25 Years of Impact: Raising Our Voices on Capitol Hill

Our Greater Northwest delegation

Six volunteers from the Greater Northwest Chapter were among the more than 350 MS activists who attended the Society’s 25th Annual Public Policy Conference in Washington, DC this month.

Together, we had the opportunity to celebrate our advocacy accomplishments over the last two-plus decades, including increased access to healthcare, hundreds of millions of dollars invested in MS research, and guaranteed civil rights for people with disabilities. We also learned about current priorities in preparation for meetings with members of Congress—our chance to share our personal stories and to urge support for policies that will address the needs of people affected by multiple sclerosis.

MS activist, Gayle Rundstrom, shares her reflections:
 

Bill & Anne from Montana ready to visit with their legislators

It was a long flight from Washington State to Washington, DC, which was made even tougher by the daylight savings time change! The conference kicked off on Monday morning with a session for District Activist Leaders—volunteers who are leading the way in their community by building relationships with elected officials in their legislative districts. We discussed our key responsibilities, current policy priorities, and developed our personal stories to tell our legislators.

In the afternoon, you couldn’t help but be excited by walking into the ballroom and seeing 350 people all supporting MS issues! There was energy everywhere! We heard a presentation on the political climate by Charlie Cook, who has served as a political analyst for major news networks. There was also recognition of 2015 elected officials of the year and Volunteer Hall of Fame inductees, including our own Doug Toelle from Alaska! The evening wrapped up with a reception and opportunities to network with MS activists from around the country.

En route to a legislative meeting

Gayle & Jessica arrive at Capitol Hill

On Tuesday, we focused on learning about our priority issues. We started out with a panel discussion about the Advancing Research for Neurological Diseases Act. This legislation, which will help us better understand the size and demographics of the MS population, has already passed the House as part of the 21st Century Cures Act, but still needs to pass the Senate. A second panel discussion was on NIH and CDMRP research funding. This is a big deal because NIH funding, in particular, has not increased in the past 10 years, not even keeping up with inflation. We need both NIH and CDMRP funding to support important medical research for MS and other diseases. Other conference sessions featured top researchers and experts from around the country, and included discussions of the complexities surrounding access to affordable MS medications.

After all of this preparation, we geared up to meet with our legislators. On Wednesday, we traveled together to Capitol Hill and asked our members of Congress to support our issues. It was so wonderful to see people with orange scarves, ties, and socks, walking the halls of Congress and on the streets outside. Our smiles and hand waves were invigorating! There was a lot of energy and enthusiasm, and it was powerful day advocating for people with MS.
 

Meeting with Senator Cantwell (center) from Washington State

Congratulations to our activists for a great trip and for their successful meetings with members of Congress from Alaska, Montana, and Washington State. Our MS activists at home made a difference, too, by sending thousands of Action Alert messages to their elected officials in support of the issues Gayle mentioned above. Together, we are helping shape federal policies and programs to better meet the needs of people living with MS.

Make sure you’re getting the latest updates and information on opportunities to take action by signing up for our MS Activist Network.

Taking Action in Olympia: WA State Action Day Recap

Yet again, MS Activists in Washington State have demonstrated that together we are stronger than MS! More than 65 activists attended our annual State Action Day at the state capitol in Olympia, and conducted nearly 100 visits to their legislators.

This year's group of MS Activists!

We brought the stories of people living with MS to our state's elected officials, ensuring they understand the needs of people with MS. Our requests focused on two pieces of legislation, HB 2326 and HB 2445, both of which will improve access to information about our health care insurance and how decisions are made about benefits and care.

Thanks to all of our activists for joining us!

MS Activist Jonathan Sari shares this recap of our annual Washington State Action Day:

MS Activists ready to take action!

On a brisk February morning, committed MS Activists from around Washington State met in Olympia to further the cause of Washingtonians living with MS.

