Noonan's Syndrome, Medicaid, etc

[devon]

Hello all,
My 14 month old has Noonan's Syndrome. Recently, a pediatric rehabilitation doctor suggested we look into Medicaid, and the Katie Beckett law (we currently live in WI but are moving to IN). She said we may qualify because of the Noonan's. Does anyone have experience with this? Would it be beneficial? We do have insurance.

Also - my son just got fitted for Sure Steps and I'm looking for any experiences with those - how long each pair lasts, shoes (not a fan of Vans for a 1 year old), etc.

Thanks!
Devon

[AnalogWife]

The Dev Pedi also suggested Katie Beckett to us for our DS with Autism Disorder, I brushed it off at the time, but then I read that the coverage is better than our private insurance and then we would only need to pay for DH and me, which is big savings for us. We're currently in the application process. GL!

[anj_rn]

We did this with DD and here is a summary.

MCD is our secondary (we can not just drop our insurance becasue we do not want to pay). It covers our deductables, copays, meds, basically almost everything that we would usually pay out of pocket for). For us it allows for more therapy and home health nursing (as well as lightening the financial burden).

You can use the social security disability list to see if she would be covered, but you can apply regardless. The Program allows that only the child's income is viewed for a qualification, not the parents.

I would highly recommend it, the wait list and application process can be long, but it is well worth it.

[JessicaS]

Hello! My son also has Noonan syndrome.

We have insurance as well but we have had quite a lot of bills. It would probably be worth it to try. It can be scary how things pile up and with Noonan there are a lot of different things that might need to be looked at or taken care of.

[devon]

Thanks! I think we will talk to our Birth->3 facilitator when we move to start the process. The Ped. Rehab mentioned it _because_ of all the copays, therapies, etc.

AbiMommy - Nice to meet you! My son has S0S1 - how about yours?

[KatWrangler]

Definately apply for the Medicaid and SSI. We didn't qualify for SSI at first because my husband made too much money. However, we do qualify now as well as Medicaid. I am very thankful for both.

[marieangela]

I know that where I live (in PA), it didn't matter how much money we made when we applied for supplementary MA insurance for our daughter. So far, it has covered everything that our insurance doesn't cover. Her therapy and all medications have been free. I would definitely look into it.

[JessicaS]

Originally Posted by devon

Thanks! I think we will talk to our Birth->3 facilitator when we move to start the process. The Ped. Rehab mentioned it _because_ of all the copays, therapies, etc.

AbiMommy - Nice to meet you! My son has S0S1 - how about yours?

Oh hey!!

Mine also has SOS1! What are the odds of that?

[mommy2maya]

my dd just turned two and wears suresteps. She got her first pair in dec, right before christmas and then her second pair about a month ago. She wears DC sneakers, they fit well over the suresteps. Why are you opposed to the vans? DCs are skater style sneakers also, and from what I've heard from other parents, that style fit best over the suresteps.

[devon]

Originally Posted by mommy2maya

my dd just turned two and wears suresteps. She got her first pair in dec, right before christmas and then her second pair about a month ago. She wears DC sneakers, they fit well over the suresteps. Why are you opposed to the vans? DCs are skater style sneakers also, and from what I've heard from other parents, that style fit best over the suresteps.

I'm just not a fan of the style I know it is petty, but I just don't like them.

We ended up getting some XW stride rite that fit excellent on them. Now I just have to get used to him wearing shoes!

So - they lasted your daughter about 6 months? Yikes - our insurance said they will only cover 1 pair/year!!

[mommy2maya]

Definitely look into the medicaid then. My dd also has supplemental medicaid and had no problems when we needed a new pair. It was actually 5m that they lasted all told. The guy who did her fittings said that they need to be replaced when she grew two shoe sizes, so, she went from a 4 to a 5 and they didn't fit anymore. It is hard to get used to the shoes all the time thing. Audrey is my youngest and none of the other kids ever have shoes on, though she doesn't complain about it, actually prefers wearing them.