Saturday, September 6, 2008

"To whom much is given, much is expected." -Luke 12:48


Thanks for all of the kind messages of support regarding my last post. I truly appreciate your words of affirmation and encouragement! (And yes, thank you to my friend of many years, Amy for pointing out that I do have a history of offending people with my writing! I think that's what turned me from a journalism major into the far more diplomatic elementary ed. teacher).



I had planned to go on a blogging hiatus for a while...but with all of the political hoopla buzzing around these days I cannot keep my mouth shut...especially when this means so much to so many people. SO yes, I am going to be getting political here and if you don't want to hear it you don't have to read it. :)



People often ask how we manage to pay for all of Faith's medical bills. While we do have private insurance, it is not the best (compliments of Denver Public Schools). We carry a hefty premium to keep our family covered and as you can imagine we have lots of medical expenses. It's not just the doctors visits or the co pays for Faith's meds, but the all of the equipment and supplies that carry a high cost. Our insurance plan pays for 80% of Faith's durable medical equipment. Just Faith's ventilators alone cost over $1,000 a month. Our basement looks like a hospital supply room. We have boxes and boxes of everything from suction catheters to tape and gauze. As you can imagine our 20% we would have to cover would reach into the thousands.


Thankfully we do not have to pay these expenses. We are a part of a program that helps people and families who have developmental disabilities pay for medical bills and services. Currently in the state of Colorado there are over 12,000 people on the wait list to receives these services. The average wait is 4-5 years. Because Faith is on a ventilator we were fortunate enough to bypass this wait list and get into the program. Unfortunately this is not always the case. We know of families who SHOULD be receiving these services but are because of some flaws in the system.


Without this program we would surely have lost our home, living God knows where, and in debt up to our ears. This program does not only cover medical expenses for special needs adults and their families but provides vital therapies and necessary funding for rehabilitation programs. I received a letter a few weeks ago about a man in his thirties struggling with a developmental disability who is waiting to enter a job skills program so he can cover the cost of his medical expenses. I read he has been on the wait list for 4 years.


I will never forget the nights I spent in the hospital next door to Faith in Emily's room listening to her mom stressing over all of the medical bills. Their insurance had capped off and they were going to be responsible for the rest of their dying daughter's care. She was desperately trying to get into the Medicaid waiver program to help cover all of the medical bills.

These are real people with real problems. It is difficult enough to live with a disability, worrying about medical bills and services should not be one of them.


On November 4th, Colorado voters will have the opportunity to end this wait list.


Like most government programs this bill does come with a cost. In order to fund these services a 2 cent sales tax would be added to every $10. In my mind it's like spending $100 at the grocery store and dropping 20 cents in the can on the counter for a local charity. In my mind, this program is worth the cost. I love how organization to end the wait list put it on their website:

"Amendment 51 is a small price to provide vital services for children and adults who, thorough no fault of their own, face tremendous burdens every day just getting by. "


I know most people are not in favor of a tax hike- but imagine what it's like for a family not only coping with raising someone with a disability but also struggling with the costs that come with it. Think of the adults who do not have access to vital resources. I believe it is our duty to help those in need. After all you never know when your time of need will come. And, yes I DO believe it is our governments job to hep with these needs.

I was wrong, this is not political, THESE are people, facing hardships because they were dealt an unfair card in life. Please join us on November 4th to put an end to the wait list! If you do not live in Colorado please go to http://www.noewait.net/ to find out how to end the wait list in your state.



If you read all of this, THANK YOU! This means so much to us and the other families waiting to receive services.

Thank you for standing with us to support this effort!

Brian and Jen :)




4 comments:

Dana said...

Nothing like the cause of our children to make us find our voice. Glad your back. It's worth the fight. Good luck. I will pray about it.:)

Marissa said...

Jen,

Thank you for championing the cause, especially when you don't have to!

And how AWESOME the title of this post is. It really made me think about how we are blessed and what we need to do to give back and make sure others are taken care of as well.

Alicia

Ann said...

I've always maintained that I'm willing to pay (a little) more in taxes to help those who need it most and, you've got to know that I firmly believe individuals with special health care needs rank at the top of my list of people who deserve assistance. If I lived in Colorado, I'd vote in support of the cause. Bravo for you Jen!

Hope said...

It's amazing how you've turned everything thrown at you, your husband and Faith into a way to help others. It goes without saying that if I lived in Denver, I'd vote on this issue. I really love the title of this post, BTW. Special needs children need a voice, an advocate. Thank God for people like you.