Our legislative agenda for the session was to improve transparency in our state's health insurance system. As happened each of my prior years, we heard from expert speakers

who laid out the problems that our proposed legislation was intended to remedy, along with the outcomes we expected to result from those remedies. We also were honored to hear a vision for the future outlined by our Governor Inslee.  

Governor Jay Inslee speaks to the group.

After the presentations, it was time to speak with our legislators. For Legislative District 46, those legislators are Senator David Frockt, Representative Gerry Pollet, and Representative Jessyn Farrell. We did not manage to secure meetings with Representative Pollet or Senator Frockt, but Representative Farrell graciously made time to meet with us.

It was my third year attending our State Action Day. This year, my two compatriots (who had made the hour-long drive from our North Seattle district to the state capitol each of my prior two years) couldn't attend -- so I conducted the visits on my own.

Jonathan Sari (right) at a legislative meeting last year

I arrived at Representative Farrell's office fifteen minutes early. These legislators are busy! While I waited I watched her wrap up a meeting with the fire fighters union and receive a message from the Speaker of the House -- a request that ended up limiting our meeting time. 

Representative Farrell remembered me from our earlier meetings and given our limited time, I kept our request to the basics: I asked for her support for our bills and explained that we hoped to streamline reporting and improve accountability for health insurance. She asked some good questions and although I didn't remember all of the specific answers, I promised to get answers that day. I also shared my personal experience of my own medication denial by my insurance company. I thanked her for her time, letting her know that I was following her email newsletter, and let her get to her meeting.

MS Activists meet with legislative staff.

I also dropped off the information packets with Representative Pollet's and Senator Frockt's offices. Before returning home, I reported in to Linnea, the Chapter's advocacy manager, to request the information to follow up so I could follow up that evening with Rep. Farrell.

I am glad to be a part of the Society's efforts to make government work better for those of us living with MS.

-Jonathan Sari

Visit our Facebook page for more photos of our State Action Day event.

Questions? Want to get involved? Let us know.

Bringing Better Accessible Transportation to Washingtonians

Photo credit: Steve Morgan

Thanks to the work of MS activists, people across Washington can now look forward to accessible transportation improvements in their communities. Over the last several years, we have asked our legislators to increase funds for “special needs transportation” – to help ensure that Washington’s transportation system works for people who aren’t able to drive because of a disability like MS. These funds support projects that help local communities offer efficient, coordinated transportation services, such as paratransit or non-profit transportation programs.

Thanks to MS activists like you, this year legislators allocated $200 million dollars for special needs transportation! This funding is part of a long-awaited 16-year transportation package, which includes support for many other projects and infrastructure as well.

While many people have cars to get around, people living with MS often do not have the option to drive as the disease progresses. Yet people with MS and other disabilities need and deserve the opportunity to access jobs, shopping, church, and community activities, and to live as full a life as possible. The special needs transportation fund breaks down barriers to transportation for people who are unable to drive because of a disability or age.

Congratulations to our activists across the state – your voices were heard and legislators made transportation for people affected by MS and other disabilities a priority in our state. We hope to provide updates in the future about how these funds are helping communities across the state.

Take action now! Please join us in saying “thank you” to our legislators for supporting accessible transportation in our state. [Update: please note this action alert is no longer active.]

As a reminder, if you’re not yet on our Activist Network, sign up today to receive important updates and alerts about how you can take action. Your voice matters – thanks for being involved!

Taking Action at Walk MS

This spring, at several Walk MS locations in Washington, participants took a moment to sign letters to their members of Congress asking for support for two important issues impacting the MS community:

• The Ensuring Access to Quality Complex Rehabilitation Technology Act (H.R. 1516) streamlines access to individually configured products like manual and power wheelchairs and seating and positioning systems. These medically necessary products are vital to helping people with more severe disabilities including progressed MS—remain independent, active members of their community.

• The Advancing Research for Neurological Diseases Act (H.R. 292) fills a research hole by creating a data collection system that will help identify risk factors for developing neurological diseases, which could one day lead to a cure.

