What's the National MS Society doing about the cost of MS drugs?

Great question. I'm glad I asked that. A recent article in the New York Times gives a great overview of the challenge that we face in asking state legislators to put a cap on the price of MS drugs. In Washington, we supported legislation (HB 1876 and HB 2435/SB 6241) to limit the cost of drugs. Unfortunately, the bills did not pass, though we heard from several legislators that this is an issue they'd like to help us with. The American Cancer Society also pushed hard for this legislation and in tandem with other chronic disease organizations, we were able to set up a mechanism to address the issue in the future if it causes adverse selection (the spiraling of costs that could occur when people with high health care costs are separated into their own health plans).

In Alaska, we've been making great progress in pushing HB 218, legislation that would increase transparency around the use of specialty tiers. The bill is currently in the Senate Rules Committee and we are hoping it will pass before the session adjourns on Sunday.

We are also looking at this issue in Montana - the first step is documenting the extent to which people with MS are actually affected by this issue. Our Montana Government Relations Committee is very interested in learning more about this issue, so let us know if you have high drug costs.

The high cost of MS on the national stage

Check out this recent article on the Huffington Post about Mitt Romney's wife, who lives with MS. It's true that health insurance coverage varies widely in this country and it's incredibly difficult to get health insurance once someone is diagnosed with a disease like MS. For those who can afford it, health care is available. For everybody else, good luck! Luckily, the Affordable Care Act will change that, if it's upheld by the Supreme Court.

Is your party caucus in Washington accessible?

As you may have noticed, there’s no presidential primary in Washington State. Instead, voters state their preference for presidential candidates by attending their party caucuses.

On March 3, the Republicans held their party caucuses. Now, the Democrats are scheduled to hold their party caucuses – this coming Sunday, April 15.

If you attend the Democratic caucus, please fill out the survey below (also available on the DRW website ( www.disabilityrightswa.org ). If you attended the Republican caucus last month, it is not too late to turn in a completed survey.

The survey is a non-partisan effort to collect information that will help parties make their activities more accessible to voters with disabilities.

Thanks!


2012 Political Party Caucus Accessibility Survey

Survey purpose. We are seeking information about the accessibility of political party caucuses for party members with disabilities. We plan to provide the results of this survey to the political parties for their use in identifying and removing barriers to access and improve responses to requests for accommodation.

Survey sponsors. This survey is being conducted by Disability Rights Washington (DRW), Disability Business Technical Assistance Center Northwest (DBTAC Northwest), Governor’s Committee on Disability Issues and Employment (GCDE), and the State Independent Living Council (SILC).

Directions. If you wish to participate in this survey, simply attend the caucus for your preferred political party, and return the survey. You can print out this survey, fill it out, and mail it to DRW or you can e-mail it to DRW.

Please e-mail to: info@dr-wa.org Please put “Caucus Survey” in email subject line.

Please mail to: Disability Rights Washington 315 5th Avenue South # 850
Seattle, WA. 98104

Caucus locations and dates:
Saturday, March 3 - Republican Party caucus
For your caucus locations call (425) 460-0570, or visit:
http://wsrpcaucus.tumblr.com/

Sunday, April 15 - Democratic Party caucus
For your caucus locations call (206) 583-0664, or visit:
http://www.wa-democrats.org/content/precinct-caucuses
http://www.wa-democrats.org/caucuses

Survey. Please answer the questions below.

1. Information about access? Were you able to obtain the information you needed about the accessibility of the caucus location or how to get an accommodation? Example: Did the party provide a contact for requesting an accommodation? Was the website announcing the caucus accessible to you?

2. Transportation? Was it difficult to get to the caucus? Example: Was public transportation available to the site? Was assistance available to carpool? Was there sufficient accessible parking available?

3. Accessible route to the caucus? Could you get from parking to the caucus room without difficulty? Example: Were there steps? If you use a wheelchair, was there room to maneuver? Please identify any barriers.

4. Full Participation in caucus? Were you able to fully participate in the caucus? Please indicate any examples of actions that were taken that made the caucus more accessible, as well as barriers to access. Examples: Were accommodations provided so you could hear the discussion? Was written material in a format you could read? Were you able to participate in the delegate selection voting and discussion? If not, why not?

5. Participate in party activities? Are you able to participate in other party activities you heard about at the caucus? Examples: Will you be able to attend the party convention as a delegate?

6. Other concerns or positive comments? Please provide any additional information about the accessibility of the caucus you attended that you think is relevant.

Location and Date
Please identify the location of the caucus you attended:
Date of Caucus:

Optional
The following information will not be disclosed without your permission.

Your name:

If you wish to be provided with the results of this survey, please provide the following:

Your address:

Your email address:

Thank you for completing this survey.

For information about this survey, or to request accommodation or alternate formats, please visit our website www.disabilityrightswa.org or contact David Lord, Disability Rights Washington at davidl@dr-wa.org

Seattle Commission for People with Disabilities needs new members

The Seattle Commission for People with disAbilities is a sixteen-member body of sincere and energetic volunteers who use their collective capabilities to demonstrably improve the City of Seattle.

