THE Challenge! Spring 2011

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THE Challenge! THE Challenge! is published by the Brain Injury Association of America. We welcome manuscripts on issues that are important to the brain injury community. Please send submissions in a standard Microsoft Word ® document to publications@biausa.org. For more information regarding advertising in THE Challenge!, please visit the sponsorship and advertising page at www.biausa.org. Association Staff & Volunteers: Marianna Abashian Greg Ayotte Contents 3 | Communication Strategies following a Brain Injury 8 | A Father Explains his Son’s Challenges Following a TBI 9 | Classifying Brain Injury as a Chronic Disease Carol Bray Susan H. Connors Alexandra deGraffenreid Robert Demichelis Sarah C. D’Orsie Anne Forrest Jessica Kerney Laurie J. Kusek Mary S. Reitter Postmaster: Periodicals postage is paid at Vienna, VA 22181 Send address changes to: THE Challenge! 1608 Spring Hill Rd., Suite 110 Vienna, VA 22182 Copyright 2011 BIAA All rights reserved No part of this publication may be reproduced in whole or in part without written permission from the Brain Injury Association of America. Email requests to publications@biausa.org. 11 | Caregiving, Year after Year: how to Ask the Family for Help 13 | Advocacy Update 14 | Brain Injury Awareness Day 15 | Honor Roll of Donors 18 | Affordable Care Act 23 | State Affiliate News 25 | Resources – Assistive technology 27 | News & Notes 29 | Advertiser Index Publication designed by Eye to Eye Design Studio LLC Email: eyetoeyedesignstudio@gmail.com 1 THE Challenge! | Spring 2011
From my desk President’s Message Americans shell out $1.5 trillion each year for insurance premiums. We buy financial protection for ourselves and our possessions so that we can sleep better at night. Frequently that protection falls short of our needs. Sometimes it is because we are tricked by the “fine print,” but more often key terms and conditions are presented upfront and in plain sight – we just don’t know what they mean. Recently I learned that when your home is destroyed, by a flood for example, a typical homeowners’ policy will pay for you to live elsewhere while your home is rebuilt. The catch is, you only get one year of free rent. For many families, 12 months is not enough time to assess the damage, clear the debris, hire an architect, obtain the permits, build a new place and furnish it in your own way. This is especially true if your home is destroyed in a common disaster. When the demand for rebuilding is high, the process slows down and the costs skyrocket so standard coverage is insufficient. Just like homeowners insurance, health insurance is often inadequate in catastrophic situations. Lengths of stay aren’t long enough, there aren’t enough specialized providers in the network and there’s too much paperwork and red tape. And just like building a new home, rehabilitation is a slow, sometimes painful, process. The outside walls go up quickly, but the inside work takes a long, long time. And like home maintenance, disease management is an ongoing process. Whether buying homeowners insurance or health insurance, most people agree that “hindsight” is 20/20. Wouldn’t it be great if “foresight” were 20/20 too? That is, wouldn’t it be great if we knew what we were buying before we bought it? One of the goals of the health reform law is to make health insurance plans more transparent. The Patient Protection and Affordable Care Act authorizes the National Association of Insurance Commissioners to work with stakeholders to develop “coverage facts labels.” These labels will be similar to the nutrition facts labels on the food we buy – the labels will tell us what’s inside the policy. Information labels sound like a good idea until we remember that some people don’t know how much protein or sodium they need and even fewer know what trans fat or dietary fiber are! Over the last 30 years, individuals with brain injury have learned the hard way that OT, PT, speech, personal care and a wide range of other services are needed after brain injury. Of course, everyone is different so the type and amount of each therapy or service needed vary widely. As advocates, it is our job to raise awareness of brain injury and to help others understand the complex issues individuals and families face every day. As advocates, it is our job to communicate our needs, goals and choices to friends, family, professionals and the general public, including lawmakers. This issue of THE Challenge! is all about communication. It describes why speech language, receptive learning and word finding is sometimes difficult after brain injury. It offers useful tips for talking with others after the injury. It explains why many people in the field are now thinking of and talking about brain injury as a chronic disease. This issue also highlights the presentation delivered by Anne Forrest during Awareness Day on Capitol Hill, as well as the remarks of Rep. Bill Pascrell, Jr. and legislative staff from Rep. Gabrielle Giffords’ office, who joined BIAA’s National Medical Director Dr. Brent Masel at a recent press conference to urge Health and Human Services Secretary Kathleen Sebelius to write favorable regulations under the Affordable Care Act. As always, THE Challenge! includes an update on federal advocacy activities and news and notes from BIAA’s chartered state affiliates, including the successful Brain Injury Awareness Month activities conducted across the country. Last, but definitely not least, this issue sends a great big shout out to the individuals and organizations that generously support our mission. Personal donations and corporate sponsorships make our day-to-day work possible. We are truly grateful. Susan H. Connors, President/CEO Brain Injury Association of America THE Challenge! | Spring 2011 2
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Page 5 and 6: Communication Strategies forward. (
Page 7 and 8: Communication Strategies Personal L
Page 9 and 10: A Father’s Story A Father Explain
Page 11 and 12: Classifying Brain Injury And indeed
Page 13 and 14: THE Challenge! | Spring 2011 12
Page 15 and 16: Brain Injury Awareness Day Brain In
Page 17 and 18: Honor Roll of Donors Ms. Mary Reitt
Page 19 and 20: Rep. Giffords’ staff, Rep. Pascre
Page 23 and 24: Expressing emotions shouldn’t be
Page 25 and 26: State Affiliate News South Carolina
Page 27 and 28: Resources National Organization Car
Page 29 and 30: Classifying Brain Injury Classifyin

THE Challenge! Spring 2011

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