Archive for the ‘health care debate’ Category

I’m sitting in a hot spot for Optimum on Line with my iPad because we still don’t have an Internet connection. Thank God our family is safe but it’s doubly hard going through a disaster like this when caring for a person with a disability.Someone with a brain injury has a difficult time amusing oneself without planned activities.Maneuvering a wheelchair and transferring someone in the dark is an added challenge.Hope everyone is safe.

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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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Let me tell you a story. When my daughter was hit by a car while attending college in Chicago she was taken to Cook County Hospital, a county hospital and the nearest trauma 1 hospital. In the neuro ICU with my daughter was the daughter of the woman who ran the elevator at the hospital. Upon discharge, my daughter went to the Rehabilitation Institute of Chicago, one of the best in the country. The daughter of the elevator operator went to the county rehab facility. A year later I was back in Chicago and visited the hospital. I recognized the elevator operator and asked her how her daughter was doing. She told me that she had passed. She had choked on her mucus in the county rehab and died.

When we discuss access to health care we need to recognize that if someone is rushed to an acute care hospital they will get the same care whether they have insurance or do not. In fact, in the case of trauma, you want to go to a county hospital because they have the most experience in dealing with trauma. However, once you leave the acute care facility care depends on insurance. Too often we focus on our technological successes but people more often die of bed sores, infections, poor nursing care, improper medication, etc. Here’s where the real discrepancies in health care lie.

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Michelle is having orthopedic surgery on Monday, September 17th at the Hospital for Special Surgery. Keep her in your prayers.

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After watching the Republican National Convention last evening, I realized that one of the strong philosophical differences between the Republicans and the Democrats is that the Republicans believe if you try hard and keep government out of your way you can accomplish anything you want. The thinking is – we made it why can’t you? Successful people should be lauded for their hard work and their success. This used to be my thinking as well. After all, I too started from humble roots, was one of the first in my family to go to college, worked hard and succeeded.

So why has my thinking become more nuanced? First of all I grew older and became more aware of my own vulnerabilities but most importantly it was my daughter’s accident. I saw how quickly even a high achieving person can suddenly lose everything. Many people work just as hard as those who are successful and can’t make it and there are others who never had the tools needed for success. There are the many children who get sub-standard education, those living in conditions of poverty, the battered wife, the abused child,the sick, the dying, the disabled. What if Condoleeza Rice had not had the parents she had?

Yes, liberty is one of the principles on which this country is based but so is equality. We should all pull our weight but the presidential candidate who offers me a program that not only praises success but protects the vulnerable is the one who will get my vote.

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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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For those of you who didn’t see this article in yesterday’s NY Times.

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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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