International Day of Persons with Disabilities

Do you know what today is? It's the International Day of Persons with Disabilities? See below for President Obama's proclamation recognizing the day. It's quite the prose, eh?

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Americans have always understood that each of us is entitled to a set of fundamental freedoms and protections under the law, and that when everyone gets a fair shot at opportunity, all of us do better. For more than two decades, our country has upheld those basic promises for persons with disabilities through the Americans with Disabilities Act -- a sweeping civil rights bill that moved our Nation forward in the journey to equality for all. And from making health care more affordable to ensuring new technologies are accessible, we have continued to build on that progress, guided by the belief that equal access and equal opportunity are common principles that unite us as one Nation.

On the 20th International Day of Persons with Disabilities, we reaffirm that the struggle to ensure the rights of every person does not end at our borders, but extends to every country and every community. It continues for the woman who is at greater risk of abuse because of a disability and for the child who is denied the chance to get an education because of the way he was born. It goes on for the 1 billion people with disabilities worldwide who all too often cannot attend school, find work, access medical care, or receive fair treatment. These injustices are an affront to our shared humanity -- which is why the United States has joined 153 other countries around the world in signing the Convention on the Rights of Persons with Disabilities, which calls on all nations to establish protections and liberties like those afforded under the Americans with Disabilities Act. While Americans with disabilities already enjoy these rights at home, they frequently face barriers when they travel, conduct business, study, or reside overseas. Ratifying the Convention in the Senate would reaffirm America's position as the global leader on disability rights and better position us to encourage progress toward inclusion, equal opportunity, full participation, independent living, and economic self-sufficiency for persons with disabilities worldwide.

We have come far in the long march to achieve equal opportunity for all. But even as we partner with countries across the globe in affirming universal human rights, we know our work will not be finished until the inherent dignity and worth of all persons with disabilities is guaranteed. Today, let us renew our commitment to meeting that challenge here in the United States, and let us redouble our efforts to build new paths to participation, empowerment, and progress around the world.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim December 3, 2012, as International Day of Persons with Disabilities. I call on all Americans to observe this day with appropriate ceremonies, activities, and programs.

IN WITNESS WHEREOF, I have hereunto set my hand this third day of December, in the year of our Lord two thousand twelve, and of the Independence of the United States of America the two hundred and thirty-seventh.

BARACK OBAMA

Have you had trouble voting because of your disability?

If so, your story needs to be heard! The National Council on Disability (NCD), in collaboration with the National Disability Rights Network (NDRN) and EIN SOF Communications, Inc., wants to hear about people with disabilities voting experiences during the upcoming 2012 General Election. Through a brief, open-ended questionnaire, NCD and our partners will collect information about voter’s experiences, including any physical, attitudinal, or other barriers they may have faced when attempting to exercise your constitutional right to vote. We will issue a report based on the findings of the questionnaire in early 2013. Please share this questionnaire broadly to your constituents, consumers, friends, etc.  To take or share the questionnaire, follow this link.  If you have any questions, please contact NDRN at 202-408-9514, ext 130.

It's scholarship time!

The Chapter is pleased to announce that we are now taking applications for our scholarship program. Details below:

Eligibility Criteria:

·         Must have multiple sclerosis or have a parent living with MS.

·         Plan to attend an accredited post-secondary school for the first time.

·         Live in the geographical area of Washington, Montana or Alaska.

·         Applicants must be a United States citizen or legal resident who plans to enroll in an undergraduate course of study at an accredited two-or four-year college, university or vocational-technical school located in the US.

·         Applicants must be enrolled in at least six credit hours per semester in course work leading to a degree, license or certificate.

Deadline:   Applications must be submitted online by January 15, 2013.

Scholarship amount:   $1,000 to $3,000, and will be applied to the 2013-2014 school year.

Application fee:   None

Applications & details available from:  Application must be completed online with a personal statement on how MS has impacted the applicant’s life. Applications are available at www.NationalMSSociety/Scholarship.

Criteria: All applicants must meet the basic eligibility criteria, fully complete the application and meet the deadline. Scholarship finalists will be selected on the basis of demonstrated financial need, academic record, leadership and participation in school or community activities, work experience, statement of educational and career goals, an outside appraisal, unusual personal or family circumstances and an essay on the impact of MS on their life. Decisions are not affected by a person's race, color, religion, gender, age or sexual orientation.  Award winners will receive notice in April 2013.

Questions: Please direct questions to Allison Stephens at 206-284-4254, ext. 40226 or  Allison.Stephens@nmss.org.

Medicaid expansion - what does it mean for Washington?

A recent news article lays out the choices that Washington is facing when it comes to Medicaid expansion - the opportunity for the state to use federal dollars to expand its Medicaid program to include childless adults. Previously, you had to be poor and something else to qualify for Medicaid - poor and disabled, poor and pregnant... Now, you just need to have a low-income to qualify for Medicaid if a state chooses to expand.

Washington's next Governor will have several choices to make as we determine how to move forward with health care reform in our state. The expansion of Medicaid is not the least among them.

