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!
Sunday, August 17, 2008
Saturday, August 16, 2008
Where's Your Wheelchair?
I know that you are all aware of the spiraling escalation of medical expenses. We have been made acutely aware of this firsthand with Keith's hospital stay and associated post-hospital cost of care. Fortunately Keith has very good insurance so the cost of the hospital care was manageable. The complete shock to the system was the aftercare.
On May 27th, Keith was sent home with a ventilator. While still in the hospital, we had been trained to manage the machine and were all reasonably comfortable with the work ahead. To be honest, managing his oxygen has been the easy part. As we've had to deal with disinterested 3rd party billers, burned-out state agency workers and just plain old bureaucratic triple-speak, managing my own oxygen has been a more delicate operation. However, no matter how disinterested the other party, or burned-out the workers, or how triple the speak you have no choice but to engage with the system. The system is not the clean, well-lighted place we would naturally seek for support and solace. However, it's all we've got for now. So, we take a deep breath and dive in.
Let me share one telephone encounter with you to establish a frustration benchmark. The Texas Department of Aging & Disability Services is the agency of record for dealing with state resource support for disabled citizens.
Surprisingly, the phone was answered on the first ring which gave me hope that things were going to go well. The woman on the line was pleasant, however when she heard that Keith was older than 21 and younger than 65, she became a bit less pleasant. Add to that he's on a ventilator and needs 24/7 personal care support, well, the bureaucratic gate clanged shut and I could hear her reaching for the metaphorical key. According to the State of Texas, anyone who is in need of 24/7 assistance has two choices: (1) relocate to a nursing home or (2) pay for everything out of pocket. Well, the first choice was not an option. Keith is extraordinarily gifted intellectually and his only limit is the inability to use his arms and legs. Being sentenced to a nursing home was completely unacceptable. As to the second option, well, we were already doing that without the permission of the State of Texas.
I calmly asked for clarification: "So, what your are telling me is that the State of Texas believes that the only solution for a person like Keith is to force him into a nursing home? There is no support available to help him continue a productive life?" She answered, "Yes, those are the rules of the State of Texas for people like your husband." At that point I thanked her for her 'help' and ended the conversation.
I went into the other room to give Keith the news. Naturally I was frustrated, angry and amazed that Texas actually endorsed taking a incredibly productive citizen and dumping them in storage rather than investing the dollars necessary to keep them an active and contributing part of the economy. Naturally, Keith wasn't surprised. He's lived with this his whole life. He could have ridden the system, but that was not what he was taught by his parents and grandparents. Obvoiusly he's physically disabled, but it's apparent to me and everyone who meets him that there are many more people who have their wheelchair on the inside. And, unfortunately, they are in the majority and have made rules that are in effect...for now.
On May 27th, Keith was sent home with a ventilator. While still in the hospital, we had been trained to manage the machine and were all reasonably comfortable with the work ahead. To be honest, managing his oxygen has been the easy part. As we've had to deal with disinterested 3rd party billers, burned-out state agency workers and just plain old bureaucratic triple-speak, managing my own oxygen has been a more delicate operation. However, no matter how disinterested the other party, or burned-out the workers, or how triple the speak you have no choice but to engage with the system. The system is not the clean, well-lighted place we would naturally seek for support and solace. However, it's all we've got for now. So, we take a deep breath and dive in.
Let me share one telephone encounter with you to establish a frustration benchmark. The Texas Department of Aging & Disability Services is the agency of record for dealing with state resource support for disabled citizens.
Surprisingly, the phone was answered on the first ring which gave me hope that things were going to go well. The woman on the line was pleasant, however when she heard that Keith was older than 21 and younger than 65, she became a bit less pleasant. Add to that he's on a ventilator and needs 24/7 personal care support, well, the bureaucratic gate clanged shut and I could hear her reaching for the metaphorical key. According to the State of Texas, anyone who is in need of 24/7 assistance has two choices: (1) relocate to a nursing home or (2) pay for everything out of pocket. Well, the first choice was not an option. Keith is extraordinarily gifted intellectually and his only limit is the inability to use his arms and legs. Being sentenced to a nursing home was completely unacceptable. As to the second option, well, we were already doing that without the permission of the State of Texas.
I calmly asked for clarification: "So, what your are telling me is that the State of Texas believes that the only solution for a person like Keith is to force him into a nursing home? There is no support available to help him continue a productive life?" She answered, "Yes, those are the rules of the State of Texas for people like your husband." At that point I thanked her for her 'help' and ended the conversation.
I went into the other room to give Keith the news. Naturally I was frustrated, angry and amazed that Texas actually endorsed taking a incredibly productive citizen and dumping them in storage rather than investing the dollars necessary to keep them an active and contributing part of the economy. Naturally, Keith wasn't surprised. He's lived with this his whole life. He could have ridden the system, but that was not what he was taught by his parents and grandparents. Obvoiusly he's physically disabled, but it's apparent to me and everyone who meets him that there are many more people who have their wheelchair on the inside. And, unfortunately, they are in the majority and have made rules that are in effect...for now.
Friday, August 15, 2008
The Story Begins...
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 story begins.
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 story begins.
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