Thursday, June 24, 2010


I got the call this morning from our service coordinator, the one I've been waiting for regarding the speech eval Finn underwent last week. I was informed that, yes, Finn now qualifies for speech therapy, but Regional Center has now decided to "enforce the law that went into effect last year" which, boiled down, means that we now have to go through our medical insurance to get services for Finn. Regional Center will continue to pay for Emily, Finn's OT, until her contract is up which is in two months I believe. All new contracts and new services, apparently, have to be submitted to private insurance first, and Regional Center will only cover services that are not covered by insurance.

What does this mean for us and for Finn? It means that we have to obtain referrals to therapists from our pediatrician, and we have to obtain authorization from our insurance carrier. We have an HMO, so we can only use providers in our network, and neither Emily nor Rebecca, the SLP who did Finn's speech eval and whom we were crossing our fingers to get as his speech therapist, are in our network. So it means no more Emily in a couple months, and no Rebecca. It also likely means that even if our insurance will cover therapy, it will only be a limited number of sessions per year (which may be fewer than he would have otherwise received). Regional Center would then cover any therapy beyond what our insurance will cover, but it would mean switching therapists yet again at some point in the future. Going through our insurance also means that it is highly unlikely that we will be able to get in-home therapy, and I will be required to drive across town to obtain therapy for Finn. Which I am not able or willing to do due to all the other commitments I have with my other kids. Oh, and it also means paying $20 co-pays for every therapy session.

Our SC did inform me that Regional Center is still willing to pay for Finn's therapy provided we give up in-home therapy and switch to center-based group therapy. She said there are two locations they contract with - the one she most highly recommends is about a 30-minute drive in clear traffic. Can't/won't make a commute like that. The other center is apparently local to me. I guess I will have to check it out before I reject it outright, but I have to say that center-based therapy is not what I want for Finn, for various reasons.

I knew this whole insurance thing was a possibility, and yet, it still took me by surprise. I started crying on the phone to our SC, to my chagrin, and then ranting at her. I told her that I feel that Finn has already been screwed because he was, by law, supposed to be automatically eligible for services from birth just based on his diagnosis of Down syndrome, and yet we've had to fight to even get him a speech evaluation, and here he is, about to turn two years old. I asked her, "What about the fact that he's entitled to services in the most natural environment? That's our HOME! Not some center 20 miles away." I really went off on her. And then I apologized, telling her, "Look, I know you're just the messenger, I know you're just doing your job. But you have to try to understand where I'm coming from. My kid is being screwed. And some day, when he's all grown up, society is going to look at him and say, 'Look at the retard who can't take care of himself!' And all because he's not being taken care of NOW the way he should be."


I don't even know if I believe that. I still find myself completely torn down the middle about services, about the value and the toll of therapy. I guess what upsets me so much is just the feeling that Finn and kids like him are so fucking dispensable. They're not valued members of society, they're not viewed as human beings with the potential to grow and contribute. They seem to just be very easily discarded. I feel a very palpable sense of marginalization right now, and I'm outraged.

And this whole thing, I swear to God, just makes me want to take Finn and the rest of my kids and go live off the grid. You know, some farm or commune or something, where it doesn't matter what Finn can achieve. Where he can just be.

I don't know what's going to happen now with therapy. I was too upset to give Amber an on-the-spot answer about switching to center-based group therapy. I guess she's going to go ahead and submit whatever necessary paperwork to our pediatrician to get the ball rolling on the insurance front.

Meanwhile, Finn is oblivious to all this bureaucratic bullshit. Either that, or he's decided to find solace in a bottle of vodka.

Okay, the bottle's empty, but I thought finding him with this was fitting.


Kristin said...

Maybe he's offering the bottle to you! Sounds pretty crappy. Good luck.
We were told by our coordinator this week that Max can't have speech therapy now because he's working on crawling. We can only have PT - one skill at a time. Whatever.

jonas said...

man, but I feel that pain. we get very limited services through the county -- our favorite thing about those services is that our PT/coordinator recently told us, after two years, that she's not actually supposed to DO any services, just provide guidance for us -- and have spent A LOT out of pocket (we live in a state where Down syndrome is not considered as eligible for supplemental insurance aid and some medicaid services AND have non-group insurance with a high deductible) to try to get archer some services.

