MS Activists meet with Congressman Adam Smith

Advocacy director Jim Freeburg, Congressman Adam Smith, and MS activist Simone Thompson

Monday morning, MS activists met with Congressman Adam Smith, from Washington's 9th congressional district. Congressman Smith has been a long-time supporter of the MS community - not only is he a member of the Congressional MS Caucus, but he's also a strong supporter for increased funding of MS research and many of our priority issues. 

When we met with Congressman Smith, he shared some of his personal connections to people living with MS and it was great to hear that he is keeping up on some of the new MS research that's happening within his district. He's definitely an engaged and informed representative of his community! 

MS activist Simone Thompson shared her story with the Congressman and encouraged him to keep up the good work. We reiterated our priority issues - funding for the National Institutes of Health, the primary government backer of medical research, and a funding stream within the Department of Defense for MS research. The meeting was especially timely given Congress's budget agreement this week - we need to make sure that all of Congress knows the importance of funding medical research.

Congressman Smith appreciated our visit and left us with a request that we keep raising awareness of MS activism within his district. That's something we can and will do. Stay tuned for more details about how you can be involved in MS activism. 

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

Legislators listen as MS Activists speak up

Earlier this week, we heard some exciting news coming from the Senate Transportation Committee of Washington's Legislature - at our request, they are proposing an increase in funding for the special needs transportation fund. This is the fund we've been talking about for some time and it's exciting to learn that the Senate Majority Coalition Caucus is proposing to fund the special needs program by an additional $33 million over ten years. While it's not the full level that we had hoped for, it's still an impressive figure.

Next week, legislators will be in Olympia for committee days, an annual "pre-season" of sorts to the legislative session. It's possible they will reach an agreement on a new transportation package before then, but it's no guarantee. Governor Inslee was hoping legislators would reach agreement on a package during the special session he called to entice Boeing to build their next airplane in Washington, but the special session finished up without a transportation plan.

If legislators do have an agreement on a transportation plan, MS Activists will be needed to testify in Olympia, perhaps as soon as next week. Stay tuned to the blog for more details as we learn more.

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 

Disability parking - how can we fix it?

This past session, lawmakers in Olympia tried to get a better handle on a problem that impacts many people with MS: the abuse and misuse of disabled parking. People with MS often rely on disability parking placards to help manage the fatigue that so often accompanies MS. Unfortunately, too many others take advantage of the placards and park in disabled parking spots, leaving people with MS without accessible parking. 

The bill considered by legislators would have given additional tools to city officials to crack down on fraudulent drivers. However, it also raised concerns that legitimate users could be harmed by the crackdown.

In the end, legislators decided the problem needed some additional research before they could determine a fix, so the Department of Licensing (DOL) created a task force to ask the public for possible solutions. The DOL's blog post requesting public comment has already received quite a few suggestions in the comment thread. The comments also show the biggest challenge associated with this problem - cracking down on abusers could hurt people with invisible or intermittent disabilities, like people with MS.

The National MS Society has followed this issue closely for some time. In 2011, in an effort to free up parking spaces, the City of Seattle proposed ending free all day parking for people with a disabled parking placard. The Society opposed the effort and met with the Seattle City Council to voice our opposition to the effort, expressing concern that it would harm people whose extensive medical appointments require long parking stays. The City dropped the plan but has since continued to research other ideas.

What do you think we should do about this problem? Do you see it in your neighborhood? Give us your thoughts in the comment thread below and send your comments to the DOL task force at DPWorkgroup@dol.wa.gov.

Health care reform - what does it mean for you?

Come 2014, our health care landscape is going to look very different for people with MS. You can no longer be denied insurance coverage for your pre-existing condition, many of you will have limits on your out-of-pocket costs, and you could even get low-cost or even free health plans. Why? The Affordable Care Act will come into full effect.

Sounds great on the surface, but what does it really mean for YOU? We are starting to see some opportunities to learn more about these changes and we'll see many more in the months ahead. The National MS Society will be hosting a teleconference in early October aimed at the parts of the health care law most important to people with MS. We also have a great website geared towards getting you the information you need to know.

Healthcare.gov is another great resource for you. In many states, that's the new place you'll go to purchase affordable health insurance. In Washington, HealthPlanFinder will be your source to find, compare, and enroll in health insurance.