Collectively, 62 walk participants composed letters—which we then scanned and emailed to their members of Congress. These letters were delivered to six Congressional offices on behalf of the MS community. Thank you for making your voices heard!

Update: In July 2015, thanks in part to the work of MS activists, H.R. 292 passed the House as part of the larger 21st Century Cures Act (H.R. 6). The next step is for the Senate to act, which is not expected until this fall. The Society will continue to advocate for this legislation then.

If you’re ready to support issues that affect the MS community, take action now! Ask your member of Congress to protect access to complex rehabilitation technology and pledge your support to the ADA.

Congressman Kilmer Participates in Walk MS: Bainbridge Island

Rep. Derek Kilmer (center) and Walk MS participants

We were very pleased to have Congressman Derek Kilmer participate in Walk MS: Bainbridge Island this year. 

Congressman Kilmer has demonstrated his ongoing commitment to issues that affect the MS community by supporting robust research funding for the National Institutes of Health, as well as respite programs to support family caregivers. He and his staff regularly meet with MS activists to discuss the needs of the MS community—from research funding to access to treatment. (Here is a blog post from 2013 with a great update from Rep. Kilmer on his visit with some MS activists on Bainbridge Island.) 

Thank you, Congressman Kilmer, for being a part of the movement to end MS!

Greater Northwest Activists Take On DC!

Two weeks ago, along with 350 other activists, staff, and volunteers from National MS Society chapters across the country, our Greater Northwest Chapter delegation traveled to Washington, DC to participate in the Society’s annual Public Policy Conference.

Our activists ready to meet with their members of Congress

We bring a small delegation of volunteers each year, and in our selection process we prioritize engaging both new and current activists and ensuring that key congressional districts are represented. 

This year, our six volunteers advocated for three issues:

1. Funding for MS research through the National Institutes of Health and the MS Congressionally Directed Medical Research Program;
2. The “Ensuring Access to Quality Complex Rehabilitation Technology Act,” to make it easier for people with MS to access the mobility devices they need; and 
3. The “Advancing Research for Neurological Diseases Act / 21st Century Cures Initiative,” to collect data on neurological conditions like MS to help us better understand the disease and obtain more accurate incidence and prevalence rates.

A Society delegation presents Senator Patty Murray (center) with her award.

One of the highlights of the trip included honoring Washington Senator Patty Murray with Senator of the Year, the Society’s highest honor for elected officials. The Chapter's Washington Government Relations Committee Chair, Nora Gibson, presented the award, and recognized Senator Murray’s work as a powerful advocate for families affected by MS. We are certainly proud to have the Senator’s work and the work of our chapter recognized at the national conference!

MS Activists Nora Gibson and Steve Ehlert

On Wednesday, March 11th, our activists conducted 16 visits with their members of Congress. Our Washington State activists had in-person meetings with both of their Senators, and activists Gayle Rundstrom, Steve and Vicki Ehlert, and Nora Gibson shared powerful stories with our Representatives. Thanks to the work of activist Doug Toelle, we received a commitment from Alaska Representative Don Young’s office to be a co-sponsor for the neurological disease data bill (H.R. 292). In addition, Montana activist Lora Waid forged new connections with staff members in the office of Representative Ryan Zinke, a freshman legislator from Montana. 

Rep. Zinke's staff with activists Lora & Doug

Lawmakers see us as a credible source of information for what matters to the MS community. Of the 18 members of Congress that represent our Chapter area, six are members of the Congressional MS Caucus—demonstrating their commitment to taking action on issues related to our work.  Together, our legislative champions, terrific volunteers, and online network of MS activists are playing a critical role in bettering the lives of people affected by MS.

Congratulations to our activists for a successful trip and for bringing awareness of key issues affecting people living with MS to our members of Congress. Thank you for your commitment to our work and for serving as dedicated leaders in the MS movement. You help us support the Society’s goals to shape federal policies and programs to better meet the needs of people living with MS. 

