That Very Very Thin Line – Do NOT Be Tom!

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That Very Very Thin Line – Do NOT Be Tom!

My husband and I moved two years ago to Florida where we now live in an “active adult” community*. We love it! We’re very happy here. We’ve met and made many new friends – people we have truly come to care about. I’m following in family footsteps.  My parents did the same thing decades ago. They lived in a different city, but they, too, lived in an active adult community for 20+ years. My father, in a somewhat macabre voice, always called it “God’s Waiting Room.” And, as I learned again this past week, it turns out that we now live in God’s Waiting Room, too. One evening last week a neighbor phoned, informing us that our friend who I’ll call Sam, a fellow we’ve gotten to know and enjoy, had suffered a heart attack, and had subsequent surgery after coding in the hospital waiting room. Sam was in a coma, and we wouldn’t know for several days whether he would pull out of it, and whether there was any long-term brain damage. As of today, we still don’t know. Sam is still in a coma. Now – in God’s Waiting Room this is not unexpected. In less than two years, this is our third such experience, having already lost two friends who have passed away. It’s not a question of if or when. It’s a question of WHO. Of course, I could begin an entire riff on why a private advocate could succeed in this community, but that’s not today’s post. No, today’s post is about taking someone’s life into your hands because you don’t know what to do in such an emergency. I’m writing this post because I’m angry, frustrated – and so very sad. Here’s why: The neighbor who phoned us (we’ll call him Tom) lives next door to Sam. It seems Sam, who lives alone, and experiencing frightening symptoms, appeared at Tom’s door that morning and asked Tom to take him to the hospital. So Tom drove Sam the 10 miles to our small community hospital, then sat with Sam in the waiting room for 15…


 

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Announcing: A Big Change for Admission to the AdvoConnection Directory

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Announcing: A Big Change for Admission to the AdvoConnection Directory

Many readers of this blog are familiar with, or are already listed in the AdvoConnection Directory. It’s THE place to be for private, professional, independent advocates who want to be found and hired by patients or caregivers who need them. It’s the largest, and the only “vetted” directory that exists for advocates. We”re announcing today a big change to what it takes to be listed in the directory which will affect almost everyone who has given thought to being included in the directory – but isn’t yet listed. That may include you! We’ll begin with a little history to help you understand the change. A History of Independent Health / Patient Advocacy Directories When AdvoConnection was first launched in 2009, it was the only directory of independent advocates in existence. And – that’s all it was – just a directory. There was no membership organization associated with it. There were 30 advocates listed – and they were there because they SAID they could be advocates. Period. There was no vetting, no review, and (you’ll love this….) no cost! AdvoConnection Homepage: December 2009 Of course, in those days the circumstances were quite different. Very few people called themselves “patient advocates” or “health advocates.” Certainly no one would ever want to be in a directory if they weren’t really qualified to help patients, right? Wrong. Within months of our launch, it became apparent that such an approach couldn’t last for the long haul.  We quickly figured out: That allowing just anyone to be listed in the directory didn’t serve patients well. Not everyone who wanted to be listed had the chops to do what needed to be done for patients. They would say, “I just want my name in there to see if people will call.”  (This raised all kinds of ethics red flags!) That not everyone who was listed in the directory understood how to run a business. Some offered free services because they thought that would be a good way to launch a practice. (It’s not!)  Too many of the listed advocates began to ask to be removed from the…


 

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History, Tidbits of Interest, and True Confessions about Patient Advocacy Certification

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History, Tidbits of Interest, and True Confessions about Patient Advocacy Certification

Today’s post is deeply personal, the culmination of 5-1/2 years of work, thousands of hours of donated time and effort, and my hopes, emotions, and dreams for this profession of health and patient advocacy that I believe is so vital to the future of safe, effective, and fair patienthood. It regards the launch in mid-March (2018) of Patient Advocate Certification from the PACB (Patient Advocate Certification Board), how we got there, my appreciation and deep respect for the hard work of my fellow PACBoard members, and the immense amount of pride I continue to feel about being a part of the Board, and my role in bringing certification to fruition as one member of the PACB. It also includes some frustration and some lows that went with the highs…. It’s my personal take on history and true confessions all rolled into one. History In September 2012, a group of 25+ interested parties came together to explore the possibility of certification development. Called together by two individuals involved in advocacy, author Jari Holland Buck, and Deb O’Connell from the University of Toledo, they represented advocates, educational institutions, and professional organizations. In the first few months, as we got to know each other, the big picture was discussed. Goals were framed. Eventually a steering committee was elected – and thus began the work of certification development. Thinking back to those early days (and many days since), it’s kind of a miracle that we ever completed the certification. As we got started there were huge personalities involved, including some who didn’t like not being in charge. (Yes, that’s a double negative – so read it again!) I was unpopular from the get-go which isn’t an unusual position for me (strong leaders with strong personalities are to be avoided at all costs!) but realized that my best contribution could be my technical abilities, as in, building the online structures for communications – the website, the document repository, etc. So, I volunteered my time as support personnel – NOT as voting member of the Board. Otherwise? I might not be writing this post today. Work…


