Early Intervention (more updates)

And we thought IF coverage was bad.

Did you know that in most states Autism screening and therapy IS NOT covered by insurance? Early Intervention provides some therapy, but not all - and they do not do a medical diagnosis.

In NJ, they just passed a law mandating that all insurance companies cover autism screenings and treatment -- however, this does not apply to self-pay (private) plans like the one we have. My insurance covers 1 out of the 5 diagnostic screenings for autism spectrum. One! They are trying to pass a law federally that will override ERISA and mandate that autism coverage is universal for all children. I think that is so important.

So what if you had a child, like mine, who was progressing along normally, spoke at 12 months, had social skills -- only for everything to hit rock bottom by 16 months? Suddenly you are thrust into a world you did not think you would be a part of. Therapy is not cheap - it will cost us at least $625/month. There is a 9 month waiting list to see a neurologist for a diagnosis -- and a developmental pediatrician is usually out-of-network. Luckily there is a lot of support out there and I will be taking advantage of that.

But what makes me angry is that these children who have delays or are on the autism spectrum do not have coverage for diagnosis and therapy. I just joined AutismVotes -- I suggest anyone with a child take a look at their website.

And here's my vent: I hate going to playdates now when Mom's brag about how "smart" and "advanced" their child is. And we thought "fertile myrtles" were annoying! I do have to keep my pain in check, a skill I learned with IF. I have to try to share their joy realize that is a parent's right to brag. But it is SO hard.

Thanks for letting me vent.

By suzi72
Posted September 25, 2009 at 9:50 am
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That is ridiculous! Why, why, WHY wouldn't something so important be covered? Insurance companies make me so angry!!

9 month waiting list? Seriously? Until then do you have to just assume the worst, and hope that the therapy does what it's supposed to?

Kim, I'm still just floored that you and your family are going through this. To have all of this hit you out of the blue, when Ava was hitting all of her developmental milestones up until that point--it just doesn't seem possible.

I will definitely check out AutismVotes. Thank you for making me aware of it.

Sending you strength and support--

-Suzi

By Mollyiteach
Posted September 25, 2009 at 9:56 am
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Kim
I am so very sorry you are going through this. Many people don't understand that Special Education (all levels) is a very NEW part of our education system. In the 80's many people with disabilities were still being encouraged to go into homes and never attend public school. That is NOT however an excuse for lack of services. It takes parents like YOU who become advocates for their rights because so many just don't have any idea the struggles of people with disabilties and their families.
I also want to encourage you to get into see a neurologist as soon as possible. Just my thoughts but I would rather take the money you are looking at for therapy to go and find somewhere a neurologist or pediatric specialist to determine what is going on. I would just hate for you to start the therapy (not that it won't help) and find that something else would be working better.
I also sort of understand your feelings about those "super" braggers. My LO says maybe 5 words that I can understand at 18 months and I get so tired (not here really) of hearing moms of 12 month olds and younger who are saying all sorts of things. And then some that even look at you in horror when you mention she doesn't say a lot. It is hurtful even though they don't consciously mean it to be. Children are beautiful and a gift from God no matter how they are packaged!
Molly

By nepsi
Posted September 25, 2009 at 10:27 am
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Kim-
Don't listen to those Mommies... they are full of crap and compensating for something lacking in their lives. Besides kids that are ahead now doesn't mean they will be ahead later. They thought I was slow or average till I was in the 2nd grade and you know what I achieved so it means NOTHING right. It is like when people brag about their amazing sex lives I always assume that means it sucks.

I am sorry it seems like NJ is such crap. The taxes are so high so where is the money going? Also 9 months seems like an unacceptable wait. Is there no other doctor even if you have to travel. I mean if you are already out of network you might as well look around right. You can't get time back and it is crazy they are asking you to wait.
Nicole

By morecheese
Posted September 25, 2009 at 10:49 am
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Kim,

Oh wow. I am so sorry you are dealing with all this. That makes me so angry that insurance won't cover these diagnostics or therapy!!!! It is outrageous -- especially for a syndrome like autism that is on the rise (I suppose it cuts too much into profit margins, huh?). I can't believe the neurologist waiting list, either.

You're a strong and resourceful momma, and I know you're taking great care of Ava. I'm sorry you have to deal with the braggers -- I hope you can tune them out or meet some new playgroup people!

I'm glad you've found support, and I hope that you can connect with others that can help you get around these awful gaps in our system. I'll be thinking of you and sending constant wishes for strength, support, and good luck as you navigate this new world. I wish I could be helpful in some way!

Thank you for letting us know about this. I will definitely check out Autism Votes.

Hugs,
Marie

By LauraK
Posted September 25, 2009 at 11:05 am
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Kim, I'm so sorry you are going through all of this but it sounds like Ava has a fighter for a mom! I'm glad you are getting some support, I hope it helps.

