Michelle’s 40th

Tomorrow Michelle turns 40 years old. She was 21 when she was hit by a car and suffered a severe brain injury. Check this site for lots of pictures from her big celebration.

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The Political Parties and Disability

Both political parties need to nuance their discussions to better include persons with disabilities. The Republican Party needs to recognize that some people do need governmental support, who through no fault of their own can’t make it by themselves. The Democratic Party needs to recognize that it is not an either/or solution. Personal responsibility should be encouraged. We need to reflect on the principle of subsidiarity, which states that the lowest levels of competence should take precedence but when the needs are too overwhelming higher levels of society need to step in. For example, when going through our experience with Michelle we were usually presented with an either/or proposition. Either you’re on your own or you put her in a nursing home where Medicaid will pay. We brought her home and care for her every day. We did not walk away from our responsibilities but we do need help. Our family carries the bulk of the necessary care but several hours of Medicaid paid nursing assistance is also needed. What I want to hear is a more nuanced political discussion of how to better support persons with disabilities; not how to abandon them or turn them over to the state.

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If Not Medicaid, What?

Let’s put political labels aside for a moment. Help me think through my problem.

I too was a believer in the American dream: work hard, save your money, get a good education and you can accomplish anything. Then my daughter, who was an honor student at the University of Chicago, was hit by a car and suffered severe brain trauma. Then I saw the other side of the American dream: if you can’t produce you’re worthless. In both explicit and implicit ways we were informed throughout the many years since her accident to cut our losses and move on. In the beginning it was through the encouragement to sign DNR orders. Then it was consistent suggestions to put her into a nursing facility.

I think of all those brave men and women who served in our wars and came home seriously disabled. Are they receiving adequate care? We want our government to protect us but do we want our government to care for the casualties of war?

Indeed, according to market principles my daughter and other persons with disabilities can be a financial drain. They can also be a tremendous emotional drain for those caring for them. But they are not worthless. In fact, if the resources are there to care for them so that the caregivers are not overwhelmed, persons with disabilities have the unique ability to take us out of our consumer mentality and show us what life is really all about. They teach us what it means to love.

So, if you don’t want the government to help me care for my daughter show me who will. Or maybe you too think her life no longer has any value.

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Just One Example of Head Injury

http://www.bbc.co.uk/news/uk-england-cambridgeshire-19268791#?utm_source=twitterfeed&utm_medium=twitter

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Putting A Face On Medicaid

This is Michelle. In 1998, while a fourth year student at the University of Chicago, she was hit by a car and suffered severe brain trauma. She remained unconscious for almost eight months.

We are an upper middle class family and at the time of Michelle’s accident both my husband and I were working full-time. We paid our taxes, contributed to social security, and made sure that all our family members were covered by good health and car insurance. Yet, only three months after Michelle’s accident our insurance company told us that any further treatment of Michelle was futile and informed us that they would only pay if we would put her into a nursing facility.

Because Michelle was 21 at the time of the accident, she was soon able to qualify for Medicaid and later the Medicaid Waiver. Because of Medicaid she was able to continue to receive rehabilitation services and eventually emerged from the vegetative state. For the past twelve years she has lived at home with us.

We are not asking the government to take over our responsibilities as her parents, even though she was a legal adult at the time of her accident. We devote our lives to giving her the best care possible. Yet without Medicaid and the Medicaid Waiver we would probably have had to put her into a nursing facility.

What happened to Michelle could happen to anyone of us at any time. As the national debate about health care and Medicaid funding rages, we all need to reflect on what is more important. Should we fight for more discretionary spending so we can purchase more technological gadgets and other material things or should we fight to support people like Michelle?

If you think Michelle’s story is worth being part of the national debate please repost and twitter.

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Retraining the Brain

We have learned that the brain is plastic and with repetitive exercises can be trained. Check out this film.
http://www.bbc.co.uk/news/health-18340459#?utm_source=twitterfeed&utm_medium=twitter

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Back from Chicago

We’re back from Chicago and had a great trip. Turns out PBS is working on a program on religion and medicine, which was the theme of the conference that I attended. Michelle was filmed back at the university and at the scene of her accident. I did a three hour interview with the producers. Maybe you’ll see us on TV but it won’t be for awhile. We all came home exhausted.

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Off to Chicago

Michelle and I are packing our bags and getting ready to go to Chicago next week. I’m presenting a paper at the Inaugural Conference on Medicine and Religion sponsored by the University of Chicago. We hope to get back to the U of C campus for a memory visit. We’re not sure who is still in Chicago but we’ll be at the Westin Hotel on Michigan Ave. if you wish to contact us. Chicago here we come.

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