Officers, trustees, distinguished past presidents, delegates, members and friends, I'm honored today to address a new opportunity for the American association of medical assistants that consists of a new challenge, namely combating FASDs, which stands for fetal alcohol syndrome disorders. I think that's an initialism that you will come to know very well in the years ahead. And also to announce a new partnership with the University of Nevada, Reno and its center for the application of substance abuse technologies in carrying out a grant issued by the United States department of health and human services and its centers for disease control and prevention. I'm honored to share the podium with Cathy Flory, first vice chair of the certifying board. After that, we will have questions and answers. Let's begin by talking about the University of Nevada, Reno. This university is unique in that it offers graduate and undergraduate degrees in substance abuse technology and behavioral disorders. This is one of the leading universities in this area of study. The center for the application of substance abuse technologies is a not-for-profit center of the university and has 20 federal and state grants related to this issue. You can see how this represents a new opportunity for the AAMA in regard to grant opportunities. Now, let's talk about the mission of CASSAT as we call it, the center for the application of substance abuse technologies. The mission of CASSAT is to increase the awareness of fetal alcohol syndrome disorders as well as to bring about concrete change in how the condition of drinking by pregnant women is addressed by health care providers. When you think about it, it's quite an honor that CASSAT did choose the AAMA and the CMA AAMA credential to partner with. We are the only medical assisting association and credential that has this liaison with the University of Nevada, Reno. Some background as to the nature of this grant. The federal government realized that there was a need to intervene in this area and under a previous program they issued grants to various partners such as the University of Nevada, Reno to set up regional training centers. The purpose of these regional training centers was to inform and educate health professionals. The Department of Health and Human Services realized that more was needed than just education. Education of health professionals who would then educate patients. The department realized that the objective should be concrete change in how patients were being notified of this danger and how they were to be motivated to change the pattern of drinking in pregnant women. So the overall project goals for the new program, which is called practice and implementation centers, is to not just inform health care professionals and patients, but to actually make an impact on outcomes. Those of you who are educators and know about Mayer and KAHEP realized the importance of measuring outcomes, tangible results, changes. And that is what the practice and implementation centers, specifically the one affiliated with the University of Nevada, Reno, is attempting to do. We are one of the national partners with the university in accomplishing this goal. The background, again, is that the Department of Health and Human Services realized that an intervention was needed in this area and through its centers for disease control and prevention, chose certain agencies and certain universities that would be able to bring this about. It is an honor to be recognized by the CDC and the Department of Health and Human Services as the premier medical assisting association and credential in this field. On this next slide, you see a list of some of our partners in this endeavor. Notice that we are listed with the American Academy of Family Physicians, the American Congress of Obstetricians and Gynecologists. And I think to have the AAMA as part of this distinguished list really is indicative of how well we are regarded on the federal scene in this day and age. Now, if you'd pardon my lay perspective, I'll talk a little bit about fetal alcohol syndrome disorders. First of all, FASD is not a clinical diagnosis. It's just an umbrella term, as the graphic represents, of a range of effects resulting from drinking while pregnant. The only official diagnosis is FAS, which is fetal alcohol syndrome. That's the most severe of all of the FASDs. The effects may be physical, mental, behavioral, and learning disabilities. And Kathy is going to provide a personal testimony from a family point of view as to the results of fetal alcohol syndrome disorders. FASDs are probably not as well known as many of the other disorders that you see here. But in reality, FASD is more prevalent than Down syndrome, cerebral palsy, SIDS, and cystic fibrosis, and spina bifida. I'm not going to go through the numbers, but it was really an amazing revelation that this is such a common problem, that there are over 40,000 newborns each year who do have FASDs. The essence of the message is very simple. For pregnant women, in regard to alcohol consumption, there is no safe time, no safe type of drinking, and no known safe amount. Amazingly, this message is not always communicated by physicians. In fact, there are some providers that are not aware of this absolute prohibition of alcohol consumption. Remember, FASDs are completely preventable if there is no consumption of alcohol by the pregnant woman. No safe time, no safe type, and no known safe amount. Here is a very shocking fact that only one-third of women are assessed for alcohol use in routine prenatal