For the next five days that is. . .
My experiences in the youth programming field can relate to this post. A number of the youth I work with prefer to play inside near the outlets. One boy told me that the reason we don’t play video game outside is because “there are no outlets.”
Fortunately we have found this trend can be reversed through positive engagement. Phones, tablets, and computers are not and should not be used as pacifiers. Parents and other adults need to set better examples – I sure need to work on this!
Steve Gleason has done a lot to bring attention to Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s Disease). Please read this letter that he wrote to his congressional delegation. Living with such a debilitating condition is not easy. Government and insurance companies have the ability to make it just a little bit easier. Unfortunately they usually do the exact opposite.
An Open Letter to Louisiana Senators and Congressmen:
Dear Senators Landrieu, Vitter and all Louisiana Members of Congress,
Recently, legislation was introduced to ensure patient access to quality, complex rehabilitation technology. An example of that technology is my power chair. I cannot imagine living with ALS (or any other physically restrictive disease) without a power chair. It is not only a necessity, it is a means of independence for me and my caregivers. The bi-partisan legislation introduced is S. 948 and HR 942. While every organization that supports the care of people with physical limitations supports this, not one legislator from Louisiana has signed it as of today.
Adding to this, the Centers for Medicare & Medicaid Services (CMMS) have new rules which become effective April 1st. Exactly the opposite of the legislation above, these superfluous rules will inhibit people from having consistent access to essential communication devices. The term essential is not hyperbole. I use my eyes to type on one of these devices. Essential communication; from requests for food or water, to telling my family I love them, advocating at the United Nations, or open letters to policy makers.
While I am very fortunate to have the ability to own and customize my equipment, most people who are dealing with ALS, and conditions like ALS, do not. Living with a physically debilitating disease is not only a tremendous emotional burden, but a financial one as well. By taking away access to these devices, the CMMS is harming the very people the institution was created to help.
Imagine if your cell phone, tablet and laptop were taken away when you had a hospital visit. While it is logical to rent “simple” machines like a car or a pressure washer for periods at a time, renting complex and customizable technology like a cell phone, tablet or laptop is far less viable, especially when that technology is your only means of connecting to the world.
I was recently in a Microsoft commercial. The commercial shows how transformative technology has been to individuals and the world. Microsoft calls these technologies “empowering”. These new rules from the CMMS will quash the power that technology gives people like me… people who intend to be productive and purposeful.
Please sign S 948 and HR 942. And, please introduce immediately an exclusion for Speech Generating Devices (SGDs). Thank you for your attention to this important issue and for your voice in Washington, DC. Through your support, you will also safeguard the voices of thousands of others.
A number of upcoming projects have led me to revisit some of my past experience. I think this is called “dusting off the cobwebs.” Some of the dusting has been invigorating. Some has reminded me why I didn’t further explore those options.
Every so often I will post a link, article, story, or something relating to these experiences. The first Item I came across was an enjoyable documentary called Saul Alinsky Went to War. It is a look at the Alinsky model of community organizing put into practice. A paper on organizing models [pdf] describes the Alinsky model:
The community organizing model developed by Saul Alinsky owes its inspirations to the Communist theories of mass mobilization. Alinsky, on the lines of Marxist philosophy views the current capitalist economic and social systems problematic and the cause for all social issues such as crime, unemployment, inequality, discrimination, declined morality and environmental degradation. Alinsky emphasizes working within the system to change the system. Just like Carl Marx, Saul Alinsky has little discussion of how a society should be structured and its function after the successful revolution overthrows an 0ppressive dominant system.
Pop some popcorn, pull up a comfy chair, and click away!
Tomorrow marks the two month passing of my Dad, Kenneth Lempa. Last year we were fortunate enough to have him walk with Team Lempa: Walk to Defeat ALS as we rocked it out at last year’s Walk to Defeat ALS. This year we will be walking in his honor.
Can you help us as we raise money to defeat this awful disease? Every penny helps. My mom , uncle and I would also love to have you join our team! Please email me (8lempa8 (at) gmail dot com) if you’d like to walk with us.
You can support us by clicking here: http://webchicago.alsa.org/goto/ChrisLempa2014
I don’t like New Year’s Resolutions. For that reason I was very excited when I read about goal setting in Matt Frazier’s new book No Meat Athlete: Run On Plants and Discover Your Fittest, Fastest, Happiest Self. With that inspiration in mind, I will be spending a portion of today setting goals using the following 5 points as an outline:
- Get some dreams on paper.
- Set a timeline for each goal.
- Circle your top three one-year goals.
- Get specific about your three one-year goals.
- Make plans and take action.
Once I complete my goals, I will post them here as a way to hold myself accountable.
I made this soup for dinner. It was delicious.
I took this picture while I was walking my dog through the Brook Creek Neighborhood. It was a reminder of why I like Lawrence.
The ALS Association is one of the most committed organizations I have worked with. This is one of the reasons that I am proud to be a participant in the Walk to Defeat ALS. One of the questions that people have when they donate money is “where does it go?”
That’s a mighty fine question!
Here’s a rundown of what we are raising money for:
Local Care Services: for people and families touched by ALS. These services include equipment loan closets, multi-disciplinary clinics, support groups, home visits, and educational materials.
Research: programs across the world committed to finding effective treatments and a cure for Lou Gehrig’s Disease. Our diverse research studies have advanced new discoveries and treatments, and have shed light on the complex genetic and environmental factors involved in ALS.
Public Policy: efforts that change current legislation to provide greater federal support to those with ALS. Current successes include increased veterans benefits, 24-month Medicare waiver, the creation of the National ALS Registry, and research funding by the Department of Defense.
A future post will out line how a donations of $1.00 will directly benefit a person living with ALS.