To learn more, check out this article.

An opportunity to learn how to be a stronger advocate

An opportunity to take a class on advocacy came to me from one of our MS Activists, Veronica, who thought it may be of interest to others in the MS community. Great catch, Veronica and thanks for sharing! Here's the description of the class offered by North Seattle Community College.

Have you always wanted to advocate for change, but didn't know where to start? The policy making process seem a bit daunting? We're excited to present the free Political Empowerment Workshop, on Wednesday evenings starting November 13th. Velma Veloria, former State Representative, and Alice Tan Coil, educator/activist, will demystify all things political and help you recognize your leadership potential in this interactive class. For more details, click here.

To sign up for this FREE class, please call Continuing Education at 206-934-3705.

Another win for the MS community - this time in the courts

It's very difficult to sort through the news and find good things happening to the MS community. Sure, there are some stories about new drugs coming on the market, but for people with progressive MS or those unable to afford their drugs (and heck, for anyone with MS), it's still a tough go.

However, the National MS Society took to the courtroom for the latest advocacy battle to increase access to medical care for people with MS. And a settlement was just announced that allows people who don't show improvement in their health to still qualify for much needed Medicare services like skilled nursing and rehabilitation therapies. Formerly, the "improvement standard" required that individuals must show improvement to received care rather than just have a demonstrated need. This is incredibly significant for people with a progressive condition like MS or Alzheimer's.

This New York Times article has a good summary of the effort that led to this decision. It's something that the MS Activists everywhere can be proud of. In Washington, we are tackling a similar challenge to get rid of the improvement standard in private health insurance. Unfortunately, because of our state laws, we can only impact plans sold in the individual and small group markets, not the self insured market that large companies like Boeing or Microsoft use to provide health care to their employees. Stay tuned for more information about how you can help this effort.

How are you your own self-advocate?

Advocacy is all about sticking up for something or someone. My type of advocacy means sticking up for the MS community when laws are being debated that impact people with MS. It's systems advocacy. But another type of advocacy that can't be understated is self advocacy. The National MS Society has all sorts of resources to help you be a self advocate, your own advocate.

I frequently talk to people who have great success stories of self-advocacy. It's neat to hear how just a little bit of persistence can pay off. This article in the Wall Street Journal has some great suggestions as to how you can be a self-advocate for yourself if you are on Medicare.  Over half of people who appeal a denial for a Part B claim are successful. Pretty good odds as I see it.

If you have questions about self-advocacy, or want some tools to help you be the best self-advocate, give us a call: 1-800-344-4867.

How are you your own self-advocate?

Answer the call - become an MS Volunteer

Earlier this week I was honored to be invited to the Greater Northwest Chapter's Annual Meeting in Seattle. The positive and exciting information shared regarding the "state of the chapter" reinforces my belief that the National MS Society is a strong and efficient organization that is committed to supporting everyone living with MS and, ultimately, a life free of MS.

Awards were presented for Corporate Partner of the Year, Distinguished Service, MS Achievment, and close to my heart - Volunteer of the Year.  This year the award for Volunteer of the Year went to a dear friend of mine (and probably of a lot of you too) - Trevis Gleason. You may know Trevis from numerous speaking engagements and his blog for Everyday Health (http://www.everydayhealth.com/blog/trevis-life-with-multiple-sclerosis-ms/).

What you may not know is that Trevis is kind of considered the best "ask" in the business and he has been known to open a lot of wallets for MS with his efforts. This time when Trevis got up to accept his award and "ask" something of all of us, it wasn't to open our wallets, but to ask all of us to commit to promoting Volunteering with the MS Society. He asked us all to commit 20 minutes per week telling our story and encouraging as many people as we can to volunteer. You can do that - right?

There are so many different opportunities to contribute to the work of the National MS Society - participate in the Walk and BikeMS, work in the office a few hours per week, help with a support group (or start your own), provide peer support or, like I do, get involved in Advocacy. We need all the voices we can get contacting our federal, state, and local representatives to educate them on the needs of the MS Community. Join us in Olympia for the Day of Activism in January - our legislators pay attention to those orange scarves! http://www.nationalmssociety.org/chapters/was/volunteer/index.aspx

Please honor my friend Trevis and his wish to increase the volunteer efforts at the National MS Society. As someone famously said "it takes a village" and we ARE that village - 20 minutes is all we ask.

Hope to see you in Olympia! - Holly

Holly Hawker
Chair, Activism Committee

Now want to learn about your own health insurance plan?

Now that you know all about our country's health insurance system, you can get up to speed on what's actually covered in your health insurance plan.

For more information, check out this notice from Washington's Insurance Commissioner:

New health reform requirement helps consumers compare plans: A part of the federal Affordable Care Act taking effect next week requires all health plans to provide current and potential enrollees with new tools to help them understand what’s covered in the health plan and how much services will cost. Starting Sept.23, when a health plan renews or if consumers are searching for a new plan, the insurance company must provide a standard form explaining what it covers, how much specific benefits cost, and a standard glossary of health coverage and medical terms. The new Summary of Benefits form (http://cciio.cms.gov/resources/files/sbc-sample.pdf) will give:

·         Answers to important questions such as the overall deductible, if there’s an out-of-pocket limit, if clients need a referral to see a specialist and why these questions matter.

