Thursday, May 31, 2012

From the MS Foundation: MS Activists say it in their own words

The Multiple Sclerosis Foundation sends out a periodic Movers and Shakers Advocacy Newsletter - similar to the National MS Society's Action Alerts. Movers and Shakers features great information about activists within the MS community and the latest edition happened to feature one of our own - Dorthann Cloud from Bellingham. Here's what it says :



MS ADVOCACY 101  ​- Become a Squeaky Wheel


Our MS Advocate Spotlight this month is Dorthann Cloud. She has shared how to not only go to your state capitol on the day common people can present their arguments for a Bill they support, but how to also advocate to your Representatives almost every day. To find a current Bill or Legislation to support you can do research at http://thomas.loc.gov/home/thomas.php

There are also toll-free numbers in each state that you can call and ask for your Representative to support a Bill that affects you or those you care about. The best way to discover how to contact your Representatives is through a government run website: http://www.contactingthecongress.org/. When you click on your state (or fill out their form) you will be directed to names, numbers and links for contact forms. The contact form allows you up to 10,000 words in most cases. Be ready and precise; have a Bill name and number (if applicable), and any references, examples, that you feel tell your point of view.

If you attend a day-to-the-capitol event and are to have, “face time,” Dorthann has created a quick guide to make the most of your limited audience (ten minutes per interview):

►​What are your “key messages,” the three or four things it’s most important for these people to know from you
​●    Legislators are under enormous pressure to craft a budget that meets all needs when revenue is so low, so they need encouragement – why your needs count; examples, figures for example.
●    Remind them MS – and other chronic health issues – affect their constituents who vote.
●    Supporting healthcare has never been more important as the continuing recession has swept so many into unemployment and stripped their insurance.
●    Thank your audience for being involved and committed to your cause and remind them how much you need their support for success.
 ►Ten minutes goes by quickly, and you need to have time to: 1) set up what you’re going to say (who you are there on behalf of – perhaps MSers of America); 2) share the summaries and arguments you’ve pre-planned, and then 3) wrap up with a reminder of the “take home messages.” 

ADVOCACY WORKS! - Born Advocate Now Uses Her Superpowers for MS 

Dorthann Cloud was employed at Western Washington University for 11 years. During that time she was always very involved in her union’s activities; and in Lobbying for her rights within that union. Today, retired with MS, she uses what she learned to advocate for MS. Dorthann explains, “One thing the Washington Federation of State Employees Union did was sponsor lobbying training. I benefited greatly from this training.”

Yes, she did. Later, using that knowledge of how to convey what she wants to say quickly and concisely, Dorthann made herself heard during a Lobby Day trip for MS in her state.

She tells the story: “Monday, January 30th, I was in Olympia for MS Lobby Day –  a busy day for us, and for our legislators. My fellow MS lobby crew and I were at the Capitol at 8:00 a.m. for training. Our job is to make a very visible impression.”

Dr. Eugene May, chair of the Government Relations Committee for NMSS, spoke to the group about etiquette and how to organize their priority issues: stop healthcare cuts, create consumer friendly health insurance exchanges, and lower out-of-pocket costs for people with significant healthcare needs. Dorthann says specifically they were there to, “ask our representatives to support HB 2435 / SB 6241 which places a cap on all out-of-pocket medical expenses.”

Thanks to her past trips to the Capitol as a WWU union employee, she had a relationship with Senator Kevin Ranker (D-40th).  Not only did he recognize her, but asked where she’d been. Dorthann explained how MS had changed her life – and so many others she’s met – and urged him to support her and her group. He listened and read a letter with figures facing people with insurance caps and chronic illness. So she was elated when he looked up, and assured her he would support the Bill. That was just the beginning of her long, but fruitful day.

Dorthann knows, from her own experience, that each of us can do what she’s done, even without a long professional relationship with our Senator, or traveling anywhere.

She wanted to share, “The idea is to be a visible squeaky wheel. Quantity matters too; it reminds legislators of how many us (constituents and voters) there are.  There are toll-free numbers you can call Monday through Friday, 8:00 a.m. to 8:00 p.m., to let our reps know how we stand on legislation. Or just to make a statement like: ‘Please don't eliminate basic health coverage. It affects your most vulnerable constituents’ – use the word constituents, it is effective! 

“There are thousands of bills introduced each legislative session, but only a few hundred make it through each time. This is why we have to keep being a visible reminder, be it via phone calls, emails, letters, or personal visits to the Capitol. There is a lot of competition for legislators’ time and interest – we must be ever-present. I am truly grateful I can do something to help us all out."

Thursday, May 24, 2012

Legislative Update - Dodged the bullet this time...and had some wins!

As you know, the Legislature finished up a few weeks ago, and the results were a bit surprising given the place we started in December.  Amazingly, after some creative accounting, almost all of our priority programs were saved! This is partly due to the improved economy, decreased caseloads, and accounting maneuvers (whatever that means).  

We also saw great success with the passage of the Health Exchange bill (HB 2319)!  This is one more step in the implementation of the Affordable Care Act.  A very exciting development is the inclusion of a trigger that will allow the Insurance Commissioner’s office to address the specialty tier issue if it causes adverse selection in the exchanges. Listing critical drugs in the “specialty” tier frequently puts these necessary medications out of reach of many people living with MS. If you have a story about your experience with “specialty” tiers, please contact the chapter to share your story so that we can show our representatives that their constituents are suffering due to this unfair practice.

The Greater NW Chapter has been included in a task force contributing to establishing the minimum standards for the state Health Exchange network. This is a significant place at the table for the MS Community, as we are communicating the needs of the chronic disease community and establishing a consumer centric Health Exchange that will serve the needs of the consumers who truly need this service.

Over the last several months, we have joined forces with coalitions, such as Healthy Washington and the Long Term Care group/Aging Caucus, to help get our message across to our legislature. The passage of the Health Exchange bill proves we are definitely more effective when we join forces with other groups.  

We are thankful that our programs were “saved”, but after all of the cuts over the last several sessions, there isn’t much left to save. Now we need to focus on improving our safety net programs so that the needs of our community are served. Keep up the pressure on your state Legislators (http://apps.leg.wa.gov/DistrictFinder/Default.aspx ) to protect and improve Basic Health, Disability Lifeline, and Medicaid so that that people living with MS will have access to the services so desperately needed.

 It’s Time for Action! Washington

Cheers! – Holly Hawker
Chair, Activism Committee
Greater NW Chapter, National MS Society