Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, November 17, 2010

Is It Not Time To "Go" To Washington In New Ways?

May will be here before we know it. Anyone who has participated in ALS Advocacy Day will tell you that those face-to-face encounters with legislative staff members make an impression. Anyone with ALS who has participated has gone through incredible hoops to get there, to navigate through the city, to use the rest rooms, to search for accessible entrances, and to make it through an exhausting day. Caregivers run themselves ragged. All spend a small fortune on transportation and hotels. Sometimes that investment of precious energy and money culminates in a five-minute meeting in a hallway with a staff member.

Envision this in 2011. One patient and one legislator in every state are selected to pilot something efficient and economical (two magic adjectives in the new Congress). A webcam is set up in the patient's home. The patient is ready to use whatever communication means works best for his or her situation. The patient has the talking points for the 2011 ALSA advocacy requests. The legislator has a staffer set up a webcam in the Senator or Congressperson's office. At the appointment time, the patient and caregiver can communicate with the legislator in an extremely efficient and cost-effective manner. The talking points are made. The approach is novel and will be remembered by the legislator and staff. The concept might even be nationally newsworthy!
This could complement the in-person participants beautifully. This could get the messages into offices that might otherwise have been hard to reach. This is not rocket science, but it sure would look that way in the halls of Congress.

It's time for some people to go to Washington in new and different ways. The first organization to pull this off will make the splash. Anybody ready for a big splash?

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