·         A list of common medical events and what clients will pay if they use a preferred provider or an out-of-network provider, and any limitations or exceptions.

·         Examples of what the plan covers and what it doesn’t cover.

·         A sample of typical coverage and costs for two conditions: Having a baby and managing type 2 diabetes.

Want to learn about health insurance, but don't know where to start?

Health care. Health insurance. Health reform. What do these words even mean? How is anyone ever supposed to learn about our health care system? I think we may have an answer.....read on.

The health care reform law is very complex and no one has the time or expertise to read through the whole law. It's actually a combination of two laws passed by Congress, so you'd have to read through this 974 page compilation of the two laws or review each of the 55 page and 2409 page bills to get through everything that we know as the Affordable Care Act.  Don't ask me how you add up a 55 page bill and a 2409 page bill to get to 974 pages - I'm not a math major.

And yet before you can even begin to understand the new law, you of course have to understand the system it was designed to change. So it's not easy, not simple, and not for the faint of heart. We've seen a few resources to help people understand the health care law (like this great Youtube video) but they don't go into many details to help your average consumer understand our current health insurance system.

I've found something that may answer some of your persistent questions: Health Insurance 101, a comprehensive, easy to read introduction to health insurance from Community Catalyst and the Center for Health Insurance Reforms at Georgetown University Health Policy Institute.

The website explains our current system and how the Affordable Care Act will change it. It has some disturbing information, especially the memo that details how insurance companies deliberately set out to exclude people with a chronic disease from their plans.

Now, the website only goes into the details of health insurance - it doesn't actually talk much at all about health care. But if we can understand how health care is paid for, hopefully we can get a better idea of how we can go about improving it.

Health Insurance 101. Spread the word.

When we unite, we can win.

This editorial, by two lead sponsors of the Americans with Disabilities Act, lays out a pretty convincing argument that the needs of people living with disabilities must be addressed in our national campaigns. As a huge voting bloc (57 million Americans live with a disability), the disability community should get a fair amount of attention from leading candidates for public office. However, for too long, we've been fairly un-organized and only after our narrow subset of issues. For people living with MS, that means particular attention to access to health care (like prescriptions, durable medical equpiment, physical therapy) and general accessibility within the community. Those may not be the major concerns of other people with a disability, who instead are passionate about education or other issues.

That's beginning to change. At the federal level, the disability community has long had a number of coalitions aimed at furthering the lives of people with disabilities, like the Consortium for Citizens with Disabilities. Here in Washington, the National MS Society teamed with other disability organizations like the Arc of Washington and the Directors of Disability Organizations to host a meeting of disability advocates on Friday, September 14. We met to see if we could start a disability coalition that would unite the concerns of all disability advocates in the state around a few important issues. If we could focus all of our united efforts on a common cause, I know we'd have a stronger impression on legislators than if we went at it alone. Stay tuned for more as this effort continues....

What do we want from our politicians?

Avid politicos likely heard mention of multiple sclerosis at both the recent Democratic and Republican National Conventions. With Ann Romney having MS, and Michelle Obama's father having MS, it's something that both major presidential candidates understand on a very personal basis. What does this mean for their political agendas? Great question. I think this recent guest commentary from Colorado raises some good points that I hope both campaigns think long and hard about.

An update on the generic only issue

This summer, the National MS Society has been closely watching the development of Washington Insurance Commissioner Mike Kreidler's rules that require insurers to offer brand name prescription drug coverage rather than just coverage of generic drugs. As people with MS know, there is no generic drug to treat MS (the brand name drugs on the market will have a "generic" biosimilar in the future due to the Affordable Care Act) and so an insurance policy without brand name drug coverage is just about meaningless to someone with MS.

We sent out an Action Alert on this issue and 137 people responded - an incredible response, but one that shows how important the issue is to people with MS. MS Activists also spoke at a recent hearing in Olympina on the issue.

Along with other chronic disease organizations like the American Cancer Society and the Arthritis Foundation, we submitted a statement to Commissioner Kreidler in support of the regulations. See that statement here.

Fore more information on the issue, see this blog post or this news article that mentions multiple sclerosis as a reason why the changes needs to be made.

Over 50 Organizations, including the National MS Society, unite for a presidential campaign forum on disabilities

Here's a press release I ran across that may interest many in the MS community:

The National Forum on Disability Issues, scheduled for September 28^th in Columbus, Ohio is set to provide presidential and state candidates with the opportunity to provide their positions on a wide variety of disability issues directly to the disability community.

The Forum has also officially launched their new, interactive website, www.nfdi.org and encourages Americans with disabilities, their families and caregivers, and the organizations that serve them to visit the site and attend the Forum.

