Friday, August 24, 2012

Discouraged...

Some of you are aware of the Medicaid waiver program in Kentucky and how I have fought and fought for Levi to be approved. It is a long, crazy story that I am too frustrated to get into, but he was assessed last June approved for minimal services in August. We didn't even find out he was approved until October. The funds couldn't be put to use until months later, and in March I applied for a budget exception to get Levi approved for more. His increase was granted just two months ago. Every year, we have to do a new assessment and reapply. The assessment was done this month, and the new start date was Aug. 18.

I got a letter Monday stating that he has been denied ANY SERVICES AT ALL. Nothing.

I am sick over it all. I spent the week working on my letter of reconsideration and gathering letters from the pediatrician and Levi's therapists. I normally have the strength to press forward for Levi and fight for him, but I have had a few, "I did not sign up for this" moments this week. I have hardly been able to eat (and anyone that knows me understands how unusual THAT is).

And, oh...Remember that new physical therapist I am so fond of? She got a new job and will only see Levi one more time before we move onto our third physical therapist this year.

We could hear something about the Medicaid waiver as early as next Friday, but I am not holding my breath. I am still waiting for the new physical therapist that has been lined up to call me.

I just want to do what is best for this little guy. Why does it have to be so difficult?
Using the curtains for a game of peek-a-boo

13 comments :

Becca said...

Why on earth do they make this sooooo difficult? I don't get it. And each state is so different from the next. VA is supposed to be about the worst for services, but we've not had any problems (knock on wood) so far with the Medicaid stuff. Of course we do just hold our breath until they day they say otherwise. But I'm so, so sorry you're having to go through this. I hope you can get a favorable response from them.

Twilson9608 said...

I hear you on this, Illinois has the worst aide period. V gets no assistance other than through the therapy center and that is a very, very small slide on the fee scale. It is discouraging but it is what it is and we got to keep charging ahead. Where one door closes and all of that other feel good stuff.. :p

Lots of hugs! -T

Becky said...

Relying on government to supply anything is sad these days. It is no different across many states, including ours. My friend who has an 11 year old with DS is trying now to get some different services through Mediacaid. She sounds as discouraged as you. Hang in there...Levi will be okay because he has a mommy who will continue to fight even when all strength seems lost. And, will continue to provide even if services are not as many as may seem necessary. Hang in there...you are not alone in these frustrations.

Tonya said...

I'm so sorry, April. I was there 2 years ago with the MPW. So frustrating when you know your LO should be receiving services. Have you tried HCB? That's what we use for Will. Praying for a good resolution for Levi and peace for you.

Anonymous said...

so sorry this is happening... i hate it! hugs from afar...grace

Leah said...

Sorry to hear this, April... :( I'll be thinking of you!

teal915 said...

That stinks. Sorry to hear you're having such a hard time. I think you're doing a great job. I think we all have things pop up here and there, and we get down. At least I now I do.

Lacey said...

It just sucks! Even though Jax is trached, and on a ventilator, we still, in 6 years, have no help besides our private insurance. We are currently applying for the waiver here in cali, one reason why we moved here. He hasn't had his pulmonary hypertension med in a month because my insurance denied coverage, and its 42 dollars a pill! Our poor kids lives depend on other people, and its beyond frustrating!!

Colleen Taylor said...

Romans 5:3-5 ... Persevere, I know you can do it <3

Jenny said...

Aw, April...I'm so sorry all this is going on for you right now...I don't really understand how things work down there in the States but it sure sounds overwhelming!
Sending you a hug my friend.

Aworlow said...

So sorry, dear friend. Take some time NOT to fight. Rest. Cry. Pray. Renew your strength and you can continue. Praying for you!

Isaiah 40:31

Laura said...

Oh April! I'm discouraged for you. Levi is so lucky to have you as his mommy.

Jody said...

Wow, I don't understand why they make it so hard to help the people who really need the help. We live in Arizona and I have a Levi who si 10 months. They help on a curve here. Sending prayers for yr Le I and your family.
Jody