State Success: Health Care Stories from California Bike MS

Issue or Challenge
With healthcare reform at the forefront of our most challenging advocacy priorities this year, the California chapters have been actively seeking real-life stories from our community about how the existing system impact them that we can share with policy makers statewide and nationally.

Bringing these stories to life with eloquent people who speak effectively has continued
to be a challenge for us. We decided to set up a video booth at the our recent Bike MS Waves to Wine ride and ask people about their experiences with MS, the ride, and their health care stories.

Status
We were able to garner several hours of footage of people telling about their experience with Bike MS: Waves to Wine and their health care stories. We are in the process of putting together a short video with some of the best snippets.

Watch the Video Here

Background
One of our key success factors in making this happen was a great team of coalition partners and volunteers to help us film participants. We partnered with Health Access California who also recruited a great team from a local advocacy group www.myamericanhealthcarestory.org/ who are go out and take videos of people’s health care stories.

We were cognizant that not everyone is in favor of healthcare reform. A key success factor for this was the team at http://www.myamericanhealthcarestories.org/ being very respectful to this concern didn’t project any biases whatsoever.

Another key success factor to this video was that it was initiated by the chapter’s Advocacy team and supported and funded by the Programs Team, Communications, and The Bike MS Team. While the footage from the event can be used by each group for each of their purposes, because we were the primarily sponsor of this program, we were able to ensure that the advocacy objectives were not forgotten. It will be helpful support for health care and other legislation.

HHS WebChat on New Health Care Reform Law and Medicare

Tune in to a WebChat tomorrow, Wednesday, May 26 at 11:00 a.m. EDT to learn about how the new health care reform law will impact Medicare. Expected to speak and answer questions on the WebChat are: Marilyn Tavenner, Acting Administrator and Chief Operating Officer of the Centers for Medicare & Medicaid Services and Caya Lewis, Chief of Staff for the Centers for Medicare & Medicaid Services.

To join the WebChat on Wednesday, click here. The Chat will be archived for those unable to join. If you have questions, send them to healthreform@hhs.gov and as many as possible will be answered during the WebChat. Questions will be taken live from twitter using @HHSGOV.

Join the Global Movement

World MS Day is this Wednesday, May 26th. MS societies throughout the world are banded together for World MS Day to raise awareness about multiple sclerosis (MS). To be part of the global movement to create a world free of MS and make an important impact locally, email your U.S. Senators and Representative today and urge them to support H.R. 4213. This legislation includes provisions important to people living with MS that help ensure access to necessary treatment and services.

Approximately 40% of people living with MS in the United States depend on public health insurance programs, like Medicare and Medicaid. H.R. 4213 will keep these programs strong by preventing an imminent, devastating 21.2% cut to doctors participating in Medicare. H.R. 4213 will also continue needed assistance to state-run Medicaid programs that have been strained due to reduced revenues and increased demands for Medicaid services during the recesssion.

Take action for World MS Day. Email your Senators and Representative today.

State Success: Arizona GRC Raises Money on Walk MS Team

Challenge: After hearing that the Arizona Chapter's Programs and Services budget would have to endure FY 2010 cuts, the Arizona Government Relations Committee put their heads together to brainstorm ways to help fundraise. Many ideas were thrown around. Phone banking to friends and family, hosting a fundraiser house party, and hosting an auction party all came up in conversations. The group decided that creating a Walk MS team would be an easy first step—Team GRC.

Status: Team GRC was added to the Walk MS team database and given a fundraising page at the end of August. Some members utilized Facebook and email to fundraise. Others asked friends and family to send checks to the Chapter office. To enhance our fundraising efforts, the team planned a “House Party.” The party was held in the Conference Center of the office building where the Chapter office is located.

For about six weeks leading up to the party, team members solicited in-kind donations from local businesses for the silent auction which would be a highlight of the party. A talented, local musician whose mother has MS, performed live music and kept the crowd entertained. The Chapter Care Manager donated her talent and skill for decorating and made the Conference Center feel warm and cozy with autumn themed decorations.

During the party 55 friends, family, colleagues, and associates of Team GRC spent the evening mingling, sharing stories, bidding on auction items, and enjoying good company. The evening was fun and successful.

More than $2,000 was raised for Team GRC's Walk MS team.A week and a half later, the team total surpassed $5,000 and Team GRC was awarded team T-shirts and a team tent for the Phoenix Walk MS. Even a month after the Walk MS, donations for Team GRC were still coming in. To date, Team GRC had raised more than $5,600. The team is extremely proud of the outcome of their efforts and look forward to next year.

Participating in Walk MS was the icing on the cake—walking 3 miles with almost 4,000 others impacted by multiple sclerosis.

