Congress Passes ABLE Act: Major Victory for Persons with Disabilities and Their Families

Congratulations to one of our 2015 Disruptive Women to Watch Madeleine Will for all her work on this legislation and on behalf of persons with disabilities. 

(Washington, D.C. – Dec. 17, 2014) – Last night, the U.S. Senate overwhelmingly passed the Achieving a Better Life Experience (ABLE) Act of 2014 by a vote of 76 to 16. First introduced in 2006, and subsequent sessions of Congress, the ABLE Act will allow people with disabilities (with an age of onset up to 26 years old) and their families the opportunity to create a tax-exempt savings account that can be used for maintaining health, independence and quality of life.

“Today marks a new day in our country’s understanding and support of people with disabilities and their families,” Michael Morris, National Disability Institute (NDI) Executive Director, said. “A major victory for the disability community, ABLE, for the very first time in our country’s policy on disability, recognizes that there are added costs to living with a disability.” He continued. “For far too long, federally imposed asset limits to remain eligible for critical public benefits have served as a roadblock toward greater financial independence for the millions of individuals living with a disability.”  (more…)

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Kaiser Family Foundation Understanding Health Insurance & Open Enrollment Resources

The Kaiser Family Foundation recently released the resources below to help people understand insurance and the Affordable Care Act’s marketplaces. We found them helpful and hope you do too.

 Understanding Health Insurance: Consumer Resources

  • Understanding Health Insurance: Consumer Resources (Updated Web Page)
  • Health Insurance Marketplace Calculator (Interactive)
  • Health Insurance Explained: The YouToons Have It Covered (Video)
  • Health Reform Frequently Asked Questions (FAQs)
  • Health Insurance Quiz (Quiz)
  • Health Coverage, HIV & You (Web Portal) (more…)


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A Week of Music and Health Quality

Cyndy Nayer

Highlights from Stevie Wonder and the meetings of Boston and DC.

albumsIt was a week of meetings, concert, new ideas, gorgeous weather, and finding new friends–a week of quality, indeed.  Here are some findings, some musings, and some encouragement to all who are seeking to build quality and safety into health outcomes.

Boston:  No surprise that this beautiful city is accelerating some of the changes we want to see in health care and health outcomes. Meetings with new folks have fueled my energy in advancing the agenda in the all-important Rx development and access.  What’s missing is the value of new and developing treatments in improving the total value proposition:  what’s the worth in a family (quality of life during treatment), a worksite (lower absenteeism and lowering income loss), and to a person (less side effects, easier adherence, getting to cure [where possible]).  Of course I’ve written about this before (Framework for Outcomes-Based ContractingSovaldi Value of a CureSovaldi OBC Contract–Kiss is Still a Kiss), providing the business and outcomes models for using a high-cost drug that gets the person to goal. (more…)

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Lift Every Voice: Listen to Women Veterans

Janice Lynch Schuster

During last week’s Veteran’s Day inspired concerts and tributes to veterans, a Hill-gathering of Disruptive Women (and our man of the month, Rep. Tim Walz, MN) spoke truth with power. Gathered to discuss challenges faced by women veterans, the group included veterans, members of Congress and their spouses, congressional staff, state leaders, and filmmakers. The group had had enough of platitudes and promises. We were ready for disruption, and Rep. Walz delivered just that, saying he was done with “incremental change” (Washington’s latest, favorite buzz-word) and prepared to lead “seismic change.”

walz panelWalz speaks from a place of experience, knowledge, and passion: He is a retired soldier, and the highest rank ranking enlisted man to serve in Congress. During a 24 year stint in the Army National Guard, including a tour of duty in Operation Enduring Freedom, he also taught high school. The latter tour provided him some insight into chaos and disruption. In the 113th Congress, he will serve in leadership roles that include the National Guard and Reserves Caucus, and the Congressional Veterans Jobs.