When you are purchasing health insurance, here are a few things for you to watch for:

• Make sure your neurologist is in your plan's network
• Check to make sure your MS drugs are covered
• Understand your total costs, including deductibles and cost-sharing - not just premiums

Purchasing health insurance can be confusing. Healthcare.gov and HealthPlanFinder will make it easier, but we encourage you to contact us if you have questions or are concerned about getting the best plan for you. We can help. Call the National MS Society at 800-344-4867. 

Never give up on medical research!

Why should we never give up on medical research? It's not just cures, cures, cures. It's jobs, jobs, jobs!

In his weekly column in The Week, former U.S. Senator Bill Frist cites the National MS Society as a leader in funding medical research and argues that we can't let up on our funding for medical research. The need is too great, and with increasing competition abroad, we need to keep investing in medical research in the United States to find a cure for diseases like MS and cancer. This applies to federal funding allocated by Congress, private industry like pharmaceutical companies, and especially community organizations like the National MS Society.

Bill Frist knows quite a bit about medical research and why advocates must continue to be strong in the face of adversity. He's a heart surgeon and served as the Senate Majority Leader from 2003 to 2007. His column particularly emphasizes the economic benefits of medical research - a perspective that I think is useful for MS Activists to know and understand.

With a tough economy and a political environment that seems to favor jobs over all else (including the environment, consumers, taxpayers, and health), MS Activists need to be able to speak the language of politicians if they want to have the maximum impact. Like anyone who works in sales knows - you have to understand your customer. Politicians want to talk about jobs, so let's talk to them about jobs. Medical research = jobs. Medical research = putting people back to work. Medical research = a winning issue for politicians (and a cure for MS!).

Help us make sure the health care law works for people with MS

People with MS often have a difficult time finding a good health insurance plan that is affordable and comprehensive. Too often, plans either cost way too much or don't cover your MS drugs. Luckily, help is on the way. 

The Affordable Care Act created a new way for people to compare and purchase health insurance that fits your budget and meets your needs. The Marketplace (also known as an exchange) will allow you to fill out one application and you'll be able to compare plans based on price, benefits, and quality. 

To make sure the Marketplace (called HealthPlanFinder in Washington) works for people with MS, we need some people who are willing to be "user testers" of the new website. You'll have a chance to make sure that the particular needs of people with MS are considered. If this interests you, please let me know at jim.freeburg@nmss.org or (206) 284-4254, ext 40237. We are looking for testers available August 5-9 and 12-16. You'll need to travel to Olympia for a three hour session. 

Healthplanfinder will open October 1, with coverage starting January 1, 2014. Individuals outside of Washington can find their exchange at Healthcare.gov. 

Congressional support for increased MS research grows

At the end of June, ten MS Activists met with Congressman Derek Kilmer to ask him for increased funding for MS research. They shared their personal stories, and by doing so, recruited a new ally to the MS movement. Read on to see what Rep. Kilmer had to say about the visit in his e-newsletter to his constituents:

"This week I met with the Greater Northwest Chapter of the National Multiple Sclerosis Society on Bainbridge Island. In the meeting I heard from a group of people living with MS all of whom had unique stories ranging from a teenage girl who faces occasional paralysis to a senior citizen who faces considerable challenges on a daily basis.

I joined the Congressional Multiple Sclerosis Caucus because the federal government has an important role to play to tackle challenges related to MS. First, Congress should continue to fund MS research to prevent the occurrence, slow progression, and lessen the symptoms of the disease. 

Second, Congress should continue working to ensure access to appropriate treatment, alternative therapies, and pain relief for those with MS so that they can live more comfortable and productive lives.

Additionally, Congress must support funding for the Lifespan Respite Care Program to ensure family caregivers have the support they need. And finally, Congress needs to continue to give these issues the attention they deserve. That’s why the advocacy of groups like the National Multiple Sclerosis Society is so important."

The meeting is a great example of MS Activists reaching out to a politician and asking for help to raise awareness of multiple sclerosis. Rep. Kilmer was elected to Congress this year to represent Bainbridge, NW Tacoma and the Kitsap and Olympic Peninsulas. It's pretty impressive that he came out so strongly in favor of our issues. Thank you to the MS Activists who made that possible! 

Tips on how to be an effective citizen lobbyist - from the staff of Congressman Adam Smith

Meeting with politicians and their staff is one of the best parts of my job. I'm always amazed at how easy it is to talk with our elected officials and it makes me proud to have such an open and democratic government in our country.

A big part of the job description of a politician is to meet with constituents - it's how they learn about important issues and stay accountable to voters. A politician can't be everywhere at once though and so they rely on their staff to help out with their tasks. Last week, along with MS Activists Simone Thompson and Karl Schiller, I had the opportunity to meet with his very helpful deputy district director of Congressman Adam Smith, Debra Enteman.

