Monday, July 10, 2006

Why Do They Have To Make Things So Difficult?

I have a ton of things to post from the past week, but I just got an email from a friend, and my reply turned into a rundown of my day (without even mentioning all the unpacking I had to do). I've been wanting to post, but I've been tired. Here's why:

Denna's email:
Why are you going to court? I sure hope everything's OK!

My email:
The State of Alabama denied her disability determination. In other words, they say she's not disabled, and doesn't qualify for disability benefits. As of right now, we have to go to court on Sept 14th in Montgomery to fight for her disability. That means I have to have a lawyer, med records, testing, yadda yadda yadda. It's a lot of work (and $$$) just to prove what's true.

Now I know what people go through when they're falsely accused.

There's a chance we can forego the entire hearing if the judge will agree to look over the med records and decide that the evidence is strong enough. Shane [our lawyer] thinks we can't lose. But I still don't want to take out a loan just to make them realize it. It just doesn't seem fair. And I told the lawyer in Montgomery (for the State) so. I don't see any reason why we have to hire Shane, go all the way down there, and spend thousands of dollars just to give them some paperwork to prove our point. We'll see if the judge will be benevalent. I'm praying that God will open his eyes to the severity of her condition. That it's NOT just "epilepsy".

By the way, if we win the case---we don't get any money. Just a lifetime benefit that will eventually be worth the cost, but not anytime soon. It would probably take 5 years to be worth what it'll cost us to go to court!

I sure hope God sees fit to not make us go through this. It's been a strain.

As it is, we got denied her disabilty check today (totally different State department). She qualifies disability-wise, but you can't make too much money in order to get the monthly check.

We make 60-something dollars too much a month. How's that for a let-down?

That check would've been nice. It would help pay for the van that we had to get because of her needs. Not to mention the prescription co-pays and doctor visit co-pays. Nevermind when she's hospitalized in August for some testing. THAT co-pay should be fun (feel the sarcasm?)

Sorry to sound like I'm dumping. It's been a crazy day. I'm not all that upset. I alway know in the back of my brain that God will work it all out. I just get kinda frustrated with the system sometimes. Like I have nothing better to do than to fight for her rights. It's a lot of work. A lot of phone calls, a lot of paperwork, a lot of fighting with people to just do their job and to realize that I didn't ASK to have a sick child. Sheesh.

On the brighter side, Make-A-Wish called today and they should be arranging to come over some time this week.....very good!

And as I'm writing this, Michaela's having a seizure.....

the irony of it all

9 comments:

JSmith5780 said...

Hey Kelly- sorry for all the frustration. I know every state is different, but here in NY we have the Medicaid Waiver for developmental disability...it's through the OMRDD (office of mental retardation and dev. disability). It is based solely on the child's income...and what child has income? My understanding is once a child qualifies for that, it's easier to get disability coverage as well. We have a 'rep' from the Epilepsy Foundation that helped us through all this. Perhaps you could see if the Epilepsy Foundation has a branch near you?

Also, here is a link someone posted on our support group...it lists waiver programs by state. Maybe that will help. There is no reason she can't at least get Medicaid to help with co-pays.

http://www.pascenter.org/state_based_stats/

Kelly said...

You would think that that would be the case in EVERY state, but it's not. Alabama doesn't just go by the child's income. We are trying to get a "disability" waiver (and some day, we'll try to get the MR waiver), but that's where the State said she WASN'T disabled.

Once she gets the waiver (after all this mess is cleared up), she'll get Medicaid, and they'll pay for all the co-pays and such like you said. However, we can't get it flat out because we make "too much".

JSmith5780 said...

UGH- we would never qualify either if our incomes were accounted for. Like I said, it was really the local branch of the Epilepsy Foundation that got us on the right path. They made sure we had all the diagnoses and proper paper work. They also help us get reimbursed for medical travel over 50 miles from home!! They even hooked us up with a local foundation for some equipment nto covered by insurance. Here are the two branches in Alabama (not sure exactly where you are)...hopefully they can help you as much as they helped us.

Epilepsy Foundation North and Central Alabama
http://www.epilepsyfoundation.org/ncalabama/
701 37th St S Ste 8
Birmingham, AL 35222-3222
(205) 324-4222
(800) 950-6662

Epilepsy Foundation South Alabama
http://www.epilepsyfoundation.org/SouthAlabama/
951 Government St Ste 201
Mobile, AL 36604-2425
(251) 432-0970
(800) 626-1582

Also, when I was having a tough time...I just emailed my town rep for the county. I explained to her the situation...we had his Medicaid card in 2 days. If Austin can qualify, Michaela can qualify...he had Infantile Spasms and now just has clonics (although they are controlled). He also has a brain lesion in his left lobe. BUT, all this is cake walk compared to LGS.

Jen

kas said...

I love you Sister Kelly...
and Michaela
Noah
Caleb
Libby
Asher
January Morris
AND...
faithful Bro. Chris

Kelly said...

JSmith-
Who needs the internet when they've got you?

Thanx a bunch, my friend. You never cease to amaze me with you wealth of information!

KAS-
Tell your hubby that I'm going to be needing some encouragement soon--hint hint! ;)

baSfsoGp said...

I didn't realize how "unfair" determining disability was until my sister-in-law had to sue for her rights to disability. Her private retirement provider had approved her disability but she couldn't get Social Security to approve it. The private provider took care of the lawsuit and was reimbursed for their efforts by the retroactive benefits she received after they won.

I had always thought until this happened that it would be the other way around: Social Security would be the first to recognize a disability and you'd have to sue a private provider to get benefits from them. Not so.

She was told by the private provider that it was routine to have to sue to get the disability.

Anonymous said...

For whatever it is worth to you do not give up on the disability check. Keep applying. We were like you always made just a little too much. I have heard that most people have to apply at least three times before they get it. We applied twice and did not pursue it any further.

Adventures In Babywearing said...

I am so sorry to hear you go through this. You know I know what you're going through. This is simply unfair and unjust. I am so happy you have heard from MAW. They are wonderful! Of course, if only you could wish for not another seizure... I do know exactly what you're saying when you aren't bogged down by all this and know it's in His hands. Your family is in my prayers!

Kelly said...

baSfsoGp-
You're exactly right: Shane said as much, that they routinely deny disability, and you have to sue for it. Just plain wrong, if you ask me.

anonymous-
We WILL keep applying for the check, since Chris' pay is based on commission, and varies slightly from month to month. However, if you already get the disability check, it just so happens that you get the disability for the waiver automatically. Hence, the court case would be moot. But, unfortunately, it won't happen in time.

Interestingly, once we have the baby, we will most definately qualify (unless Chris gets some kind of major increase at work).

Steph-
HA! If they only had MAW for parents! You KNOW what I'd wish for!

(That's OK though, God's got His own "local" chapter :)