 

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A Patient Advocate’s Life

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A Patient Advocate’s Life

This video post was contributed by Caryn Isaacs, Get Health Help a mentor for those who are building an advocacy practice.   A Patient Advocate’s Life Caryn Isaacs Are you prepared to help people regardless of your feelings towards them? Ask yourself: Do you like to get involved in other people’s problems and to take control of the situation? Do you like to get involved in complex issues? Do you like to listen to what others are saying? Are you in good health and physically able to care for otthers? Are you able to distance yourself from situations? Are you able to evaluate and prioritize? Are you able to communicate effectively? Do you like to talk about yourself and patient advocacy? These are the things patient advocates do. They also: Research diagnoses and conditions. Liaison with families and other professionals. Monitor and improve lifestyles. A career in patient advocacy can be very rewarding. A mentor will help you think through these issues.   Find Caryn’s Mentor Listing.   Learn more about Caryn’s approach to mentoring. Meet other mentors who are available to help you. Suggest a Topic for this Blog Return to the Master List of Health &…


 

 

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STOP! HALT! Keep Quiet … or Lose Business

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STOP! HALT! Keep Quiet … or Lose Business

Last week two of my friends invited me to participate with them in a local March for Our Lives event being held Saturday. If you are tuned into the news and politics of today, you know that marches were held to support gun control to keep people, especially our children, safe from being victims of mass murderers. Hundreds of thousands of individuals marched on Washington, DC, and in hundreds of other cities to bring attention to this issue. To my friends’ invitation, I replied no. I couldn’t / wouldn’t go. But maybe not for the reasons you might think. It’s not that I don’t believe in peaceful protests – because I do. I remember being inspired by the civil rights demonstrations in the 1960s. I participated in peaceful protests over the VietNam War when I was in college. I even (metaphorically) burned my bra! But no, I did not attend the March for Our Lives. Here’s why. Because as a smart business owner, I know it can be the kiss of death to publicly display one’s politics. Because I am first, and foremost, a business owner who already knows she is having a positive influence on a population of people without injecting my political and personal beliefs into my work. And because I feel I need to lead by example to those of you who read and embrace the work I do in advocacy, and want to create and grow good, strong practices of your own. Support for my refusal to be publicly political: Suppose I told you I am pro-life. If you are also a pro-lifer, then you would cheer. But if you are pro-choice, you would cluck in disgust. Now, instead, suppose I told you I am pro-choice. That changes things! If you are pro-life you would begin to question whether my leadership is all you thought it was, while pro-choice believers would just smile and agree. In all cases, everyone would pass judgment. Everyone would side with me or against me. I would lose respect. And that affects my ability to do business with and lead you.…


 

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Did You Get Something That Looks Like a Medicare Card in the Mail?

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Did You Get Something That Looks Like a Medicare Card in the Mail?

The envelope says its from Medicare. The card inside looks very official. It’s got your name on it, and a bunch of numbers and letters that don’t look at all familiar. But – can you trust it? Is this new Medicare card for real?  Can you use it with your doctor and other medical needs? Why on earth, after all these years, would they just send you a new Medicare card for no apparent reason? The answers are yes, yes, yes…. and for a very good reason! You can trust it. It is for real, and not only CAN you use with your appointments – you are expected to begin doing so as soon as you receive it. So what’s that all about?  Why new cards, and why now?  It’s actually pretty simple. If you look at your old Medicare card, you’ll see that the ID number is the same as your Social Security Number.  This has been a boon to identity thieves for years!  In 2015, a new law was enacted that required CMS (Centers for Medicare and Medicaid) to replace the current cards by April 2019. The new numbering system was designed, the implementation process was developed, and now (finally) the cards will be mailed to beneficiaries, beginning in April 2018. Mailing of cards will take place state-by-state, according to this schedule. Each Medicare or Medicaid eligible American will be issued a new Medicare Beneficiary Identifier (MBI) – that’s your new Medicare number and you’ll be able to find it on your new card. Once you receive your new card, be sure to take it to all your appointments. The staff at your providers’ offices will know what to do with it. Didn’t receive your new Medicare card yet? Cards are being mailed to a limited number of states and territories before June 2018. As of today (March 2018) the only timetable set for the additional states is “After June 2018”.  You can check here to find an updated schedule. What should you do with your old Medicare card? One you have your new card in hand, get rid of the old one. Shred it. Burn it. Dispose of it in some way that no one can get a hold of it in order to use your Social Security number to steal your money or your identity. It will be a relief not to think about these numbers…


 

 

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How Is Patient Advocacy Like Doing the Laundry?

