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Archive for October, 2012

This is important to read. It concerns persons with developmental disabilities.

http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/

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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.

http://www.nytimes.com/2012/10/24/opinion/a-humane-medicare-rule-change.html?nl=todaysheadlines&emc=edit_th_20121024&_r=0

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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.

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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?

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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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