Noah's Miracle : Toss Out What You Thought You Knew

Today I met with the State and an Advocate from Family Voices to discuss concerns and discrepancies within the CES Medicaid Waiver program. I kind of feel like everything we've all been told and led to believe is all wrong. Which certainly is an explanation for why many parents - most in fact are operating in the fashion that they are. This is definitely a big misunderstanding of how the CES Medicaid Waiver works based on information relayed to families by CCB's. There are still some grey areas - that I still think need clear clarification. Just because in my mind I prefer to view all things with equality.   But, some of it is discretionary or subjective - like respite hours, that are dependent on such factors as parent CNA and the needs of home-based care. Or why one child under one CCB is allowed services that a child in another CCB is denied with an identical diagnosis.

I think the thing blowing my mind the most is all of us are told that our child has a yearly cap. For example it's supposed to be $37,310 for the year 2015, (although all billing statements from the CCB reflect last year's cap of $36,400) but in any event families receive spreadsheets with items that have been approved yearly and it's all deducted from this grand total cap, demonstrating how much you are left with to get your child to the end of the year. All families believe this is their pot of money for their child and obviously get frustrated when they can't access or utilize all of these funds. But come to find out while these yearly figures are caps - maximums that you cannot exceed, it's all request based and that each child under the waiver umbrella is not entitled to that $37,310, the actual figure that the State really assigns to each child is more like around $8,000 from what I'm told. So, while you can use more than $8,000 the max is $37,310, but you are really entitled to as much as they'll approve. It doesn't at all belong to your child.

I still think there are some unrealistic options for families - the appeals process, and how it still can end with Medicaid's agency with the ability to overturn an Administrative Law Judge's decision and then a family's only recourse beyond filing an Exception to Initial Decision, is to file a case with District Court which would cost them in court costs and likely legal fees should they pursue legal representation, most families just can't handle that financially or time wise. I think it discourages most families from that route whether it be with traditional Medicaid or through the CES Waiver.   Is there a way to fix it - likely not.   Just how the system works. The only thing that would block that is to prevent the State from even being able to file an Exception to Initial Decision and I don't see that happening any time soon.

Medically necessary means nothing. You'd hope that it would be it doesn't. Medicaid is not bound to what any doctor's recommendation may or may not be. Yet, yes we're still all very much obligated in getting documentation from doctors and therapists for any request, even though it doesn't entirely matter what a doctor says. The State indicates that the CCB approved Noah's anti-suffocation pillows in error, and that therefore the pillowcases were therefore denied, and that request should be pursued under EPSDT (or what we all know as traditional Medicaid). It wasn't, and it would be nearly impossible for submit a request under EPSDT because for many of these items that Noah needs there is no medical code to be submitted to Medicaid. Without a code it's been my experience that Medicaid will flat out deny it. I've been there with requests like that under Medicaid. CES was supposed to assist with the costs associated with traditional Medicaid denials. If it feels a bit like a an endless circle it is a bit like that. I suppose at this time it's still leading up to a Medicaid appeal hearing, which I'll likely win, which Medicaid will likely reverse with it's filing of Exception to Initial Decision, and then I'll lack the funds to pursue legal action with District Court. Or at least that is how I anticipate this all will play out with pillowcases based upon just briefly touching upon this issue - which was really mainly about how do families go about properly requesting items that are a medical necessity under CES with using my recent pillowcase difficulties as a prime example.

I'm not sure that there is a really easy way to get the state to address unusual requests - or requests that they don't see all the time. Partially, I think because parents are too afraid to ask for them, or that they automatically assume will get a giant no. As sensory clothing really isn't that odd of a request. Although the State said they likely would have denied that too, even though the CCB approved it in Noah's case. I have to come up with how much I'd spend on Noah's clothing otherwise, the State will then decide how much they'll bring to the table. Not sure what that really means, but they'll make me prove with receipts how much I'm spending on Noah's clothing out of our own pockets in addition to whatever they decide is an amount they'll allot to Noah for sensory clothing yearly. It's still a fuzzy area that will require some financial spreadsheet charting, correspondence and communication to sort out until there is a concrete answer on it. There wasn't a firm resolution on it.

And parents if you think you'll ask for something that benefits your child within the home (i.e. a UV light or air purifier) it would be denied under both CES and EPSDT because they are not going to consider something that is throughout the house.   Is there a way to really know what items will face automatically rejection? Well the chart in the manual is a good start, it kind of gives you an idea of what you can and cannot ask for under CES, which is why I think it would be great if all parents had access to it.

I think we made good use of our time, we touched on such topics ranging from but not limited to; homemaking services, FRE fees (which are really terrible that families are being assessed these fees out of items and services that are approved), lack of consistency of utilizing benefits or equal access between CCB's, respite, end-of-year accounting, over and double billing, payment mechanisms for families like providing them with gift cards for funding items. I tried to cover as much as I could that were concerns for our family and other families I have assisted in the community.

Of course when you step up to be the leader to be a voice for others there is always that concern that you might unintentionally ruffle feathers even with your own CCB since you are kind of leap frogging to find answers at the top, that somehow this could have an adverse effect on Noah's future benefits and requests. As it is very much a "mother may I?" System and Mother may just say no, as a penalty. I would like to believe nothing like that would happen, but it is in the back of my mind.   Not that the meeting in any way was out of hand or led me to believe it was a mistake by approaching the State on behalf of Noah and for other families who share the same and similar concerns. By all means it was as productive and informative as I had hoped it to be.

I certainly came out of it with more than I expected in information but now feel like I have to toss out everything I had thought I knew about CES, and start over reading this 90 page manual that I received at the meeting. Something, I think all parents should be handed from the start.   It's basically rules and guidelines that CCB's have to follow in making appropriate determinations regarding services. It also has a frequently requested guideline table which I think looks very informative and helpful.   And in my spare time, I will dedicate and devote time to reading all of it, so that I can give out good and accurate information to others.

I also hope that we can schedule a parent class with the State at some point in the future. Dedicated to simply learning and absorbing benefit rules and guidelines. A meeting that has nothing at all to do with bringing complaints or expressing grievances - but simply about just learning and growing familiar with what we can and cannot do under CES for our children. There is power in knowledge, for all of us. We first must properly have a firm grasp on CES rules before we could ever begin to aim changing any of them.

I still have big goals, with making changes to some of what I have learned. The FRE fee I would like to see go away, which will require legislation and another branch of government. And I still have hopes that I can get EPSDT to add new dietary supplements to its data base so that parents can utilize other forms of nutrition from Medicaid covered funding. I'd also love to see legislation changing contracts with the State such as Enchanced Homemaking categories, increasing State rate pay so that quality companies and services would be more likely to engage with contracting with the State, that too would take some legislation. It would also be great if funding sources were more clear, as some CCB's are fed by local foundations thereby influencing the availability of financial resources to pass along to families.

I'm always trying to make things better, for Noah and for everyone else. Sometimes I feel like if I don't get up and do it, no one is sure going to join my bandwagon. Which is fine, I'm good at flying solo. And in all honesty many parents would be overwhelmed by all this, not to mention it takes a tremendous amount of time and energy to invest in these types of things when you're care-giving 24/7. I hope to re-group and when I have time to digest all this information in my mind and figure out how to sort it all out.

Until then I think I've earned myself a hot cup of tea and 10 minutes watching my garden grow.

Love,