I totally hear you on the bragging moms. I get that sometimes from other parents at daycare, it's so frustrating. I don't get why in order to be proud of their kid they have to put other kids down - can't people just be proud of their kid for being that kid, and not for doing something "better" than someone else's kid?

By Pokie
Posted September 25, 2009 at 11:26 am
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I hate that you have to deal with all of this. Concern for Ava, ignorant parents and the red tape and barriers of healthcare. You are showing your usual grace and strength by being an advocate. You are remarkable, as a woman and as a mom. I will definitely check the autsism votes website.
Sending strength-
Ann

By jro3
Posted September 25, 2009 at 11:44 am
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Kim, I've been thinking about you guys so much! I wish I could get you an appt with our neurologist. If you do decide to travel for an appt and need info, let me know, and I'll do what I can. I would honestly have a hard time waiting 9 months to see a doctor. Does your pediatrician have recommendations for neurologists or developmental pediatricians? If so, I would recommend getting appts with several, even if they are 6-9 months out, and then asking if they have waiting lists that you could be put on for any cancellations. That will frequently get you in earlier, then you can just cancel all the other appts when you do get in. Just a thought.

And it sucks so bad that not only is IF not covered, but autism isn't either. I have a friend with two autistic kids (identical twins) and she has fought and fought and fought for their care/therapy/etc too. She does a lot of fundraisers for autism research and I always support her efforts. This is one of the reasons why I really would like to see a government-run healthcare option that covers everyone in each state equally, including for things like IF and autism!!

I hear you also on the playdates with the other moms. Anna is part of a playgroup that I joined when she was an infant, back when the impact of her diagnosis was unknown. I had such a hard time going to the playgroup for a long time, because I never knew what would be a trigger for me. The other moms all had babies whose health they could assume would be fine; same with their development. But I had no idea what was ahead of us and I'd sit there and compare Anna to the other kids and drive myself crazy when they would brag about the newest skill their baby had gained. I finally told them all about what happened to Anna and they were very supportive (and it also cut down the bragging, although I didn't ask them to--they are just more sensitive about it now). Turns out that most of them have had IF issues either themselves or their family members too, so it turned into a really positive, supportive place for me. Perhaps, when you get to know the other moms a bit better, they can be supportive in the same way too? Until then, ignore those awful comments. I can't tell you how many times I've heard that kind of stuff with my oldest (who is 12, and yes, some moms STILL do it). I agree with the other wise ladies who think they are compensating! I lost any desire I might have had to compete with the other moms in that "my kid is better than your kid" race eons ago. For me, it's enough that my girls are doing as well as they can with what they've been given, and I only want to compare each one to herself, if that makes any sense.

Hang in there...if you ever want to talk, feel free to private message me. I do understand a lot of what you're going through, from my own journey. I so would never wish any of this craziness on anyone, but it has helped me to connect with other moms on this same rough path. And I know it's small comfort, but you are strong and smart and Ava will do just great with you cheering her on. :)

Sending you a great big hug,

Jennifer

By lfaber72
Posted September 25, 2009 at 1:49 pm
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Kim,

Thanks for giving us an update and venting. This BB is the most supportive group I have ever encountered.

You are such an amazing fighter and your daughter is so lucky to have such a mom. As Ann said, you are handling this with your usual grace.

Insane the lack of support for autism: diagnosis, treatment, the whole lot. I, too, will check out AutismVotes.

As for the play group, I am also part of one and most of the kids are early for gross motor (Theo's slow point) and I finally told them last week that we were going through EI for this and they have been super supportive. I have a hard time keeping things inside as they always seem to grow into huge monsters in my head but when I say them out loud I often find that they are not as horrible as my mind was making them out to be. In any case, if this is not the right group to be supportive, then perhaps you can find another.

Sending you huge hugs!

Lisa FG

By fireball10
Posted September 25, 2009 at 2:40 pm
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Kim,

I am so sorry you and your family are going through this. My best friends son was diagnosed at 2.5yrs with Autism and is now 5yrs old so I have been going through this struggle with her since then. It is horrible the lack of coverage for these children that really need the help. They too have to pay for all the therapy and interventions themselves and it is horrible and unfair. I will say Luke has come such a long way since being diagnosed and getting help. I am so happy to see the progress and so are they, even though it is a regular struggle.

I agree with the other women about trying to get in sooner with a neurologist, 9mth wait is not fair to all of you. I also would suggest meeting with an pediatric allergist or finding a someone who specializes in Autism. They discovered Luke was allergic to quite a few foods and changing is diet has really helped. Just a thought, I know you must be so overwhelmed right now and may be getting a lot of unsolicited advice, so I hope you don't mind me adding that.

Please continue to take care of yourself and know that you are a great mom that loves her DD. I am constantly telling my friend what a great job she is doing and how ovious it is because Luke is so happy!

