Been thinking of how to continue to inspire our advocates.  Yep, it took eight years to #passtheABLEAct.  The healthcare dilemma is different though. The stakes are higher.  As if healthcare is not enough, for our families this impacts more than just healthcare. It impacts independence, independent living and community support  The tone of our country is more adversarial and downright hateful now than when we passed ABLE. I can almost feel the despair of our advocates through their posts.  It is not dramatic to say that some of my friends feel panicked and desperately unheard.

Then, I think of Rachel. She is not panicked.  Clearly, she gets that this is important. She even prayed about it in the bathtub last night and wanted to be sure that I let Senator Moran know she prayed for him to Vote No. I did. She prays for him and Senator Roberts and Congressman Yoder.

Two of Rachel’s most beautiful qualities are her sense of loyalty and that she believes the best in most people.  She believes that Senator Moran, Senator Roberts and Congressman Yoder are her friends. I do, too. She is fiercely loyal to her friends and this includes them. Her eyes light up when she talks about them co-sponsoring the ABLE Act. She loves to tell how Senator Moran says she is the best lobbyist in DC.  She believes that they will do what is right for her and her friends.

I don’t know what is going to happen with this healthcare debate today. It is confusing to everyone I know including seasoned advocates and my contacts in legislative offices.  Healthcare has been debated since long before Rachel was born, I would like to think  that in this country where we have been so abundantly blessed, we could figure out how to sit down and put our big brains together to craft a great healthcare plan.  I would like to think that we could negotiate a little and that we could all give a little here and there to protect our most vulnerable while doing something about our out-of-control spending. I would like to think that we could remember our most vulnerable citizens who are so often marginalized, unheard and dependent on such pivotal decisions for the pursuit of life, liberty and the pursuit of happiness.  You know that life, liberty and the pursuit of happiness from our Declaration of Independence.

Sometime today or tomorrow the Senate will probably vote to pass a healthcare bill that will most likely go back to the House where they can most likely add amendments. I suspect this healthcare debate will continue for a while to come. Amidst the chaos, our message has been consistent and will continue to be consistent. Our message is:

“Senator Moran, Senator Roberts and Congressman Yoder, when you have the opportunity to vote on a bill that will impact healthcare for millions and independent living and community supports for people with disabilities, remember your friend Rachel. Remember that Rachel knows you are her friends. Remember her smile and the twinkle in her eye and how you have watched her grown from a tween into a young woman who wants to go to college, maybe work in a nursing home or be a Broadway actress, get married and live in a pink house. Remember the first time she told you about the pink house and how she giggled. Remember how you voted for the ABLE Act because it was a step toward her independence. Remember all that and that she’s counting on you to figure out how to work with others to pass a good bill that will protect her and her friends.  Please remember your loyal and true friend Rachel and do the right thing. She’s counting on you.”