16 InsideMS

Transcription

1 MS Left to right: Patti Kraemer, Kim Leamy, Jessica Baumgartner, Scott Hanson, Lori Falk, and Jeffrey Gingold, six members of the Wisconsin Chapter s GRC. 16 InsideMS

2 B Y M A R T H A J A B L O W Engaging in advocacy gives me optimism, said Scott Hanson, who has lived with MS for eight years. My doctor believes that I m actually getting healthier with age, and I think that s because I m involved in fighting for myself and others. Hanson once organized hotel workers and now works as a researcher with a service workers union in Madison, Wisconsin. He puts his labor organizing experience to good use as an activist with the Wisconsin Chapter of the National MS Society promoting public policies that help people with MS. People are motivated by hope that they can cause change, he said. I think one of the most important things a chapter can do is survey the people with MS in their area and learn about their lives. What do they need? Then we need to bring our concerns to the decision makers. If we bring enough people, if we can fill up a parking lot and overflow the sidewalks, that gets attention. If we can fill up a legislator s office, it s an opportunity to say, This is Photos by David Orndorf what we need. So I put a lot into urging people to take a day off from work and come with us to the state capitol on our lobby day. It feels really, really good to stand with others who have MS and their friends and relatives. Rank and file make the difference Every chapter of the National MS Society has a Government Relations Committee, or GRC, to organize MS activists. Wisconsin, the home of 10,000 people with MS, has one of the most active GRCs in the country. For four years, it has aggressively sought out state legislators who have a relative or neighbor with MS and sent volunteers to talk to them about policies that affect everyone facing the disease. That brings our issues home to them, explained Colleen Kalt, Wisconsin August September 2006 InsideMS 17

3 Chapter president. Our efforts are totally grassroots. Our volunteers make phone calls, write letters, and visit elected officials. We have an annual Legislative Affairs Day at the state capitol and invite everyone from local officials to state legislators to become educated about what people with MS need. People talk about everything from employment to prescription drug coverage to sidewalk curb cuts. Just as it is in Washington, the most important person is always the person who has MS. Someone telling a personal story gets a legislator to sit up and pay attention. People with MS need to know that they are the best fighters for services and funding, Kalt continued. We have people with MS talking about public policy to other people with MS. They inspire others to get involved. Our chapter also made an investment by hiring a staff manager for our advocacy program. One of the Wisconsin GRC s latest achievements is the MS screening questionnaire in the state s Well Woman Program. Women who cannot afford health care come to this preventive care program for many reasons, such as having mammography. Thanks to the chapter s activists, they are all asked to fill out a questionnaire on neurological symptoms. If a woman s responses indicate a possibility PEOPLE WITH MS NEED TO KNOW THAT THEY ARE THE BEST FIGHTERS FOR SERVICES AND FUNDING... G E T I N V O LV E D Go to nationalmssociety.org, click on Government Affairs/Advocacy in the menu along the top of the screen, to learn about the MS Action Alert Network and other ways to make your views known. Read up on national and local issues by visiting your chapter s Advocacy section. Go to nationalmssociety. org and click Find Your Chapter in the top menu bar. You ll find Advocacy on your chapter Web site s top menu bar. Or call FIGHT-MS ( ) to ask your chapter about the Government Relations Committee or GRC. of MS, she is referred to a volunteer neurologist who follows up. Thanks again to the activists, subsidized MS diagnostic services are available for those in need. A voluntary check-off for MS services on Wisconsin income tax forms is another feather in the activists collective cap. Beginning next year, taxpayers will be able to donate to a fund that helps people with MS remain in their homes by defraying the costs of ramps, durable medical equipment, vehicle modification, respite care, and more. The check-off box also creates awareness of MS among the general tax-paying public. This year the activists are campaigning for a state tax credit to compensate spouses or family members whose only job is providing home care to someone with MS. 18 InsideMS

4 sites are good places to learn about deadlines and regulations. Or phone your local election board. You might also ask when a sample ballot will be available so you can review the candidates and the propositions before you re actually in a voting booth. GRC members meet with State Senator Alberta Darling (2nd from left), the Wisconsin Chapter s 2005 Advocate of the Year. It s all about participation: STEP ONE, register and vote Those who don t vote silence themselves. The National Voter Registration Act allows a U.S. citizen (by birth or naturalization) 18 or older to register when applying for or renewing a driver s license. It also requires virtually all government offices providing services to people with disabilities to make voter registration applications available. In many locations, applications can be picked up at post offices or public libraries. Pennsylvania even makes applications available at state liquor stores. Deadlines vary among states and counties, but in almost all jurisdictions, you must be registered several weeks before election day. If you ve moved, you ll need to re-register. For primary elections in most states, you must be registered with a political party in order to vote on that party s candidates. State government Web About Absentee Ballots Absentee ballots should not be used because a polling place is not accessible. People with disabilities deserve to participate with everyone else. Once you re registered, call ahead to verify accessibility. The Help America Vote Act (HAVA), signed into law on October 29, 2002, requires every polling place to have at least one accessible voting booth. But if for some reason your assigned polling place won t work for you, request an alternative place. If you need election day transportation and no friend or relative will be available, call your political party. (But do so in advance.) If you anticipate trouble reading fine print or handling your state s voting machine, remember it s legal to bring someone into the booth to help you. Absentee ballots are an option if you absolutely can t make it to the polls. But in many jurisdictions they are not counted if there are fewer absentee ballots than the difference in the vote between the two leading candidates. If you do need to vote by absentee ballot, check the deadlines with your state or local election board to be sure you apply early enough to receive a ballot and mail it back by the deadline, which is usually several days before election day. August September 2006 InsideMS 19

