Seattle Speaks Up to #KeepUsMoving

This week, Washington State Senate transportation leaders hosted the final meetings in their bipartisan listening session tour. Hundreds of people showed up to Monday’s meeting in Seattle to address transportation challenges, including local officials from Seattle and nearby cities, union representatives, businesses, pedestrians and bicycle commuters, low-income advocates, young adults, and people with disabilities.

Many spoke up in support of public transit and other transportation options, urging the legislators to prevent cuts to service and to ensure sustainable funding for all forms of transportation.

A few spoke up specifically for the needs of people with disabilities. Robert Canamar, who uses a wheelchair and is a Commissioner on the Seattle Commission for People with Disabilities, said:

“I’m not here to berate you; I’m here to open your eyes. My constituency is people with disabilities and how do we get around? By public transportation. We use buses, trains, and Access [paratransit]. Once a day, because of inadequacies with bus system, I have to wheel myself over a mile to get to the bus. You must fund public transportation so people can get to work, doctor’s appointments, and other places they need to go.”

Jacob Struiksma, a blind person and transit advocate, told legislators:

“I walk and take transit to go anywhere: meetings, the grocery store, the beach, to hang out with my friends. Transit is my life. I spend thousands of hours on a bus or walking because I don’t have the choice to just get in a car and drive anywhere. Transit is the main way for many people to get around and it’s something people across the state want, but some areas may soon have no transit options because we aren’t funding it. Jobs and a good economy are driven by transit access, not by building more lanes.”

A young woman who recently moved to Seattle said,

“It’s hard enough for me to catch a bus on time or cross the street safely; I can’t imagine how hard it could be for a person with a disability. The bus is a big part of my daily routine. Cutting funding is baffling—if anything, we need more funding.”

Transportation options help create a web of connectivity, allowing people to get where they need to go—including school, work, shopping and social activities. Access to these options is especially important for people with disabilities. 

An increase in special needs transportation funding will ensure that communities across the state can coordinate solutions that meet the diverse transportation needs of each region. It will keep people with disabilities connected to their community.

Take action!
The listening sessions may be over, but we still need to tell our legislators how critical special needs transportation is in the everyday lives of people with disabilities.

• 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. 

• If you missed the meetings, you can also leave an online comment for the Senate Transportation committee. 

Contact us for help with scheduling a meeting or to let us know how you visit goes! Send an email to jim.freeburg@nmss.org or call 206-284-4254, ext 40237.

By Linnea Nasman, MS Advocacy Volunteer

Photo credit: King County Metro

Can you #KeepUsMoving?

The National MS Society and other disability advocates are gaining momentum in our effort to increase transportation choices for people with disabilities like MS. Advocates are meeting their legislators, sharing their stories and building our coalition even bigger each and every day. But we still need your help. 

Can you join us by speaking up at a town hall meeting on transportation? Two events remain and we need your help to make sure special needs transportation is on the agenda. Note: the Seattle forum has changed location in order to accommodate more attendees. 

Here are the dates and locations of the town halls:

• Oct. 14 – Seattle 6-9 p.m.
• Seattle First Presbyterian Church, 1013 8th Ave. 
• Oct. 15 – Bellingham 6-9 p.m.
• Port of Bellingham Cruise Terminal, 355 Harris Ave.

Let us know if you'll be attending any one of these meetings so we can get the most current information to you. Send an email to jim.freeburg@nmss.org or call 206-284-4254, ext 40237.

Earlier this week, I met with state Senator Steve Hobbs (Lake Stevens) to talk about our campaign to #KeepUsMoving. Senator Hobbs represents a part of Snohomish County that is like many parts of our state - once rural, but increasingly suburban as people move outwards for affordable housing. Thus, Senator Hobbs knows how important transportation is to get people to their jobs, medical appointments, and places of worship.

