really need some help asap

Christi - posted on 08/22/2010 ( 27 moms have responded )

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my son was diagnosed with mild autism or pdd two days ago and while it really shocked us, we are trying to get him all the help he needs. our insurance is self funding which means they don't have to cover his aba therapy. my son is enrolled in eci and a treamtent center i talked to today said that they have to cover his therapy. is that true?

my next question is how do i apply for medicaid, what will we have to pay for it, and what all will they cover for my son and how much will we need to pay for his therapy? we are literally barely scraping by and now since he is going to require therapy almost daily, i will not be going to work anytime soon. if we apply for medicaid, can we also receive social security diability checks or is medicaid all we can get and if he is on medicaid does that mean that he can no longer be on our insurance? i am really confused and need some answers fast so i know what course of action to take to ensure he gets the help he needs asap. he is 20 months and we live in dallas, texas if that helps any. thank you!!!

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Domonique - posted on 10/15/2011

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This is good information, I live in Alabama and I have no idea how to get help. I went thru special educatikn preschool. They dont help much he doesnt get speech or ot thru his I requested it. I take him 40 miles away for those services for 45 minutes 2 times a wk. He has autism and alot of othet medical stuff so there are lots of problems. I am gonna take him out of school cuz he learns more from my one on one.

Lisa - posted on 09/01/2010

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I have applied for SSD several times and was told we made too much money and we needed to wait till he is 17 yrs old to try again since he will probably never be able to work. They also told me that he is not elgible for Medicaid because we have private insurance (BC/BS). We have received NO help from the government. We were able to get him 6 months of early intervention due to finding out late of his autism. And he gets speech one on one twice a week plus everyday in group sessions for him being non-verbal. He also has sensory issues which if he smells something that makes him naucious he may throw up. The school wants to send him home everytime he throws up. I have given them a letter from the doctor stating about his sensory issues and they still call when he throws up.
He has outburts and tantrums at times if someone sets him off. The teacher complains. What does she think I'm going to do. I'm at work and I don't know what set him off. That is her job to figure that out. I think they have too many kids in these special needs classes to each aid. Our ratio is 4 or 5 to 1. That is unreal. Sorry I got up on my soapbox today.
JC does not get ABA therapy due to where I live there isn't anyone to teach him and we can't afford to pay someone anyways. Alabama is not a good state to get help. They do the minimum if you don't know your rights.
Sorry for the ranting. I hope everyone has a great day.

Tina - posted on 08/28/2010

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I mentioned Brent Woodall foundation in an earlier post-I should have also mentioned that ECI DOES pay for ABA. they paid for my son't ABA until he turned 3. BWF takes care of all the billing through ECI.

My son was also on SSI for a few months...then they told me that I didn't qualify on the income, even though I am a single mother of 2...weird. But they count child support that I am NOT getting. it stinks. Of course when I stopped getting the SSI, the medicaid went away also. I currently have him on CHIPS.

Tabatha - posted on 08/28/2010

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You can apply for disability for him and once he gets that he will get a medical card, which in my state has paid for most of his services. But, you cant just apply for medical, you have to apply for both. You apply at your local social security office. I have saved every paper the doctor gave us. They approved him pretty quick.


Currently my son also gets services at school. I would look up some autisms sites, they usually have alot of resources!! The doctor didnt give you any info on resources or programs avaliable in your area.

Martha - posted on 08/28/2010

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Your county school system should be able to hook you up with schools that are strictly for special needs children,I live in Md. our schools have an infants and toddlers program that my son went to when he was your sons age. My son is 11 years old and he has severe Autism and some retardation. He goes to a publicschool for special needs children in our county. Check with your public school system they should have the different therapies your son will need. Iam asingle parent and I don't know what I would be doing if it weren"t for the public schools here and our special educators. My 14 year old daughter is in specialed at our local high school. So she gets extra help she needs!

Elizabeth - posted on 08/28/2010

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you probably can u need to find a health department there or maybe call a pediatric place and ask them. they should have numbers they can give u. maybe try to find out somethin on the computer.

Tina - posted on 08/27/2010

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Try the Brent Woodall foundation for exceptional children. My son goes there and they are AWESOME!! Aba therapy can be sooo expensive, but they are actually quite reasonably priced (12-15 an hour instead of the usual 2000-3000 monthly). Plus, ECI paid for my son to go there until just recently. (he turned 3, so he no longer has ECI :( ) BWF also has grant applications to help you out. They did wonders for my son!!



