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Does Having Money Actually Help Parents Of Autistic Children?
A MyAutismTeam Member asked a question πŸ’­

I know this sound a bit unusual, but there has been so much talk about this very subject. In my opinion, it does not make a difference if you do not have a lot of money. I do believe that although people have not always spoken of autism, make no mistake that there have been children with the disorder and for those that did not possess great amounts of money, they still found a way to make it through. Having said that, there are those that say that resources and information is not provided to the… read more

posted March 5, 2013
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A MyAutismTeam Member

I would say that money does make a bit of a difference but it is not the whole story so to speak. I think most of the issues people have is with the insurance company they have and the state they live in. Most insurances offer little to nothing, and there are always limitations, therefore you have to try to get services from your state and from the government. What people need to realize is that if you live in a state with no state tax you are going to get very little from them because the state does not generate additional revenue. The other thing is that the southern states are light years behind the northern states.

If you really want to help your child you have to be very proactive and you have to fight for everything because no one is going to tell you what you can get and what you cannot get. The other thing is that I know this is not easy but if you have exhausted all options in your state you have to move to a state where you can actually get services. My wife and I did just that and it has helped more than anything we could have done.
To get services and SSI it does go by what your income level is, but if you have a diagnosis for your child you should qualify even at a base level, and then if you make more money they deduct from that amount. So in my case if I work a lot of OT the next month I will get less for SSI, but they never actually cut it off completely or even close to it in my case. Another thing about SSI is that while it is a federal program funds are different state to state. In my case when we lived in Florida we got $500-$600 a month for each of our two children, and in MA we get $700-$750 a month for each. I am the only one that works in the family by the way.
As bad as this may sound sometimes you are better off only having one parent work because the second parent will be working for nothing so to speak because the money that you lose is not worth what is made by that parent working. The other thing is that you cannot go out and buy brand new vehicles and a summer home either because that is going to count against you.

Just as an example of state to state differences, when we were in Florida we got the SSI but at a lower level, but all we got for therapies were what was in school during the day. We did get meds paid for by SSI and my company insurance as a secondary so we did not pay out of pocket. There were no summer programs or additional help and we did not qualify for food assistance or anything else.

In MA now we get Mass Health for insurance for the whole family and the kids both get SSI meds and appointments are covered in full for the kids and meds cost my wife and I about $4 co pay. My daughter is going into residential that the school system is paying for at $360,000 a year, but was getting ABA for three hours a day after school and Mass Health pays for her nutritional supplement drinks and her pull ups every month. DDS pays for summer programs, and also paid for an advocate when we needed one. I make the same amount of money as I did in Florida.

posted March 5, 2013
A MyAutismTeam Member

@All-all I can say is this, a father who was rich and was being interviewed on CNN about being a single dad of an autistic child and losing his house to a fire told the reporter that as much money as he had, the most devastating thing to the autistic child was having his comfort zone gone. The child loved living in the house and had all the comforts necessary to make his world of autism work for him and his dad. When the house burned to the ground, the child could not even be consoled. The father said buying another house may be easier for him because he was rich, but it did not change all the things he had been going through with the child such as meltdowns, sleepless nights, crying spells, withdrawing in school and not eating all due to the big change of not having the house. I never forgot this story and it started me on the way I was thinking about the haves and have nots.

posted March 5, 2013
A MyAutismTeam Member

@CBP-all you can do is be honest about how you feel. All of the things you have just said, my daughter said them which is why the entire family decided to pool our resources to help her with the twins. We have been doing this for 12 years. Some things were successful and others were not, but we keep trying whatever we can. I too have come across some terrible programs for autism in Illinois. One time I attended a seminar in Illinois and when I got there, multiple vendors had "special autism devices and machines" set up that were supposed to cure autism. One in particular I took issue with. It was a hyper-baric chamber and the sponsor believe it or not was Jenny McCarthy. She was speaking in one of the rooms and I really got pissed off because rest assured I have never met any mothers who said a hyper-baric chamber cured their child of autism. I am not sure why she would sponsor such a thing, but it really bothered me. Then there was the Southside Autism group who although had great outdoor activities for the kids, when they allowed those vendors to sell things they felt would help the parents of autistic children, I became angry all over again. Yes, there are those who would try and take advantage of us with their tricks of the trade, and this may sometimes come in the form of programs that will never benefit our children, but keep trying is all we can do to see if it works or not.

posted March 5, 2013
A MyAutismTeam Member

So I am as middle class of a single mother as it gets (my husband passed away last year with no assets no insurance). I make a decent living and have a decent amount of disposable income, but I have found that JW doesn't need money - he needs me. I have never been able to afford ongoing ABA programs - so I learned myself. I read books, I talked to parents, I paid for individual sessions with providers and watched intently and asked questions about why/what they were doing. His behavior is stellar these days in public and at home. If I can't afford it, I learn how.

Best example, after years of speech therapy both private and provided by state or school resources, they told us at age 6 JW would never speak. He couldn't even make the "mmm" sound on command, no functional verbal skills at all. 0. We bought an iPod and the P2GO app and started pushing communication that way. At age 8 I decided to try a therapy designed at stroke victims who had lost speech. My friend is a CNA so I went to work with her one day and watched (with permission) as patients underwent speech therapy.

I used those techniques on JW. 3 days later he made the "mmm" sound on command. He turns 11 this week, I can understand about 40% of what he says. He doesn't use any communication method at home, just verbal discussion and maybe writing it down if I just can't make it out. His speech is not perfect, but we have a lifetime to work on it.

You don't need money, you don't even need that much time - they just need you.

posted March 7, 2013
A MyAutismTeam Member

The short answer is yes. Money can do all of the things listed above. I'm glad some posters above have noted that even though you may have money, you still have all the heart ache, sleepless nights, etc and everything that comes with having children with autism. One of the particular things we get that ranks right up there with "they don't look autistic" is this one- "at least you guys have alot of money to deal with it" It cuts deep, and seems to undermine our struggle.
But that aside here is the bottom line, life is like eating a shit sandwich, the more bread you have the less shit you taste. But don't forget you're still eating shit.

posted March 7, 2013

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