Fireball

By cherip
Posted September 25, 2009 at 3:06 pm
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Kim,
Even though your news is not good news, I am thankful that you came here to share with us. Everyone else has said wonderful things, so the only thing I will add is that even if you stick with your current playgroup, I wonder if there are playgroups of moms and kids in situations similar to yours. I mean, look at the support we all get here because we *know* what everyone has been through. They might offer help naviagating the system, a real cheerleading squad for the progresses that Ava will achieve, and a personal connection that would be helpful to you as the mom dealing with all this.
Many big hugs to you,
Cheri

By suzanna
Posted September 25, 2009 at 9:43 pm
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Hi Kim - in NJ they have a support group called COSAC for parents with children with autism. I know that Ava does not have that diagnosis, but you might want to google it- I am sure they have info about insurance, play groups, names of doctors etc. They are a very well known and supported group. Take advantage.
I am continuing to think of anything else that could help you right now. Thinking of you...
Suzanne

By hope42feet
Posted September 26, 2009 at 8:09 am
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Kim,

I'm still shocked all this has happened to little Ava. Have they done a Cat Scan or MRI of her brain? I'm hoping the pedi at least looked why this happened and isn't waiting for her to be seen by a neurologist. Nine months is way too long.

I'm also stunned at the ability of a health insurance company to not cover needed evaluations and treatments. It's just wrong.

Becky

By PixieCat
Posted September 26, 2009 at 8:56 am
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OMG! I must be deluded because I just thought that would all be covered. Especially since it seemed like in the long run diagnosis and treatment would actually save the ins companies money. (See, I assume they have no interest in what's actually good for their patients.)
I know I HATE it when parents talk about how smart their kids are too especially when they do it in a competitive way. They are all going to be good at different things.

By lisaj
Posted September 26, 2009 at 1:08 pm
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Oh Kim- I'm so sorry you and your family are going through all of this. I was just thinking about you the other day. I had no idea things like this aren't covered. I will check out that website.

As for the bragging moms... I get sick of it too. I'm a SAHM and some of my working-mom friends make a point to brag about all the things their kids do at day care and all the little friends they have there. I know some of them do that because they feel insecure in their decisions, but it gets old.

I hope you are able to get some answers earlier than nine months.

Take care-
Lisa

By imbean24
Posted September 26, 2009 at 1:44 pm
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Kim,
I am so sorry you are going through this, I must agree you would think this stuff would be covered.
I wish I had some advice for you, but know you and Ava are in my prayers.
-Michelle

By KimiC
Posted September 26, 2009 at 5:27 pm
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Suzanna,

It is funny you mention COSAC, my father is friends with the Executive Director. He told me to go to COSAC's website. They have support groups, classes and a lot of information for families and parents.

Thanks so much. I am so happy there is support out there!

Kim

By jamsr
Posted September 26, 2009 at 6:13 pm
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Kim:

I don't have alot of information to help you but I want you to know that I'm thinking of you, Ava, and your family. Please know we are all here for you.

Jamie

By LiddyB
Posted September 27, 2009 at 9:31 pm
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Kim,
I'm so disappointed in the lack of coverage, legislation and the nine month waiting list! That is just horrible. I hope you can find the help little Ava needs and some good support groups. You have done such a great job advocating for her. Thanks for the information and I'll check out AutismVotes.
Liddy

By lpc112
Posted October 2, 2009 at 9:02 am
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Hi - I'm so sorry that you're going through such a tough time, and that insurance isn't making it any better. You've probably looked into this already, but can you go through Early Intervention or CPSE (for kids age 3 and 4)? My DD has received OT and PT through both and (thankfully) we've never had to pay anything out of pocket. We are in NY, but I think most, if not all, states have the same or similar programs. I know in our case, it didn't matter what kind of insurance we had b/c everything went through the county/state. I am also enrolled in a grad program for Speech-Language Pathology and I know my school's clinic has several clients (young kids) who are receiving additional services at our clinic, at a very reduced rate, b/c even though they qualify for EI or CPSE services, the parents feel they need more and can't pay out of pocket. So, looking into universities with Grad SLP programs and clinics might be an option for additional treatment. If you have any questions, feel free to ask. Take care.

By KimiC
Posted October 2, 2009 at 9:10 am
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Thanks so much -- I do envy New York State residents. A few friends of mine have children in EI in NY, and they never had to submit tax forms or pay a dime! In NJ for Early Intervention, you do pay -- it is based on income. It is free for those who make less than $46K a year. We make more than that and our co-pay is $65/hour with a monthly cap of $625. I almost wanted to pack up and move to NY again!

DD is 19 months -- so we can't go through the schools yet. Once she is diagnosed, we may be able to get a community grant through SSI or DDD. But I have to wait for her diagnosis.

I just joined Austim NJ, a non-profit that works to advocate for those with Autism and and Autism-related disorders. They have a lot of resources and I am hoping to get some cost-saving tips from them.

I do think it is AWFUL that insurance companies do not cover treatment for children with Autism/ASD. Intense treatment early on is the only way they can improve. Each state varies, so we cannot rely on that. There needs to be a national mandate.

Thanks so much for the info!

xo
KIm

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