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How Is Patient Advocacy Like Doing the Laundry?

Would you ever hire someone to do your laundry? Many of us would answer Yes! Of course! — IF we had the money. A big IF! I suspect, however, that most of us would say no, knowing that washers and dryers make it easy to get the family laundry done, even if we dislike the task.  Further, we all think we know how to get our clothes clean (short of occasional coffee and ketchup stains). Even if we feel laundry-challenged, it doesn’t seem to be enough of a problem that we would actually pay someone else to do it. However, last week I met a gentleman, Mr. Santello, who had just hired a woman named Gloria to do his laundry. It turns out that finding someone to wash, dry, and sometimes iron his clothes was more of a challenge than he expected. He said he called 11 different people before finding Gloria, and even then, he had to agree to her “exorbitant prices.” Why was it so hard for Mr. Santello to find someone to do his laundry? And how does that apply to patient advocacy? We have to remember that Gloria isn’t just doing laundry. She is in the BUSINESS of doing laundry. Like advocacy, she provides a SERVICE business that requires her commitment of time, plus expenses like detergent, gas for her car, or marketing, and equipment like her washer, dryer, and iron. When she takes into account her time and all her expenses, she has figured that she must charge Mr. Santello $100 a week. Most of us would never consider hiring someone to do our laundry at $100 a week. Gloria’s “exhorbitant prices” just aren’t worth it to us. We don’t VALUE the service of doing laundry enough to pay so much for it because we think we can do it ourselves. That’s good enough. And that is the key: VALUE. Is a Patient Advocacy Practice Different from Laundry Service? Unfortunately, for most potential clients, the service of advocacy is not unlike laundry service. That’s because patients don’t realize that they don’t know what they don’t…


 

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Channeling Oliver Twist and the Two Steps of MORE

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Channeling Oliver Twist and the Two Steps of MORE

This past week, for the first time, AdvoConnection Directory-listed APHA members were able to access their statistics (analytics) for their AdvoConnection profiles. How many visitors found the advocate’s profile in the last month? How many of those visitors were unique? (first visits) How long did they stay, on average, to read the profile? Of course, the idea for each listed advocate is to try to improve upon those numbers, month over month, knowing that the MORE people who contact them, the MORE clients they may end up working with… Or, with a nod to Charles Dickens, and channeling Oliver Twist, “Please Sir! I want some more!” M-O-R-E? Well – yes – most AdvoConnection-listed advocates would tell you they would like more clients. And most believe that MORE clients will result from MORE profile visits. But that assumption is only partially true. To better understand why, let’s more closely examine that concept of MORE. The Questions Asked With the new stats review came questions: How many people need to look at my profile before someone actually hires me? Why do people call me, but then no one hires me? She didn’t get as many profile visits as I did, but two clients hired her. Why didn’t they hire me? Finding the Answers The more people who find your profile, the more people who then contact you about helping them, and the more conversations you have. Many advocates believe that is all there is. A numbers game. With more conversations come more clients. But that’s not necessarily true. In truth, MORE conversations mean MORE opportunities to engage with a contracted client. That’s the key. Those phone calls and emails don’t represent new clients. They represent opportunities. So – Step One is to maximize your opportunities. Maximizing your opportunities means better marketing, including updating and honing of all your online presences. SEO, links, commenting on others’ blogs, Facebook pages or Twitter posts – those can be done to make your profile and web presences more enticing. Public speaking, newsletters, maybe some advertising – those must be done off line so people actually go…


 

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Income Tax Time – Saving Money and Saving Trouble

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Income Tax Time – Saving Money and Saving Trouble