My son was diagnosed with moderate autism when he was 2. I applied for ssi immediately and recieved it, but have since been denied due to income. (even though I am a single mom with 2 kids) Medicaid came with the SSI, but was also taken away. Micheal is now on CHIPS. If you do get medicaid, and he needs speech, i would recommend Care Options for Kids. They only accept children with medicaid or CHIPS and they come to the house. The therapists are awesome.



I know it's frustrating, especially in the beginning. BWF was great because they also have free parent training classes, and taught not only me and his sister, but my parents as well.

Tammy - posted on 08/26/2010

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If you are in the Dallas area, I know that Scottish Rites Hospital is free or on a sliding scale and helps children with Autism. Check where you live and see if there is a childrens Hospital that offers services for parents that can't pay for therapy.

Dee - posted on 08/26/2010

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There are things you and your family can do even before he turns three, take a look at Stanley Greenspan's Floortime approach. It involves promoting
engagement, improving eye contact, raising affect (emotions). We did it with our son (now 14) and it made a huge difference in his social skills (usually a major problem). His books are in most libraries. Info also on the web.

Dee - posted on 08/26/2010

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One of the most helpful things we did for our son,
Patrick (14-ASD) was to teach him some sign language. Just a few words- more, juice, etc, keeps
the frustration over difficulty communicating to a minimum. Good luck

Abigayle - posted on 08/26/2010

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First of all Autism is NOT genetic...it is actually not common to have a sister and a son with disorders on the Autism spectrum. There is a mom that thinks its environmental I met in Germany andshe has five children all with Autism two she will be lucky if they ever make eye contact or hug her. I have a nephew with Autism and a son. I believe for my son it was a combination of the vaccinations given to him and the pesiticdal crap they sprayed daily where I had lived and after research possibly mecury levels. Its all that made sense. So, your genes blame if he is bipolar NOT for Autism. He is a blessing; guaranteed given to a mother that will only love him no matter what and will learn more from him than he will from her. Ours would have saved my marriage had he ackknowledged it because we didn't have issues that severe prior. I had a horrible time in texas and had a breakdown myself that caused my bad judgement to leave my husband but I don't regret it. I still feel getting him out of Texas is what actually saved him but that was one town. I think everyone should feel the miracle of having a child like ours. Good luck!

Christi - posted on 08/26/2010

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Thank you Abigayle. My sister has Aspergers and has alot of troubles and I recoginized the signs almost immediately. My poor sister wasn't diagnosed until she was 12 because everyone just told us she was a bad child, even though she had soooo many developmental delays as well. She spent a year in a live in instituition in Austin called Meridell and came out a whole new person. She looked us in the eyes, would bathe herself, talk to us, and she is now 15 and a sophmore. She had her first boyfriend last year!!!! She is also on the honors roll and takes almost all regular if not honors classes. I think what pushes me is seeing how much getting help made my sister into a completely different person. At times I feel so horrible about my bad genetics, but I realize that Tyler is such a blessing. He honestly saved our marriage and kinda of glued our family back together. I love him even more now, if that is possible and will die trying to get him what he needs!

Abigayle - posted on 08/25/2010

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Hey, sorry to hear about the diagnosis I have a son with High Functioning Autism and Sensory Integration Disorder. I would like to suggest that you take this diagnosis to your public school if of school age and I believe two different doctors. That is the only way even with miilitary insurance I was able to get my child into some sort of program and for two years they only acknowledged Speech impairement. I have never had the privelage myself of the ABA therapy. I had to utilize the school but that in itself if you educate yourself on your rights and your child you would be surprised at what you can fight to make your child able to recieve. As for the insurance aspect here in GA it is I am pretty sure covered under Medicaid. I do know as well if he is severe enough for under certain Autism category's SSI he qualifies for and if that happens he automatically pretty much gets that insurance...you would have to double check that I have Tricare right now

There are grants out there too that you have to do some research but after my divorce one grant will cover up to five to ten grand in therapy such as ABA. Go to the welfare office or online in your county to apply for the medicaid. Under medicaid you shouldn't have very much if any, out of pocket but ABA therapy I know is exempt under some insurances. Tricare used to be one but they just added it as approved and in the East Region its taken care of. You can also save to have a person come in and train you so you can provide it yourself. I am not sure how severe your son is but even at high functioning I had a severe violent child until a year ago. We tried everything and what worked was strategies my husband; his stepfather, used and taught me. I would be happy to share those here is my email abbykorinnelee@aol.com I qualify and my son will for SSI but there is a lot of requirements and severity of illness etc. You just have to submit all they require to see if you will get those. Medicaid I believe can be used as supplemental but its more shared cost if its like California's Healthy Families...step above the free Medi cal..but pretty decent ...that is what we used to get our child into to three different specialists. God you live in TX you definately need to contact me...we had a lot of issues good and bad in that state and mostly in the KISD school district and had to send my child to inlaws in california just to get the speech as a qualifier for spec ed and even though he was diagnosed autistic for three years they refused to put him under Category A: Autism and specturm disorders which is a different and more substantial qualifier for my son...I had to go overseas to Mannheim when we moved there at the school on post to get what he needed done...saying that I can give you an extensive list of recommended assesments that you can make sure either are done or you can request etc. I have all of his IEPS assessements, tests etc as well and if you would like at anytime can also give you an idea of how bad he was year one and where he is at year four