Mission
To create an inclusive Seattle by confronting barriers, raising awareness, and bridging communities.

Function
· Advise the Mayor, City Council, and city departments on ways to improve access to city resources
· Facilitate consumption of city services and improve opportunities for participation in civic life for people with disabilities
· Encourage understanding between and among the disability community and the larger Seattle community
· Advocate on behalf of people with disabilities in the larger Seattle community
· Provide technical and policy guidance on issues of disability and accessibility

Commissioners are expected to devote at minimum ten hours per month to Commission work, including monthly Commission meetings and active participation in at least one Committee. Applicants are encouraged to attend a Commission meeting to see how the Commission works and to meet the Commissioners. For more information, see the website: www.seattle.gov/disability

The Commission reflects the diversity of Seattle’s disability community and is committed to being a model of inclusion. To meet that goal, we strive to use the principals of universal design to inform our policies, practices, and procedures.

To apply, send an application, resume, and cover letter to Felicia Yearwood by April 26, 2012.

By Email: felicia.yearwood@seattle.gov or
By Fax: (206) 684-0332 or
By mail: Felicia Yearwood
Seattle Commission for People with disAbilities
810 Third Avenue, Suite 750
Seattle, WA 98104-1627

ANOTHER special session for the Washington legislature….

Is it acceptable in your job to miss deadlines, increase costs unnecessarily, and let down the people who pay your salary?  It’s not in mine either, but our legislators seem to think that is perfectly acceptable job performance.  Though we know that there are many representatives in our state government who believe in protecting our most vulnerable citizens, there are just as many who cling to ideology that tells our most vulnerable to fend for themselves. Below is a portion of an email that my representative, (11^th) Zack Hudgins, sent to his constituents on March 21^st summarizing the situation in Olympia right now.

“Because the House and Senate were unable to agree on a supplemental operating budget during regular session, we are currently in a 30 day special session. (As a reminder, there was a philosophical shift in the Senate during the last week of regular session, when three conservative Senators voted with Republicans to move a Republican written budget out of the Senate. This changed the dynamic of Majority Democrats in the House negotiating with Majority Democrats in the Senate, and pushed us into a difficult to resolve situation resulting in our special session.)

 Since the end of special session, Governor Gregoire has been meeting regularly with leaders from all four caucuses to iron out the major areas of difference between the budget approved by the House and the budget approved by the Senate (some are calling it the Republican plus three budget). In the midst of the negotiating meetings, the Senate Republican leaders released another budget proposal to the media. This new plan appears to be moving in the right direction for funding our public schools and higher ed system, (no cuts to education is the same position the Democrats have taken) but the Republican +3 budget contains some pretty major differences in other important areas.

Those differences are relatively small, dollar-wise, but represent very divergent values. If the newest Republican +3 proposal is passed as written, some of the most vulnerable people in our state will be devastated:

·         14,500 disabled people will lose their medical coverage

·         10,000 disabled people will lose their homes

·         3,350 low-income families will lose their only source of income during this recession

·         12,300 low-income families will lose their food assistance

I want to get the budget written and approved as soon as possible, but we can’t sacrifice our basic values for simple expediency. A budget isn’t just about numbers, it’s about people.”

Now is the time to contact your State legislators http://apps.leg.wa.gov/DistrictFinder/Default.aspx and let them know that a budget that will have a devastating effect on the MS Community is not what we sent them to Olympia for.  

Remember It’s Time for Action! Washington

Cheers! – Holly Hawker, Activism Committee Chair

Advocacy: speaking out on behalf of an individual or community

Advocacy takes place in many shapes, forms, and colors. Sometimes it's sticking up for yourself when your insurance company tries to deny your claim or your family members disagree with your decisions about how to take care of yourself. Sometimes you advocate for yourself, sometimes you advocate for others.

When you advocate for yourself and others at the same time, it's an especially powerful statement. Check out this recent letter to the editor about someone who is sticking up for herself and the MS community in voicing her concerns about recent proposals to cut Disability Lifeline - an important health care program for people living with MS.

How do you advocate? If you are looking for a way to advocate, check out this Action Alert that makes it easy to share your voice with elected officials.

Celebrate The Affordable Care Act!

As we enjoy the anniversary of the Affordable Care Act and everything it is doing for all Americans, we need to keep in mind that the Law is being challenged from all directions, and most importantly – in the Supreme Court!  As this hallowed body deliberates the legality of various components of the bill, the rest of us stand to lose so much.

It is my naïve, hopeful, and somewhat educated belief that the Affordable Care Act will be upheld by the Supreme Court. However, that will not protect the Law from members of Congress and State government (including Washington’s own Attorney General and candidate for Governor) who want to see the accomplishments of the Affordable Care Act repealed.

 Among all of the wonderful aspects of this law, the special significance to the MS community is the protection of people with pre-existing conditions, which will fully take effect in 2014. This tenant of the Affordable Care Act alone makes this legislation the most significant legislation for people with chronic disease that we have ever experienced.

So next time someone criticizes “Obamacare”, remind yourself and them, what this law means to the MS Community. We DO Care!

 Remember – It’s Time for Action! Washington

Cheers – Holly