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Friday, February 22, 2013

Something normal

Last night, Jack had a visit from the tooth fairy!!! That's right you heard me, the tooth fairy! I noticed one of Jack's bottom teeth looking crooked earlier this week. When I felt it it was loose! I was immediately excited! Jack would get to experience a normal childhood milestone!  I was also immediately worried that the tooth would come out on it's own and Jack would get choked. This is the type of normal that is so precious to us! I was told when Jack was first diagnosed (dx) that these moments would never happen for Jack. I was told to take him home and love him because there was nothing anyone could do for Jack. You can imagine the grief that followed. That grief is what makes just a simple loose tooth so sweet! The tooth fairy did not bring Jack the usual monetary gift. Jack has no concept of money. So, the tooth that is assigned to him brought him Francesco from Cars 2.  Jack loved it!

Tuesday, February 12, 2013

The TenCare Battle of feb 2013

You all my have heard that I fought tncare and lost recently. So here's my side of the story...

Soon after Jackson was dx with Leigh's I applied with the Social Security Dept. for some help for Jackson. I think we can all agree that Jack's health situation and many others similar to it our why we all pay our taxes. We want our tax dollars to help those people in difficult situations. Well, I applied we received benefits a whole $30 a month and tncare. I didn't care about the money I just wanted the tncare coverage for Jackson. At the time the lady told me if our income increased by $5 we would no longer qualify for SSI benefits. You may ask would I want Tncare. Why would I want the government involved in Jackson's healthcare if Jackson has a private health insurance policy? Good question...
In our case, our private health insurance does not pay for Jackson's private duty nursing (Jack only gets 40hrs a week), diapers (forget about them paying for wipes), some of Jackson's durable medical equipment and has restrictions on physical, occupational and speech therapy. The private insurance called the second wheelchair that Jackson needed due to growth a convience item. They wanted him to continue using a wheelchair that was too small for him. As you can imagine using ill fitting equipment on a daily basis can cause a slew of other medical issues.  I am so glad we had tncare coverage at that time because they paid in full for Jack's wheelchair. They also pay for Jack's diapers that the insurance says is not covered in the policy.  There is a myth I would like to attack right now. Just because someone has a private health insurance policy doesn't mean that all their medical needs are met/covered by the policy and that person has no worries. I challenge all of you to really look at your health insurance policy. Read the information they send you, including the fine print. You will be surprised. The days of 100% coverage on all things is gone my friend. It is an 80/20 at best insurance world and don't forget about those outrageous individual and family deductibles that have to  met before they will even pay the 80% of the allowable charge and in some cases you don't even get to count your copay against the deductible. READ my friends, READ!

So Jack got TNcare through SSI. We had an small increase in income and lost the SSI $30 payment but got to keep the tncare. He was put in the transitional medicaid category. They are transitioning you off medicaid. The transitional category only lasts 12 months. After the 12 months you must reapply for tncare. I reapplied after our 12 months was up and was told we did not qualify for tncare but we might if we had enough unpaid medical bills. I submitted all our unpaid medical bills to see if we qualified for the Spend down category and we got to keep medicaid for another year. Oct. 2012 it was time to reapply again. This time when I submitted unpaid medical bills they didn't count. I was told they were to old to count. "What" I said. Come to find out, when you submit unpaid medical bills for spend down the bills must be incurred in the month of application or 3 months prior. I disagreed with that decision so I appealed. I scrambled around the house for 2 weeks planning my side of the case. I found every receipt I could that would count for spend down. When we got to the hearing I listened to the states evidence and their side. then I got to tell mine. I told about Jack's health condition and all the receipts I had pulled together but it still wasn't enough to meet the magic spend down number. The judge said I should have submitted the receipts at the time of application. I argued that all I was told to submit was unpaid medical bills. No one and no where on the application does it tell you what counts for spend down. I had to search on the Internet myself and call a lawyer with the law and justice center to find out the rules for spend down. None of that mattered to the so called judge. He asked me what my witness would testify to and I already knew what she would say and knew it would not change his mind.  After I realized none of my hard work mattered to him and he had already made up his mind I decided to make the hearing last as long as I could and waste his time. I was so angry and I had no way of doing anything about it. So I decided to talk as much as I could so I could delay his docket for the day and hopefully get way  backed up. I think it worked and I hope he had a crappy day like I did. I know that is not the right attitude to have but it is honestly how I felt at the time. I was a desperate, angry mother and just wanted help for my child.

For those of you that may not know difference between medicaid and medicare, SSI and SSDI, I am going to teach you.
 The federal government gives money that you paid to it called taxes to all 50 states to help cover the part of the cost of state run health care called medicaid. Each state also uses state taxes to fund their medicaid program. Each state calls their medicaid program a different name, in Tennessee it is called TNcare (tencare). Each state runs their medicaid program according to their own state laws. They have rules concerning who can qualify for medicaid, what they will cover and how long you can keep it. So who is eligible in New York may not be in Tennessee. What is a covered cost in Tennessee may not be in Ohio. Medicaid has a financial eligibility component to it. You must meet their strict guidelines concerning income and resources in order to get TNcare. They have a computer program that does it for them because it is so complicated. In Tennessee their are a bunch of different categories that one may qualify for after you meet the financial part. In other words it is mainly geared to help the low income get healthcare. They don't care what your dx is they just want to know how much money do you make. You must be under 65 to get medicaid.

Is run by the federal government. States have no authority with medicare. You have to be 65 to get benefits or be a dependent of a parent that is receiving benefits to get coverage. Again your dx doesn't matter. The only thing that matters is age and your pocketbook.

Spend down-
So now you know their is a financial component to medicaid. Your next question should be... What do families do if they make to much money to qualify for tncare but not enough to be called independently wealthy and have a sick child. In other words you ain't broke enough for the state to help but you still broke! There is a category called spend down. You "spend down" your "extra income" to meet the financial guidelines. You can count health premiums, copays, OTC, prescriptions, nursing costs, and mileage (.42 per mile) round trip to doctor and pharmacy.

SSI-Supplemental Security Income-
Income people receive from the government (again your tax dollars). There are again financial components and mathematical formulas to determine eligibility.

SSDI- Supplemental Security Disability income
There are not any financial components to this but you must prove disability. In order for children to receive benefits they must have a parent that is retired, dead or disabled and receiving benefits.

I could be wrong on some of this but this is how I understand the system to work today. Sometimes you win and sometimes you just limp away from a battle, lick your wounds and fight again another day. I am forming another plan as I type this. I will keep you posted to let you know if my plan works.