Karl and Simone were great in sharing their stories with Debra, and she was very helpful in giving us some tips on how to be effective citizen lobbyists. I think they are worth repeating:
1) Stay informed - learn about the issues and know what you want your elected officials to do about them.
2) Tell your story effectively - the best activists don't just have an opinion on an issue, they have a personal connection to the issue that makes it compelling.
3) Remind the elected official that you are a constituent - include your address in all your correspondence as politicians care most about voters in their district.

Congressman Adam Smith is a longtime supporter of the MS community so we didn't have to do any hard selling during the meeting. He's a member of the Congressional MS Caucus and a fervent supporter of increased funding for medical research. Still - it was a great chance to be a part of our democracy.

Karl Schiller, MS Activist and Jim Freeburg, advocacy director

Discrimination at the doctor's office

The New York Times has an interesting blog post about the prevalence of blatant discrimination towards people with disabilities at doctor's offices throughout the country. It includes comments from a prominent MS researcher Dr. Lisa Iezzoni that made me think about how much work is left to do to fully incorporate the vision of the Americans with Disabilities Act (the ADA). I frequently hear from individuals about buildings that aren't accessible, discrimination at the work place, and the lack of accessible transportation in the community - all issues that the ADA was trying to address.

While passing new laws is necessary to change behavior, it is only a part of advocacy. Implementing laws that have already passed is the much larger and often more complicated challenge. And that work takes an incredible amount of time, patience, and persistence in order to see the intent of the law actually come true.

It makes me think - where have you seen discrimination because of your MS? At your job? At the doctor's office? How much work do you think is left to make real the intent behind the ADA?

Should your rights as a person with a disability stop when you leave the country?

I think most people with MS would say that all people with disabilities around the world should have the same protections we have in the United States because of laws like the Americans with Disabilities Act (ADA). And yet our own leaders refused to acknowledge this when the U.S. Senate refused to ratify the Convention on the Rights of Persons with Disabilities (CRPD) in December, 2012. Why did that happen? Find out at a couple of events happening this week.

Many groups like the National MS Society were very active in supporting the CRPD. In fact, we helped to generate thousands of messages to our members of Congress, urging their support for the treaty. We'll be trying again this year as it agains comes up for consideration. However, it wasn't enough and we failed by five votes.

To learn more about these efforts, I invite you to participate in two events put on by our disability rights allies:

1) A conference call put on by national disability rights leaders, including U.S. Senator Tom Harkin, to discuss the plan for CRPD ratification. It will be Thursday, May 16 at 12 p.m. PT. To RSVP, click here.

2) An evening lecture at the University of Washington with three leading disability activists to explain the CRPD, examine why the U.S. Senate refused to ratify it, and explore strategies to achieve ratification of the treaty this year. It will be held this Thursday, May 16 from 5:00 p.m. - 8:00 p.m. at William Gates Hall at UW Law School. RSVP to Jodi Rose at jodir@dr-wa.org

The MS movement is stronger than ever.....A guest post from MS Activist, Simone Thompson

My life struggle with MS is painful and complicated. Knowing there are others suffering from MS is heart-breaking. MS does not discriminate. It is unrelenting.

Through pain, loss, confusion, fear and anger I finally realized the MS war is far larger than myself. I feel compelled to speak for those unable to speak for themselves. So many impacted by this life-altering disease rely on public officials to give voice and resources to aid in their battle.

I am ill, but I still have a voice!

Today, I fight for my brothers and sisters living with MS. I lend my voice to the battle for their success and cure - not just my own. Together we can win!

Directing my small voice to my local Washington State 9th Congressional District Representative, Adam Smith, I was delighted and enlightened to learn of his extensive involvement in the MS fight. Congressman Smith directly advised that he supportive of not only NIH Funding, but Representative Smith is also a member of the Congressional Multiple Sclerosis Caucus, which creates a political platform for discussing important issues for those facing MS. This caucus has two main goals: (1) Find solutions for people living with MS and (2) promote awareness and education about MS.

Congressman Smith is committed to finding solutions and cures for MS! His dedication and advocacy are truly appreciated.

I strongly suggest reaching out to your local and federal officials. Making your vote count is a priviledge and can lead to great results! Writing letters, attending caucuses and phone calls can go a very long way.

Did you know the Washington State Legislature has been cutting medical research funding?