It’s that time of year when, every time we turn around, we’re being reminded that it’s time to file our income tax returns. I rank those moments right down there with getting a tooth drilled, hearing that a high school friend died, or, these days, watching the news. Yeah. So, in hopes of removing some of the sting, and in an effort to pull all the material together, accessible in one place, I’m going to take this occasion to compile into one post what I’ve had to say over the years about taxes on this blog:  yours, your clients, and the future of taxes, too. There may be some idea seeds to help you or your clients save money or time. Your Clients’ Income Tax Filing Over the years, we’ve taken a very thorough look at what your clients need to know about paying you for their services, and how that affects their income taxes. Many new advocates are surprised to learn that their services may be deductible for their clients, perhaps as a way to help their clients reach their medical expense filing threshold. This has to do with the IRS’s master list of deductible medical expenses – and guide dogs for the blind. We’ve written clarifications on this for you to study and share with your clients: Helping Your Clients Deduct Your Services From Their Income Taxes (IRS and CRA) It’s That Time of the Year – Income Taxes! for You and Your Clients Tax Time! Can Your Clients Deduct Your Patient Advocacy Services? Patient Advocates, Income Tax Deductions and Guide Dogs Is a Patient Advocate or Navigator a Qualified Medical Expense for Patients? Your Own Income Tax Filing (filing 2017 tax returns in 2018) Deadlines in the US are different this year: Americans’ tax filings aren’t due until April 17 this year. Seriously. Canadian income tax filings are due either April 30, or for those who are self-employed, June 15th.  (Hey, I like that idea of more time for those who are self-employed, although in some ways that simply prolongs the agony.) Filing your own income tax…


 

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The Challenge of Assessing the Merit of a Client

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The Challenge of Assessing the Merit of a Client

This post was contributed by Lisa Berry Blackstock, Soul Sherpa® a mentor for those who are building an advocacy practice.   Most patient advocates are hungry for business, and for good reason. More customers mean better business revenues. It’s one of the major reasons people enter into business, regardless of the profession. Patient advocacy isn’t any different. What is different about our profession, though, is a knee-jerk tendency to assume every potential client is a client worth taking. What patient advocate doesn’t want to help a person in need? We most definitely want to help people, especially those who find themselves vulnerable in the midst of a healthcare system where navigation can become overwhelming. When I began my patient advocacy practice, I assumed every tale of woe I heard from a potential client was accurate and worthy of my advocacy services. Over time, however, I began to identify a pattern that has become part of my screening process for new clients. It turns out that every situation is not as it appears and sometimes very different than how it is described. Every patient advocate’s goal is to perform a good and valuable service, and be compensated accordingly. However, deciding which…


 

 

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Pancakes, Snakes, Red Flags, and Advocacy

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Pancakes, Snakes, Red Flags, and Advocacy

You don’t have to be a huge fan of Dr. Phil’s to appreciate his delightful and useful sayings. He boils down important and sometimes complex concepts into downhome philosophy that helps us better understand our fellow human beings and our lives. Today we’re going to focus on one of those sayings to improve our ability to ferret out those clients we should not work with (yes, I said, SHOULD NOT work with):  “No matter how flat you make your pancake, it still has two sides.” Advocacy stories are like those pancakes. They have at least two sides, too. I raise this today after an exchange with an APHA member about a disconcerting client experience. That came on the heels of another advocate’s experience where, because of a simple typo on her directory profile, a potential client posted a negative review of her work. Say what? Let’s look at both stories – and, in pancake style, their flip sides. The first advocate was contacted by a potential client who was very specific about help he needed with a hospital bill. After an assessment conversation, she quoted him a price, sent him an electronic invoice, then waited for him to pay it. He forwarded reams of paperwork to her, but never paid the invoice. She sent invoice reminders. He contacted her several times asking why she had not gotten started on the work (indicating there was some deadline that needed to be met), promising a check was on its way, and she reiterated that he needed to pay his invoice before she would get started. Payment was never forthcoming. She never started the work. He got very upset, and contacted APHA through its feedback process making her out to be the demon-child for not handling the work, and for making him miss a deadline. Of course, he never mentioned the lack of payment. Now, as you can imagine, this kind of report is quite disturbing!  But, understanding that there might be another side to this client-story pancake, and as we do for negative reviews, we contacted the advocate just to make her…


 

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Black Box Warnings May Save Your Life

This post has been shared by the AdvoConnection Blog. It was written with a patient-client audience in mind, but might be useful to you, too.

