Hello and welcome to my blog

(Laura has been married to her husband for nearly 26 years now. She also became mother to their first child, caregiver and advocate all on the same day of her husband’s hit/run/road rage motorcycle accident that left him paralyzed from the stomach down. This was an inspired writing on the topic in her own words.)

“How do I explain to our daughter why governmental policy took Daddy from us?”

“I’m sorry that you can’t pay me. I am not allowed to earn a living.” “I’m sorry you can’t receive XYZ services because you make too much.” “Because you have Medicare…you can only use this home health service company and no they don’t pull the picc line out.” “You may be a father, but we are not allowed to help you help your daughter because she’s not the patient. Go put her in daycare.” “No we won’t take your service dog trainee outside…get rid of it.” Yes, we have an RN who comes in the morning to take care of my husband but the LTD won’t allow that RN to take care of his wounds. I must take care of his wounds until another agency comes in. –”Yes, we know that! But we are required to train you on this…even though you are not qualified to do this.”

Does any of this sound familiar? Does any of this get your hair on the back of your neck up? We live with this every day. And we understand clearly that as my young husband gets older it will get even worse. At some point in time in his life, he will be forced to go on Medicaid. This will be because of his age. Then they will want him to give up most of what he owns – making him destitute; and then as we understand send him off to a nursing home, because Medicaid’s resources will not be available to us unless we do this.

As if that weren’t enough, these policies will separate our family. They will tear the ideal model of a family environment from our young daughter. She will learn that the very system that is supposed to be helping us…is actually going to take her father, my husband, from us. How am I supposed to tell my daughter why we are now required to be even more destitute then we were before? How am I going to explain to her that in order to help Daddy we have to live even more destitute then before? And, how do I tell her that policy says I’m not qualified to take care of Daddy in the home even if they were to provide assistance –which of course they won’t do on either end of the statement!

If you hear frustration, worry and fear in my words — good! Because if you haven’t heard of Choice Centered Medicaid it is a term that you should start paying attention to. According to the introduction paragraph in the article, “Locked Up by the Government: Elderly and Disabled Americans in Medicaid Bondage” at PRWeb by Sandy Marshall [http://www.prweb.com/releases/Locked-Up/Medicaid/prweb8974572.htm], “….the government says they [the disabled, the senior citizens..] have to be there [at the medical institutions] in order to receive the healthcare benefits Medicaid offers.”

What happened to the societal teachings of keeping the family together; of taking care of our loved ones instead of relying on the government; of working hard to earn resources that would take care of us only to learn that it will be dictated to us how/when/where we will use those resources?

My husband has paralysis from a spinal cord injury along with 3 rare spinal disorders. Two of the disorders took us three three years of standing up to the medical professionals and institutions to get diagnosed. To this day…unless we advocate strongly…his disorders and their treatment still fall on deaf ears. It is for this reason I will not allow him to go into a nursing home…medical institution. If this were to occur, then there will very likely be a great loss in the family.

What is this all teaching our younger generation? That it is okay to shove frail people into institutions so they can’t be seen. Shame on the policymakers. Shame on the people who make those policy decisions to take away our hard earned assets and send our loved ones into locked up institutions. And, shame on me…because I can’t figure out how to tell my daughter that unless these policies change I will have no choice but to put her Daddy into an institution that does not have the staff, nor would its staff be interested in properly taking care of him… because his needs are so high.