And yet we have that same "maybe service is for the birds" thing sometimes, but it's certainly nice to be able to have the choice, at the very least.

Our state budget also just cut 20 billion from the schools, a good chunk of which is coming out of special education... again, I have mixed feelings about the whole SE track and am glad Archer's not even close to school-age yet, but just another sock in the gut.

Anyway, Finn's adorable and smart and obviously has a kick-ass mom (and dad and siblings, of course) looking out for him, so he's gonna be just fine.

Mel said...

That totally sucks. Bloody bureaucrats and their bloody pieces of paper. I hate them all!!!

I drive over an hour what was once a week but is now fortnightly to a centre for Luke's therapy. I know it isn't your ideal, but for us it works really well. We are in a group with other kids of a similar age with DS and so both he and I have a support network which I hope will stay with us as he grows and friendships which will carry through into the future.

Therapy and therapists are just tools and you are the real therapist. What you do with him is what makes the difference, and I am willing to bet that even if you never did any therapy, the loving relationships he has within your family would carry him through.

"And above all, watch with glittering eyes the whole world around you, because the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it." Roald Dahl in the Min Pins

Monica said...

Sounds like Mama needs a drink, but oh no, it's already empty! I feel your pain, too! We were very close to having that happen as well and with our high-deductible, I would've had to cancel services. For now, I have a County services option, which is still better than chasing better therapists across town and having to pay out of pocket. The best part is that Finn has siblings and lots of opportunities to learn and mimic speech sounds. Maybe you can turn your twins into mini-therapists if they're not already! They seem the perfect age to want to teach :-) Good luck!

onlywhoiam said...

Can we come live at your commune?

Wish I had something witty to say but I don't.

I think it's okay that you went off on your SC because it, in turn, gives her fodder to say to the powers-that-be "hey, this is NOT working for the families we serve". Plus I would think it's preferable to go off on a speech clinician you like and who takes you seriously than an insurance company customer service rep who probably doesn't care half as much.

Sending you a hug... and a fresh bottle of vodka. Jen

Julie said...

Lisa, is it possible at all to get a waiver and ask for those therapists? When we wanted to follow a non-surgical treatment for Bethany's clubfeet, we had to request an out-of-network provider and were granted a waiver. We had to renew the waiver fairly often and we had to do the work to get it going, but our insurance did grant the waiver.

My name is Sarah said...

Lisa this is Joyce. You may be ok with the speech. Your HMO will likely deny altogether as they usually do not provide speech for a congenital delay. So go ahead and get the denial then you can have the therapist you want from the regional center. BS paperwork but it's a game you just have to play. Ugh!!!

Now in my humble opinion from years of observation, the time he has lost will not make a difference in the end. It is what it is when it comes to speech.

Oh and next time - man the boy up and give him a bottle of jack daniels - ok:)

P said...

It is a huge huge waste of time to bring up insurance after waiting so long and doing an eval of their own. !???!

Our kids and families need speech and ASL tips and support at least monthly from birth--globally. Hopefully we can change this process for the families with newborns and support each other.

We need a "roadmap to therapy" summary!!

Keep moving and coping with the stress.

And many kids have developmental spurts, we have had a few in our 22 months. Speech, motor and cognitive milestones reached at the same time. I have read it on other blogs or somewhere too. Give that short sighted counselor or therapist a lecture.

Do we stop dancing, drawing pictures and listening to music cause we learn to read? Maybe we do but we shouldn't!!

Share tips with other special needs families in your area and keep venting. You'll get what fits best let's hope.

ds.mama said...

Lisa, in NY the ped writes a script for a year's worth of therapy (usually says something like Therapy as recommended on IFSP), then the EI folks use it to charge for services... to the insurance company (an HMO for us) who automatically denies it (just a routine part of the process) and then (Medicaid? Not sure because we don't have Medicaid) pays for the therapies. NY is currently considering a co-pay but so far it is still free.

So hopefully you are moving to that type of process! But if not, keep up the fight and never ever believe that Finn will be anything less than awesome with or without EI.

Sasha said...

Sending hugs to you and all your hard work trying to get some services that you deserve. I am in Canada so I am not sure how it works for you. Fight until you can get some leads or other info. It can be so frustrating to fight for services and so draining. Make sure to treat yourself to a little break or something to cheer your spirits and for all your hard work advocating for you son. You deserve it.

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