Senator Steve Hobbs

Senator Hobbs agreed to support our effort and #KeepUsMoving, but he needs support from other legislators to make this happen. And that means we need you to talk with them. 

Can you help? Learn about our effort from this issue brief and then set up a meeting with your legislator. We will even provide you with a handout to leave behind with your legislator so they know what to do. 

Representative Cyrus Habib agrees to #KeepUsMoving. Will you?

This morning, MS Activist Karl Schiller and I met with state Representative Cyrus Habib to ask for his help with our effort to improve transportation for people with MS and other disabilities. Karl, a constituent of Rep. Habib, shared the experiences of many people in the MS community who are not able to drive because of their MS. He attends a weekly swim aerobics class and one of the participants relies on the King County Access shuttle to get to and from class. Sometimes she'll have to wait an hour or more to get picked up from class because their aren't enough shuttles. We hear stories like this all the time.

Rep. Cyrus Habib

Representative Habib fully understands the challenges that someone with a disability faces. When he was 8, he lost his eyesight to cancer. Now, he's a Yale-educated attorney and a member of the state legislature When we asked if he would support this effort, Rep. Habib not only said "yes!" - he encouraged us to go even further and ask for a bigger package. People with MS have so many unmet needs when it comes to transportation, and while Rep. Habib has agreed to help, we need your help as well. 

We've blogged previously about town halls throughout the state where legislators want to hear from you about your transportation needs. However, because of overwhelming demand, the legislature just added three more town halls in Seattle, Bellingham, and the Tri-Cities. See below for the complete list, with the new additions in bold.

• Sept. 17 – Bellevue (Northwest Region) 6-9 p.m.
• Stevenson Elementary School, 14220 NE 8th St., Bellevue, WA 98007
• Sept. 18 – Everett (Northwest Region) 6-9 p.m.
• Snohomish County, Robert Drewel Building, 3000 Rockefeller Ave., 1st floor, Everett, WA 98201
• Sept. 23 – Wenatchee (North Central Region) 6-9 p.m.
• Chelan County PUD Auditorium, 327 N Wenatchee Ave., Wenatchee, WA 98801
• Sept. 24 – Yakima (South Central Region) 6-9 p.m.
• Yakima Area Arboretum, Garden View Rm., 1401 Arboretum Dr., Yakima, WA 98901
• Sept. 26 – Tri-Cities 6-9 p.m.
• Columbia Basin College, Gjerde Center, 2600 N. 20th Ave., Pasco, WA 99301
• Oct. 2 – Spokane (Eastern Region) 6-9 p.m.
• Greater Spokane Inc., 801 W. Riverside, Spokane, WA 99201
• Oct. 7 – Vancouver (Southwest Region) 6-9 p.m.
• Vancouver Community Library, Columbia Room, 901 C St., Vancouver, WA 98660
• Oct. 9 – Tacoma (Olympic Region) 6-9 p.m.
• Evergreen Tacoma Campus, Lyceum Hall, 1210 6th Ave., Tacoma, WA 98405
• Oct. 14 – Seattle 6-9 p.m.
• King County Courthouse, Room 1001, 516 3rd Avenue, 10th Floor , Seattle, WA 98104
• Oct. 15 – Bellingham 6-9 p.m.
• Port of Bellingham Cruise Terminal, 355 Harris Ave., Bellingham, WA 98225

Let us know if you'll be attending any one of these meetings so we can get the most current information to you. Send an email to jim.freeburg@nmss.org or call 206-284-4254, ext 40237.

#KeepUsMoving was @BikeMSWashington. Where is it going next?

This past weekend, we hosted over 2,000 cyclists in Skagit County for our annual Bike MS. MS Activists were out in force at the ride, helping out in a number of ways. Some, like Lisa and Martin Boon, help feed the cyclists. Others, like Emily Cole and Dr. Lily Jung Henson did the ride. Still others like Dorthann Cloud and Linnea Nasman helped us recruit 30 new members for our online Action Alert Network. A big thank you to all those who participated!

