Marilyn Martone's Blog, page 9
October 24, 2012
How Do We Think of Persons with Cognitive Disabilities?
This is important to read. It concerns persons with developmental disabilities.
http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/
Important News on Rehabilitation
Throughout Michelle’s journey in rehabilitation facilities she was constantly denied therapy because it had been deemed that she had “plateaued” meaning she was not making sufficient progress. As a result it was decided that more therapy was futile and therapy was discontinued. Finally, there is recognition that therapy is important for maintenance. Let’s hope private insurance companies follow the lead of Medicare.
October 22, 2012
Word of Advice on Ventriculoperitoneal Shunts
After Michelle’s brain surgeries in 1998 she had a ventriculoperitoneal shunt put in her head for hydrocephalus. She now needs an MRI and I have spent three days trying to track down if her shunt is MRI compatible. If you or a loved one are getting a shunt be sure to get the name of the manufacturer of the shunt and learn if it is MRI compatible. Even though Michelle had an MRI in 1999, I understand the MRI machines are now much more powerful so it is important to know as much as possible about the actual shunt.
October 17, 2012
Disability Conference
Had a great conference on disability at St. John’s University yesterday. The keynote speaker was Mark Shriver. Be sure to read his new book, “A Good Man: Rediscovering My Father, Sargent Shriver.” One of my favorite quotes in the book is when Sargent Shriver, who was in the clutches of Alzheimer’s disease, says to his son, “I’m doing the best I can with the gifts I’ve been given.” Isn’t that what we’re all called to do?
October 14, 2012
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.
September 25, 2012
Access to Health Care
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, on 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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September 18, 2012
Surgery’s Over
Michelle’s surgery went very well. She’s in a splint and will be in a cast for three more weeks. Thanks for all your support and prayers and thanks to the wonderful staff at the Hospital for Special Surgery.
September 16, 2012
Michelle’s Having Surgery
Michelle is having orthopedic surgery on Monday, September 17th at the Hospital for Special Surgery. Keep her in your prayers.
August 30, 2012
The Presidential Election and Disability
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.
August 27, 2012
Latest from Military on TBI
You might want to check out this link on a recent publication by the military on TBI
http://www.dcoe.health.mil/NewsArticle.aspx?id=3575
