This entry is going to be a bit tricky, which is why I’ve been mulling it over in my mind since Thursday evening. I woke up early this morning to start writing, so I apologize in advance if it seems scattered, or if things don’t seem to make sense. I’m trying my best to explain what’s going on in laymen’s terms while still not totally understanding it all myself.
Here’s what’s going on:
We found out last Thursday that Claire will no longer be eligible for her A&D waiver (age and disability) which is how she qualifies for Medicaid. Her eligibility will run out end of February because you have to reapply/get re-evaluated every year. While it’s a pain to reapply, I do think it’s good to reassess and check in each year to help avoid anyone who may take advantage of these services. That’s not where my issue lies. My issue is in the guidelines that have been changed – read further to understand more.
In essence, the A&D waiver, “waives” the income factor for families applying for Medicaid and grants Medicaid based on the person’s medical needs instead. We’ve applied for Medicaid several times since having Claire, but get denied each time because our income is too high (you basically have to make next to nothing to qualify). So, the way we were able to get her on Medicaid last year was that we were finally approved via the A&D waiver because the guidelines change from birth to three, and since she was turning three – her level of care and medical needs was significant enough to qualify her. Hooray! Here’s what has been so great for us, as parents, to have her on the waiver:
All of her therapies are covered. This includes her weekly PT, OT, and ST which would normally cost us hundreds of dollars each month (even with primary insurance).
Because of these therapies, Claire gets the support she needs to help her meet her full potential. She’s learned how to chew (yes, something we normally don’t think about but kids with low oral muscle tone have to work to learn), how to drink from a straw, how to crawl, how to walk, and her device which has opened doors to communicating and given her the confidence to start finding her own voice.
We get diapers every month because they are considered a prescription. Claire is three and a half and isn’t potty trained, and she’s no where close. That’s not typical. She can’t get communicate when she needs to go, let alone have the strength to get herself there, go, and wipe independently. That’s just not a reality for us right now. So, having diapers funded for us has been a tremendous help.
The waiver helps cover some costs for specialists. Claire sees: neurology, genetics, endocrinology, orthopedics, ophthalmology yearly – if not more. These are not negotiable appointments. We don’t go for fun, trust me. We go to keep tabs on her, update or plan, and make sure she’s getting the best care possible.
In May she had a repeat brain MRI and extensive genetic testing done, which lead to some incredible findings for us. We would not have been able to do this on our own – the genetic testing itself is thousands of dollars – not including the MRI, anesthesia, doctors costs, room costs, etc.
On Thursday, at our re-evaluation, we went through the new checklist – the new guidelines. And unfortunately found out Claire will no longer be eligible for this waiver. She missed qualifying by ONE POINT. As you can imagine, having this bomb dropped on us was quite the shock. At first, I felt like I handled the news pretty well. The criteria for qualifying are pretty drastic, so a part of me was like “Well, I mean, I guess we should be thankful her level of care isn’t that intense.”
And then, as it started to settle in, I became angry. I still am. The new guidelines are so strict, it’s nearly impossible to qualify for. While Claire may not have the highest level of need compared to other children, she still has significant needs and should be able to receive the help she needs without fighting tooth and nail to get it.
I’m frustrated and disappointed, at the misinformation and ignorance of the people (“nurses” and “doctors”) who made these changes. Clearly, they are so far removed from the daily impact and the incredible support that comes from this waiver. Are they up late at night, sick to their stomachs, wondering what child, what family, isn’t going to be able to afford the basic medical needs for their disabled child? Are they worried about the long term affects this will have for that child and their family? Probably not. Their perfectly polished guidelines are eliminating families and children in need because they do not meet a certain number of “checks” ex: 6 out of 7 in one category (medical) or 3 out of 5 in another (activities of daily living). Doesn’t matter which categories are checked, more severe or less severe, if you don’t meet that magic number…you’re out!
If you look at our state flag, it says “Equality before the law.” How interesting. Are we really upholding that?
A family shouldn’t have to choose between quitting a job or getting a divorce so that they could reapply and qualify due to income to receive Medicaid. They shouldn’t have to move to the next state over because their waivers are much better than ours. That’s insane.
I’m not writing this post to gain your sympathy. Being sorry, having a pity party for ourselves isn’t going to change anything right now. I’m writing this to spread awareness (because if we, a family who receives this service, were blindsided by the news, I would imagine you don’t know these changes were made either). I’m writing so that together we can come up with a plan of action and do something about it. We can’t sit idle thinking someone else will stand up, someone else will say something … because they won’t. It has to be you. It has to be me.
So, gather around me, troops. We’re going into battle!
Go here and go to the last paragraph, click the blue link next to “Comments may be submitted to” and comment. You can comment until January 9th. “But, I don’t know what to say?”. Say something like this:
It’s been brought to my attention that major qualification changes have been made to the A&D waiver for Medicaid. I do not support these changes and the negative impacts these implications will have on hundreds of families across our state. We need to defend and stand up for those in our community who are vulnerable and at risk. Providing them the services they need at a young age will help them gain the skills they need to reach their full potential. I urge you to revoke the most recent changes and reinstate the old guidelines.
*It’s important you stress A&D waiver. These comments are technically for the DD waiver (which is different), but any comments made must be addressed, so use this to make your voice heard for the A&D waiver.
Join me this Wednesday (January 9th) @1:30pm in Lincoln for a public forum. This is open to EVERYONE. This is a meeting about Medicaid and long term care, but they must address every public comment made. Join us. The more people who can be there for support, the better. Even if you don’t know what to say or how to say it, show up and be present. There is power in numbers.Claire and I will be there. I’m hoping to share our testimony, give them a story, a face, a family impacted by the waiver, and pray that we open some minds, and soften some hearts and a change can be made.Address: Nebraska State Office Building
Centennial Mall South Lower Level Room A
Lincoln, NE 68509
We are one of the first families affect (since it’s so early on in the year) and we need to take action now in hopes of preventing it from happening to other families. Please pray for me to have the courage, wisdom, knowledge and strength I need to plead our case and the case of so many children who will fall through the cracks and lose the support they and their families need. You guys, this is a big deal. A very big deal. We can not stand by and let some of the most vulnerable in our society get trampled over, taken advantage of, and silenced because of misguided and misinformed law makers. Please, I beg you, join me in my efforts. We can’t do this alone.
Comment, email, or message me with any questions. I may not have the answers yet, but I will work to find them.