This website provides important information for attendees, sponsors, media, and all Americans concerned with where the 2012 Presidential candidates stand on issues critical to the 57 million people with disabilities in this country. The forum will be held from 12:30pm- 3:30pm EST on September 28, 2012 and will feature time slots for the candidates to share their visions for the future of disability policy. President Barack Obama and presumptive Republican Presidential candidate Governor Mitt Romney, as well as U.S. Senator Sherrod Brown and Republican challenger Josh Mandel, the Ohio Senate candidates, have been invited.

“The National Forum on Disability Issues, the only national Presidential event to focus on issues specific to the disability community, is a great opportunity for both President Obama and Governor Romney to make their stances on disability issues clear. Over 14.7 million Americans with disabilities voted in the 2008 election. With 1 out of every 5 Americans living with a disability today, their voices and their votes will play a critical role in the 2012 election,” said Sue Hetrick, Director of Public Policy/The Ability Center and Coordinator of the Ohio Disability Vote Coalition. “We are thrilled to launch our new website, and encourage everyone to visit it, register to attend or watch the webcast, and add your support to our call for the Presidential campaigns to come to Ohio and speak about the issues that matter the most to the disability community.”

The forum is sponsored by over 50 organizations, including:

National

• American Association for People with Disabilities
• American Association on Health and Disability
• American Diabetes Association
• American Physical Therapy Association
• Amputee Coalition
• Association of Assistive Technology Act Program
• Association of University Centers on Disabilities
• Bender Consulting
• Caring Across Generations
• Consortium for Citizens with Disabilities (CCD)
• CSAVR
• Disability Rights Education and Defense Fund (DREDF)
• Easter Seals
• Epilepsy Foundation
• Hearing Loss Association of America
• Hemophilia Federation of America
• Jewish Federations of North America
• Jewish Funds for Justice
• Lutheran Services in America
• Mosaic
• National Association for Homecare and Hospice
• National Association of State Head Injury Administrators (NASHIA)
• National Association of States United for Aging and Disability
• National Center for Learning Disabilities
• National Council on Aging
• National Council on Independent Living
• National Diabetes Association
• National Disability Rights Network
• National Down Syndrome Society
• National Federation of the Blind
• National Multiple Sclerosis (MS) Society
• National Organization on Disability
• National Youth Leadership Network
• Paralyzed Veterans of American
• PHI National
• Self Advocates Becoming Empowered (SABE)
• Sibling Leadership Network
• The Access Center for Independent Living
• The Arc of the United States
• The Daniel Jordan Fiddle Foundation
• United Cerebral Palsy
• United Spinal Association
• Yoshiko Dart

State/Local

• CareSource
• Down Syndrome Association of Central Ohio
• Mary Cariola Children’s Center
• Ohio Abilities Network
• Ohio APSE
• Ohio Association of Goodwill Industries (OAGI)
• Ohio Disability Vote Coalition
• Ohio Down Syndrome Advocacy Network (ODAN)
• Ohio Olmstead Taskforce
• Ohio SILC
• The Arc of Ohio
• The Ohio State University Nisonger Center (UCEDD/LEND)
• University of Cincinnati UCEDD/LEND

For more information about the forum, please contact Sue Hetrick / 866-575-8055 / shetrick@abilitycenter.org.

For Sponsorship Information Contact: Kate Josephson / 202-776-0406 / kjosephson@ucp.org.

Want to know more about the new health care law?

Here's your opportunity. The US Department of Human & Health Services is hosting a teleconference to help you learn about www.HealthCare.gov - a great website to help you learn about the Affordable Care Act. Sign up for the August 21st webinar (11am Pacific time) here.

Other webinars can be found here, though most of them are targeted to specific regions.

If you want still more information about the Affordable Care Act, two great websites at the Kaiser Family Foundation and Families USA.

You can also learn about the National MS Society's efforts around health reform on our website.

Senator Murray raises awareness of MS

In a recent press conference discussing the debt, Senator Patty Murray (Wash.) talked of the struggles her family faced growing up because of the impact of her father’s MS.  Her stay-at-home mom had to not only be the caregiver to seven children, but not to her husband as well AND become the breadwinner. 

Senator Murray is a member of the MS Caucus and a supporter of many of the National MS Society's priority issues.

Interested in how the federal health care law will affect women?

"Health Reform Has Washington Women Covered" Workshops

There's a new health reform law that will give women better access to the health care you need at a price you can afford. You can learn more at an upcoming workshop in your community. You'll learn how the health reform law is already working in our state, the benefits & protectons on the way, and how a recent Supreme Court decision impacts the law. 

Seattle/Tacoma - Tuesday, July 10th, 6:30- 8:00 PM
Highline Community College, Building 8, Mt. Olympus Conference Room
South 240th Street & Pacific Highway South, Des Moines

RSVP: Maha Jahshan (maha@weareoneamerica.org, 206-452-8408)

Everett - Thursday, July 19th, 6:30- 8:00 PM 
Everett Community College, Gray Wolf Hall
2000 Tower Street, Everett
RSVP: Courtney Normand (courtney.normand@ppvotesnw.org, 425.870.9688 )

Yakima - Thursday, July 19th, 6:30- 8:00 PM
Planned Parenthood Health Center
1117 N. Tieton, Yakima

RSVP: Jen Ham (jen.ham@ppvotesnw.org, 509.834.3990) 

Please RSVP to join us, or to let us know you'll need a language interpreter, childcare, or disability accommodation.  Don't see your community on the list? Let us know and we may bring a future workshop to you.  

