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Pass Dillon's Law

This petition had 13,901 supporters


According to Medicaid, our seriously disabled child doesn’t have the right to visit his grandmother.

Our sweet 8-year-old son Dillon was born with multiple medical issues so severe that he needs round-the-clock care in order to survive. Fortunately, Medicaid covers the cost of a nurse for up to 132 hours per week. Having this nurse is the only way we’re able to earn money and give our other 3 children as full a life as possible outside of caring for Dillon. We are so grateful for this. However, Medicaid will only cover nursing care in our home, at school or the doctor’s office. This means that a family trip, for any reason, becomes a bureaucratic nightmare so complicated and exhausting, that we usually have to opt out. Because leaving Dillon home alone with the nurse just isn’t an acceptable option for us, our kids often miss out on family gatherings and other trips.

Join us in asking Congress to stand with the medically fragile and their loved ones. Life is more than the four walls of a home. Our family, and thousands of others like ours, are being denied the freedom to pursue normal activities, like visiting relatives  out of town or attending weddings and funerals. This is why we need Dillon’s Law.  

Dillon’s law would not incur any more costs to the taxpayer - it would simply give families the opportunity to travel with their nurse so that their medically fragile family member could come along.

Caring for Dillon is a full-time job. When I do it on my own, my other children are left to fend for themselves. That’s the sad and difficult reality. That’s why, the few times we have had to travel, we’ve been forced into painful ordeals with our Medicaid provider. Most times, our request for a nurse is denied. Only after several appeals do they finally relent, conceding that a nurse is, in fact, “medically necessary”.  Once, after finally winning an appeal for a nurse, we were denied again just a few weeks later, this time for a family wedding. We had to start the process all over again. It’s exhausting and time consuming, and we aren’t the only family that deals with this issue.

Medicaid  knows that the location of the medically fragile individual doesn’t change their nursing needs. But they also know that most families don’t have the energy to keep fighting an appeal. So many families have told me they haven’t been on a trip in years because Medicaid refuses to approve their nurses' hours.

We aren’t asking for more money, we are simply asking to use already approved Medicaid hours to travel with a nurse so families with medically fragile individuals can have a bit of normalcy in their lives.

All kids deserve a chance to experience life. Please join our family in asking Congress to pass Dillon’s Law.

If you are a family directly impacted by this in that you have a medically fragile member in your family that receives nursing care: I ask you to reach out to me! I need you! I need your stories, I need your help to make this happen! I need examples of denial letters to provide with my petitions to help this become a law. Please email me, Tiffany (Dillon's Mom) at PassDillonsLaw@gmail.com

 

Thank you!

 



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Tiffany Kuenzi needs your help with “Congress: Pass Dillon's Law”. Join Tiffany and 13,900 supporters today.