care. This really is the reason why there is a program to alert healthcare providers and patients about FASDs and to motivate them to change, to either stop drinking or to not stop drinking at all. And how do medical assistants, the double AMA, fit into this? I think you are aware that medical assistants often do screening at the delegation of their overseeing providers. And who better than medical assistants to be able to initiate this screening that is so necessary? And not only the screening, but also a brief intervention, as it's called, to make known to the patient the dangers of drinking while pregnant. Of course, the medical assistant has a vital role in communicating this information to the provider so that the healthcare given to pregnant women would meet the standards. Medical assistants, indeed, may be the key to routine screening. Medical assistants taking social histories would be able to ask patients their history of drinking. Very simple questions. How many drinks do you have a week? By obtaining this information and providing it to the physician, we start on the way of getting rid of this terrible scourge of FASDs. CMAs, double AMA, are essential for the following reasons. We know that medical assistants are able to perceive patient needs. Oftentimes, patients are more comfortable talking with the medical assistant than with the physician. Secondly, by being the communication bridge between providers and patients, medical assistants play a vital role, especially in this area, which has been neglected and can be seen as quite embarrassing and sensitive. A social stigma is attached to this. Also, medical assistants serve a role of being a motivator to patients, to not only inform them of the dangers, but also to encourage them, to motivate them to stop drinking or to not start drinking at all. Finally, as was famously recorded in an article by Dr. Stephanie Tashay in 2010, medical assistants are the glue that holds a practice together by ensuring delivery of coordinated, not disparate, but coordinated health care to patients. At this point, I'm going to ask Kathy to come forward, and then at the end, we will have questions and answers. Good morning. Kathy Flores, CMA, double AMA, MLT, ASCP, and second vice chair of the certifying board. I am honored to present a personal story today regarding fetal alcohol. My parents were foster parents. There were five of us. My mother never had enough kids, so she became a foster mother. And she did take a lot of children that were pre-adoption. So one day, she received a call, would you take this child, recently been born? My mother, of course, said yes. At that time, my mother warned me, I was coming home for spring break, that there would be another baby in the house. And this baby cried 24-7 for over seven days. Shook like you would not believe. Of course, me, being in my 20s, really, I have to come home to this? You know, I'm in college. I mean, it did not, she did not stop. And it was an opening later when I found out, really, what the issues were. So just to kind of give you a little history, my mother noticed that there were some developmental delays with this child. And she approached social services, the foster, and said, I really want to get her tested. She is about six, nine months old. She's not crawling. She's not making sounds like she should. And their comment to her was, no. We don't want anything on her record. Otherwise, she will not be adopted. So my mother, at about 11 months, said, you know what? I don't really care. I'm having her tested. Something is wrong. Took her to the pediatrician. And again, she was under 10% for most of her development, like weight and height and all of those things. So she didn't know, you know, kids can be that way. They did the Denver developmental and some other testing. And she scored very, very low. She was very underdeveloped. At about two years of age, my parents decided they would adopt her. Now, at this time, my mother figured she probably had some mental disabilities. Love can cure anything. As far as my mother's concerned, it just takes a little bit of love. Again, my mother at that point will now tell you she did not realize what that would mean. They kept in contact with the biological father. Again, her name is Joanne, and I have permission to state this. Because of her developmental issues, all they did was drop the E at the end so that she would still be called Joanne, which is called God's gracious gift. At that time, that's exactly how my mother felt, that this was a gift for her. At around five years, she was about five years old, and I was watching TV. It was, I think, Oprah, but don't quote me on that. She was talking, or someone was talking to an author of The Broken Cord. How many of you have ever heard of it? It was about fetal alcohol syndrome, about a father who adopted an Indian child from South Dakota. As I'm listening to this, I was like, oh, my, this is Joanne. This is exactly what is wrong with Joanne. I immediately called my mother, and I said, you need to have her tested for FAS. I think she has fetal alcohol syndrome. Now, at the time, she took Joanne to the pediatrician, and the pediatrician was like, yeah, that's a bunch of hooey, blah, blah, blah. Now, mind you, this is Pennsylvania, rural town of Pennsylvania. That is a critical piece to this story. Again, she didn't let it go. If nothing else, my mother can be very stubborn, so that's where I get it from. Anyway, she did not let the diagnosis go. She did ask social services to see her medical record, and at that time, you were