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Black Box Warnings May Save Your Life

This often comes as a major surprise for patients: that when a prescription drug is known to be effective, and is approved by the FDA for some patients, that doesn’t mean it’s effective and safe for all patients. It’s true that some people may be allergic, or the drug might have been prescribed to treat the wrong diagnosis, or the patient may not take the drug properly and over (or under) dose…. …But those situations are not what I’m addressing in this post. Instead what I’m describing is the fact that patients die or are harmed every day from FDA-APPROVED pharmaceutical drugs, drugs their doctors prescribed for them to take to improve their health and medical problems. (I’ll mention here that no doctor prescribes a drug with an intent to kill his or her patient. But that does not mean a drug is safe for everyone, including you.) Sometimes the FDA approves a drug that may help some patients, but can be truly dangerous for many others.  Here are two examples: Flouroquinolones are strong antibiotics with brand names like Cipro and Levaquin, and are often used to clear up problems like urinary tract infections or pneumonia. However, some patients found themselves with tendon ruptures from the drugs. Avandia is a drug developed for patients with diabetes. Many diabetes patients also suffer from heart disease, and Avandia was found to increase their chances of suffering heart attacks. Xarelto is a drug that prevents blood from clotting. Patients who experience severe side effects often bleed to death as there is no antidote. For both these drugs (classes) the FDA ultimately issued what is called a Black Box Warning. Because these drugs were found to be harmful for many of the people they were originally intended to help, a Black Box Warning is the strongest effort the FDA can make to warn doctors and patients about the potential for harm if given to the wrong patient. The name “Black Box” comes from the fact that warning itself, as printed in the materials that accompany the drug,is surrounded by a black box. When the FDA issues a Black Box warning, it is telling the drug manufacturer that it is one step short of removing the drug from the market. It’s a recognition of how harmful the drug can be if given to patients who are at risk of developing the possible adverse side effects.…


 

 

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Fashionistas! What Hats Does an Advocate Wear?

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Fashionistas! What Hats Does an Advocate Wear?

I played golf the other day with a group of women I didn’t know well. I came away from the round being less pleased with my golf game (I really can’t putt!), but much pleased with the conversation and its application for our health and patient advocacy profession. In fact, I was so pleased with it, I went home and recorded notes so I could remember the conversation to share with you. The ladies I played with were very curious about advocates. They all had healthcare horror stories to share. One had recently been through some bad medical experiences with her husband. One by one throughout the morning, she told me about some healthcare system transgression he (they) had suffered. For each one, I described to her some ways an independent advocate might have helped (with the emphasis on “independent” for all the obvious reasons.) Ultimately the conversation produced a list of “hats” – the many kinds of help and support an advocate can provide. It wasn’t a list of services, such as the list we’ve included on the AdvoConnection Directory site. Instead it was more about benefits and support. So I share this list with you today and invite you to add to it below. Each hat completes the sentence: An (independent) advocate is a _________________. Of course, not all advocates wear all these hats, but all advocates wear at least some of them. So, advocate fashionistas… What hats can you add to the list?  An advocate is a guide (navigator) to the healthcare system. This one is probably the most descriptive of an advocate, no matter what services he or she performs for patient-clients. It’s perhaps the most ‘classic’ of job descriptions in advocacy.  An advocate is an expert. Advocates are experts in finding resources and uncovering options in the healthcare system. We are also experts in everything else listed here.  An advocate is a teacher. Helping clients to better understand everything from their diagnoses, to treatment options, to pros and cons, to why one surgeon might be a better choice than another, to how to ask questions…


 

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The Biggest Risk in Life: Are You Living the Life You Want to Live?

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The Biggest Risk in Life: Are You Living the Life You Want to Live?

A few days ago, I heard from Beatrice (not her real name), an APHA member who has been successfully running her patient advocacy practice for several years.  We met a few years ago when she and her husband attended APHA workshops. I’ve been impressed ever since with their go-getter attitudes and their ability to create the business they wanted to have. Until this week. Beatrice, a young advocate by our typical demographics (I’m guessing her age here… maybe late 40s? possibly 50) wrote to tell me she had suffered a heart attack in December. Yes. Really. She is now working to get back on her feet, which includes (as you can imagine) realigning her life. She has been told she must eliminate the stressors she deals with. Within the blink of an eye, Beatrice’s life changed dramatically. Suddenly all her hopes and dreams took on a new meaning, and will require a new approach, if they are possible at all. Here is the statement that will take some of you aback: Beatrice’s heart attack may well turn out to be a blessing in disguise. I say that because I know it to be true. I also “suffered” one of those blessings. In 2004 when I was diagnosed with lymphoma and given just a few months to live, it brought my life’s trajectory to a halt. Literally – a halt. As difficult and horrible as those next several months were, as I struggled to learn more about my diagnosis, fought off the greedy doctors who insisted I start chemo, and put my efforts instead into trying to make the right decisions for MY life, the entire debacle (and I don’t use that term loosely) turned out to be… …a blessing in disguise, and one of the best things that had ever happened to me. How can that be? The simple answer is that, as many know, I didn’t really have lymphoma, and I was able to figure that out. That was certainly a blessing, of course. But the bigger answer is that I recognized and embraced the invitation to really look…


 

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