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.

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