Washington MS Activists with Senator Maria Cantwell

Are you ready to take action? Sign up for our MS Action Alert Network here.

Success in Olympia: State Action Day Recap

Another successful State Action Day has come and gone, and what a day it was! MS Activists came from all corners of the state -- as far as Spokane, Granite Falls, and Vancouver -- to be a part of the event. 

Here’s a recap of what MS Activists were up to on January 27, 2015: 

• More than 40 MS activists came together in Olympia to show their support for people living with MS and conducted over 75 in-person visits with lawmakers
• At home, activists spread the word via social media and sent more than 80 messages to their legislators 

Together, we successfully raised awareness and made a powerful ask for increased funding for special needs transportation -- services that help people with disabilities get where they need to go. Access to transportation is a major issue for people living with MS. Mobility impairments and fatigue are some of the most common symptoms of MS, and as the disease progresses, many individuals are no longer able to drive.

People with MS and other mobility challenges need and deserve the opportunity to access jobs, shopping, church, and community activities, so they can live as full a life as possible. Washington’s lawmakers have the ability to improve the lives of people with MS by increasing funds for special needs transportation. 

Rep. Linda Kochmar (left) with MS Activist Cermit Rickey (center).

The special needs transportation fund breaks down barriers to transportation for people who are unable to drive because of a disability or age. It funds projects that help local communities offer efficient, coordinated transportation services, such as paratransit or non-profit transportation programs. While paratransit programs are required under federal law, local transit agencies often have a difficult time funding them. 

We can do better—and that’s where we need your help! MS activists are working together to ensure that our state provides adequate funding for accessible transportation. We asked lawmakers to support an additional $160 million in special needs transportation funding in the next transportation package. This ask resonated with many legislators who continue to express their support for this request.

Commissioner Mike Kreidler speaks to the group.

Finally, we were honored to host special guests Insurance Commissioner Mike Kreidler and Senator Joe Fain. Commissioner Kreidler spoke to the group about critical insurance issues affecting the MS community, including increasing transparency in prescription drug formularies and improving provider networks. Senator Fain energized the room with his overview of key transportation issues and the value of constituent voices in moving issues forward.

Thank you to all of our activists for raising awareness and speaking up on behalf of the MS community. If you weren't able to attend, you can still make a difference! Email your legislators today and ask them to fund accessible transportation. 

Questions? Want to get involved? Let us know.

Join MS Activists in Olympia next week!

State Action Day is just around the corner. This annual event brings together MS Activists from all over Washington to raise awareness of issues affecting the MS community among our state legislators. If you are new to advocacy, but still want to attend -- don't worry! We will provide ample information before and during the event to get you up to speed. 

Our elected officials want to hear what matters to their constituents. Together, we will bring them the stories of people living with MS and we help change laws. Still not convinced? Here's some of the reasons you should attend State Action Day:

1. To build a relationship with your legislator. If you already have one, consider it a visit to a friend. Your legislator represents YOU and wants to hear about issues relevant to your life.
2. To stand in solidarity as an MS community, to speak out on behalf of all the 12,000 people living with MS and the 72,000 people in our state affected by MS 
3. To make a statement. As our state legislators make decisions, we want them to keep the needs of people of MS in mind. We will help them understand what issues matter to our community. 
4. To make a difference. Together, four years ago, we passed a law that allows more MS specialists to practice in our state. Three years ago, we stopped people with MS from losing their health care. Two years ago, we made sure everyone with MS has access to affordable and comprehensive health care. Last year and this year, we are continuing our work to support accessible transportation options to help people with MS get where they need to go. Help us make change.
5. To build awareness. Our presence at the Capitol (in our orange scarves) brings attention to our cause! It also educates you on current issues that you can share with others who care about the MS community.

I hope you can join me and other MS activists in Olympia on Tuesday, January 27th to share important issues affecting the MS community with our legislators. 

