't there. Those who do know how to deal, already have autistic kids of their own.

Please don't judge people unless you've been in their shoes. Spending "a lot of time" with an autistic child doesn't even come close to actually being their parent.

If you haven't been through it, you have no idea.
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PostPosted: Fri Dec 14, 2012 3:38 pm    Post subject: Reply with quote

OP, What you are seeing with this child is likely to be the tip of the iceberg. The fact that she rides a special school bus suggests to me that the child is not as high functioning as you think (although obviously regulations are different in different areas). You have no way of knowing what the mother is dealing with at home, especially as some kids act differently in different situations. Perhaps coming out of the house going on the school bus is one of the things she copes well with. Perhaps the Mum has been up from the crack of dawn, to ensure that her daughter got ready in time for school (that's if she got to bed at all).

I have an easy life compared to many parents of kids with autism and, even so, life is very stressful and everything takes ten times longer than it would do with a child who didn't have my daughter's issues. I'm in the UK and my daughter has recently been awarded DLA (Disability Living Allowance), at the minimum levels, for care and mobility. She's very high functioning, but she has a disability, which impacts on all areas of our home life. The amount she gets is not very much and certainly not a replacement for a wage.
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PostPosted: Fri Dec 14, 2012 4:29 pm    Post subject: Reply with quote

The OP reminds me of a few (including my own mother Mad ) who both claim I shouldn't be on DLA. Neither have seen me have a meltdown, or be in so much pain due to too much noise or light or the issues with my physical disabilities.
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PostPosted: Fri Dec 14, 2012 10:42 pm    Post subject: Reply with quote

OliveOilMom wrote:


BTW, what kind of a first post is this anyway? You're not likely to make many friends here with it.


You got that right.

My daughter is mildly affected and probably appears "normal enough" to most people. Heck, she doesn't even qualify for the "short" bus. But it is a career wrecker. When my daughter was younger, she had countless hours of therapy and someone had to take her there. I couldn't work full-time. Couple that with all of the extra school meetings that parents of kids on the spectrum invariably find themselves at, the fact that we need to be able to leave work at the drop of a hat if issues arise, the stress from caring for a child that can be unpredictable, the emotional drain you experience from watching your kid struggle, and it is easy to see how it is difficult to be taken seriously at work.

To be honest, you sound like an angry, bitter, judgmental person from your post. If you were standing in front of me and said that my daughter
Quote:
tends to throw a tantrum when she doesnt get her way, until you make her understand she isn't the only person in the world.
I would seriously have a hard time resisting the urge to spit in your face and I am a calm, hard-to-provoke person. You clearly have no idea what it is like to care for someone on the spectrum, let alone what it is like to be someone on the spectrum.

If you are not an angry, bitter, judgmental person, perhaps you ought to take some time to reflect on why you are so concerned about whether or not this family deserves assistance and why it makes any difference to you whatsoever. This little girl and her mother did not ask to have the difficulties they have to face. Ignorance from people like you is perhaps the biggest difficulty of all.
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PostPosted: Sat Dec 15, 2012 2:52 am    Post subject: Reply with quote

My sister has friends who get SSI for their disabled child. For them, it is the bridge between what they could afford on their own, and the extra care the child needs. None was ever used for room, board or clothing; it was all used for the extra care costs. In that vein, autistic children can require all sorts of expensive therapies that SSI can be used to fund. I would assume that no two situations are alike, and that there is no simple answer to the question.

We don't get anything, and I am sure we would not qualify for anything. We can afford the things our child needs, even though it certainly has meant forgoing other things. The families I know locally are all like us; doing it on our own. But let's be clear: we CAN.
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PostPosted: Sat Dec 15, 2012 4:55 am    Post subject: Re: Do parents of autistic children get disability SSI? Reply with quote

cinlewis wrote:
I know a single mom who gets over $500/month social security disability because her 6 yr old daughter is autistic.

She's high functioning and I've spent a lot of time with her and the only impact I see from her autism is that she rides a special short schoolbus to the public school which involves no extra expense, and she tends to throw a tantrum when she doesnt get her way, until you make her understand she isn't the only person in the world. It's beyond me what that SSI money is needed for but she claims his special needs has made her sacrifice her career to spend more time with her daughter but I just don't see how. (except that she might require a more patient after school babysitter if her mom were working)

Do other parents of autistic children get SSI disability? And why is it needed?



