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Autism Financial Advice for Parents?

February 22, 2007

boy with autismI have a 4 year old child with autism. My husband works full time. We have health insurance but the only thing regarding autism they will cover is 4 yearly visits for a speech therapist. I tried working but ended up minus because of paying for in home sitters (no daycare will accept him not potty trained with his health issues, etc.) I applied for SSI and was approved but later denied (my older child turned 18 and is still a student).

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Our take home pay is $1800 monthly for a family of 4. My husband pays $600 child support for an older child, plus medical. My child is in a preschool but he needs so much more. After bills and buying all the things we have to have (diapers, medication, etc.) there is only a few dollars to stretch out over the month. Any suggestions or advice would be wonderful.

JM from Grays Harbor County, WA

Answers

February 22, 20070 found this helpful

I looked around and found some resources, The first is nat'l but the rest are local to you. They should be able to get you an advocate to help you get the ssi you need. So good luck.

www.nationalautismassociation.org/helpinghand.php - 1500.00 grant possible

www.autismrecoverywa.org/

www.featwa.org/programs.html

www.autismsocietyofwa.org/

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www1.dshs.wa.gov/.../ - local government for you, best bet.

 

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February 23, 20070 found this helpful

Here in CA the schools are required to pay for free speech, audio and developmental testing before a kid is even in school (if the parent requests it and knows about it), they'd rather be proactive. Also, here in CA it is a right for all parents to have their children schooled, no matter their disability, it's a long process at times but you must be VERY deligent and PERSISTENT, be a squeaky wheel. Look into WA state statues for school, as far as I am concerned (I've been through this with a bi-polar child) if you were here in CA I would say call the school district right now and get the ball rolling.

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Your child is guaranteed an education (that includes making a child ready for school and then help when they are in school).
P.S. Good luck and good for you, for looking for help. Children who are special need us parents to be their VOICE, NEVER EVER stop doing that for them!

 
By rae ann (Guest Post)
February 23, 20070 found this helpful

My 48 year old brother has Aspergers Sydrome. High level autism. He was denied years ago for SSI, but we didn't realize that you don't accept the denial, you just keep fighting it.Now he has disability benefits of around $900 a month I don't know your situation with the 4 year old, why you would be accepted and then denied. My daughter is a Special Ed teacher and she told me how to work with the system. If you would like to contact me at my regular e mail address, raeannn AT hotmail.com, i could try to get further info for you.

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We went through our local Tri-counties organization in central California to get the medical help needed to certify that he is autistic and they were wonderful. I also agree with working with the school system. One of my other daughters' is a speech therapist and a good many of her clients are low income autistic children in early intervention.

 
By Amy (Guest Post)
February 23, 20070 found this helpful

In Indiana they have SSI, Medicaid, and a really cool service called Children's Special Health Care Services. It took over where Medicaid stopped when we began making "too much money." They paid for all my son's therapies, glasses and such. Check into something similar in your state. On the SSI, don't accept no for an answer. Keep going, and bug the tar out of them! Keep fighting for your son. Work with the school system, and find other moms who have older autistic kids in your area. They may know about some resources that you don't know about. And always be polite. Firm, but polite!

 
February 23, 20070 found this helpful

I would recommend you to go to your local social services (DHS) and see if he qualifies for better insurance or other benefits. I would also retry the SSI.

 
February 23, 20070 found this helpful

apply for disability for your son. at first they like to deny you but appeal it!! and your husband can go have that childsupport lowered, we did.

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don't give up. fight for it. GOD be with you

 
February 23, 20070 found this helpful

Definitely try social services again or ask your Dr for info, or look in the phone book (or on web) for Childrens Specializeded Services (or what ever it amy be called WA). Another service we have here in NJ is called DDD (Division of Develpmental Disabilities) They provide money needed for any services your child may need. Retry SSI too. If your income varies each month, you may still qualify..keep fighting for it. It seems they deny you in hopes you just give up and stop trying. I dont knw what kind of preschool your son is in, but our public schools provide a preschool for the develpmentally delayed/handicapped and they bus them too and from school and its a full day porgram, all services provided..

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free. Another thing you can do is contact your local public school and ask if there are any parent groups for children with special needs. (I am in one myself) and they can provide you with so much info as the majority of the children have autism. Heres some more links:

www.asbergersyndrome.org

www.autism-society.org

 
February 23, 20070 found this helpful

thank you everyone for all the help! to add a quick note. my son was approved for ssi but at my appt to agree to every thing ect.. the social security worker realized that my daughter had turned 18 on the day he was approved so thats why it was approved and then denied. we tried to get child support lowered but the courts stated the 16 yr to whom my husband pays support has presidence over any other children and my husband was told to stop using his childs disability to get out of paying (they always go off gross income) again thank you to everyone

 

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February 23, 20070 found this helpful

i would talk to every one you can. the teachers at the public school where he would be going, speech therapist etc. in baltimore we have a program called child find. they seek children who are autistic etc. keep asking for help. no one else cares as much about your child except you. the more early intervention he gets the better.
sandy sheep1 AT yahoo.com i work in the public school system here as a teachers aid in the autism classroom. feel free to contact at email above take out the spaces.

 
By rae ann (Guest Post)
February 23, 20070 found this helpful

I wrote earlier about my brother who has Aspergers. I mentioned your situation to my daughter. She is actually a Special Ed teacher in Washington and worked with blind children. She is working out of her home in Lake Oswego, Oregon currently. But she knows the ropes and said you are entitled to free benefits for his early intervention and kindergarten and so on, just like in California.

 
February 23, 20070 found this helpful

Check with your public schools. Many have programs that start before kindergarten. Once your child starts school, make sure he is designated "special ed" which sounds really negative but it actually means that the school, BY LAW, has to accommodate your child's needs and provide assistance such as speech therapy. Look up IDEA law on the internet when you get a chance.

