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