Spina Bifida Clinic

[Crispy]

So the Spina Bifida Clinic in Orlando called me today to let me know that my insurance will NOT cover Vincent going there. BOO!!! The doctors that Vincent is going to be seeing are great, but it would've been so much easier to see them all at once and making one 1 hour trip and talking to all of the docs at the same time, instead of making several 1 hour trips. The nurse that I talked to on the phone was wonderful though and is sending me a care package with a bunch of information, and she said that I can still stop by and that she can get me in touch with other parents in the area.

[Summer25]

Can you go to All Childrens in St. Petersburg or Shriners in Tampa? They both have sb clinics. Not sure where you live in the state.

[Ziggy]

That stinks. Our primary insurance won't cover some of our myelo clinic costs but that's where the BCMH (bureau for children with medical handicaps) comes in. That's what Ohio calls it, but I bet Florida has a similar program. It covers public health nursing and our myelo clinic service coordination. Maybe contact a social worker and see if your area has something similar.

[Crispy]

Shriners and All Childrens are both about 3 hours from me, but we decided if my husband gets a job in Tampa that we will contact them ahead of time. I talked to a social worker at the hospital and she said that we can apply to CMS (children's medical services). It's health care for children with special needs, but the baby has to have medicaid to get approved from what I understand. I have a phone interview with social security tomorrow to see if Vincent can get approved for SSI, but because my husband is in the military and makes a good amount of money, I'm not sure if we will get approved to have medicaid as a secondary insurance.

[Ziggy]

Ask a social worker about a medicaid waiver, too. Each state has a different program, and most have waiting lists. But what it does is separates a child with a disability from the parents' income and assets when applying for medicaid. Once that's complete, you'll get a medicaid card and it should cover stuff like myelo clinic, physical therapy, etc. It works as secondary insurance, a backup to your Tricare.

[Summer25]

Ohh I forgot about med waiver. FL has a fairly good one. I'm on the part where I get a certain amount each month and I decide where it goes. I have a purchase plan that I follow, but I also have a savings that I can keep money that isn't used in and it can get used for big items. Just finished remodeling my new house with some of it. So yes, definitely try med waiver.

[Crispy]

Boooo. Social Security called me today and Vincent was denied for SSI because my husband makes too much money...which means he is also denied for medicaid. I guess I will call DCF tomorrow to see if we can applied for the medicaid seperate. I was really hoping to get the medicaid because we are having such a hard time finding a pediatric ortho that takes our insurance! We had a repeat renal ultra sound today for Vincent's new urologist that he will see next month. The Tech said his kidneys look really good to her :) I'm excited to meet the Urologist! He seems really nice, and is meeting us on his off day so that we have time to sit and talk with him!

[Kari]

Crispy, make sure you ask specifically about a Medicaid Waiver. The waiver "waives" the income guidelines.

[Crispy]

I will definitely ask about that! :)