Listen...a child will always be Autistic but for the past year my son has finally emerged from Andrew world to our world and stayed 95 percent of the time...at 8 had his first best friend, first sleepover, first time to walk to a house three doors down by himself...he hasn't been violent in a year and is finally grade level and actually very bright and a whiz at math. My son still plays oddly, he rarely reverts to gibberish but it does happen...regressed briefly this school year...but I can at least share what worked for me.

I am currently fighting my son's school because my son is the only recieving the care and services he needs and we don't fall under federal legistaliion like no child left behind as yours will...and I am currently helping many parents, friends and neighbors with their needs for their children and soon the district and the govt and military to get us under federal legislation. i have an extensive college education in psychology with my specialty as upper grad work in Abnormal and Mental Health. Autism Adhd, Bipolar, and those said illlness' I have a personal dealing with all my life through my family and my son. I am not a doctor, I do not work, my work is my son...I will be on foodstamps and medicaid, grants, and child support to still be able to do that after my divorce but I can at least make sure that you recieve valid help...that you will understand what you may not...and there is a light at the end of the tunnel...your child is mild and high functioning...he can be out in this world like my son...its keeping him out and getting him there that is the struggle and so well worth the physical and emotional scars its left.

I applaud you Christi for not seeing the defeat of not having what we would think of as a normal child but I am glad you want to jump right in....the most innocent and kind child I have is my Andrew and he can read moods without much signal and give you those hugs when you need them. My son is overly social...but he doesn't make attatchments easily. He has had me and only me for a long time and knowing that i unconditionally loved him and be the only one he physcially bruatalized in his fits...to know that I wanted to help and to feel after that behavior and rocking him for six hours straight through that six hour fit...I loved him even more...Good luck if you ever want anything email me or I will give u my number

Melissa - posted on 08/25/2010

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You also probably qualify for IHSS (In Home Supportive Services). This program will pay someone to help your child (and that person can be you). There are some hoops to jump through, but it is definitely something that will help, especially since you can not work because you have to take care of him. They also have a type of IHSS that is called protective supervision. Document everything that he does that places himself in danger. Make sure it's

clear that it's due to his disability, not a behavioral issue. They will make a big deal of not funding help for behavioral issues, just developmental ones.



You'll need to discuss things like firestarting, wandering off, self-harming behaviors, etc. Anything he would do that would hurt himself if he didn't have

direct supervision and how his need for supervision is much higher than normal for his age. The younger they are the more supervision would normally be given so the more documentation you can give the better.



Usually for protective supervision, the max hours they will approve is 195hrs at $9.30/hr (this info applies to CA...not sure if it applies to other states). Some people also get normal IHSS, and they will lower the protective hours, but the total hours will still add up to 195, so its the same. Some people have managed to get more hours, but I don't know how they did it.



We're in the process of applying to SSI and IHSS for our son, so all this info has come from friends who have gone through this.

Laura - posted on 08/25/2010

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I'm in Vegas we too have Katie Beckett, along with MAABD (medicaid for aged,blind and disabled) I also have SSI for my son.. just get in touch with ur local SS office.Medicaid in my state don't cover him cause he gets SSI the MAABD program is basically the same medical coverage plus you should look into ur local Autism speaks or Easter Seal organization they can also help u within ur state..

Christi - posted on 08/25/2010

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That won't kick in until he is 3 here in Texas unforutnately Jane. But ECI is on the case working with us to start him in school at 3 and to get him the ABA therapy he needs.

Jane - posted on 08/25/2010

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ECSE should help with the therapies, the school district is obligated to provide services for all resident children that are identified as disabled.

