Back with a Whole New Story!
I last wrote in this blog on February 13, 2008 which, coincidentally, was my husband's 43rd birthday. At that time I had decided that if Oprah wanted to know about iCREATE and the Texas Legacy Arts Incubator, I was better served by stepping away from the keyboard and showing the world what it was all about. Since that time, quite a bit has happened. iCREATE will be part of the STELLAR campus in Manor Texas, I've gotten married and I have a new story to tell. And, yes, I still want to be on Oprah to tell it!
Let me begin by telling you that my husband, Keith Hogan, is a remarkable man. He is 43 and has Spinal Muscular Atrophy. He's outlived his doctor's predictions by about 30 years at this point. His form of the disease is Spinal Muscular Atrophy Type 2. And, his film tells a lot of the story.
He entered South Austin Hospital with pneumonia on February 18th and, due to his inability to use his hands or legs, there was somebody with him 24/7 to be sure his needs were fully covered. Any night that I didn't stay with him, his mother did. For the most part he received excellent care from caring staff. There were some notable exceptions, but that's to be expected I suppose.
Keith did not return home until May 27th bringing new accessories: a trache, a ventilator and the need for 24/7 personal care attendants. This automatically doubled our PCA expense to almost $9000/month. We attempted to get help from the state of Texas, but don't meet the poverty level necessary for Medicaid and are not wealthy enough to continue paying out of pocket.
This is where the real work became clear and where our new story begins. The story I want to share with Oprah and the world is about the shameful, unarticulated public policy of impoverishing and marginalizing people with disabilities. To deny access to all the things that make life worth living so that a person might receive moderate support from an uncaring authority is patently un-American. There is no life, no liberty and no pursuit of happiness. We provide more support to visitors to our shores than natural-born productive citizens whose only limitations are physical.
At the present time many potentially productive members of society are being warehoused in nursing homes which are funded by Federal dollars, little of which is spent on quality patient care. This can be changed by the Community Choice Act which is based on the concept that the funding follows the patient, thereby empowering the individual. We are in an election year and have two Presidential candidates who have come down on opposite sides of this issue. Senator Barack Obama is for the Community Choice Act; Senator John McCain is against it.
With her early endorsement, Oprah Winfrey brought Senator Obama to the forefront of the American political scene. Keith and I are grateful for that for many reasons, including the fact that Senator Obama has shown by his actions that he is committed to creating opportunity for all citizens whether they can raise their own hands in support or need assistance.
This is the story we want to tell Oprah.