Who worries about their child's future?

Post Reply New Topic

The reason we have Medicaid in addition to private insurance is because the private insurance *only covers therapy up to a certain point*. When Matthew had both OT and Speech therapy, his benefits ran out in about October. Speech is $45 per half hour and OT is $110 per hour and he got speech every week and OT every week. (He's no longer getting OT because he's improved enough to not need it on a weekly basis.) We are allotted 75 visits per year for this type of therapy, and when we were doing speech AND OT, OT counted as one visit and speech counted for one visit--which used up 2 visits a week. Multiply by 52 and you get 104 therapy sessions. That's 29 sessions that are not covered by insurance and which we would have had to pay for out of pocket. Things ARE a little bit easier now that he is not doing OT. All of Matthew's sessions would be covered by the combination of private insurance and Medicaid.

If we did not have Medicaid to pick up the rest of the payments, we would be paying about $20 per session, which comes out to $1040.00 each year. In addition to speech, we are also seeing a naturopath which neither insurance NOR Medicaid pays for (and we knew that going in). I have seen improvments in Matthew's speech since we've been working with her. That runs anywhere from $200-$300 a month.

I recently worked out the budget for our family, and our expenses come to about $100 LESS than my husband's monthly salary. That is not much of a cushion. And that doesn't completely take into account unexpected expenses or cost-of-living increases. We have decent savings but we aren't putting anything away for an IRA except for what gets taken out automatically from DH's salary. $50,000 in this day and age does not go as far as it used to.

Also, there are people who have insurance that covers NO autism treatment. When we first started taking Matthew to speech therapy, we were paying the entire sum out of pocket because we were on an HMO and a) the place recommended wasn't in our network, and b) they covered a grand total of TWO MONTHS of speech. I didn't want to take Medicaid. I didn't want to take government help. But one year of paying for speech out of pocket nearly broke us financially and we have never recovered from it.

To sum it up, without Medicaid at this point in our lives, we would be facing very slow bankruptcy. But the Medicaid system itself is *also* facing slow bankruptcy, and the only way I know of to make sure that we can pay for therapy in the future is for me to go back to work. I chose captioning because it's reasonably flexible and I can be available to Matthew when necessary and also bring in a decent income.

Medicare and Social Security are also going to have the same problems. Matthew might qualify for SSI when he turns 18, but if the system goes bankrupt, who's going to pay for what he needs? I don't trust Social Security to be around when I turn 65 or 70. Neither does my husband. So right now we're doing what we can to try and make sure that we put enough away to pay for what we need and what Matthew is going to need.

You asked, "If the benefits were clear, wouldn't regular health insurance pay for it?" The answer is a loud, resounding NO in many cases. I pointed out earlier that the HMO we used to have only paid for two months of speech therapy. There are insurance plans that won't pay for Applied Behavior Analysis, which is a *proven* therapy for autism. There are parents who have banded together and convinced certain states to pass laws that would require group health plans to cover autism (South Carolina is one that comes to mind). Apparently the benefits for autism therapy were not clear enough for those particular group health plans to cover it.

Does this clear up things any better?

Edited to add: Most families who have Medicaid *and* group health use Medicaid as secondary insurance. This is what many families do when both parents work--they use one insurance company as primary and another one as secondary.

Yes, thanks. I didn't mean to doubt you, just ... sometimes it gets mindboggling to realize the different experiences people have. When I think of insurance not covering autism, I tend to assume we're talking some of the fringe stuff that many parents find necessary, not the cores like speech and OT. I, personally, wouldn't have chosen the naturopath, but that is me.

But that raises the next question: I've never found out how much speech and OT our insurance would cover because my son is getting these through the school. Do most districts provide this once the right box is checked on the IEP?

We cleared out our savings when my son was a toddler, before knowing he was on the spectrum, because I had client committments and he wouldn't do group care. We had to hire a private nanny. That was a tough choice, because it certainly begged the question of if I should keep working part time at all. I don't blame autism for it; these tough choices are just part of life. Versions of it happen to everyone.

Point being, there is this kind of treadmill we find ourselves on, and we really need to ask over and over: are the choices we are making really necessary? I honestly am not so sure they are. There is, as I said, so much momentum in all of it, and that can clutter our thinking. I am mostly suggesting that you try to see what your life and choices might look like if you could step out of the circle and see it all fresh.

I even worry about how my kids are going to do... and I haven't even had kids yet!

I do worry about my boy's future. In the night time when I lie awake. At work. Riding my bike. Driving the car. Washing the dishes. Eating dinner.
When do I not worry? I don't know, it consumes my thoughts at the moment. It was good at work today, I had a big problem that took several hours of hard work to get fixed, in that time I got to forget about it.