MS Activist Dr. Lily Jung Henson (on back), with her husband John Henson

More and more, I'm reminded that one of the biggest keys to our success as an advocacy organization is our ability to raise awareness about MS and the issues that most impact people with MS. So having an event with 2,000 cyclists is a great way to get the word out there. But it's not nearly enough and we need your help.

Can you help us spread the word about the #KeepUsMoving campaign? While you may not realize it, transportation is an issue that affects absolutely every single one of us. If you drive on a road, take a ferry, walk on a sidewalk, or take a bus - government decisions regarding transportation affect you every day.

And it impacts people with MS in an especially unique way. For example, I just was talking to a co-worker of mine, Molly, whose dad lived with MS. Molly told me how MS impacted her life. As her dad's MS progressed, it became apparent that her family needed a modified van that could fit her dad's wheelchair. The van cost $75,000!!!! Instead of paying for Molly's college education, her family spent their savings to pay for Steve's van. It shouldn't have to be that way.

MS is sure expensive, and our transportation system doesn't make it easy for someone with MS to get around. Can you help us do two things today?

1) Find more stories like Molly's. Stories don't just inspire us to think differently, they inspire politicians to act! Share your story with us at MSconnection.org or let me know your story (jim.freeburg@nmss.org) and we'll share it with others.

2) Spread the word. Yesterday, we sent out an Action Alert email to everyone on our list, asking for their help with this effort. Can you forward it to your friends with MS who may have a good story to tell? Or if you didn't get the email, send me a note at jim.freeburg@nmss.org and I'll pass it along to you.

Thanks!

What's in Obamacare for people with high out of pocket costs?

Last night, a KING 5 town hall event on health care featured a question from MS Activist, Susan Brock. The town hall, titled "Health Care: Time to Get in the Game," answered many common questions that people with MS may have about the health law, like "what will happen to me if I'm on Medicare?" or "what will happen to my coverage at work?" Susan's question may be the most important though for people with MS - "What's in the law for people with a chronic condition like MS who experience high out of pocket costs?" 

I don't think Susan's question was answered sufficiently. The panelist answering the question had just talked about help that employers will get for paying for employees' coverage and so he answered the question with that in mind. However, Congressman McDermott did point out that there are no more annual or lifetime limits that often limited coverage for someone with extremely high costs. In addition and most importantly, everyone will now have an annual cap on out of pocket expenses (roughly $6300/year - not including premiums). And if you have a lower income (say because your MS prevents you from working full time), you'll have an additional help with your out of pocket costs. So in short, there's a lot to like in the Affordable Care Act if you currently have high out of pocket costs.

The KING 5 special will be on the air again on KONG 6/16 Sunday, September 7 at 6:00 p.m. and again on NWCN Monday, September 9 at 8:00 p.m. It's also available online - look for Susan's question at the 4:08 mark during the third segment. 

Keep checking back on this blog for more information on the new health care law. There's lots more to come! And if you want to know more about how you will be impacted by the health care law, speak to an MS Navigator at 800-344-4867 or check out more MS-specific information on our website.

#KeepUsMoving

This morning, I met with a number of other disability advocates to talk about the need for more accessible transportation. We all agreed that people with disabilities too often can't get to where they need to go, whether it's someone who is blind, deaf, or has mobility challenges.

We agreed to work together to make sure legislators know about these problems, and now we need you - members of the MS community - to rise up and help make sure legislators know about these challenges. Many of you have come to Olympia for our annual lobby day, helping to raise awareness of MS. It's time to ask legislators to do something about it - help meet the transportation challenges of people living with MS!

In an earlier blog post, I told you about a woman with MS who was denied paratransit services in Pierce County because she "wasn't disabled enough." We need to tell her story (and yours) to legislators to make sure they know that we can't cure MS overnight, but we can make it much easier for someone with MS to be active members of our community.