5 THERE S A DIRECT CORRELATION BETWEEN GRASS- ROOTS ACTIVISTS AND GETTING LEGISLATION PASSED. It s all about participation: STEP TWO, activism beyond the ballot Citizen participation reaches far beyond the voting booth. Perhaps no one knows that better than Society activists. In 2004, they persuaded Congress to include more than $100 million in the federal budget to study MS at the National Institutes of Health (NIH). In 2006, NIH funding was again at issue. Because people with MS advocated for it, we won a Senate victory to put $7 billion into health-care spending and NIH research funding, said Shawn O Neail, director of Federal Government Relations for the Society. We didn t expect that many senators to support us, but they did. There s a direct correlation between grassroots activists and getting legislation passed. At press time, the House and Senate had not agreed on the final federal budget, and O Neail pointed out that advocacy is a game that never ends: The budget is a perfect example. We have to push and push again. The power of citizen advocacy When O Neail calls on federal legislators, they pay much more attention if a constituent with MS goes with him. It s important for legislators to hear personal stories. They learn how legislation or funding affects an individual s life. You don t have to be an expert on government issues or budgets to do this, he said. In fact, he pointed out, citizen advocacy has been at the heart of every great cause in our history. For well over 100 years, women did not have the right to vote. Women s suffrage, passed into law in 1920 as Amendment XIX to the Constitution, was the culmination of a movement that involved two generations of activists. Elizabeth Cady Stanton and Susan B. Anthony each devoted 50 years to this cause. As civil rights for African-Americans and AIDS activism have shown, people can work together to change things for themselves and others. O Neail believes the same can be done in the MS community. In addition to working with your Society chapter, you can join health-care coalitions, O Neail suggested. Increasingly, the Society is involved with coalitions such as Research! America, which links more than 500 institutions, organizations, and corporations to promote and inform the public and lawmakers about the benefits of medical research. The more numbers, the more contacts these groups have, the more leverage for your particular issue, O Neail suggested. Using the big picture approach can mean greater access to legislators. He calls this the raise-all-boats approach: A rising tide lifts all the boats, not just one. Martha Jablow is a frequent contributor to this magazine. 20 InsideMS

6 A CALL FOR ACTION: Medicaid changes in your state Last February, President Bush signed the Deficit Reduction Act of 2005 (DRA) which will save the federal government $5 billion over five years by reducing medical assistance to people with low incomes. Some of the changes are spelled out in federal law. Many others are determined state by state. Federally mandated Medicaid changes include new limits to eligibility for Medicaid-paid long-term care. A five-year look back period. Individuals may not transfer assets to others in order to be poor enough to qualify for long-term care unless the transfer took place at least five years before long-term care begins. The previous look back period was three years. Tighter requirements for a long-term care hardship waiver. No coverage of long-term care for individuals with home equity of $500,000 or more. (States have the option to raise this limit to $750,000.) State controlled Medicaid options include: States may charge Medicaid premiums to individuals who have an income of at least $14,700 or families of four with at least $30,000. States may enforce this by terminating the enrollment of non-payers. States may require Medicaid co-pays or cost sharing from individuals with incomes of $14,700 or more or families of four with $30,000 or more. States may create cost-sharing tiers for drug coverage, with lowest co-pays for generics, higher for preferred brand drugs, and highest for non- preferred brand drugs. States may create tiered benefit packages with different levels of health-care coverage, and may impose different limits in different areas of the state. Note: People with disabilities, people eligible for both Medicaid and Medicare, and people who live in institutions are exempt from tiered health-care benefit packages. Trimming federal deficits by imposing hardships on people who struggle every day with chronic disease and financial problems is unacceptable, said Joyce Nelson, president and CEO of the Society. Chapter activists will strongly oppose attempts by states to impose these burdens. Limited demonstration projects DRA also offers demonstration projects to selected states for testing health savings accounts and alternatives to nursing home care. States may also compete for Money Follows the Person programs, which provide vouchers for home services rather than payments to institutions. What s at stake where you live? Call your chapter. August September 2006 InsideMS 21