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Stroke Advocacy Network Newsletter

MARCH 2012

Action Still Needed on Medicare Therapy Caps Issue

On February 27, we passed along the good news that Congress and the President extended the Medicare therapy caps exceptions process through December 31, 2012. This means that stroke survivors covered by Medicare who need more therapy than the caps allow will still have access to those services through the end of 2012. However, our work is not done yet!

Since 2006 when the caps were implemented, the exceptions process has been extended by Congress on a temporary basis only, usually one year at a time. At one point, it was extended by only two months. This lack of stability has led to significant challenges in determining treatment for stroke survivors on Medicare. Neither healthcare professionals nor patients can be sure that additional therapy services will be covered. Also, the continued need for legislative action provides opportunities for members of Congress to open up the law and create new barriers to therapy services. For example, during the most recent debate about this issue, legislators extended the caps to apply to new settings (hospital outpatient settings) and added a “manual medical review” for those who reach a threshold of $3,700 in therapy services (in addition to the caps at $1,880).

Clearly, it’s time to repeal the caps altogether—to return the Medicare program to a place where stroke survivors and their healthcare professionals decide how much therapy is enough, not Congress. You can help make this happen! The over 10,400 messages that Stroke Advocacy Network members sent  to Congress in support of the exceptions process made a difference. Now we must turn that energy toward the question of an overall repeal of the Medicare therapy caps.

Legislation has been introduced in Congress to do just that. H.R. 1546 and S. 829 would repeal the Medicare therapy caps, providing a permanent solution to this issue. Please take action by asking your members of Congress to support these bills.  If you’ve already taken action, be sure to follow up on your request. The Stroke Advocacy Network can help you identify your members of Congress and find phone numbers for their offices (local or in Washington, D.C.). Following up with a phone call will ensure that your request is not only heard but acted on as well. Take action today!

Budget Process Begins: NIH Update

President Obama released his proposed federal budget for the 2013 fiscal year (FY 2013), which maintains funding for the National Institutes of Health (NIH) at just over $30 billion. It also includes a slight decrease in funding for the National Institute of Neurological Disorders and Stroke (NINDS) from $1.69 billion to $1.64 billion. The NINDS is the institute within the NIH that focuses on stroke-related medical research.

The President’s budget submission is the start of a long and arduous process of determining specific funding levels for each agency of the federal government. The budget writing process now moves to Congress, where funding levels will be debated throughout the spring, summer and early fall. Typically, Congress, in consultation with the President, identifies final funding levels and passes them in appropriations bills. There are 12 appropriations bills—each one funds a portion of the federal government. The appropriations bill that includes the NIH is called the Labor, Health and Human Services Appropriations bill. These bills are debated and voted on just like any other piece of legislation. They must also be signed by the President before they can become law.


Medicare Therapy Caps

NIH Funding

State Legislation

Elections and You

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National Stroke Association is getting an early start on the process of advocating for appropriate funding levels for the NIH and NINDS in FY 2013. We’ve joined with other stroke and heart disease prevention groups in a letter to Congress that requests $32 billion in funding for NIH (a slight increase over last year) and $1.7 billion for the NINDS (the same as last year). As the budget process moves forward, we’ll keep you informed and let you know when it’s time to make your voice heard on this issue.

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Statehouses Active on Stroke Issues

images of license platesIn January, the Stroke Advocacy Network launched our State Advocacy Action Center. The Center was created to house information about stroke-related legislation being considered at the state level. We asked you to let us know about legislation happening in your state, and from your tips, we’ve identified the following issues pending in California, Ohio and Tennessee.


The Governor of California has released his budget proposal for the 2012-2013 fiscal year, and it eliminates all state funding for Caregiver Resource Centers (CRCs). There are currently 11 CRCs around the state that provide supportive services for caregivers of people with brain injuries. These centers provide mental health support, respite, legal advice, support groups and education programs. Even though CRCs are serving approximately 12,000 caregivers, all 11 CRCs maintain waiting lists for various services. If you live in California, contact your state legislators today and ask them to preserve funding for CRCs. Your state legislators will be debating this issue in the coming months, and they need to know how important CRCs are for caregivers in your state. If you don’t know who represents you on the state level, read the “Identifying Your State Legislators” section at the end of this article.