It’s not well very known, but since 2005, the state of Washington has been funding innovative scientists in our own backyard who are dedicated to finding cures for diseases like MS through the Life Sciences Discovery Fund (LSDF). The funding for this research has come from the multi-billion dollar tobacco settlement that then-Attorney General Christine Gregoire negotiated to compensate for increased health care costs from tobacco use. Unfortunately, this funding has been cut more and more as the budget crisis in Olympia worsens.

I was reminded of this state program by a recent article in the Puget Sound Business Journal that highlights the recent round of grants. While there aren’t any that relate to MS this year, one of the largest grants ever by the LSDF went to Benaroya Research Institute in 2007 to focus on improved diagnosis and treatment of autoimmune diseases. That grant has since been used to leverage millions more in funding from other institutions like the NIH.

I’ve been looking for an excuse to highlight the LSDF on this blog, because it’s a great example of what more the Legislature could do if it had more funding. The LSDF has been continually raided by legislative budget writers to pay for other state programs like education and health care. It was initially expected to fund $350 million in research over 10 years but only will be able to fund $7 million in research this year. That's too bad because we have so many smart scientists who are willing to work harder and smarter to find cures to diseases like MS, but don't have the funding to do it.

I think we knew this already - there aren't enough MS docs out there

A new study just published by the American Academy of Neurology finds that the current shortage of neurologists is only expected to get worse in the years ahead. For someone who lives outside of a major metropolitan area like Seattle, this isn't new news. It can very difficult for patients to find a neurologist who specializes in MS care, especially in rural places like Montana and Alaska. And while the Society has been working on this issue for some time by recruiting medical students via MS fellowships, there's more work that can be done, especially by Congress.

Two years ago, MS Activists at the Society's annual lobby day in Washington, DC asked Congress to find solutions to address this issue and just last week, neurologists were again asking Congress to do the same thing. The long-standing nature of the problem and the lack of action by Congress points to the severity of the challenge we are facing, but that doesn't mean we should give up. In fact, I think it means we need to double-down on our efforts and work twice as hard until we find a solution.

And we need to be creative about our solutions. In 2011, our Chapter successfully pushed a law through the Washington State Legislature that closed a loophole discouraging foreign-educated MS specialists from practicing in the state. This legislation has already kept one MS specialist around and we hope it will continue to be useful in the years ahead as the shortage of neurologists gets worse.

52 members of Congress ask for more MS research, including two of our own!!

Every spring, members of Congress take a good look at the needs of their communities and draw up a list of their priorities for the next year. These issues differ widely from state to state, party to party, politician to politician. In many ways though, the lists are predictable. In Washington, where our economy is dependent on trade, aerospace, technology, and agriculture, our elected officials spend a lot of time talking about those issues. In Montana and Alaska, that means rural concerns and natural resources like oil and coal. These issues must appeal to a wide swath of voters and command the headlines. Politicians use these issues to make sure their constituents know that they have someone who has their back in Congress. So who has our back? Last week, I blogged about a few members of Congress who have been strong supporters of the MS community and I'm proud to tell you about a few more.

While MS research doesn't usually sway a lot of voters in an election, Representatives Rick Larsen and Jim McDermott stepped up to the plate in a big way last week, formally expressing their support for increased funding for MS research in a letter sent to House leadership. Why? Because they were asked by people who elected them to make MS a priority. If you live in their districts, you owe them a big thank you! For Rep. McDermott, that means people in most of Seattle (except the SE), Vashon Island, and Shoreline. For Rep. Larsen, that's western Snohomish and Skagit counties, southwest Whatcom County, and Island and San Juan counties. Thanks for getting our back!

How do you define disability?

A few things coming across my desk recently have really made me think more about the definition of disability. The first item was an extensive segment on NPR that described a significant increase in the numbers of people who are on government disability programs (SSDI and SSI).  The author's point is that disability programs have become the "new" welfare for the unemployed and it's too easy to get on disability. The piece has been widely criticized by disability advocates for being unfair and missing the point that the increase is due largely to demographic changes (an aging workforce) and that it's actually very difficult to get disability benefits. A quick google search will point you to many of these criticisms, though this long one gave me much to think about. Whether the claims made in the NPR story are true or not, you can't deny that more people are on disability programs and we need to figure out a sustainable way to pay for them - and figure out what we can do to increase the self-sufficiency of people with disabilities (more on that below).