Looking forward to seeing you at a workshop soon! 

Emily at Northwest Health Law Advocates

Should health insurance plans be required to cover MS drugs?

Insurers in Washington are looking for ways to cut the cost of their individual plans. One option is to remove brand name drug coverage. Premera did that in its Lifewise catastrophic plan a few years ago, and when Regence and Group Health tried to counter by doing the same, the Insurance Commissioner's office stepped in to say that access to at least some brand name drugs must be available for those that need them.

To learn more about this trend, check out this recent article that cites the high cost of MS drugs as a reason why people need insurance coverage.

The National MS Society's position on the Supreme Court ruling

Holly's post yesterday is a great reminder of the importance of the Affordable Care Act for the MS community. Here's the Society's official position on the ruling:

The National Multiple Sclerosis Society supports the decision of the United States Supreme Court regarding the Patient Protection and Affordable Care Act. This ruling will have a significant, positive impact on many, including the millions of Americans affected by multiple sclerosis.

Below are some of the provisions of the law that the National MS Society believes will have the biggest impact on people with MS and their families:

• Prohibition of coverage denials based on pre-existing conditions: Too many people living with MS had been routinely denied insurance after receiving their diagnosis, preventing them from getting the care they need.
• Prohibition of lifetime limits: Routine, often costly care is needed to manage MS. This may cause those living with severe forms of the disease to reach their lifetime limit early in life. Elimination of that limit was critically important for continued care.
• Elimination of annual limits: Similar to ―lifetime limits, many patients reach their annual limit of coverage because of the cost of care for MS. These arbitrary limits should not prevent those in need from receiving care.
• Extension of parent’s insurance to 26: Many people with MS are diagnosed in their 20s and may still be in school or lacking a full time job to help pay for their care. This provision ensures that they can continue coverage under their parent’s policy.
• Closing the Medicare Part D Coverage Gap: Disease Modifying Therapies for someone with MS can cost as much as $4,000 per month, which is out of reach for the average American; therefore, gradually closing the coverage gap has provided financial relief for those who depend on Medicare for prescription coverage.
• Pathway for Biosimilars: The law provides a pathway for biosimilars which provides some hope of lower cost therapies in the future. The FDA had recently indicated it would not have pursued this pathway without the legislative mandate therefore, it will continue to be developed--which is good news for anyone who uses biologic therapies.

Background

Although many people with MS have health care coverage, 70% of those with health insurance still struggle with the cost of health care and 30% are forced to spend less on food, heat, utilities and other necessities in order to afford their health care. Those without access to private insurance and who do not qualify for public programs are often priced out of the market, as individual plans can be prohibitively expensive.

On average, the financial impact of living with MS is $69,000 per year, and more than half of this amount consists of direct health care costs. Unlike some other diseases, MS is a lifelong illness—typically diagnosed between the ages of 20 and 30s - prime career and family building years. Because of the high cost and complications that can be associated with the disease, the National MS Society has long supported many of the policies that were included in the law just upheld by the Supreme Court.

With guidance of people living with MS, the Society adopted a set of National Health Care Reform Principles several years ago and, as an organization. Our approach is to support legislation that is in line with those principles. We intend to continue to work with Congress and the Administration in pursuit of public policies that address the needs of those impacted by MS.

The Supreme Court got it right this time!

Thank you Supreme Court! The Affordable Care Act is safe.

I don't know about you, but this morning was very emotional for me. I was somewhat prepared for the terrible news that the mandate was overturned (and the law gutted), but the shock and excitement that (almost) the entire law was upheld completely overwhelmed me. As activists we have supported Congress and our President in their effort to enact this monumental bill and desperately hoped for this outcome.

Although the States may opt out of the Medicaid requirement, Governor Gregoire has committed to continuing the process to help insure 500,000 Washingtonians through the expanded Medicaid   program. Jay Inslee has been an outspoken supporter of this law. Even Attorney General McKenna (who joined the lawsuit that got us to this point) expressed support for most aspects of the law in an interview with Robert Mak (KING5) today - although his support of the Medicaid expansion is questionable "....as long as the State can afford it". Governor Gregoire said that for the first few years, the federal government pays 100% of the Medicaid expansion, then 95%, then 90% going forward. I think we can come up with 10% of the cost of insuring an additional 500,000 citizens in our state.

Congratulations to our entire community!

Enjoy what this day means...

Cheers - Holly Hawker

Anniversary of the Olmstead Decision

While I don't usually just like to cut and paste from other sites, I thought it'd be worthwhile to share this press release from the White House about the anniversary of the Olmstead decision - a monumental Supreme Court decision that affirmed the rights of people with disabilities to live in their own home. It's a good overview of what the federal government is doing to promote the needs of people with disabilities.