I never got any as a child. I assume it's because my parents made too much so they didn't need me on it and I am sure their health insurance paid for my appointments and therapies and my medicine.

However, my dad's cousin thought I was spoiled and thought my parents let me get away with things and let me have my way when that wasn't the point. I was also the child who threw fits and had "tantrums" when things wouldn't go the way I expected or as planned or when there be surprises or interruptions. My parents just called it anxiety and my dad would tell me I was getting too excited. My dad's cousin also thought I was rude and anything I said was wrong for her. Everyone else in the family just ignored my behavior and she was the only one who was sharp with me and made a fuss about it. But my uncle had a problem with her too and so have my parents so it wasn't just me with the issue, it was her. No matter how mild it is, you don't have a clue how hard it is living with someone with it. You can't always see autism just by looking at them or seeing them for a short bit or for a visit and sometimes you have to live with them to see it.

I also rode the short bus and I went to a special pre school because I was speech delayed and then I rode one in kindergarten and first grade and beginning of second grade and I wasn't supposed to because I was supposed to be in regular ed. But no I was stuck in special ed full time because of my speech delay. Mom also quit her job to be a stay at home mother and she worked with me so I grow up to be normal. It wasn't just autism she was dealing with, I had severe ear infections as a baby and lost my hearing and then was speech delayed, even after I got my hearing back so mom had to work on my speech to teach me how to talk and form the words. But yet I seemed like a normal child and you may think I was a brat. That is what some people viewed me as.

But at least the girl calms down after she understands she isn't the only person in the world. The mother may want her to grow up to be normal and the only way is if she spends all her time with her working with her so she grow up to live a normal life and have an easier life. A child doesn't learn on their own without help when they are special needs. It doesn't hurt to do the work yourself instead of relying on therapists only to do the work for you. They can only do so much because they can't spend all their time with your child because they have other patients to work with and have their own lives outside of their job so the parent has to do the work themselves if they want their child to get better and live a normal life and be a successful adult.
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ASDMommyASDKid
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PostPosted: Sat Dec 15, 2012 5:33 am    Post subject: Reply with quote

I am assuming the OP is looking for some kind of validation that this family is some kind of mooch on society. <sarcasm> Nice... </sarcasm>

We don't get any SSDI assistance, but it is nothing for people to feel ashamed of.

Even if they have insurance, there are copays and deductibles for therapies; She may have meds, special anesthetic/dental costs if she needs to be put under for dental appointments if she can't stand dental work. There are therapies and costs that insurance won't cover. There are special things that sometimes have to be purchased for sensory input, home practice therapies, not to mention books for parental education for behavioral strategies, books that help children learn things in the way that their brains work. Sometimes kids need things to help them communicate, etc.

It does not sound like you know these people well at all, and are making assumptions based on how "normal" you think she looks.
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PostPosted: Sat Dec 15, 2012 5:55 am    Post subject: Reply with quote

Pretty much the same as in the UK, we're being fed the line that benefit claimants are all frauds and being encouraged to rat on our neighbours. But the fraction-of-a-percent who are frauds will know how to jump through the hoops and play the game, it will be the genuinely needy who are caught in the crossfire.

There are all sorts of disabilities which are unseen, or less visible to a casual observer. You meet the person on a good day and they may be able to go into town, get their shopping, visit a friend, share a joke with you. You don't see the bad days when they can't leave the house due to physical pain, can't face seeing anybody, can't leave their bed due to anxiety or depression... because they aren't out in public view on those days! And even on the days when they are and seem okay, we don't know how much therapy etc. it is taking to get them there. Or how much physical or emotional energy that day out in public will take out of them and how long they will need to recover from the exertion.

Someone might seem absolutely fine for 9 days out of 10, but maybe they can't hold down a job as that 10th day is so severe they are incapable of working on that day and an employer isn't going to have patience with someone who can't work 10% of the time.

There should be no shame whatsoever in honestly claiming any help you are genuinely entitled to recieve. That is why the benefit system is there. It's to protect the vulnerable who need help.
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PostPosted: Sat Dec 15, 2012 7:17 am    Post subject: Reply with quote

I get a 'carers allowance' for my son - it's a minimal amount - about $60 a week.
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