Registration is still open! 
Sign up at www.nationalmssociety.org/WAactionday 
or by calling 1-800-344-4867, option 1.

MS Activists Walk the Walk (and Talk the Talk!) in Seattle

MS activists take action in many ways, whether it's meeting with their legislator, telling their story, determining policy priorities on our Government Relations Committee, or taking advantage of virtual advocacy opportunities through blogging, Twitter, or our MS Action Network.

At Walk MS: Seattle, our volunteers (including MS activists Holly Hawker and Karl Schiller) reached out to future activists by spreading the word about the Greater Northwest Chapter's advocacy work at our MS Activism booth.

Hundreds of participants interacted with our booth at the Gas Works Park rest stop by participating in our “bean poll” (voting on which policy issue matters most by placing a bean in one of three jars), taking a photo in our MS Activism photo booth, or signing up for our MS Activist network email list.

Our Activism Booth by the Numbers:

• 4: Number of wonderful volunteers at our booth!
• 400: Walk participants who participated in MS activism booth activities
• 113: Photos taken in our MS activism photo booth.
• 3: Photos that Blitz, the Seattle Seahawks mascot, took in our booth.
• 222: People who ranked "increasing funding for MS research" as the most important thing politicians could be doing to help people living with MS. (That's 54% of the votes.) 
• 22: New activists signed up for our MS Action Network. Welcome!

For more photos from the booth, visit our Facebook page.

These were just a few simple ways to engage participants and raise awareness about our chapter’s advocacy work. How are you spreading the word about MS? To volunteer or get more involved, contact us!

See you at next year's Walk!

By Linnea Nasman
MS Advocacy Volunteer

MS Activists meet with Rep. Jessyn Farrell

Yesterday, MS Activists Jonathan Sari and Esti Mintz met with their state Representative Jessyn Farrell to continue the discussion we had during the legislative session on special needs transportation. The National MS Society is very interested in increasing funding for accessible transportation, and we have been talking with legislators about how to make this happen. As the vice-chair of the House Transportation Committee, Rep. Farrell has a particularly powerful role to play in budget negotiations. 

From left to right - Esti Mintz, Nigel Herbig, Rep. Jessyn Farrell, Jonathan Sari, Jim Freeburg

Jonathan and Esti met with Rep. Farrell as part of our Day of Activism in February - soon after they met with her, she moved into a leadership position within the Transportation Committee. Rep. Farrell was particularly interested in helping out and committed to doing whatever she can to ensure our concerns are addressed. It was great to hear her strong support for the issue - we'll definitely be working with her to make it a reality.

If you are interested in meeting with your legislators to discuss accessible transportation (or any other issue affecting the MS community), let us know and we'll help make it happen.

Medical research funding protected by Governor Inslee

Medical research advocates should be pleased with Governor Inslee's recent actions that preserved funding for the Life Sciences Discovery Fund (LSDF). On Friday, the Governor vetoed legislation that would have gutted funding for the LSDF.

The LSDF was created by Governor Gregoire in 2005 from tobacco settlement monies to invest in promising medical research in Washington state. One of the largest LSDF grants went to the Benaroya Research Institute to create an autoimmune research program to look for new treatments for conditions like MS. Since then, the Legislature has significantly reduced funding for the LSDF due to economic troubles, and proposed eliminating funding completely this year.

The Society, along with several other patient advocacy organizations, urged the Governor to veto the funding cut. Increasing funding for medical research has long been a priority for the Society, and we are pleased that medical research will continue in Washington state.

Session finishes up without a transportation package, but with a disability parking bill!

As you probably know, the legislature finished up its business late last week without passing a new transportation plan. Despite pleas from all sorts of transportation advocates (including MS Activists!), legislators could not reach an agreement about how to fix Washington's transportation problems. It's hard to know where to place the blame, but the long and short is that we won't stop talking about the need for additional funding for special needs transportation any time soon.