In his remarks, Walz noted that “it doesn’t take much to offer health care that people can’t access.” He added that although the VA has made some progress since the days when “the best thing the VA could say for what it had done for women was that the exam tables no longer  that face the door.” Later, he added that the VA system—staffed by dedicated people—still has far to go to really offer care for all, noting that, “it is much easier to put up a yellow ribbon then it is to step up care.” (more…)

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November Man of the Month: Congressman Tim Walz

Congressman Tim Walz (MN-01) is Disruptive Women’s November Man of the Month. Yesterday at our Disparities and Disservice: Women Veterans Deserve Better Health Care briefing we were pleased to present him with this honor and a t-shirt. As a 24-year veteran of the Army National Guard, Congressman Walz works to assure the safety and security of those who serve and have served in our armed forces. He also works tirelessly to ensure they have access to the benefits they deserve. Because of this and his commitment to providing the men and women who return from service with the opportunity to achieve success, happiness and good health in civilian life we are proud to name him November’s Man of the Month.

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Am I a Veteran?

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This post is part of a new series, Disparities & Disservice: Women Veterans Deserve Better Health Care. The series will culminate with a briefing on Thursday, November 13 at noon.

A very personal story illustrates why we continue to have disparities, especially in health care, among women who served in the military.

I was at an event a number of years ago and towards the end of the program, the master of ceremonies, a retired Admiral, called on veterans by war service to stand and be recognized.  Ten WWII veterans stood and took a bow; four Korean War veterans came to their feet and were honored.  The Admiral then asked for Vietnam War veterans to stand and a third of all in attendance stood and the room went crazy in applause.  At that moment I realized that I was still sitting!  There I was, a 22 year Army veteran who served during the Vietnam and Gulf wars and I was still sitting…it was like a kick in the stomach and then I got angry at myself and the fact that I, who knows better, got distracted by the relationship that the word veteran has to serving in a war which correlates to deployment and combat.

All this all happened in a matter of seconds and once I snapped out of it, I stood up to receive the recognition I was due among my wartime peers.  I did not serve in the war, but I was part of the Vietnam War as I cared for our wounded and their families in military hospitals.  (more…)

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The demoralizing care women veterans receive…I have solutions

diana dThis post is part of a new series, Disparities & Disservice: Women Veterans Deserve Better Health Care. The series will culminate with a briefing on Thursday, November 13 at noon.

Out here, the sunrises and sunsets are breath taking. You can feel the calm and quiet, perfected by the chirping of birds and the rhythm of insects.  Reflection is mandatory.  Rural life is slower.  The night skies are darker, shimmering brightly with millions of stars.  The few sirens we hear sound for a few seconds in the morning, midday and early evening… a sort of alarm clock for farmers.

The isolation is peaceful, centering, inviting…. and dangerous for aging disabled veterans far removed from their Community Based Outpatient Centers (CBOC’s) and VA hospitals and lacking community services.

The average person who suffers an injury goes to the closest ER or clinic. The rural veteran weighs the distance to the VA – mine is a couple of hours away – versus my personal assessment of how badly I am injured or how ill I feel. (more…)

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How the VA can better service Women Veterans

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This post is part of a new series, Disparities & Disservice: Women Veterans Deserve Better Health Care. The series will culminate with a briefing on Thursday, November 13 at noon.

I am an Army veteran who was disabled during military service, a health policy advocate for my fellow women veterans, and a long-time patient of the VA health care system. As a patient, I have personally received excellent care through VA for more than two decades, and continue to see progress made in the overall delivery of health care to women. As an advocate, I know there are still many policy, program and cultural changes that must be implemented to ensure federal agencies, including the VA, are providing equitable services to women veterans and fully meeting their unique health care and transition needs.

The goal of VA provided care and services should be to recognize military service and sacrifice and assist veterans – all veterans – in successfully transitioning from the military to civilian life. But just to illustrate the severity of the gender-gap, nearly one in four VA hospitals do not have a full-time gynecologist on staff. This is a major shortfall in providing unique, necessary care to women veterans, and it must be fixed. (more…)

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Free the Data Announces New Partnership with Rep.Wasserman Schultz

Sharon Terry

FTD_logo3WASHINGTON, DC (October 8, 2014)—Free the Data, a national coalition of organizations dedicated to freeing genetic information, announced that U.S. Rep. Debbie Wasserman Schultz (FL-23) was named its Honorary Chair.

