Health insurance - It's unfair...

[niccig]

A friend is pregnant with DS#2 and just had a positive amnio for Down's Syndrome. Her husband can't take time off work - they're both self-employed and there's a real concern about whether their health insurance company will cover the baby. If they were in a group plan, things might be different, but it looks like either their policy won't cover the baby or the premimums will increase dramatically. So they've decided he needs to keep working. She works from home and is taking on more work too. She's so upset, she needs him to be at home now. She doesn't want to be alone, and several of us are there for her, but we're not her husband.

We're trying to get them to talk to support groups/counsellors etc, as we're sure there's something that can help with the financial concerns. But she says she's not ready to talk to anybody. But if she does, it may remove those worries. She really really needs to talk to someone who knows what they need to do. It's just not fair.

[newmomto3kids]

I have never heard of a health insurance plan not covering a child born with a genetic disorder...but I have limited experience with individual plans. I would urge them to check with their state's medicare program.
There are all sorts of programs that may be able to help financially. Social Security Disability, Zero to Three, Easter Seals etc.
I think their best bet is to ask their OB practice to refer them to someone who can help with their concerns.
Good luck to them.

[pb&j]

I'm so sorry to hear of your friend's diagnosis. It's really life-altering to get bad news during a pg, and it's hard to process it all at once. Her OB's office should be able to hook her up with a social worker at the hospital where she's delivering, and they can work with her to get health coverage for the baby. I'd be shocked if an individual plan covered a child with DS, but the baby would probably be eligible for Medicaid, or other programs, depending on the state they're in.


-Ry,
mom to Max the one year old
and my girl in heaven

http://www.windsorpeak.com/dc/user_files/37124.gif

[niccig]

Thanks Ry and Cara. I agree that someone, probably a social worker, can help them with insurance. I found something that said that in CA, insurance claim can't be denied based on genetics information. I don't know if that applies to giving the policy in the first place, or once you're on the policy they can't deny it. I know their doctor will give them information, but I don't know if she'll hear it. She's really shut down. Hopefully, in a few days she'll start to get some answers.

[julieakc]

Sorry about your friend's situation. I know the heartbreak a genetic diagnosis leaves from personal experience....DS's diagnosis with PWS (in some respects very similar to Down Syndrome) was about two weeks after he was born.

One of DS's classmates has Down's and I am friendly with his mom...I can ask her if she would be willing to talk to/email your friend (I'm pretty sure she would)....PM me if you want to explore that.

Here's some more info for your friend, who I assume is in CA since that's what you mentioned.

Regional Center is organization that will provide early intervention services for the baby (therapy, etc.) and basically be the coordinator for whatever special services the baby needs including getting enrolled in other agency programs such as medical if that is needed. I would think that she can already be referred pre-birth since the diagnosis has already been made, that way services can start as soon as the baby comes home. Here's a link to the main page:

http://www.dds.ca.gov/rc/RCinfo.cfm

You can find the specific local office by her zip code

As for the insurance aspect, I don't think the company can refuse to cover the baby (assuming your friend is already on the policy)....they might however, be able to raise the rates...not sure. Here's is a pamphlet from the California Department of Insurance that, although does not appear to address the exact issue, is a good starting place and lists some other options:
http://www.insurance.ca.gov/0100-consumers/0060-information-guides/0050-health/upload/Cons_Guide_Health_Ins_Bro_Eng_121406.pdf

Here's a link about underwriting rules on individual health policies:

http://www.insurance.ca.gov/0100-consumers/0070-health-issues/ind-health-insurance-underwriting-ab-356.cfm

Hmm...come to think of it, I think my above-noted mom friend might be on an individual policy.....I will ask her when I see her this week.

On a personal note, I can tell you that DS is the light of my life and that having a child with a syndrome is not nearly as horrible as I thought it would be when I first got the diagnosis. This goes for the mom-friend I mentioned as we were just talking about this a week or so ago.

Best of luck to your friend.

[niccig]

Thanks Julie. I'll pass the information on to my friend when she's ready to look at information. At the moment, I think she's too overwhelmed to take anything in. Another friend contacted the Los Angeles Down Syndrome Association, which is actually 10 mins from my friend's house. The Executive-Director gave a lot of information and even her personal cell number so our friend can contact her when she's ready. I know there's a lot of support she can tap into, and she always has her family and friends.

[julieakc]

Your friend is really close to me then (and thus my friend whose DS has Down Syndome). I am in Burbank and I just looked it up and saw that the LADSA is in Glendale.....so when your friend is ready definitely let me know.

BTW on a side note...I think the best thing you can do for your friend is to be supportive (which of course you already are being), let her vent, cry, etc. Offer her resources and information when she's ready. Don't tell her "it will be all right"....even though I'm sure in time she will come to accept the diagnosis, it will always be a loss of the child she imagined/hoped for and now it's too early for her to believe that one day it really will be ok. You can tell her that even though it will be difficult that she will get through it and that she will have your support in whatever she needs (and mean that). When the baby is born treat him/her just as you would any other baby....praise his/her accomplishments no matter how small because the low muscle tone that is typical with Down Syndrome means that all the milestones will almost definitely be late.

Again, best of luck.

[julieakc]

I was just browsing around the LADSA website and noticed that my friend and her DS (my DS's classmate) have a picture on the website...

http://www.dsala.org/what.htm

3rd picture from the top!

Oh, and I just thought of some info to file away for later....

Initially all the baby's therapy will likely be at home, but as he/she gets older they might recommend center-based (more equipment options) and there's a great place in Glendale.....Glendale Adventist Medical Center - Play to Learn Center. (well, it's actually in Eagle Rock, but right at the border of Glendale) My DS received all his therapy in-home until age 2, and then we started transitioning therapies there to the center....now that he's 3 the school district is responsible for his therapies.

[niccig]

Julie, thanks so much for all this information. She lives in Glendale/Burbank border, and I know there is a support group through LADSA for our area. I do think it'll help for her to meet other families. I've told her there's an entire network of support that can help, but again she's still feeling that she has to do this all by herself. I know that will change once she starts to talk to people at LADSA, her doctor etc. I'll also tell her about all the therapies being at home for the first 2 years. She doesn't know how she'll be able to go to all the sessions with the baby and her toddler, so that should ease her mind. I live right by Glendale Adventist, so if they use the center there, she can drop her toddler off for a playdate with my DS. Actually, her OB is at Glendale Adventist, so maybe she can pass on more information too about the center.

I am being as supportive as I can, but not knowing what to say or do, I don't know if I've been much help. I'm just being here. I took her out to lunch and shopping on Friday while my babysitter had both boys - she did't want to be alone and needed to get a few things done, so I tagged along. I'm also having her DS while she sees her OB today.

Thanks for all your help, I'll keep in touch.