While talking to legislators about the need to increase funding for accessible transportation, it's become pretty apparent that this is a big issue for people with MS. The stories from people with MS show the significant need for additional transportation options for people with MS and others who can't drive. While many legislators have been sympathetic, our request has been caught up in debates around contracting, union wages, and environmental protections. We'll continue to push for more funding for special needs transportation, so if you haven't already, it's not too late to take action!

On a brighter note, our efforts to protect disabled parking for people with MS paid off. The Legislature passed House Bill 2463 last week with unanimous votes in the House and Senate. MS activists should be proud to know that our work at the Day of Activism in February paid off. Relationships that activists have built over time with their elected officials have been the key to our advocacy efforts and we are grateful that the MS community makes it a priority to get involved in government. Your work improves the lives of people with MS and for that, we are grateful!

Disability parking bill moves through the House

Earlier this week, the disability parking bill addressed at the Day of Activism passed the Washington House of Representatives. The bill is intended to crack down on the fraudulent abuse of disability parking placards, but the Society expressed concern about its detrimental impact on people living with MS. The bill moved forward after legislators removed the section that concerned MS activists, preserving parking privileges for people living with MS.

A recent article from Everett's Herald newspaper provides a good overview of the issue, and quotes the Society's advocacy director, Jim Freeburg. The National MS Society has been urging lawmakers to focus on increasing enforcement rather than taking away privileges from legitimate users. House passage of the bill suggests that lawmakers are listening.

House Bill 2463 now moves onto the Senate where it will need to receive a hearing in the Senate Transportation Committee before March 3 in order to become law.

Senate shows support for special needs transportation - you can too!

The Senate Majority Coalition Caucus released their latest proposal yesterday and it includes an additional $111 million for special needs transportation over the next twelve years. This is a significant increase over the proposal released this fall, but it still isn't perfect. The proposal neglects to include any new funding for community organizations providing special needs transportation. Instead, it allocates all of the additional funding to transit agencies offering paratransit services.

MS activists should be pleased that legislators heard our message from the Day of Activism. But we shouldn't rest. The House still needs to approve the transportation package, and this will only occur once legislators reach a consensus over reforms that the Senate is proposing. That consensus could take some time, but we hope legislators will move forward. MS activists should continue pressing legislators to take action on improving the state of accessible transportation in Washington. Too many people with MS and other disabilities need it!

MS activists should continue to talk about the importance of special needs transportation at legislators' town halls and on social media. If you are on Twitter (and now Facebook!), join the discussion with these hashtags:
#WaLeg - all things Washington Legislature
#WaTranspo - tweets about the transportation package
#KeepUsMoving - our hashtag for special needs transportation advocates
#MSactivist - for all your MS advocacy

Our Day of Activism in Olympia....Success!

Over 65 MS activists descended on the Legislature last week to talk to lawmakers about the importance of accessible transportation and disability parking for people with MS. Despite the cold, volunteers came from all over the state and met with half the Legislature - an incredible feat! It was an inspiring day and made me so proud to be a member of the MS community. 

Activists met with legislators to talk about House Bill 2463 - an effort to crack down on illegal users of disability parking placards that would restrict the ability of people with MS to get free and unlimited parking. Because of our advocacy, lawmakers removed the restrictions on parking privileges for people with MS and other mobility impairments. The bill moved out of the House Transportation Committee last week and should move forward.

Lisa and Martin Boon

Sue Dahlin-Morales meeting with Senator Andy Hill's staff

Cermit Rickey on the Capitol steps

Jane Foy and Nora Gibson

Veronica Chase discussing our priority issues.

Additionally, volunteers advocated for additional funding for accessible transportation. Too many people with MS are unable to get around their communities and the legislature should increase funding for accessible transportation (also known as the special needs transportation fund). While the legislature isn't expected to pass a new transportation package anytime soon, we will be working with them to ensure they don't forget about the transportation needs of their constituents who live with MS and other disabilities.