I don't know, either. Sometimes I think it would be easier if Matthew had diabetes. At least a treatment plan for diabetes is reasonably straightforward and there are things that you KNOW will work.

we had OT, speech, gross-motor skills and everything free in the school district program. now i regret that it wasn't free because it was just wasted time.
after one year of speech every single day his english proficiency came as 1 (the lowest). i just want to caution people that time flies and it ios very valuable to find people who are able to figure out the right approach.

EDIT: after DWs post I need to correct myself: make sure the approach is bearing fruit weather it is "professional" or your own. our own experience with "professionals" is really bad, for now.

The sum of it seems to be this: I've heard stories of "success" from people using all sorts of professional therapies, as well as from parents who did none of the above and simply spent quality time working with their child in the ways their instincts told them to. I've heard stories of "no improvement" from families who have gone broke trying. What I want to tell parents is bascially what you will hear about selecting a preschool: there is no one-size fits all approach, and you have to make the choices that seem to be the best for your unique family. The surest way to fail is to fall prey to "every says D is the best" and choose it, even when it feels wrong to you, or you are not sure the benefit is worth the cost. You should not stress yourself out to the point of having no ability left to just share joy with your unique child. If therapies are doing that to you, drop them - I firmly believe the child needs the best of his parents more than he needs any therapy. And if you have a high functioning child, find out from him what is working - my son knows which therapies he likes and feels are helpful, and which ones he finds wasteful.

I agree with DW. I have chosen to take advantage of the free therapy that my son gets from special needs pre-k. That is it. He is almost 5 now. From 1-3 yrs, we did do ST,PT,OT---some of it was through early intervention, some of it was ran through insurance since my son has hypotonia (low muscle tone) it was coded that way, and it was paid for.

I learned so much from watching the therapists work with him in the beginning, and I also read alot and come to WP for advice. I have been very cautious so far about any treatments other than therapy or school. My son's biggest deficit now is interacting with his peers. So guess what? I take him where other children will be as much as possible.(park,library, day care drop offs sometimes, birthday parties, etc... ) and work on his social skills as much as I can. He already loves adults, so working with a therapist on his social skills doesn't make much sense to me. I did do a social skills class last summer (4 sessions at $50/session.) I wasn't sure if I saw improvement, and I could have gone to the park for free!!

I guess I do have an advantage since I am not working right now, and only have 1 child, so I realize it is probably harder for some moms who work. But, I think just spending as much time loving and working with your child teaching him about the world, will do a world of good!

I worry about my girlfriend's son too (10 year old aspie). I worry that he won't be able to find a job, or that if he does, he won't be able to hold it and will just want to "give up" working and sponge off of us his whole life.

I do...every minute of every day.

Doesn't it make you crazy that you worry? I have a 15 yo NT daughter and a 12 yo AS son. I have no fears about her future, and many about his. Truth is, he is doing pretty well. He has what he considers friends, he isnt bullied, he does decently (not great) in school. He needs more reminders and help to get through his day, but overall he isnt in bad shape, all things considered.

And yet, I worry about his future. I worry mostly for the social aspects (I think he will do all right professionally). But just when I consider things are in a bad way, he amazes me with some new development. Last night, when his grandmother was flying home, he hugged her. He has NEVER initiated a hug with her, though is very attatched. Bear in mind, he does hug people, and even likes to, but he has never been the one to initiate it without prompting.

This year he developed his first real crush on a girl, and it turned school around for him. He loves going now, if for all the wrong reasons lol.

Things get worse on occasion, but sometimes he takes a great, unexpected leap forward into new territory and makes real progress. Don't write off your AS-HFA-PDDNOS kid, without these kids we would not have much of the science, music, art, medicine we use everyday. We have great kids on our hands...worry, but don't let it destroy you. Let if fuel you to get them all the opportunities they need to make it, and they can do it with a bit of faith and a lot of hard work.

Thanks for sharing that MNJIm---I feel like my son's story could go either way, so I do my best to have hope for his future. I have really tried to just enjoy his toddler and pre/k years instead of worrying all the time. It is a struggle, but I make a conscious effort. He is my only one, so I want to have some joy from it and not let my days just be consumed with worry. I don't think any parent is sure how thier child's future will turn out. Even kids that have no issues and have great parents and a good upbringing, sometimes go in the wrong directions and their lives don't turn out so well. So I think maybe our children will have just as good a chance as any if we just keep our faith and hope!