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Stroke Advocacy Network Newsletter

JULY 2013

Photo of man using laptopReturning to Work After a Stroke

Did you know that the federal government provides a wide range of resources on returning to work after surviving a stroke?

These resources include:

All of this and more is available now through the Job Accommodation Network (JAN). This program, which is run by the U.S. Department of Labor, is free and confidential.

If you weren’t aware of these materials and services before, you’re not alone! That’s why Senator Mark Kirk (R-IL) has introduced legislation to change that. His bill, S 1026, seeks to enhance awareness of these programs and return-to-work assistance among employers and their stroke survivor employees. As a stroke survivor himself, Sen. Kirk has a clear understanding of the challenges survivors face in re-entering and functioning in the workplace. Once this legislation is enacted, we expect the federal government to take concrete steps to supplement the existing resources at JAN and to better organize and market what is available. National Stroke Association will work with Sen. Kirk and the Department of Labor to make the perspective of stroke survivors and their caregivers known.

However, S 1026 faces a steep road to passage. The only way we will achieve this goal is through your efforts to gain legislative support for the bill. How can you help? Take a moment today to contact your members of Congress and ask them to co-sponsor S 1026. We’ve already written a message you can send to them, so it only requires the click of a button to take action! The more supporters the bill has, the more able we are to help Sen. Kirk make this proposal a reality. If you’re eager to help stroke survivors get back to work, now’s the time to act!

Take action today on this important issue



Return to Work

State Legislature Watch

Make a Difference at Home

Virtual Lobby Days Success

Careliving Community

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Collage of license platesState Legislature Watch

In January, the Stroke Advocacy Network unveiled the State Advocacy Action Center to give you the tools and information you need to make a difference for stroke survivors in your state. It’s been a big success! The State Advocacy Action Center has tracked nearly 100 stroke-related bills and resolutions in 33 states this year.

We track this legislation so we can let our network members know what’s happening in their state and provide them with ways to take action on those issues. If you’re not a Stroke Advocacy Network member, join today! Thanks to our many network members who took action and made a difference in their states this year! Some of the state-level issues that members took action on include:

Expanding Specialized Stroke Care Using Telemedicine

Telemedicine services allow healthcare professionals with training in stroke to treat patients in off-site locations, bringing specialized stroke care to areas that don’t currently benefit from those services. We tracked 56 telemedicine bills in 28 states. Network members sent 1,956 messages to state legislators urging them to support increased access to telemedicine services. And so far, 12 telemedicine bills have been signed into law! These new laws were passed in Arizona, Colorado, Indiana, Maryland, Mississippi, Montana, New Mexico, Nevada and Vermont.

Improving Stroke Response and Treatment

A statewide stroke system of care includes many elements designed to decrease the time it takes to diagnose a stroke patient and transport that patient to an appropriate healthcare facility for treatment. These elements include designating facilities where the staff has specialized stroke training and educating emergency medical personnel about stroke so patients can be diagnosed more quickly, among others. We tracked 20 bills related to stroke systems of care in 11 states. Network members sent 509 messages to state legislators asking them to support these bills. To date, eight stroke systems of care bills have been signed into law in Colorado, Hawaii, Idaho, North Carolina and Wyoming.

While many state legislatures have finished their work for the year, a few are still in session. If you live in one of the following states, your legislators may still be talking about stroke. Contact them today! Tell them stroke is a priority for you and it should be for them. Every voice makes a difference!

California | District of Columbia | Massachusetts | Michigan | New Jersey | North Carolina | Ohio | Pennsylvania | Wisconsin

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You Don’t Have to Go to Washington to Make a Difference

Map of Washington, D.C.

The Stroke Advocacy Network’s District Meeting Tool Kit is designed to help you connect with your legislators without going to Washington, D.C., or your state capitol, or in some cases, even leaving your hometown! This valuable resource outlines three key ways to make your voice heard while your congressional and state legislators are at home, specifically through meetings hosted by your legislator, one-on-one meetings or site visits. While the tool kit covers all of this information in detail, here’s a little taste of what you can expect:

Why Are These Meetings Important?

Members of Congress and state legislators are asked to consider a variety of issues in their work. Often, it’s the people who shout the loudest who get their attention. The Stroke Advocacy Network was created to help the stroke community raise its voice to ensure that stroke is one of the issues legislators are thinking about. Your story is the key to that effort. Your experience with stroke can help legislators understand the needs and challenges of stroke survivors, caregivers and their families. Only when they understand those needs and challenges can they take action to fill them.

When Should I Meet With My Legislators?