Legislators just announced this morning that they will be holding listening sessions around the state to hear from the public about our transportation issues. Each meeting will begin at 6 p.m. and last until 9 p.m. and feature presentations from regional transportation officials, as well as opportunity for public comment. 

·         Sept. 17 – Bellevue: Stevenson Elementary School, 14220 NE 8th St., Bellevue, WA 9800
·         Sept. 18 – Everett: Snohomish County, Robert Drewel Building, 3000 Rockefeller Ave., 6th floor, Everett, WA 98201
·          Sept. 23 – Wenatchee: Chelan County PUD Auditorium, 327 N Wenatchee Ave, Wenatchee, WA 98801
·         Sept. 24 – Yakima: Yakima Area Arboretum, Garden View Rm., 1401 Arboretum Dr., Yakima, WA 98901
·         Oct. 2 – Spokane: Greater Spokane Inc., 801 W. Riverside, Spokane, WA 99201
·         Oct. 7 – Vancouver: Vancouver Community Library, Columbia Room, 901 C St., Vancouver, WA 98660 
·         Oct. 9 – Tacoma: Evergreen Tacoma Campus, Lyceum Hall, 1210 6th Ave., Tacoma, WA 98405 

If you can go to these meetings to represent the MS community, please let us know. Wear your orange scarf! And let your social network know about it. Use hashtags like #WeMoveMS #KeepUsMoving #MSActivist #Everett (or wherever you live) to find other disability advocates who may also attend these meetings. Stay tuned for more information about this issue and how to use social media to activate the MS community!

How we help people with MS get to where they need to go

In 2011, the Society asked people with MS: what do you need that you aren't getting right now? When we asked these questions, we searched high and low, near and far to make sure we heard from all sorts of people with MS: young and old, city and country, progressive and relapsing-remitting. The answers, while not particularly surprising, gave us a really good idea of what we should be working on as an organization. 

One of the biggest needs we heard about: accessible transportation. Since then, we've worked especially hard to find suitable transportation for people to and from work, medical appointments, and special family events like graduations in far away places. It's not like we weren't doing this before - we've always done this sort of work, but we realized we needed to be doing more to help people right at the moment they needed help. We couldn't just provide information and expect that people could navigate their way through every resource in their communities. For someone with cognitive or mobility challenges, you could imagine that sometimes they just need a hand. Add in a wheelchair or scooter, a flight or a train ride, and it's just not easy. 

It's definitely hard to help people with their transportation needs. Imagine an individual who was told she was not disabled enough to get paratransit services from her local bus service. We can go to bat for her, making sure her application is filled out, the doctor knows exactly what to say, and the bus service gives her a fair shake, but sometimes, that's just not enough. What if you don't live near a bus line? What if your buses don't run after 6pm and you don't get off work until 7pm? What if you don't have sidewalks in your neighborhood? (Anyone with MS every tripped on a bad sidewalk???) 

In short, there are a lot of unmet needs for better accessible transportation in our communities. Whether its accessible buses, good sidewalks, or even accessible taxis, we need to do better. 

So it was exciting to meet with state Senator Christine Rolfes this morning to talk to her about the need for more transportation choices for people living with MS and other disabilities. Bill Luria, MS Activist, invited myself and two of his neighbors, Mike Lisagor and Jani Pauli, to talk with Senator Rolfes about this unmet need. Senator Rolfes agreed that we need to be doing more, and gave us some great ideas about how we can talk with other legislators to make sure they understand the needs of people with MS. 

As you might imagine, it's not just people with MS who benefit from accessible sidewalks, buses, and neighborhoods. Seniors and people with many other disabilities have these same needs as well. We will be working with them to build a coalition of advocates for accessible communities. 

Can you help us with this effort? Can you meet with your legislators and let them know that people with MS need accessible communities? If so, let me know - it's time for ACTION!

#WeMoveMS