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.
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www.nationalmssociety.org/InsideMS.asp
B Y
M A R T H A
J A B L O W
Photos by David Orndorf
“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
August–September 2006
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
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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 1-800-FIGHT-MS (1-800344-4867) to ask your chapter about
the Government Relations Committee
or GRC.
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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.
www.nationalmssociety.org/InsideMS.asp
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
August–September 2006
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.
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“THERE’S A DIRECT CORRELATION BETWEEN GRASSROOTS 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 73–27 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.
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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.
www.nationalmssociety.org/InsideMS.asp
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.
or “cost sharing” from individuals with
incomes of $14,700 or more or families
of four with $30,000 or more.
Federally mandated Medicaid changes
include new limits to eligibility for
Medicaid-paid long-term care.
■ 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.”
■ 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
August–September 2006
■ 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.
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.
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