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?

Changes are coming to your health insurance

The Affordable Care Act was signed into law by President Obama three years ago tomorrow and we are on the cusp of the major changes taking effect. To help you get a better sense of what this means for you, I thought I'd share with you this recent press release from the Office of the Insurance Commissioner that summarizes these changes quite nicely. Read on.... 

OLYMPIA, Wash. – Three years after the passage of the landmark Affordable Care Act and Washington state is now on the cusp of the biggest health care reform in decades.

“We’re busy at the state and federal level, working behind the scenes to make sure that health care reform lives up to its promise,” said Insurance Commissioner Mike Kreidler. “But as we approach Jan.1, 2014, people want to know what the changes will mean to them.”

As early as October, you can start shopping for coverage in Washington state’s new online marketplace, the Healthplanfinder where it will be easy to compare plans, check prices, sign up for coverage and – depending on income – get help paying for it. Individuals earning up to almost $46,000 and a family of four earning up to $94,200 could qualify for subsidies.

“The financial help available through Washington’s new Healthplanfinder will be a lifeline for people who are uninsured or struggling to afford the coverage they have today,” said Kreidler.

To help you get ready for the coming changes, we’ve launched an expanded edition of our health reform website with specific information for individuals and families including:

·    Who has to have health insurance

·    Where you can buy it

·    How much it’ll cost

·    What it’ll cover

Additional resources for small businesses, large businesses and seniors will be added soon so check back often.  We expect to receive rate requests from health insurers for their individual and small employer plans starting in May on our health insurance rate transparency site. At that time, you’ll also see which insurers want to have health plans in the Healthplanfinder.

Sign up today to be notified by email if your health insurer requests a rate or benefit change.

The following reforms are already in place:

·      No out-of-pocket costs for preventive services,

·      Sick children can no longer be denied health insurance,

·      No lifetime caps on the amount an insurer will pay for covered benefits,

·      Young adults can stay on their parents’ health coverage until age 26,

·      And your health plan can’t be canceled, except if you lie on your application.

Other major reforms starting Jan. 1, 2014 include:

·      No one can be denied health insurance if they’re sick.

·      All individual and small employer health plans must cover essential health benefits, such as prescription drugs, hospitalization, maternity care and emergency services.

“The Affordable Care Act won’t fix everything that’s wrong with our health care system today,” said Kreidler. “I’m certain that just as we did with Medicare, we’ll need to make improvements. But the reforms in place now and those coming next year are a huge first step, and not a moment too soon.”

Representative Cathy McMorris Rodgers: the National MS Society's Representative of the Year

The citizens of Washington state are lucky to have elected officials who understand the needs of people who live with MS. To prove this statement, you need to look no further than the 112th Congress (2011-2012), when we had ten of the eleven members of our congressional delegation belonging to the MS caucus. The Congressional MS Caucus are dedicated members of the U.S. Congress who raise awareness about MS on Capitol Hill and together, seek creative federal policy solutions to the challenges facing people living with MS and their family caregivers

When we reach out to our federal officials, they listen. And it's only because our committed MS Activists have asked their elected officials to pay attention to their constituents who live with MS. It's that easy.

However, some elected officials go above and beyond, and don't just support us, they want to know how they can lead the charge. Rep. Cathy McMorris Rodgers, of Spokane, is one of those individuals. She was our lead co-sponsor last year on the Lifespan Respite Care Reauthorization Act and supported our efforts to create an MS registry. For those efforts and many more in leading the disability movement forward, Rep. McMorris Rodgers was recently awarded the National MS Society's 2012 representative of the year award. Congratulations to her and all her constituents in the 5th congressional district, including Spokane and much of eastern Washington!

For more information, check out this news article. And if you are interested in helping out to ask our elected officials to pay attention to the needs of the MS community, let us know.

Your lawmakers are hosting town halls this weekend in your community - will you be there?

State legislators are headed home this weekend to meet with their constituents about issues being discussed in Olympia. It's a great opportunity for you to talk to them, whether you met with them during our Day of Activism or even if you've never met them before. 

Check out this link for a list of town halls for your legislators. If you don't see your legislators listed, give their offices a call and ask if they plan to have one scheduled. To look up your legislator, use this useful tool. Note that it will give you both your state legislators (who represent you in Olympia) and your congressional lawmakers (who represent you in Washington DC).

If you attend the town halls, we need you to continue to spread the two messages that we shared with legislators at the Day of Activism - keep WSHIP open indefinitely and cover more people through Medicaid! Let me know if you plan on attending these meetings and I'll make sure you know how to be the best advocate for the MS community.

To find out the latest information about these and other issues, download the last MS Activist teleconference call here. And join us for our next call on March 25 at 12:15. These calls are open to all volunteers interested in moving our issues forward. Details can be found in the green box on the right side of this page.

The National MS Society is also holding meetings with members of the congressional delegation from around the state and we could use your help to make sure they know how we feel about the issues important to the MS community. If you want to attend these meetings with me and/or other volunteer leaders, please let me know.