“The time for hoarding data as a commodity is over,” said Sharon Terry, President and CEO of Genetic Alliance, the nonprofit health advocacy organization that coordinates Free the Data. “The Coalition is thrilled to have a powerful partnership with Congresswoman Wasserman Schultz. In Breast Cancer Awareness Month, we are confident that the Congresswoman adds strength and momentum to the Free the Data movement, particularly as we work to free data associated with breast and ovarian cancer!” (more…)

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The Rise of Consumer Centricity: Comments on the Gamechanging Opportunities

Cyndy Nayer

In commenting on the new IMS Pharma Letter, we highlight the emergence and widespread build up of the consumer’s role in prevention, care and outcomes. Consumer centricity is being driven by the rise of CDHP (consumer directed health plans), but it’s quite different from these insurance products, with their high deductibles and variable co-pays.

Consumers are learning and experiencing more about consumer-directed health plans (CDHP) as they enter the exchanges, even though CDHP has been around for fifteen years or more.  Most new health insurance products have a deductible that must be met, so consumers must pay for services and treatments until they reach that goal.  NOTE:  the ACA (Obamacare) mandates that no individual pay more than $6350 in total out-of-pocket costs in Y2014).  If they have not paid the sum, they will pay more of their own money for the care.

Consumer centricity in health care means that control for choice of service and for outcomes will shift to the  consumers and they will become the ultimate arbiters in their health and health care.  It’s a value-based concept that drives this shift in decision-making. IT supports the data so that the consumer can decide where, when, why and who to choose for care based upon personal preferences and goals, total costs, incentives to engage and time to get to the outcome preferred. (more…)

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Vaccine Injury Stories: the Sacred Cows of the Internet?

When I first started looking into vaccines, I had no idea that an anti-vaccine movement even existed. I came across claims that the vaccines were toxic and dangerous; the diseases, it was claimed, were not. I have some background in science, so I was able to dismiss those claims as inaccurate, but I couldn’t help but be drawn in by tragic, angry and deeply personal stories from parents who claimed their children were harmed by vaccines.

I dared not question them, but I still couldn’t understand…

If vaccine injuries were occurring on a scale like this, why wasn’t anybody doing anything about  it?  And why wasn’t the media reporting on them?

I wanted to know more about these vaccine injury stories but worried it would be insensitive to probe or question their accuracy. I could hurt their feelings or worse, insult their child’s memory. After all, while I (more…)

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Federal Changes in Lab Results Access Can Make Personal Health Management Easier

Terri Prof Headshot 0412Have you ever received a phone call from the doctor’s office with the message, “Hello Ms. X, Your test results are normal.  Make an appointment next year.”?  All you know is what the healthcare provider tells you over the phone.  Maybe this conversation happened in the physician’s office during your visit.  Your doctor swoops in, glances at your test results and breezes through the test results.

If you are healthy and have never had any major health issues, this may be enough information.  You continue on for another year, or 6 months, without a worry.  But, maybe you wonder, “What does ‘normal’ mean?  Can I do anything to improve my health?”  How do you know?  Are you at the high end, the low end, just barely in the range? (more…)

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Celebrating Massachusetts’ Health Reform

Amy CaronRecently Massachusetts announced that the state will not join the federal HealthCare.gov website and will remain a state-based marketplace. Having built and implemented what became the national model in 2006, this is great news. The Massachusetts Health Care Reform Act aka Romney Care changed the national dialogue on solving the issues of health care access, costs, and outcomes and transformed the lives of thousands of Massachusetts’ residents, myself included. (more…)

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An Interview with Amanda Sager

asAmanda Sager graduated from Bridgewater College in 2009 where she received a Bachelor of Science degree in Family and Consumer Sciences with an emphasis on Early Childhood Development. After college, she became the Site Director for the After School program at Cub Run Elementary in Rockingham County, Virginia. After a year at Cub Run, Amanda then moved to Mountain View Elementary in Rockingham County to open the Before and After School program as the Site Director there.  She was at Mountain View for three years before accepting the position as Behavioral Specialist at Spotswood Elementary School in Harrisonburg City. After two years at Spotswood she moved to Thomas Harrison Middle School in Harrisonburg City to work with students with autism. Amanda started at Second Home same time as she started at Thomas Harrison. (more…)

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ER Visits: Is Traumatic Brain Injury on the Rise?

Is it all in your head? Some new research suggests that more and more people are visiting the ER for traumatic brain injuries. A study, published in the Journal of the American Medical Association, analyzed the national trends in ER visits and noted a link in increased number of traumatic brain injuries. The researchers analyzed data from the Nationwide Emergency Department Sample (NEDS) database. This is a database that tracks emergency visits, and the reason for those visits.

What Researchers Found (more…)

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