Insurance Commissioner Mike Kreidler (photo courtesy of Martin Boon)

One highlight of the day - Insurance Commissioner Mike Kreidler joined us to provide a quick update on the Affordable Care Act. Commissioner Kreidler is a long-time supporter of the MS community and is always a favorite speaker at the Day of Activism.

Thanks to all the Activists who attended the Day of Activism. And for all those who weren't able to attend, you can still make a difference. Email your legislators today and ask them to fund accessible transportation - it's not too late!

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?

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?

Advocates Testify at the State Capitol to #KeepUsMoving

A chilly November day in Olympia

The proposed transportation budget affects us all—as shown by the hundreds of stakeholders who spent hours at the Washington State Capitol in Olympia last Thursday to testify before the Senate Transportation Committee.

Stakeholder testimony emphasized the need for legislators to partner with communities statewide to support transportation projects. While many people focused their testimony on roads, jobs, and economic development, a number of individuals spoke up for the critical role of accessible, public transportation, and better infrastructure for pedestrians to keep our state moving.

Accessible transportation advocates echoed many of the requests made at the statewide listening sessions this fall.

As a volunteer for the National MS Society, I explained the needs of people living with MS and encouraged the Senators to maintain the proposed funding level for the special needs transportation fund ($33 million). I also asked them to continue to fund mass transit and pedestrian infrastructure, which serve as key links for people with disabilities who can’t drive.

Activists spoke up for people with special needs and public transportation:

Peggy Quan, AARP:

Hundreds packed the hearing room for the meeting

“I want to encourage policy makers to think broadly to meet the needs of the aging and disabled population. Nationally, over 2 million people with disabilities never leave their homes. Of those individuals, 560,000 don’t leave home due to transportation difficulties. Complete streets and special needs funding should be priorities in this transportation package.”

Kathleen Dunn, Member of West Seattle Bike Connections:

“The heroes of transportation are those who use modes of transportation other than cars, either by choice or by necessity.”

Denise Colley, Washington Council of the Blind:

Legislators listen to public testimony

“We are grateful for inclusion of additional funding for the special needs program and while the proposal is significant, we think it still underinvests in programs that serve people with disabilities. Transit and other services allow people with disabilities to go where need they need to go by coordinating transportation, supporting paratransit services, and providing travel training to those who need it. Transportation is essential to the lives of blind people. We’re workers, students, caregivers, and members of the community. We depend very heavily on public transportation. We want to live as full a life as possible, just like everyone else.”

Tanna Shoyo, National Federation of the Blind:

“The problem with this bill—as it is currently—is that doesn’t include enough transportation funding. This is my ORCA card—it’s my car keys, because buses and trains are my car. If you don’t fund transit, you basically are repossessing my car. We need buses so people can get to work… I recently moved here from Lincoln, Nebraska and I saw the effect of transit cuts in that city—I had to take cabs and I couldn’t get anywhere. So, please include more public transportation [in the budget].”

Take action!
We need to keep letting our legislators know that special needs transportation funding matters! Below are some things you can do that will make a big difference:

• Write your legislator now! It’s easy and takes just a few minutes. We’ve prepared an email that you can send to your representatives with just the click of a button. Take action here.

• Meet with your legislator. Learn more by reading this issue brief, then set up a meeting to discuss this issue with your legislator. You can also provide your legislators with this leave-behind handout so they know what to do.

• Sign up for the Washington Day of Activism in Olympia. The next legislative session is just around the corner! Help us bring the stories of people living with MS to our state's elected officials on February 5, 2014. Sign up here.

• Tell your story. What obstacles do you face in accessing transportation? Is it bad sidewalks? Overcrowded buses? Or no transportation at all for people with disabilities? We need to know. Contact us, using the information below.

We are thankful for all the MS activists and other advocates working hard to ensure that the needs of people living with MS and other disabilities are a priority in the transportation package.

Questions? Contact Jim Freeburg at jim.freeburg@nmss.org or call 206-284-4254, ext 40237.

By Linnea Nasman, MS Advocacy Volunteer