Christi - posted on 08/23/2010

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Oh wow! We haven't checked into the schools yet because quite honestly we don't know if we will still be living where we are now when he starts school. ECI said that they will help with the tranition into the school system though. We have our first appointment with them in the morning so they can review the doctors findings and write out a therapy plan. We are really upset, but really excited all in one. It is a struggle daily because I have been out of a job for two years because of the economy and not being able to return to work is really going to hurt us. Not to sound horrible, but if SSI can help us scrape by and pay at least the gas mileage to and from his doctors, it will be a blessing. I am trying not to get overwhelmed but it is hard not too. So many things to do. He is seeing a neurologist as well because there is concern that he might be having minor seizures and also a genetist to see what if I carry the gene that can cause Autism, as my sister is also Autistic. I can't wait to hear him start talking again and I know how frustrated he gets when he doesn't understand and I can't wait until he starts picking up on things. Thank you for all of the help mamas, it is so reassuring to know I am not the only one out there struggling through it all.

[deleted account]

It will be great if they are able to help you out with the extra therapy sessions. I'm sure he'll do great since you're learning what you need to do to help him. :) Does your local PreK program offer any type of ABA? That might be a solution once he's old enough. Here, the autism program is 5 hours per day, 4 days per week and they do both verbal ABA and speech in class, as well as out of class therapy for kids that need more help in other areas.

Krystal - posted on 08/23/2010

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My son is Autistic and he is on Medicaid and as Jane said it is on spenddown. Because of the disability he will remain on medicaid for life. The easiest way would be to go through SSI and as Autism is a clear diagnosis for SSI that is what I would do. The SSI is income based so the amount varies. I received SSI when my son was first diagnosed and for a couple of years. It helped a lot since I spent so much time and money going to city Dr.s and therapies. Medicaid paid for all my sons therapies n now he is in third grade and the school district is responsible for all of that. I can chose to sign a paper so medicaid can help the school district pay for some of it. The best thing is to get him into all the recommended therapy now. Every day will be a struggle but once you get accustomed to life as it is now and once he starts to gain a lot from his therapies it will be like a child first learning to walk for you guys. I wish you the best of luck!!

Christi - posted on 08/23/2010

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ECI does not do ABA therapy and our insurance does not cover it. He needs so much therapy because he is 20 months and at the same level as a 9 month child. I have bought books to educate myself on how to help him at home, but he will require 10+ hours of ABA a week, and they only do 2 hours sessions. I set an appointment with SSI and hopefully they can help us out. We have applied for it because I was planning to return to work, but since he is going to need therapy almost daily and my husband already works two jobs, I can't go to work.

Clarence - posted on 08/23/2010

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U sure canget medicaid. Go 2 Social Services and get U a him a case worker. It is already documented that he has a disability. Start U a file and don't let anyone stop U from getting what yr child rightfully deserves! Good luck and keep me posted!

[deleted account]

Can you get free speech and/or aba through ECI? Did his doctor tell you he needed therapy everyday? I'm really confused as to why there is a need for so much therapy and disability checks for a child with such a mild case of autism. Is there a certain issue you're trying to work out for him?

As for cost, we have received minimal services through the county (speech twice per week for 6 months) and the school (verbal aba in a classroom setting) and those were both paid for by our tax dollars. As for the rest of my son's therapy, it came from me educating myself and learning to do it at home. If you're going to be home anyway, you might look into helping him yourself until you can get services through the state for the next year. We have done other supplemental things, like music therapy, equine therapy, and training a service dog, but those were based on his specific needs, not something that every single person would expect to have to pay for.

Jane - posted on 08/23/2010

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Your son might be eligible for Supplemental Security Income - which is for disabled. If he qualifies for that, he qualifies for Medicaid with no spenddown. Check with your local Department of Human Services and your Social Security office. They will help you with each other, as well.

Renee - posted on 08/23/2010

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I lived in Maine and they had something called Katie Becket Medicaid. It was to cover the high cost of children with dissabilities. Once a diagnosis is establishted your family income doesn't matter. It covered so many things like goodnight pants since complete potty training can take longer than the average child. Many states have a version of this, but you have to ask.

Carol - posted on 08/22/2010

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As far as medicaid goes, you should go to your local family services center (for example, in Florida it is called the Department of Children and Families) and tell them that you want to apply for Medicaid. You'll have to provide them with all sorts of information, pay stubbs, bank statements, etc. If you qualify, then you'll get medicaid and you will have to redo the above every 6 months. We got medicaid when my son was first born and it was a life saver for us at that time. Eventually, my husband got a better job and we were no longer eligible. As far as SSD goes, we have not applied for that as there are things it seemed we did not qualify for. To be honest, I can't remember why we didn't do it, but there was some reason why we didn't. You can go online and google Social Security Disablilty for children with Autism and read up. I would also think if you went to apply for medicaid that the people there would be able to tell you this information regarding SSD and medicaid. Good Luck!

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