 

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February 23, 20070 found this helpful

Hi Jan,
My grandson has been working with depts.washington.edu/.../
His progress has been extraordinary. He started with them when he was 2 and it has really made a big difference (he's 4 now). They work with him on diet, too.

You could call there and see if they can advise you on any help. I realize that Seattle is a pretty long trip from Grays Harbor but they may have some clinics closer or at least be able to help you get some information on help available closer to home.

About the SSI, if I were you I'd look for an attorney to help with your claim. Most of them work on contingency and if they win, you both get paid, if they don't, it's no loss for you. If they do win, you will get back pay from the time of the original claim.

Susan from ThriftyFun

 
By JMRoss (Guest Post)
February 25, 20070 found this helpful

Get a lawyer who specializes in SSI & Disability. I tried to get Disability for my son who is very AHDH and was denied, but told another woman whose kid was much worse then mine to apply and she got it for her son. A lawyer will know more.

 
By Suzie (Guest Post)
February 26, 20070 found this helpful

I have 2 ds on the Autism Spectrum. One thing I wanted to point out is that you shouldn't be paying for is diapers. Your insurance will probably cover their costs. Medicaid and Insurance are supposed to cover diapers for anyone who is over 3yo. It is worth checking out. I know how expensive diapers can be. Hang in there. They do make progress. It is just takes a lot more hard work.

 
By Amanda (Guest Post)
March 9, 20070 found this helpful

First of all, get social security lawyer and file a dispute. That is what I have been going through with my son. Since your son has a disability and minus the CS that your husband has to pay (my husband pays about 800 a month) your son may be able to qualify for medicaid. Also get in contact with your local Board of MRDD and CHMC. They can refer you to different programs that may be able to help you with finances, speech and OT ect.....

 
By Jenny (Guest Post)
November 19, 20070 found this helpful

My son is also 4 and he has autism. We live paycheck to paycheck and therapies are never enough, atleast not enough hours that he deserves. He goes to a pre-k program at a elementary school and has an IEP, but to actually get someone to come and work with him is impossible. We pay completely out of pocket on ABA, music and social therapy that amounts to the cost of a house payment a month. We were approved for SSI and then denied because of my husbands income. We are right between the lines:made too much to get any gov't help, but after overtime and volunteer Saturdays we are pinching pennies to pay for the little therapy he's recieving. I'm searching the web, looking for any financial assistance or grants that apply to him. If you have found anything-please pass it on. Thanks

 
By Hello (Guest Post)
June 12, 20080 found this helpful

My heart goes out to you. I have a 9 year old son, whom his elemetry princable and teachers were great but wanted to do as little as possible including testing, When he got into 3rd grade which was this past school year that just ended, he was on a different campus with a different principal whom said something wasnt right (which is what I have been saying all along) and was able to get all the testing done and got my son diagnosed with autism back in Feb. of this year at 9 years old. I am going through the same thing as you and am not sure as to how to get the help, thankfully he is on medicade, but I am told that there is a different medicaid for disabled kids than the regular generic medicaid. I did not know that he could get on ssi, so thanks everyone for letting me know that yes he can get on ssi.

 
By Jennifer (Guest Post)
July 8, 20080 found this helpful

Hello If it is your 4 year old that is wearing diapers, you might contact a company named JMAR, I know that my son is in pull ups and 2 packs of wipes, and the this company is really good about working with his insurance. They send us 8 packages every month the first week of every month along. It is not very much but is something you wont have to worry about or have to worry about going to get them since they are delivered to your door by UPS at no extra charge. Every little bit helps. And I hope that this helps even just a little.

 
By Sarah (Guest Post) (Guest Post)
July 29, 20080 found this helpful

My bad, I meant the Autism Society of America, not the ASPCA. When you have an autistic child and a two year old to boot, you kind of forget where your brain is. LOL, my husband was watching the animal planet while I was typing the post. I hope I did not confuse or upset anyone. I hope you will find humor in it, because despite my problems, I have.

 
By jackie (Guest Post)
September 7, 20080 found this helpful

Apply for the Title XIX waiver or the MR/DD waiver through you state. Google it. It is a process- but it saved our family.

 
By happycube (Guest Post)
September 30, 20080 found this helpful

Would anyone happen to have information for the State of Texas regarding our children with Autism. My son is 16 and has been denied SSI, 2 times, because our household of 3 makes too much money! Any information would be greatly appreciated.

 
November 6, 20090 found this helpful

This is unrelated to the topic but I saw several posts including info that your child is not potty trained. I bought several books and none were helpful.

When my son was about to turn 4 he needed to be potty trained to attend his preschool. If I put underwear on him, he would hold it for hours like 8 plus. Since he is such a visual learner. I asked my sister to video my nephew (6 months younger than my son) going potty. (I know that may sound strange, but video helps so much with anything I want to teach him that I knew this would help too, plus you can just delete right off the camera once he has seen it a couple times).

My son watched it once and went right to the toilet and stood there ready to go! He didn't go but it was a step in the right direction. The next step was that my husband and I actually had to force him to stand up in the bathroom because he would have to go so badly and he would just sit on the floor to try to get rid of the sensation. He had great control. He cried but we forced him to stand. He couldn't hold it anymore and he went in the potty and has ever since.

Over the past year he only had one accident at school. As a special positive reinforcer, we placed a bubble machine on the back of the toilet and turned it on for a couple minutes each time he went potty. I still remind him but he usually goes on his own. Going number #2 is still a little bit of a challenge, reminding him to go but he has no problem sitting on the potty. I know it was totally off the topic but I've shared this with others and it has helped. Hope no one minds.

 
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