Then I saw an announcement about a speaker from the Disability History Museum, an online effort to educate the public about the disability movement over the years. It has some great exhibits and helped me understand that "disability" has so much attachment to paid work, it's no surprise that articles like the NPR segment and this one on disabled firefighters keep popping up.

In particular, both these things made me think about the diverse groups of people within the "disability community" - if there is such a thing. For example, someone with an MS-related disability likely acquired it during their adult life. They are aware of what it is like to not have a disability and so to them, a disabled life is a different life. For someone who has been disabled since birth, disabled life is not different, it just is. So it gives me a better understanding of why disability groups have traditionally played in different circles in Olympia - a problem I'm trying to correct by the way. Most excitingly, I'm working to bring disability advocates of all stripes together to support a major initiative to increase employment for people with disabilities.

This debate of what it really means to have a disability is also front and center to the disabled parking discussion that is going through the Legislature and the City of Seattle. Many assert that there is systemic abuse of disabled parking placards by people who don't really need them or have obtained them illegally. With too many placards in circulation, the City of Seattle asserts that people without disabilities are being left without any place to park. I know many people with MS have been accused (either silently or otherwise) of not being disabled enough, and shouldn't use these placards. But what are the real problems in the system? Are too many people disabled? (I know too many people live with MS in Seattle, but I don't have an easy way to fix that.) Do we make it too easy to have the government say you are disabled? I don't think many people with MS who have applied for disability would say that.

How do you think we should write laws that help people with disabilities (including unpredictable and sometimes temporary symptoms like those associated with MS) while not giving everyone a free pass? 

MS and Congress - what are they doing about us?

Too often, the public is unaware of what our elected officials are doing. Whether it's a lack of time, interest, or trust, Americans just don't usually know politicians do on a day to day basis. It's unfortunate, because when this happens, it's left up to the professionals (lobbyists) to tell politicians what is happening in the real world, rather than real people. I saw it all the time when I worked for a state senator in Olympia and it's the reason I came to work for the National MS Society - real people and their experiences aren't connected to their elected officials and they should be.

So this past few weeks, the Society has been taking real people to meet with the offices of our state leaders and it's been exciting to see what happens. First, in Spokane, MS Activist and small business owner Mike Burns met with Rep. Cathy McMorris Rodgers to present her with the Society's Representative of the Year award. He's pictured below, with Nicole Nida, the services manager with the Inland Northwest Chapter of the Society, on the right of Rep. McMorris Rodgers.

Rep. McMorris Rodgers has been a longtime disability advocate in Congress, serving as the lead sponsor of the Lifespan Respite Act (an important measure to support family caregivers) and co-chair of the Neurosciences Caucus. Mike shared his story of living with MS and the impact of public policy on his life. He currently gets his health care through WSHIP, a health insurance program for people with pre-existing conditions that will be made obsolete when the Affordable Care Act comes into full effect in 2014. While the fate of WSHIP is now in the hands of state legislators in Olympia, it's important for members of Congress to know what's happening with health care in the state and Mike is just the guy to spread that message.

At the same, other MS Activists met with the staff of Senator Maria Cantwell in Seattle to reiterate the need for more research funding so we can stop the progression of MS, restore function, and end MS forever. Three activists and a neurologist talked about the huge diversity within the MS community and the need for treatment options for people with progressive MS (and better and cheaper treatment options for those with relapsing-remitting). Senator Cantwell has also been a champion for the MS community - attending our events in the past and advocating loudly for more research into the causes of MS and other chronic diseases. But it's always important to keep visiting your friends and reminding them that we can't let up the fight!

These two stories are just a few of the activities that MS Activists have been up to recently, but they aren't the only ones. What have you been doing to raise awareness of MS with your elected officials?

Why did the disability treaty fail?

The Boston Globe has a great article on why the UN Convention on the Rights of People with Disabilities failed to pass the US Senate this past December. Traditionally, disability issues have always been bipartisan. For example, former Senator Bob Dole, one of the disability movement's leaders, helped to push through the Americans with Disabilities Act (the ADA) under President George H. W. Bush with significant bipartisan support.

Unfortunately, the issue has now become a divisive issue in today's acrimonious political environment. Despite what seemed to be a sure bet, ratification of the international treaty failed by five votes. Only eight Republicans voted for it.

Here's the Boston Globe article. For someone like me who is rather new to the disability movement, it also offers a thoughtful overview of the politics that surround disability issues.

Within the MS community, I know there are Democrats, Republicans, and Independents. We put our political viewpoints aside in order to focus on what's best for people with MS. What can we do to make disability rights a bipartisan issue again?