We want our legislators to exclude the I/DD long-term-care waiver from KanCare.

April 22, 2013

 

Your Monday Morning Update:

 

I find amusement parks…not amusing! Why?  I hate roller coasters. Every time I agree to visit one of these ominous playgrounds, I allow myself to be coerced into riding the roller coaster.  The ups, the downs, the twists and the turns are not a fond experience for me.  The only reason I do it is because I can’t say “no” to my loved ones.

 

This legislative session and our quest for the exclusion of the intellectual/developmental disability (I/DD) long-term-care waiver is much like a roller coaster ride.

 

I’m not amused:

 

• In my opinion, legislators are elected to listen to the people that they represent.  I know what thousands of you are telling your legislators, yet many of them are not listening. To me, that is more terrifying than being 300 feet off the ground, sitting in a little car on narrow tracks with everyone screaming at the top of their lungs.

• We make progress (an amazing town hall, an editorial in the paper, legislators vowing their support) and our stomachs are no longer queasy, then something happens to squelch that contentment (an adverse article, unfavorable propaganda, or an ill-fated bill).

• We make it through one big drop somewhat unscathed and then notice there’s another one right up ahead.

There is much negativity floating around right now, so I’d urge you to remain positive, diplomatic and judicious.

Legislators are getting lots of material from the Administration as to how to answer your questions, counter your concerns, and generate confidence that they know what they are doing.    

 

• Don’t stray from our message.
• Don’t get caught up in negative propaganda.
• Don’t feel like you need to defend what you know to be best for your loved one.
• Don’t let someone tell you they can do it better, for less, without sharing exactly how they will do it. Many of you have been asking for details, and receive vague answers or a canned response.

Again, plain and simple:  We want our legislators to exclude the I/DD long-term-care waiver from KanCare.

WE will ride that KanCare roller coaster, many times over if we need to, and will endure the ups, the downs, the twists and the turns. We will get off a little anxious and unsettled.  We do it not because we enjoy it, but because we can’t say “no” to our loved ones.

 

Keep writing those letters and communicating with your legislators. The Administration is now distributing examples of how KanCare has helped folks with I/DD needs. Don’t let these examples convince your legislators that KanCare is a good thing for services and supports.  Be sure to share your own medical experiences with KanCare (whether good or bad) but don’t be waylaid by their assurances, justifications, or promises when it comes to providing long-term-care services. These supports are not medical in nature. 

 

You are incredible advocates! Keep up the good work.

 

Warm regards,

Lurena Mead

JCDS Community Relations Manager

913.826.2212