The Ohio General Assembly is considering a bill that would designate the month of May as “Pediatric Stroke Awareness Month.” Senate Bill 260 (SB 260) was introduced by State Senator Larry Obhof (R-22) and has 25 co-sponsors. Co-sponsoring a bill is a way that legislators can show their support for the bill before they have the opportunity to vote on it. Raising awareness about stroke is important. In Ohio:

  • More than 5,800 Ohioans died as a result of stroke in 2006;
  • Stroke cost Ohio’s Medicaid program an estimated $268 million in 2007; and
  • Significant percentages of Ohio’s population have conditions that are risk factors for stroke, including: Diabetes (over 10 percent); Obesity (nearly 30 percent); and Tobacco use (nearly 23 percent).

If you live in Ohio, contact your state legislators today and ask them to support SB 260. If you don’t know who represents you on the state level, read the “Identifying Your State Legislators” section at the end of this article.


The Tennessee General Assembly is considering legislation that would require a special committee to review the services provided to survivors of traumatic brain injuries. This review is intended to identify what services the state can provide to: (1) help survivors access therapy services; (2) help survivors return to work; (3) decrease survivors’ need for government assistance; (4) educate families; and (5) educate businesses about how they can help survivors return to work.

The House version of this legislation is House Bill 440 (HB 440) and was introduced by State Representative Matthew Hill (R-Jonesborough). The Senate version is expected to be Senate Bill 422 (SB 422) and is expected to be introduced by State Senator Rusty Crowe (R-Johnson City). If you live in Tennessee, contact your state legislators today and ask them to support these important bills. If you don’t know who represents you on the state level, read the “Identifying Your State Legislators” section at the end of this article.

Identifying Your State Legislators

To find out who represents you at the state level and how to contact them, visit the Find Your Legislators page of the Stroke Advocacy Network website. Once there, just type in your zip code and push the “GO” button. Once your list of federal legislators appears, push the “Show All” tab to expand the list to include your state legislators (they will appear below the federal legislators). Remember that you have two people who represent you at the state level—a state senator and a state representative (except in Nebraska, where you only have a senator). Make sure to send a message to both of these individuals.

You can help spread the word about stroke-related issues pending in your state. As you go about your daily life—reading and watching local news and talking to people in your community—write down any information about stroke-related legislation being considered by your state legislature. Send that information to us, and we’ll post it on the State Advocacy Action Center. We’ll also spread the word to other Stroke Advocacy Network members in your state and provide tools to help them communicate with their state legislators on the issue. Help make a difference on stroke-related policy—together, we can prevent stroke and help those who have already been impacted by it.

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Election Year Advocacy Fun

Photo of lgeislative bill boxOne of the most basic tenants of our democracy is the right to vote—and the right to encourage others to do so as well. With the election season in full swing, now’s the time to think about your role as a citizen. Even though the process may be somewhat frustrating (and even negative) at times, you can still make a difference. Here are three ideas to get you going:

  • Start a voter registration drive—In order to vote, most states require you to register, which typically just means filling out a form verifying your name and home address. Voter registration drives get people who aren’t registered to vote signed up—so they can vote on election day. In addition to enhancing the democratic process, voter drives can help get like-minded people out to vote. Each state may have different requirements for conducting these drives, and some states have deadlines for registration. Contact your state’s election office to find out what rules apply in your state.
  • Engage in “get out the vote” activities—These activities are designed to encourage people to vote on election day. They can include everything from phone banking and “walking the district” to sign waving and using social media sites before or on election day. Phone banking is something that campaigns or political parties typically do. They establish a phone bank to call supporters on election day and remind them to vote. Volunteers are typically used to make these calls. Volunteers are also used by campaigns and political parties to “walk the district” prior to election day to remind supporters to vote. You’ve probably seen people standing on street corners waving campaign signs. Campaigns and political parties also use volunteers to distribute yard signs in the months leading up to election day. More “tech-savvy” activities include text messaging, social network status updates and viral marketing, such as adding a “tag line” to your e-mail signature, to encourage others to vote.
  • Volunteer at a local polling place—Most municipalities are in need of people on election day to help facilitate the voting process. With exceptionally high turnout expected in November, they’ll need more help than ever. In some jurisdictions there is even a modest stipend associated with this work. Check with your state’s election office to find out how to volunteer.

Elections provide the perfect opportunity to get actively involved in our democracy. Voting is just the first of many steps you can take to participate.

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 Supported by Boehringer Ingelheim Pharmaceuticals, Pfizer, Inc., and The Medtronic Foundation.