You can request a meeting with your legislator at any time. However, if you want the legislator to attend, you’ll need to request a meeting at a time when the legislator is in the community. At the congressional level, this is known as a “district work period.” You can find out when these work periods are by looking at the House and Senate calendars. Congress has a lengthy work period in August, so now is an excellent time to start scheduling your meetings! For state legislators, just call their office and ask when the legislator will be in town. Alternatively, you can request a meeting with local staff at any time. Local staff are legislators’ “eyes and ears” in the district, so talking to them is like talking to your legislator.

Where Do I Meet With My Legislators?

There are usually three options for where to have a meeting. One is attending a meeting organized by your legislator—often called a “town hall” meeting. You can also meet with legislators in their local office or put together a site visit. The tool kit provides details on each of these options.

How Do I Set Up a Meeting?

How do you make a meeting with your legislators happen? Download the tool kit, which has all the tips and information you need to set up a meeting with your legislators and share your stroke story. The tool kit will tell you who to contact, how to ask, what to talk about and how to follow up to make the most of your efforts.

» To find out who represents you in Congress or in your state legislature, visit the Find Your Legislators page on our website.

As an advocate for the stroke community, you have a critical role to play in helping legislators and their staff truly understand your needs, challenges and successes. This kind of understanding must be built up over time, through an ongoing regimen of local visits, phone calls and emails. As with your long-term rehabilitation effort, a little persistent work with legislators will help you advance the cause. The Stroke Advocacy Network has made that work easy by putting everything you need to know into the District Meeting Tool Kit. Download it today and make your voice heard!

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Virtual Lobby Days Was a Success—Thank You!

We’d like to thank everyone who responded to our call to action for Virtual Lobby Days. Network members from all 50 states, the District of Columbia and Guam urged Congress to prioritize stroke-related legislation during this two-week event. Your efforts resulted in more than 6,500 messages reaching the halls of Congress (that’s 2,000 more messages than we sent last year)! Those messages told members of Congress to:

  • Repeal the caps on Medicare therapy services;
  • Support stroke survivors who want to return to work; and
  • Invest in stroke-related medical research to ensure continued progress in reducing the incidence and impact of stroke.

You spoke for the 795,000 people who will experience a stroke this year, the 7 million stroke survivors who are living with the daily challenges of stroke, and the millions of caregivers and family members whose lives have also been impacted by stroke. We thank you for being a stroke advocate and adding your voice to the chorus of voices heard in the halls of Congress during Virtual Lobby Days in 2013.

If you didn’t add your voice to this effort, we’ll give you additional opportunities throughout the year to make your voice—and your stroke story—heard. Our tools make it easy for you to share your opinions, experiences, challenges and needs with your legislators by providing prewritten messages on each issue with an option to add your personal story. Your voice is important because it helps legislators understand stroke and how changes in healthcare and other public policies can help prevent strokes, improve the lives of stroke survivors and caregivers, and support healthcare professionals who diagnose and treat stroke patients.

Together we can make a difference for the stroke community. Thanks to all the stroke advocates who made your voices heard during Virtual Lobby Days 2013!

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Caregivers Wanted

careliving ad backgroundCareliving Community is a social network designed exclusively for caregivers and family members of stroke survivors. In this free, private space, caregivers can connect with one another in a virtual support group.

Caregivers share their stories, advice on specific topics and the thoughts, feelings and emotions of being a caregiver. Members post pictures of milestones and everyday life as they share their journey through their loved one’s stroke recovery. There are feature articles by experts on specific caregiving topics as well as monthly discussions about various aspects of caregiving.

Launched in January 2012, Careliving Community has grown to more than 2,400 members. Members have shared some of the following observations about the site and its role in their lives:

  • “I am into caregiving for many years and still haven't found any helpful groups...other than this Careliving site.” —T.L.
  • “Thank you everyone for listening I didn't know how much that would mean until I started on this website.” —K.S.
  • “PS: thanks for this site, it has been a godsend!” —D.S.

The companion Careliving℠ program includes a downloadable and printable Careliving Guide, intended to connect both new and experienced caregivers to valuable resources and information about caregiving. Additionally, you’ll find webinars and other resources to help make caring for a stroke survivor easier on the Caregivers and Families section of our website.

» Download the Careliving Guide
» Visit the Caregivers and Families page

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Supported by Allergan, Inc., Boehringer Ingelheim Pharmaceuticals, Bristol-Myers Squibb, Genentech, Inc.,
H. Lundbeck A/S, Janssen Pharmaceutical, Inc. and Pfizer, Inc.