Olmstead Anniversary
Please see announcement below from the White House as we observe the Olmstead anniversary.
THE WHITE HOUSE
Office of the Press Secretary
FOR IMMEDIATE RELEASE
June 22, 2012
On Anniversary of Olmstead, Obama Administration Reaffirms Commitment to Assist Americans with Disabilities
On June 22, 1999, the Supreme Court ruled in Olmstead v. L.C. that the unjustified institutional isolation of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA).  The Obama Administration has made significant progress continuing to enforce Olmstead as well as more broadly helping to level the playing field for people with disabilities.
“Olmstead affirmed the rights of Americans with disabilities to live in their communities,” said President Obama.  “As we mark the anniversary of this historic civil rights decision, we reaffirm our commitment to fighting discrimination, and to addressing the needs and concerns of those living with disabilities.”
In April of this year, the Department of Health and Human Services (HHS) announced the creation (http://www.hhs.gov/news/press/2012pres/04/20120416a.html)  of the Administration for Community Living (http://www.hhs.gov/acl/)  (ACL), which brings together key HHS organizations and offices dedicated to improving the lives of those with functional  needs into one coordinated, focused and stronger entity.  ACL combined the Administration on Aging, the Office on Disability and the Administration on Developmental Disabilities into a single agency that supports both cross-cutting initiatives and efforts focused on the unique needs of individual groups, such as children with developmental disabilities or seniors with dementia. This agency will work on increasing access to community supports and achieving full community participation for people with disabilities and seniors.
HHS also has worked closely with the Department of Housing and Urban Development (HUD) to develop and subsidize rental housing for very low-income adults with disabilities and implement the new Section 811 Project Rental Assistance Program, which will assist extremely low-income adults with disabilities in accessing integrated affordable housing.  Last month, HUD announced (http://portal.hud.gov/hudportal/HUD?src=/press/press_releases_media_advisories/2012/HUDNo.12-084) a new $85 million funding opportunity under the Section 811 program for state housing agencies that meet certain eligibility criteria, including having a partnership with a state health and human services agency and Medicaid agency, to provide essential support and services  that help people live in integrated settings in the community.  This funding opportunity works to align critical health and housing services and aims to assure integration by promoting Medicaid efforts to serve people in the most appropriate integrated setting.
The Department of Justice also continues to enforce the ADA and Olmstead.  Over the last three years, the Civil Rights Division at the Department has been involved in more than 40 Olmstead matters in 25 states.   Recently, in Virginia, the Department entered into a landmark settlement agreement (http://www.justice.gov/opa/pr/2012/January/12-crt-111.html) with the Commonwealth, which will shift Virginia’s developmental disabilities system from one heavily reliant on large, state-run institutions to one focused on safe, individualized, and community-based services that promote integration, independence and full participation by people with disabilities in community life. The agreement expands and strengthens every aspect of the Commonwealth’s system of serving people with intellectual and developmental disabilities in integrated settings, and it does so through a number of services and supports.  The Department has a website (http://www.ada.gov/olmstead/) dedicated to Olmstead enforcement, which includes links to settlements, briefs, findings letters, and other materials.

What if you bought a health insurance plan and it only covered generic drugs?

Seattle Times columnist Denny Westneat wrote a piece this weekend on the impact of a generic-only health insurance plan on a gentleman recently diagnosed with cancer. The column describes an attempt this past spring by Lifewise (a subsidary of Premera) to drop non-generic prescription drug coverage for its individual plan members. The Office of the Insurance Commissioner (OIC) and groups like the National MS Society and the American Cancer Society have been fighting this change though the insurers are pushing hard to sell health insurance plans with only minimal coverage. The big question - where do you draw the line between selling a comprehensive health insurance plan and an affordable health insurance plan? The National MS Society and other chronic disease groups believe a health insurance plan should cover your health care needs, no matter what condition you have. Some insurance companies just want to sell cheap insurance plans. What should we allow in the marketplace?

And why is non-profit advocacy so important???

Lots of good stuff on the internets these days. Check out this article from a former Capitol Hill staffer and patient advocate on why we need to be doing what we are doing: Don't give up on advocacy

He points to some pretty strong evidence as to the power of non-profit advocacy - at least 28 states have smoking bans in place. Before the American Cancer Society took up this banner, only 1 state had such a law. Pretty cool, eh?

What makes a good advocate?

Here's a great blog post from an MS Activist about how to do advocacy well: Effective Advocacy is Personal.

I really like how the author writes about the power of a personal story. It's so true that a legislator can oppose you on policy grounds, but they can't oppose your story. You may not win every time, but if you share your story, you can make a personal connection with that person, and over time, you'll win more often than you lose.

