Saturday, May 3, 2008

Medicaid and SSI Clarifications.....

First of all let me tell you how bad the state of Utah SUCKS for raising a child with a disability.

In our state, having a child with special needs, or major medical needs for that matter does not automaticlly quialify you for Medicaid or SSI. All of this goes by our income, and how much we make a month as a family. Even the Child Support that I get for our oldest son counts against our income. Also, Utah is one of the VERY FEW states that counts projected income, meaning that that if we expect any money for that month, then they use that against us even before we get the money.

I know, it's screwed up beyond belief.

Our only hope is that we will qualify for the spend down program. We will make 15.00 too much in May to qualify for CHIP, which is another program around here for children without insurance. But again, you have to fall within the income guidelines.

The worst part, is that if we lapse any insurance coverage for over 30 days for Rhett, he will be deemed as un-insurable due to a pre-existing medical condtion. (His Down Syndrome) We simply HAVE to keep some type of insurance on him. We just have to.

Our health care system is so freaking screwed up. Here we are trying to provide for ourselves and make a life for our family, and we get the boot on insurance for a child who needs it more than anyone. It's just not fair to Rhett.

You would think that the state and government funded programs would reward people for getting jobs, and help them out until they can get coverage on their own. Instead they make it awfully tempting for people to not work at all and become lazy bums just so that they can take care of their children the easy way.

Something needs to be done in this state, either that or I guess we need to move to a different state, just so that my child gets the health care he deserves.

Have I mentioned how screwed up this is?

13 comments:

Anonymous said...

Wow, I'm so sorry! I've followed your blog for a while, I love Rhett to death! I am so sad for your family with this insurancec deal. You could lose everything and then some without insurance for 3 months with Rhett. You're in my prayers.

RK said...

Illinois sounds the same, DS does not qualify us for anything on it's own, everything is income based. I didn't know any state did, to be honest. That projected income is weird, though. I can't imagine how frustrating this must be!

Anonymous said...

selecthealth.org/Static/Files/hiputahpremiumwaiverapp.pdf

Pam, check this out. Looks like a way to go. Good luck!

BiLlY, sAm, AnD bOyS!!! said...

we now EXACTLY how you feel on this one! Our family has been put through the ringer time and time again on ssi and insurance! i am to the point to just give up on that one! we have fought for almost 17 months now and----NOTHING!!!

Jodi said...

Washington state is bad too....it's all based on parent's income. You have to be dirt poor to qualify for anything.

Marla said...

Sigh. Your state sounds as bad as Indiana. I know exactly the frustration. I wish I had advice. I really do. Something has to give. 15 dollars too much? That is just terrible. My sister's was denied once because she had too much money in savings. How much you may ask? Ugh. Practically nothing.

Sis Sarah said...

Medicaid does definitly suck in Utah. SSI everywhere is based completetly on income, if your income goes beyond the limit, it is always lost.

I hope you can get him on chip. I would honestly ask you DH employer, to pay him less for the next few months. Drop his income so you don't lose the insurance. I know that is totally totally insane but I'd do it.

We choose to stay poor, to keep the insurance and SSI. IN the end we're better off, sucks, but it's true.

Anonymous said...

http://www.utahinsurance.org/HealthInsurancePoolofUtah.html

As was referred to by another poster, if spend-down doesn't work and you cannot find any other coverage, there is a state health insurance pool. We learned of it after 9mths on cobra at nearly $900/mth when our income was just over that each month, but due to "assets" didn't qualify for some members of the family who needed coverage to be on medicaid. You might want to call about this in the meantime just so you have as many options open as possible.

I know you're planning the nissen, but that is one thing you might want to just delay until your husband's work insurance comes into play as well. God is one of miracles, and perhaps He needs to be appealed to on all of this as well. So I'm sure all the prayers on your family's behalf could also include this specific situation. ;) And hopefully His will can be revealed somehow.

Anonymous said...

Are you really going to go from basically no income to $56,800 per year? That's how much you can bring in, with a family of six, and still qualify for CHIP. There are a few deductions in there, too, so even if you make a bit more, you might still qualify.

If there are two jobs, maybe working only one would be a good solution to fall into that income range.

The Bryant Family said...

Utah is not the only screwed up state. Tucker is MEDICALLY eligible for SSI and Medicaid but due to our income as well, we are on a spend down of over 1500 a month. YUP. I am glad we have it just because his insurance is almost at its life time max...YUP, not even 3 years old and almost at lifetime max! I have been through this same frustration as you....you are not alone in this very very screwed up system. I guess if we quite our jobs and lived off the government then our kids would have all the coverages they would need, we would have food in our bellies and a roof. It makes me mad as well that the system promotes this......believe me IF it came down to it, I would choose living on the system to get Tucker what he needed. I was not raised that way but if the government wants to penalize those of us who try to do the right thing then...guess what.
OK, so you got me going as well. Let me be president for the day....just one day!
I can only imagine the stress you have. I think I have stress and then I see what you go through. I pray that Rhett will continue to get better and your family to be blessed.
I have a few things to send for Rhett. I will try to get them in the mail today. Hang tough! Have you called the local DS chapter? Have they got any creative ideas on funds somewhere? We have a few here. I actually have a case worker with our county that keeps up with Tucker and she files all kinds of stuff for us for help with schooling expense or whatever. Just a thought. I know you have probably turned over every rock.

Childlife said...

Can Rhett qualify for a medicaid waiver through Utah? In our state, we were able to obtain a medicaid income waiver because of the severity of our daughter's medical issues through our states Medically Fragile Children's Unit. With all Rhett's medical complications, he would most likely qualify your family for a waiver in our state -- don't know about Utah though. Another possible advocate for your family might be your state's Insurance Division. We've had to file complaints with our state insurance division a couple of times in order to get assistance with maintaining coverage and securing insurance payments for treatment. I really feel for you Pam -- this is the last thing you need to deal with when your child is so sick! :(

Mauzy said...

Isn't it amazing that in the US of A Down syndrome doesn't qualify you for any medical coverage as a "diagnosis" because I agree, in reality it is a "syndrome" which means many things. Some may be medical, some developmental delay, etc.

But then to get insurance coverage it is seen as a "pre-exising condition" to have Down syndrome. Which in our family means no medical issues at all, just an extra chromosome.

Make sure you appeal any denials on the diagnosis of "Down syndrome" as it is NOT a medical diagnosis per se. You have to have a heart condition, thyroid etc....

Leah said...

It is frustrating, isn't it? I'm in Minnesota, and Angela can't get SSI because once in a blue moon her dad pays child support. HOWEVER...Minnesota has more waivers available than any other state. There are GREAT waivers for kids with high medical needs. Angela is on a TBI/NB waiver (traumatic brain injury/neuro-behavioral) because of a stroke she had as a baby. She also has some pretty significant behavioral issues. In Minnesota, the waivers are based on the CHILD's income, not the parents (is that strange or what? But hey, it works.) and we've found a way to keep her on Medical Assistance.