allowed to do that. She read the medical record, and the doctor had written down, mother came in drunk, after birth smelled like alcohol. My mother had no idea, nor would that have made any sense to her at that time, because really, FAS was really just coming about. So, again, my mother contacted the biological father and said, would you be willing to come to a doctor's appointment to discuss this with the pediatrician? And he said, yes, he would. So, when they went to the doctor, the biological father spoke, the doctor, pediatrician agreed to have a specialist come in and look at Joanne, because you have to do certain facial features, tend to be the number one key to FAS. So, she had to wait about a month, because there's only one specialist, and he is from Philadelphia. He came in, and he said, you know, she doesn't have the facial features. She has the very short toes. I mean, she can't wear shoes hardly, because her toes are so small. Very short fingers, but she does not have the facial features. We cannot diagnose her as FAS. We can diagnose her with FAE, which is fetal alcohol effects, and which is more of a mental disability at that time, is what they were thinking. A lot of you may now hear it as ARND. There's a lot of acronyms with it now. So, again, the facial features were, they measured the width of the eye, basically between the lips, it has to be smooth, and they have a very thin upper lip. Those are some classic facial features. Most of your alcohol babies, FAS, FE, do not have that strong of a facial feature. So, again, she struggled for years with the community, with the school system, with social services, even the medical community, to accept that diagnosis of FAE. They would not accept it. She actually, in the early 90s, contacted Washington State, because they had a large FAS information. She got all kinds of packets, everything like that. They still would not accept it as a diagnosis or as an issue. Joanne is now 31, which, you know, a lot of patients do not live that long. I do want you to remember that when we talk about fetal alcohol spectrum disorder, everybody presents differently. So, they're not all going to look the same. They're not all going to act the same. I can only tell you how Joanne is. She is, has a very low IQ, which is fortunate in some ways that she can receive some services. She is easily influenced. You can convince her to do just about anything, within a certain extent, which I will explain in a minute. She cannot handle transitions. Don't change anything. Do not change anything. She will notice if you move a paper clip, a tiny little sliver, and it will set her off. She cannot handle change. She has detachment disorder. She trusts my mom, but there's really no love there. It's like she can't have that. They just have that what we call detachment disorder. Knowledge base, she cannot do math. It makes no sense to her. Now, I know we all kind of sometimes think that. It doesn't make sense to a lot of us, but she really cannot even make change. She knows what a dime is. She knows what a dollar is, but if you ask her, do these five dimes equal 50 cents, she has no clue. Her reading level is second and third grade. She basically cannot self-discipline herself, which leads to she doesn't understand consequences, and that's a problem. She has tantrums like she's two years old. She can act like she's 16. She has learned how to do that. Think about that. Two to 16 are kind of the same. Again, she's ... Her actual age is that she basically acts as if she's five years old. When she wants My Little Pony for a birthday gift or a My Little Pony cake and social services and says no, she's 31, you cannot give it to her, it is very disheartening that they cannot understand this child. I mean, she's a child, but an adult. It's one of those quandaries. Her main issue is she's very aggressive, both physically and verbally, and that was the main problem with Joanne. Again, not understanding consequences, it didn't make any sense what you did with her. I mean, she doesn't understand anything, any consequences. For example, she was arrested, and I will tell you, when she gets aggressive, she could bring a man down in a heartbeat, okay, no matter how big they are. But she did not understand her Miranda rights. She didn't understand what she did wrong. She didn't understand why they were taking her. She didn't understand any of it. A lot of the fetal alcohol spectrum disorders do not understand these consequences. So my mother had to have a lawyer come in and get the judge to understand this, and now she has paperwork that says that she cannot be arrested. She doesn't understand the consequences at all. So jail would actually be worse for her because when they say, well, send her to jail, she'll learn not to do that again. No, she won't. Five minutes later, she's not even going to know what she did. She cannot put the two together. So again, because there was this lack of understanding of fetal alcohol spectrum disorder, she has had every mental health diagnosis there is available in the book because they will not agree or understand that. So at one point, my mother finally had a physician at Hershey Medical Center talk to the social services, and the doctor said, you need to understand that her brain development was affected. Her neurons are not connecting the way they need to connect. They just don't work, okay? The psychologist turned to the doctor and said, I swear to you, this is exactly what he said because I was in the meeting, can't you just rewire her brain? It's like, I looked at him