Friday, January 24, 2014

MS Activist to speak out about clinical trials

MS Activist Jonathan Sari just let me know that he will be speaking about the importance of clinical trials at an upcoming panel. His participation reminds me of the many ways that people with MS can be activists even when they aren't speaking to elected officials. Spreading awareness and encouraging others to take action are vital steps in strengthening the MS movement and I applaud Jonathan for his efforts.

His panel, to be held the evening of January 30th at Seattle's Town Hall, also features MS researcher Dr. Mariko Kita of Virginia Mason. For more information and registration information, visit this page.

Participation in clinical trials is incredibly important to help move MS research forward. Clinical trials often need hundreds of patients willing to see if new treatments are safe and effective. To facilitate this effort, the Society maintains a database of clinical trials that are recruiting people with MS. To learn more about these trials, visit this Society's webpage.

Jonathan will be joining us in Olympia this year to speak to legislators at our annual Day of Activism on February 5. If you see him there, be sure to ask about his participation on the panel. And don't forget - it's not too late to register for the Day of Activism!

Tuesday, January 21, 2014

Washington Day of Activism - it's coming soon....

Just a reminder that our annual Day of Activism in Olympia is soon upon us. MS Activists will be coming from all over Washington to raise awareness of MS at the state legislature on February 5 and we hope you will join us. Registration is still open - you can learn more details and sign up here. If you are new to advocacy but still want to attend, don't worry. We have two teleconferences planned for you so you can get up to speed. Sign up for those calls: Jan. 22 and Jan. 29.

The Day of Activism is one of my most favorite days of the year. When I took this job, I did it because I knew the stories of people with MS have the power to change laws. The Day of Activism is the day when this really happens. The real stories of the MS community are told to people in power and we make a difference.

Three years ago, together, we passed a law that allows more MS specialists to practice in our state. Two years ago, we stopped people with MS from losing their health care. Last year, we made sure everyone with MS has access to affordable and comprehensive health care.  This year, we will continue that tradition and make it easier for people with MS to get to where they need to go.

Will you join us?

Thursday, January 9, 2014

Should the state have new rules for disability parking placards?

A new report to the Washington legislature recommends that the state allow fewer people with disabilities to qualify for free or unlimited street parking. This proposal, meant to crack down on fraud and abuse of disabled parking placards, may prevent many people with MS from gaining access to free or unlimited on-street parking.

The report does not propose revising eligibility for the blue disability parking placards, but instead suggests creating a new orange placard that allows for free parking and parking beyond the posted time limit. Currently, state law says that anyone with a disability placard can park in a metered space for an unlimited amount of time. This provision would be eliminated and under the new proposal, blue placards could not be used for free, unlimited on-street parking.

Nearly 700,000 permanent disability parking placards are in use throughout the state and it is thought that many of these placards are being used fraudently. The abuse seems to be most rampant in Seattle where many blocks are filled with a disproportionate number of disabled parkers during the work day. The City of Seattle has tried for many years to fix this problem and asked the legislature for a solution.

The new orange placards would have a much stricter definition of disability, and allow someone to qualify if they meet any of the four criteria:

  • Cannot insert coins in parking meters or obtain tickets from ticket machines in parking lots or ramps due to a lack of fine motor control of both hands.
  • Cannot reach up to 42 inches from the ground, due to lack of finger, hand, or upper extremity strength or mobility.
  • Cannot approach a parking meter due to use of a wheelchair or other device.
  • Cannot walk more than 20 feet due to an orthopedic, neurological, cardiovascular, or lung condition which is so severe that the ability to walk is almost completely impeded.
These criteria seems to eliminate people with MS who experience fatigue and gait, except in the most extreme circumstances.

The report also suggests additional changes to crack down on fraud, including increasing penalties for fraudulent use of a disabled parking placard. The whole report is available here. The Chapter's Washington Government Relations Committee is reviewing the report and will ensure that the legislature understands the perspective of the MS community when they are reviewing the proposal.

What do you think about this proposal? Should it be harder for people to get a disabled parking permit? What else can be done to crack down on the abuse of disability parking placards?