One of the reasons I came to work for the National MS Society is because of the opportunity I have here to tell stories that need to be told. When I was working in Olympia for a state senator, so rarely would we actually talk to someone impacted by the policies we were making. We'd talk to lobbyists, business leaders, executives, but rarely would we actually talk to the people whose lives were going to change because of these decisions that would be made. Imagine how different the world would be if people with MS had a seat at the table whenever laws were made that impact their lives. It's possible - we can do that. We just have to work together.

What makes a community accessible to all? We need your input...

CREATING A

WATERFRONT FOR ALL

The City of Seattle and its Waterfront Program are committed to creating a waterfront for all that reconnects the city to its waterfront and improves access and mobility for everyone. Join Waterfront Program staff and the Seattle Commission for People with disAbilities for a roundtable discussion of critical issues and priorities to consider when designing for all levels of mobility.

Accessibility Discussion

Wednesday, June 20, 2012

3:30 p.m.

2100 Building

2100 24th Ave. S., Seattle

ASL interpretation will be provided.

Please RSVP or request other accommodations by June 15

rsvp@waterfrontseattle.org or call 206-499-8040.

The 2100 Building is an accessible venue located on 24th Ave. S. between S. Hill St. and S. Walker St., one block east of Rainier Ave. S. It is served by the 7, 9, 34, 42 and 48 buses and is about half a mile from the Mt. Baker light rail station. Parking is available on the street and in a street level garage accessed from the alley.

Who benefits from health care reform in Washington?

Washiington's Office of the Insurance Commissioner (OIC) asked this question and they have a pretty good analysis that describes the number of people, county-by-county, who will benefit from the Affordable Care Act.

The OIC report shows that people in every corner of the state will benefit. Take a look at the report to see how many of your neighbors will have access to health insurance in 2014.

The Presidential Campaign and MS

Both candidates in the race to be our next president have intimate connections with multiple sclerosis. Mitt Romney's wife, Ann was diagnosed with MS in the mid-90's and served on the board of a National MS Society chapter in Massachusetts. Barack Obama's father-in-law also lived with MS, and his wife Michelle has talked publicly about the impact that had on her life.

Now, we get a campaign video talking about the impact that MS had on the Romney family. Check it out here:



And for some good perspectives within the MS community on the overall impact of the experiences, visit our friend Trevis Gleason's blog post on this topic.

Political debates of the future

As a hub for technolology, it makes sense that Seattle would be on the cutting edge of innovative ways to engage the public in the political process. One exciting opportunity is a gubernatorial debate scheduled for October 6 in Seattle, being organized as part of the Seattle Center's Next 50 celebration. The debate will have intense audience participation and allow folks both in the audience and those watching the debate online or on TV to participate as well via text messaging and Twitter.

Learn more at http://techpresident.com/news/22199/backchannel-beyond-media-spectacles-debates-conversations

Mark your calendars for October 6. Stay tuned for more information. And thanks for our friends at AARP for letting us know about this opportunity.

From the MS Foundation: MS Activists say it in their own words

The Multiple Sclerosis Foundation sends out a periodic Movers and Shakers Advocacy Newsletter - similar to the National MS Society's Action Alerts. Movers and Shakers features great information about activists within the MS community and the latest edition happened to feature one of our own - Dorthann Cloud from Bellingham. Here's what it says :

MS ADVOCACY 101  ​- Become a Squeaky Wheel

Our MS Advocate Spotlight this month is Dorthann Cloud. She has shared how to not only go to your state capitol on the day common people can present their arguments for a Bill they support, but how to also advocate to your Representatives almost every day. To find a current Bill or Legislation to support you can do research at http://thomas.loc.gov/home/thomas.php

There are also toll-free numbers in each state that you can call and ask for your Representative to support a Bill that affects you or those you care about. The best way to discover how to contact your Representatives is through a government run website: http://www.contactingthecongress.org/. When you click on your state (or fill out their form) you will be directed to names, numbers and links for contact forms. The contact form allows you up to 10,000 words in most cases. Be ready and precise; have a Bill name and number (if applicable), and any references, examples, that you feel tell your point of view.

If you attend a day-to-the-capitol event and are to have, “face time,” Dorthann has created a quick guide to make the most of your limited audience (ten minutes per interview):

►​What are your “key messages,” the three or four things it’s most important for these people to know from you

​●    Legislators are under enormous pressure to craft a budget that meets all needs when revenue is so low, so they need encouragement – why your needs count; examples, figures for example.

●    Remind them MS – and other chronic health issues – affect their constituents who vote.

●    Supporting healthcare has never been more important as the continuing recession has swept so many into unemployment and stripped their insurance.

●    Thank your audience for being involved and committed to your cause and remind them how much you need their support for success.

 ►Ten minutes goes by quickly, and you need to have time to: 1) set up what you’re going to say (who you are there on behalf of – perhaps MSers of America); 2) share the summaries and arguments you’ve pre-planned, and then 3) wrap up with a reminder of the “take home messages.” 

ADVOCACY WORKS! - Born Advocate Now Uses Her Superpowers for MS 

Dorthann Cloud was employed at Western Washington University for 11 years. During that time she was always very involved in her union’s activities; and in Lobbying for her rights within that union. Today, retired with MS, she uses what she learned to advocate for MS. Dorthann explains, “One thing the Washington Federation of State Employees Union did was sponsor lobbying training. I benefited greatly from this training.”