Web Chat on How the Health Care Reform Law Will Benefit People Living With Disabilities

Today, Thursday, May 20th at 1:00 p.m. EDT, a WebChat is being held that will discuss how the new health care reform law will benefit people living with disabilities. The WebChat will be archieved on the website after the live broadcast.

Henry Claypool, the Director of the Office of Disability at the U.S. Department of Health and Human Services (HHS), Jeffrey Crowley, Senior Advisor on Disability Policy at the White House and Meena Seshamani, Deputy Director in the Office of Health Reform at HHS are expected to lead the WebChat and answer questions from the public. Be sure to tune in today to learn the many opportunities the new law presents for people living with MS and other chronic conditions and disabilities.

Go to this website to view the WebChat. Also, in the upper right hand portion of the website, you may sign up to receive Email Updates from HHS regarding the new health care reform law.

State Success: NJ Chapter Advocacy Network

Administrative Success: Division of Vocational Rehabilitation Services

The New Jersey Division of Vocational Rehabilitation Services (DVRS) provides services that enable individuals with disabilities to find jobs or keep their existing jobs. People with MS are a notable group who often require DVR services, but the division has not been meeting their needs. The Greater Delaware Valley Chapter in the south and the New Jersey Metro Chapter in the north both heard from people with MS that DVR did not return their calls and didn’t know how to work with more professionally skilled people with MS.

> Both chapters met with legislators, voiced their concerns and tried to meet with the Department of Labor. They secured an initial meeting, expressed their frustration and subsequently held a more detailed meeting with DVR staff.

> In preparing for the meeting, DVR uncovered the statistic that when clients didn’t have MS, their cases closed within three to six months. For people with MS, it took five to seven years.

> The meeting also highlighted to DVR staff the importance of further education about MS

Result: The findings surprised the DVR staff and helped bring changes to how they handle people with MS who use their service. As a result, both chapters will hold five in-service trainings at local DVR offices to engage in ongoing education with DVR. In general, people with MS under-utilize DVR services, and the chapters will continue to work to build trust with DVR and effect change for people with MS. This progress could only have happened through collaboration between the New Jersey Metro and Greater Delaware Valley chapters.

State Success: Greater Washington Urges Repeal of 24-Month Medicare Disability Waiting Period

In 2009, the Greater Washington Chapter determined to pass a memorial to Congress to repeal the 24-month Medicare waiting period for Social Security disability beneficiaries during the 2009 state legislative session.

Feb 5, 2009: The National MS Society Day of Activism was held. Nearly 100 MS activists from throughout Washington state came to the capitol in Olympia for legislative issue training and skills development. Wearing bright orange scarves, volunteers met with each member of the Washington State Legislature. Chapter Board members and MS activists met with the chairs of the Washington State House Health Care & Wellness Committee and the Senate Health & Long Term Care Committee to discuss the need for Congress to repeal the 24-month Medicare disability waiting period. Senator Karen Keiser, Chair of the Senate Health & Long Term Care Committee, agreed to sponsor the Senate Joint Memorial.

Feb 13: Senate Joint Memorial (SJM) 8013 was introduced by Sen. Karen Keiser with an additional nine cosponsors.

Feb 16: A hearing was held before the Senate Health & Long-Term Care Committee and four Society volunteers provided testimony in support of SJM 8013.

Feb 17: SJM 8013 unanimously passed the Senate Health & Long-Term Care Committee.

March 9: SJM 8013 passed the Washington State Senate unanimously by a vote of 46-0 (three members absent). Senator Keiser's floor speech referenced people living with chronic illness and disability and spoke specifically of people living with MS.

March 20: The House Health Care & Wellness Committee held a hearing on SJM 8013 with Chapter volunteer leaders again testifying in support.

March 26: SJM 8013 passed the House Health Care & Wellness Committee by a vote of 10-3.

April 9: SJM 8013 passed the Washington State House unanimously 98-0. Representative Eileen Cody, Chair of the House Health Care & Wellness Committee, spoke of her professional experience as an MS Rehabilitative Nurse. She made note of the fact that only 26% of state residents have private insurance during the 24-month Medicare disability waiting period and that thousands of lives are affected by lack of health insurance after they have qualified for SSDI. Representative Cody also cited the high incidence rate of MS in Washington state.

April 18: SJM 8013 was filed with the Washington State Secretary of State's Office. Following this, SJM 8013 was sent to President Barak Obama, Vice President Joseph Biden, Speaker Nancy Pelosi and the Washington State Congressional delegation of nine US House members and two US Senators.

Washington is the third state to pass such a memorial to Congress.