United Brachial Plexus Network, Inc.

I emailed you

Are you receiving Outreach, the UBPN Publication?
If not, please email Nancy Birk and get on the mailing list. It's another good resource of information!

I'm sorry your baby was injured during delivery, but I am very glad you found UBPN.

Peggy

Hello, Michelle. Welcome to the board. I'm glad that you found us, but sorry that you had to be here. It is sad that you are one of the many moms here who begged for a c-section and your wishes weren't respected. I would like to caution you about your appt. that you plan to make with your OB. Just be careful in what you say in case you decide at some point to pursue litigation. If you're just asking questions, then that s/b fine and it'd be good to bring a notebook and m/b someone else to tend to the baby (if the baby is with you) so that you can focus on hearing what the dr. says. Maybe a lawsuit is the furthest thing from your mind b/c you just want to focus on helping Makai, and that's fine, but someday you might change your mind, so it's good to keep good notes now and just to be careful of what you say. BTW, you should also request from the OB's office a copy of your prenatal and L&D records; then also, request the L&D records from the hospital directly (your records and your baby's records including the fetal monitoring strip). That information might tell you quite a story (either accurate or possibly quite the opposite).

I'm surprised that EI denied you already and esp. w/o even going to your house to do an evaluation. Nicole gave you a good suggestion of having the Pediatrician write a letter of medical necessity. Have you seen any specialists, such as a Ped. Neurologist? If not, then it'd be good to and if you have, then maybe that dr. will write a letter recommending EI therapy for you too.

Someone else posted this site, here's a direct link to your state: http://www.nichcy.org/stateshe/ny.htm . Print out the list b/c you'll refer to various names / numbers on there through the years. I notice on the list: "Programs for Children with Special Health Care Needs" -- call them and see if they can offer you any services. Also, every state has a "Parent Training and Information Center (PTI)" listed on their resource sheet -- call yours and see how they can help. I'm sure that you'll find other helpful listings too.

In our state, we have a program where we get medical assistance and it pays for things like therapy copays. I know that NY state offers something too b/c there's a mom from NY who posts here and receives similar benefits as us. Her login ID is "Tanya in NY" and her e-mail addy on her profile here is: Nursemidwife86@cs.com (hopefully that's still accurate). Please e-mail her and I'm sure she can be of more help in getting medical assistance as the programs vary in every state. She posts here often and prob. just missed your note about copays and living in NY.

I hope this helps. Enjoy your sweet baby boy. I like the name you chose for him. Take care. E-mail me if you'd like. BTW, if you thought your post was long, then you must think I've written a short novel. LOL!

~Tina, bpmom@comcast.net, Mom to Nicole (6 y.o. w/LOBPI) & Joshua (1 y.o. w/NOBPI)

Hello and welcome to this wonderful forum. I am truly sorry that you had to find us due to your daughter's injury. I also live in NY State. I live about halfway between Syracuse and Albany. My daughter, Amber, received EI. She started when she was a few months of age (that's when we requested an evaluation). You need to stress that BPI (and also use the term Erb's Palsy) can lead to developmental delays. Stress how important it is to prevent these delays.

We qualified our daughter for a program called Medicaid Waiver. It is essentially Medicaid (all the same benefits of Medicaid) but you qualify your child based on disability and not on household income. You of course have to jump through all the hoops and provide income information only to be denied (denied the regular Medicaid) and then you can qualify for the waiver benefits. You can still have private insurance (which of course would be the primary insurance with the Medicaid being secondary). We have BCBS and then the waiver picks up the co-pay that the private insurance does not. The waiver pays for aquatic therapy for Amber because our private insurance refused to pay for it. This program has truly been wonderful for our daughter's therapy.

We used a Medicaide Service Coordinator through Broome Developmental Disabilities Services. Here's the phone number for our service coordinator and maybe she can direct you to someone who is local for you [(607)432-8860 Ext 312]. Her name is Jaime.

You should get on the mailing list for Outreach if you are not already. Nancy will gladly send you old copies I'm sure if you just email her.

Feel free to email me privately if you would like to chat more. My email is Nursemidwife86@cs.com (no, I'm not a nursemidwife, but rather I am a labor and delivery nurse who has a 2 1/2 year old daughter with ROBPI).

Good luck.

Tanya in NY
(Amber's Mom, ROBPI, 2 1/2 years)

Hi, Tanya. Thanks for replying and I don't know if you read my reply or not, but I hope you didn't mind me mentioning your name / e-mail address. I just recalled you being in a similar program and know that having an in-state contact person c/b much more helpful as the programs vary by state. Anyway, glad you noticed the thread and added some info. You really bring a lot to this board and I'm glad that you post here. ~Tina :O)

I'm glad you mentioned me in the thread Tina as some days I'm at the end of my day with lazy eyes and very well could have missed something. And thanks for the compliment about bringing a lot the the board. Made me smile.

Tanya in NY