Yes, she did. Later, using that knowledge of how to convey what she wants to say quickly and concisely, Dorthann made herself heard during a Lobby Day trip for MS in her state.

She tells the story: “Monday, January 30th, I was in Olympia for MS Lobby Day –  a busy day for us, and for our legislators. My fellow MS lobby crew and I were at the Capitol at 8:00 a.m. for training. Our job is to make a very visible impression.”

Dr. Eugene May, chair of the Government Relations Committee for NMSS, spoke to the group about etiquette and how to organize their priority issues: stop healthcare cuts, create consumer friendly health insurance exchanges, and lower out-of-pocket costs for people with significant healthcare needs. Dorthann says specifically they were there to, “ask our representatives to support HB 2435 / SB 6241 which places a cap on all out-of-pocket medical expenses.”

Thanks to her past trips to the Capitol as a WWU union employee, she had a relationship with Senator Kevin Ranker (D-40th).  Not only did he recognize her, but asked where she’d been. Dorthann explained how MS had changed her life – and so many others she’s met – and urged him to support her and her group. He listened and read a letter with figures facing people with insurance caps and chronic illness. So she was elated when he looked up, and assured her he would support the Bill. That was just the beginning of her long, but fruitful day.

Dorthann knows, from her own experience, that each of us can do what she’s done, even without a long professional relationship with our Senator, or traveling anywhere.

She wanted to share, “The idea is to be a visible squeaky wheel. Quantity matters too; it reminds legislators of how many us (constituents and voters) there are.  There are toll-free numbers you can call Monday through Friday, 8:00 a.m. to 8:00 p.m., to let our reps know how we stand on legislation. Or just to make a statement like: ‘Please don't eliminate basic health coverage. It affects your most vulnerable constituents’ – use the word constituents, it is effective! 

“There are thousands of bills introduced each legislative session, but only a few hundred make it through each time. This is why we have to keep being a visible reminder, be it via phone calls, emails, letters, or personal visits to the Capitol. There is a lot of competition for legislators’ time and interest – we must be ever-present. I am truly grateful I can do something to help us all out."

Legislative Update - Dodged the bullet this time...and had some wins!

As you know, the Legislature finished up a few weeks ago, and the results were a bit surprising given the place we started in December.  Amazingly, after some creative accounting, almost all of our priority programs were saved! This is partly due to the improved economy, decreased caseloads, and accounting maneuvers (whatever that means).  

We also saw great success with the passage of the Health Exchange bill (HB 2319)!  This is one more step in the implementation of the Affordable Care Act.  A very exciting development is the inclusion of a trigger that will allow the Insurance Commissioner’s office to address the specialty tier issue if it causes adverse selection in the exchanges. Listing critical drugs in the “specialty” tier frequently puts these necessary medications out of reach of many people living with MS. If you have a story about your experience with “specialty” tiers, please contact the chapter to share your story so that we can show our representatives that their constituents are suffering due to this unfair practice.

http://www.nationalmssociety.org/chapters/was/advocacy/tell-us-your-story/index.aspx

The Greater NW Chapter has been included in a task force contributing to establishing the minimum standards for the state Health Exchange network. This is a significant place at the table for the MS Community, as we are communicating the needs of the chronic disease community and establishing a consumer centric Health Exchange that will serve the needs of the consumers who truly need this service.

Over the last several months, we have joined forces with coalitions, such as Healthy Washington and the Long Term Care group/Aging Caucus, to help get our message across to our legislature. The passage of the Health Exchange bill proves we are definitely more effective when we join forces with other groups.  

We are thankful that our programs were “saved”, but after all of the cuts over the last several sessions, there isn’t much left to save. Now we need to focus on improving our safety net programs so that the needs of our community are served. Keep up the pressure on your state Legislators (http://apps.leg.wa.gov/DistrictFinder/Default.aspx ) to protect and improve Basic Health, Disability Lifeline, and Medicaid so that that people living with MS will have access to the services so desperately needed.

 It’s Time for Action! Washington

Cheers! – Holly Hawker

Chair, Activism Committee
Greater NW Chapter, National MS Society

More on transportation policy - take a survey and inform transportation policy

Improve Transportation for People with Disabilities by Participating in a Short Survey

The Disability Rights Education & Defense Fund (DREDF) is conducting research on what factors are most important to riders with disabilities when deciding which transit mode to use.

Participate in the survey at: http://www.surveygizmo.com/s3/882523/TransitChoices.

The confidential survey results will be part of a national study called Transit Cooperative Research Project B-40: Strategy Guide to Enable and Promote the Use of Fixed-Route Transit by People with Disabilities. The goal is to develop strategies to improve bus and train systems for people with disabilities. DREDF's research partners are TranSystems Corporation, The Collaborative, and KFH Group.

Please take the survey, and encourage others to do so!  

Email Marilyn Golden with any questions.