Friday, May 27, 2011

Bye Bye CES Waiver

Hannah has been on the CES Waiver in Colorado for a few years.  The past couple of years we used it heavily. She was able to do hippotherapy with The Right Step (highly recommend them), respite care, behavioral therapy including ABA.  They bought her a swing set and a tandem bike and platform swings, etc.  It has been a benefit in helping Hannah and us cope with her issues from day to day.  The other day it was time for our annual meeting with Developmental Pathways.  This is the meeting where we go through all of Hannah's issues and document them in order to plan the next year.  It is always very painful for me to sit down and have to look at each and every thing that she is or isn't doing that she is or isn't suppose to do if she were neurotypical.  Steven and I have been talking off and on lately about forfeiting the services and we have come to that decision. Forfeiting the services that the CES Waiver provided is a huge step...a huge statement that we are making.  We are essentially giving up $35000/yr worth of services until she is 18 or so.  When Steven told the service coordinator, he said that she was dumbfounded and that she didn't know of anyone just forfeiting these services.  We know that there is a long line of kids waiting to get on the Waiver, kids with parents that have no hope, kids that need 24/7 care like Hannah used to be.  We just couldn't in good conscience continue to take something that we didn't need.  It feels so good to say that!  Three months ago we weren't ready because what if BB wasn't what we thought it was even though we knew it was a proven program.  We needed the CES Waiver to help us get through hard days and nights and it had its place but now if we continued it then it would just be a crutch.  Brain Balance has given me the confidence to go out in public without that stabbing pain in my neck and shoulders because of the stress and anticipation of stress.  We don't need respite care anymore.  I actually enjoy going out with my children (most of the time).  We don't need a behavioral therapist anymore.  I used to make jokes with Steven about how I felt like I was in prison and the warden Hannah decided when I got to eat, go to the bathroom, cook dinner, go get my hair cut, etc.  If I could work the care of Hannah out then I could do this or that.  It was usually so much trouble that I would just put off going to the grocery store until we just didn't have anything to eat or put off getting my hair done or things of the sort.  Well, the prison warden is now letting me outside for some much needed sunshine!  Yes, that's exactly how I feel.  I feel like I've been in a dark prison cell and I've been let out to get some sunshine.  I just feel free and safe to go out with my children.  I can't explain how much I have longed for this simple pleasure...the pleasure of going out to one place with my family without stress.  For so long our family has been split up.  Steven takes Garrett and Abby to church and Hannah and I come later.  I take Garrett to his game and Steven stays home with the girls or vice versa.

Hannah has a long way to go but for now that sunshine sure feels nice on my face!

7 comments:

  1. You guys made the right decision! By God's grace Hannah will keep improving. Enjoy the sunshine! Can't wait to go camping again with you guys :-)

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  2. Hi Monica! Steven forwarded on your blog to me after we talked this past weekend about you and the kids. I have tears streaming...no pouring actually...down my face. What an amazing post..and an amazing blog. I have read everyone of your posts. You and your family will be in my prayers and thoughts often. I am thrilled with you that Hannah is doing so great! Praise God!! I look forward to seeing you again and watching the boys play BB this winter! You are an inspiration to me. God is good...My heart is rejoices with yours! XO Lisa Wynja

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  3. Thank you so much for you selfless decision. My son Daniel passed away while on the waiting list and I know there are many others. Again Thank you and enjoy your daughter!

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  4. The CES waiver is rather a joke here in Trinidad Colorado. There is nothing that takes the CES waiver as one would have to travel to Colorado Springs everyday and the CCB here is a joke. No one wanted to do respite therapy for only $8.50 an hour. Somy best bet is I lost it. Oh well more money for a so called quote more deserving child

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  6. This comment has been removed by the author.

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  7. New info:
    The CES Waiver is now going to be fully funded-- Bye-bye, waiting list!! :0)
    This, as well as the Children's Buy-In, will help so many families use far fewer other government programs and don't have to live in poverty in order for kids to have medical needs met.
    Rural areas have had some challenges getting providers, but that is changing as well! As for the CCB's, they often are stuck in an old way of thinking and need the support of folks who will take the time to be on their boards and come up with innovative ideas, etc...

    My $.02: Having the CES Waiver ensures kids with high needs will have those medical needs met, families can infuse their resources into our economy and lower debt, and insurance companies will have less reason to raise those crazy rates!

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