like, are you kidding me? Really? We'd make a lot of money if we could rewire her brain. So there is still not a lot of knowledge about fetal alcohol spectrum disorder. Again, depending where you are in the country, unfortunately, if you're in an area where there are a lot of Indian reservations, there is more knowledge on the West Coast and other areas about fetal alcohol than there is on the East Coast. There's very little knowledge known on the East Coast. So again, this is just an example of what my mother has to fight with every day with Joanne, who is now 31, my mother is 73, and she is still dealing with these issues, that people will not accept this diagnosis and these are what her issues are. She was put on a medication because of her verbal and physical aggressions. She did attack my mother and beat her up, that they had to remove her from the home, and she is in a home and she can only live by herself. She cannot live with someone else, because that's what it is. Now, she also is diabetic. Part of the issue of that is with the medication she put on a lot of weight. We all know some of those meds will add weight. But she doesn't understand consequences. So if you think about that, you have someone who is diabetic who doesn't understand the consequences of having a cup of coffee and putting in 25 packets of sweet and low, or having a whole box of 24 pierogies, or having four liters of soda in less than a day. So even if you teach her, she knows that she shouldn't do it. She knows that it could lead, but it doesn't make any sense to her. Even if you say, you know, you could lose a leg or an arm, okay, there's no consequence value there for her. So again, this has been an issue. The family has all been educated. All the grandkids know about it. They know what her issues are. My daughter, when she walks in and sees somebody with a glass of alcohol, there's no stopping her if they're pregnant. That's good and bad. You sometimes shouldn't do that in a bar with some areas. But she will do it without a heartbeat, because she will say, you do not understand what one sip could do to a child. Again, it depends on where they drank and that development of that child. So Joanne may be slightly different than others, because the mother drank maybe at different times. So the mother did go into rehab, and thus she gave up the baby, because she knew she couldn't take care of the baby. So again, I want you to think about, as medical assistance, it is very critical to be able to do this intervention, this screening. That person who is pregnant may be putting that child up for adoption. And those adoptive parents may not know, or may not know that she did not get the prenatal night care, or maybe doesn't know that the mother drank. And again, or it could be anybody. It doesn't have to be somebody who's giving up the baby for adoption. You see this a lot with Russian babies. Have any of you known anyone who's adopted someone from Russia? They have a lot of the same exact issues, because they have a fetal alcohol effect condition. So again, this is a larger issue than any of us can ever imagine. And until you live one day in somebody's shoes that has to fight for services, fight for somewhere for someone to live, fight for their medical care, fight for them to agree to follow the doctor's orders. Because as far as the state is concerned, if she's over 21, she can do whatever she wants to do. We don't have to have her follow the diabetic if she doesn't want to. And to fight for that child who basically, that's what she is. She is a child. She will never be more than five. And God bless her. We, every year, get together for a family reunion. And because she's five, comes in, and when she gives little gifts, they're things from the dollar store. And we all, you know, this is great, Jen. I really needed this ruler, and this eraser, and yay. We respect her. We know her. We know her challenges. But the community doesn't understand. They don't understand how you could prevent this. This child didn't have to be this way. So again, I just want you, I thank you for the opportunity to express my story. And it's only the ice, top of the iceberg with the story, because I could go on for hours with the issues that occur without the knowledge of what fetal alcohol is and what alcohol can affect a child. Thank you. Thank you, Kathy. I'd like to give all of you an opportunity to ask questions, if any of you would come to the microphone. I want to stress this again. Very simple. No safe time, no safe type, and no known safe amount of alcohol consumption for a pregnant woman. Now you might want to know specifically how is the AAMA going to be involved in this. The University of Nevada, Reno, with the CDC, is putting together an FASD 101 class that will be an online continuing education course. It will be available probably in early 2016 on a website of the CDC. There will be a link on the AAMA website to that FASD 101. That is an initial step. Also, the Continuing Education Board of the AAMA will be working with the experts from UNR and CASAT to put together other continuing education modalities that would be able to equip and educate CMAs, AAMAs, so they will know how to react, how to do the screening, as Kathy mentioned, the brief intervention, the motivational interviewing. It's so essential that we as an association and as professionals take up this crusade to combat FASDs.

American Association of Medical Assistants

University of Nevada Reno

fetal alcohol syndrome disorders

grant

substance abuse technology

educating healthcare providers