Twas the night before the night before Christmas

December 23, 2008 Kyron No Comments

and all thru the house the only quiet was that one little mouse! And that’s because he couldn’t get a word in edge wise for all the ruckus from excited children! icon smile Twas the night before the night before Christmas It’s pretty amusing actually – It’s the first year that our youngest actually gets it and Katherine is quick to show her vast knowledge of everything Christmas – be in decorating trees, making presents, wrapping or the tradition of feeding Santa. She’s quick to remind him she’s the authority on all things Christmas.

It’s also interesting the difference in the two Katherine’s that I see. Katherine is quick to succumb to her innate desire to be a child and the center of all attention. Just envision the shining star over a manger in Bethlehem…..kinda like that icon wink Twas the night before the night before Christmas But when given the opportunity to rise to the occasion she can really surprise. Maybe that is the key – being given OPPORTUNITY.

I’m the first to admit – I find it hard to believe my kid is 17. She’s still my babygirl! LOL I do however TRY to give her opportunities to act her age wherever possible. Not that I’m perfect about that. We’re blessed however to have a woman who comes in to help us – because of Katherine’s behaviors in large measure in addition to working with Katherine on her behaviors and helping us handle her when she’s out of control, she helps Katherine with all types of things. Getting her behaviors under control, activities of daily living and life skills – things she will need to be a productive member of society and to hopefully have an opportunity to live on her own.

Katherine’s helper/worker/support person is paid for by a medicaid waiver. For those of you who have one for your loved one you know what a blessing it can be. For those of you who have someone on a waiting list you know how important it could be. For those of you who do not have or know about medicaid waivers let me give you the basics in a nutshell. A waiver as described in the Merriam-Webster’s dictionary as “the act of intentionally relinquishing or abandoning a known right, claim, or privilege ; also : the legal instrument evidencing such an act”. In this case it means that in certain defined circumstances medicaid will allow individual states to abandon certain rules for granting medicaid payments for things it wouldn’t otherwise pay for or waive certain requirements (such as financial ones) to give states flexibility to allow medicaid coverage. The waivers differ from state to state. You can find out more about waivers that may be available to you in your state by checking here.

The waiver would be a wonderful thing *IF* people who needed one could get one without waiting on a list for YEARS. The other major problem is that while waivers are federally funded – they are managed by the state and are not transferrable so once you have one you either stay put or – and it’s a big or – you start the whole process over. When I tell you that starting over is not desirable – just trust me on that.

Waivers are actually a pretty cost effective measure too – keeping Katherine at home costs the state FAR less than if the state needed to pay for her to be institutionalized.

Its for this reason I’m hoping some of you will be willing to go over to change.org and support an intiative for waivers being fully funded. You can get directly to this initiative by clicking here. Some of you may have seen the widget I place on the page the other day.

I hope that you all have the best of holidays – whatever it may be that you celebrate. Holidays are for families and bringing out the best in people. Waivers are like a present you get to have everyday – it gives those of us blessed enough to have one for our loved one the ability to have them living at home or other settings our loved ones approve of -  giving them opportunities that you and I just assume we will always have. For us, Katherine’s waiver means everyday is a blessing and an opportunity for her to grow and rise to that occasion.

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  1. Reorganization part 2: Must have stayed at a Holiday Inn Express last night

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