Sunday, August 17, 2008

Don't 'dis' my ability!

As a natural innovator, entrepreneur and all-around (r)evolutionary, I am not the first choice to send in to deal with the system. I'm a direct communicator that just wants to get to the point. However, the keepers of the information mete it out in meager portions and it mostly leads to more questions rather than the answers being sought. Keith is much better at this game since he's had a lifetime to hone his skills. However, even he gets exasperated at the lack of solutions available for a problem that has been with our society since time began. That problem? How do we deal with the disabled in our society so that they remain productive citizens?

It has become increasingly clear that our nation's unspoken public policy is to impoverish people with disabilities. And Texas is no different.

In spite of Keith's professional and financial success, as well as the generosity of his friends and family, it is increasingly difficult to make ends meet. But, the truth is that he'll never be poor enough to get help from the state of Texas and, like most true Texans, he doesn't want to live anywhere else. Keith's forbearers moved to Texas before the Alamo fell. They have had a strong hand in shaping his hometown, Victoria, and have contributed to the economy in significant ways.

It is appalling that Texas which, as a state, has benefited greatly from his family's contributions, chooses to devalue Keith's potential by depriving him of the resources necessary to continue as a contributing member of society. And this goes beyond limiting Keith.

As his wife, I am happly committed to doing everything I can to support him in rebuilding his health and get back to participating in a life he wants. What this means is that I'm basically on call 24/7. We have very good Personal Care Attendants who are devoted to Keith. However they are people too and there are times that I have to fill in for them. In addition to managing that schedule, I also need to earn income and, when possible, take care of myself.

By denying financial support to Keith, Texas is also "dissing" my ability to contribute. Like Keith, I am a naturally entrepreneurial and highly productive person. However, the constant strain of managing the home healthcare experience sucks energy at an alarming rate. When I hear the candidates yammer on about the energy crisis I wonder if they are talking about fuel for the car or fuel for the caregivers? I can control how much I drive, however I cannot always control how much I am driven. Right now I'm running on the renewable energy of love, commitment and faith. What I need is money to cover everything else!


Lynda said...

Ah, my friend... so sorry to learn of this, you are such a giving, caring, and wonderful person, and it just sucks that you too, are a victim to our new America... 4 yrs. ago, my life fell apart because of hospitalization and illness, and I too, was told that I yet made too much money for assistance. It has been a constant battle to hold ground since that time, and I know exactly what you are going through, although, on a different level... Keep the faith, I have been led here and there in faith, and have survived, have managed, and have come to some point of reckoning with this disaster of unavailable care for the very people who pay with their sweat and toil... I am here for you always if you need to talk about this, I have always cared for you, and I pray for you daily but will find more strength now that the positive come to you as you need it... blessings dear lady and find peace in the day... I KNOW how difficult it is to realize that we are not as protected as citizens as we had imagined, and it sucks big time, but, the more of us who address this, then perhaps something will begin to change... My heart and prayers are with you always...

Mike Rose said...

Ruth, I am so glad you are doing this. I know from my own experience with ailing parents in the health care system what a tangle it can be. I realized early on that I needed to be present and intervene on their behalf if I wanted them to get decent care. This is not to dis some of the front line workers who cared for them. In fact I came out of the experience with immense respect for ICU nurses. But generally speaking I felt that I had to do a lot of monitoring and advocating. I can only imagine how hard it must be for families who have less knowledge about the health care system than I do.