Public Health, Welfare and Labor Committee- House

First order of business days house bill thirteen oh one president Clowney you're prepared to present house bill thirteen or. Thank you Mr chair good morning committee with the tears permission I'd like to invite two people to the table to help me present this bill certainly. If you could you state your name for the committee and who you're with. My name is Shannon Barringer imagine a counselor in the state of Arkansas. And women Reacher I am an OPG land in the state of Arkansas. Reserve cloudy recognized president thank you Mr chair a good morning committee this morning I bring you H. B. thirteen oh one which would create a narrow but critical exception to our state's total abortion ban when the baby is diagnosed with the condition that is incompatible with life. This exception is exceedingly narrow I want to be clear that it only applies to women whose babies have no chance of surviving outside the womb. Since our state's total abortion ban went into effect I've heard about this particular problem with the law more than any other. From families many of whom identify as pro life who feel that this particular issue is simply misunderstood. And we all know that debates around this abortion ban an abortion in general can often get incredibly heated and divisive and I want to be clear with you all of that is not why I am here today I am not interested in being either one of those things I'm I'm here simply to represent those families to tell their stories and to explain how this one likely unintended consequence of our current law is impacting our Kansans grieving the loss of their much wanted babies. The first question I'm usually asked when I talk about this bill with people is what counts as a fetal anomaly and compatible with life. And I just wanna apologise in advance because these descriptions are going to be hard to hear they're hard for me to say I assure you they're much harder for families to hear from doctors about their babies. But it's the truth and so we've got to talk about it. I'm feeling normally is incompatible with life conditions where for instance crucial parts of the baby's anatomy of the brain the skull the kidneys fail to develop we'll hear from them experts in a minute who can go into more depth about what those conditions are and how those diagnoses are arrived at but be assured that these can this exception would only apply to those conditions where the baby has no chance of surviving. Under current Arkansas law women who have gotten the devastating news that their babies won't survive outside the womb in other words women who are suffering more than most of us can ever imagine are are forced to suffer even more. Many of you are parents on this committee and you likely remember your twenty week scans the one where you get to see your baby up on the big screen where you get that really deep thorough look at the baby's anatomy on the one where you typically find out if you're expecting a boy or girl. In Arkansas today mother could find out about twenty weeks screen that she will be leaving the hospital with her baby because her baby developed without critical anatomy and therefore cannot live after birth. Previously one option that her doctor would have given her in that scenario would have been to induce labor and deliver her baby early but now that early delivery counts as an abortion under Arkansas law so under the new Arkansas law that mother would have to indoor twenty more weeks of carrying a baby that she knows has no chance to survive so to go to the grocery store shall have to have strangers reprobate Lee ask her how she's feeling ask if the nurseries done if she's chosen a name. Shall have to enter full term labor and childbirth potentially major surgery if the baby's condition makes a vaginal birth too risky and then after all of that and without any chance that the outcome ever could have been any different she will leave the hospital with no baby. That's all if a baby survives to term but many of these babies don't survive that long. Without this exception many mothers whose babies are diagnosed with one of these conditions. Will lose what would have been their only chance to hold their babies alive. My friend Carrie was one of those mothers. Her daughter eva was diagnosed with anencephaly failure to develop parts of the brain and skull her nineteen week scan. Carrying her husband dreamed of meeting about a life. But because it could induce labor early because that was banned under the portion law. Even died before they got the chance to. Babies with these diagnoses will die almost immediately after childbirth. Every time. But many of their families want the opportunity to hold them alive even though it will just be for minutes. They want the chance however brief to hold them alive to kiss them alive to baptize them alive and it may sound sensational but it's true by allowing early deliveries more babies will be born alive. So that's what this bill does obviously few of us can imagine the devastation of receiving one of these diagnoses and mother may well choose to wait until she's full term to give birth in these instances that may be how she chooses to grieve her loss but you should also be able to choose against the physical and mental risks of carrying for months and then birthing a baby whose body is incompatible with life the state should not dictate to these mothers how and when to grieve their nearly incomprehensible losses. I'm at this point I'd like to turn it over to the medical experts to explain a little bit more from the medical side and answer any questions that you want to have. Thank you I first just want to express my gratitude and to be able to share my knowledge my experience my expertise most of us I come from a place where we don't a follow the day to day workings of government but it is this type of moment that reminds me how blessed I am to be in the United States. My name is Shannon Barringer and like I said earlier I'm a genetic counselor what is a genetic counselor I think there's a lot of misconceptions about that profession I have a master's degree in medical molecular genetics and I've been fortunate enough to work in Arkansas for over twenty five years I've trained with learn from got to work right beside some of the best obstetricians and pediatric specialists in this state it is a professional allows me to help families learn about hereditary medical risks for things like cancer and and other conditions I get to educate the public about certain genetic diseases and diagnoses and I unfortunately spend some of my time grieving and and providing crisis counseling to families who receive a lethal diagnosis whether in the prenatal or adult period of periods of their lives. so again I'm grateful to be able to talk on behalf of some of my patients most of the pregnancies that we see in our high risk clinics in the state turned out to be very healthy and happy and I'm grateful for that but there are some that don't and that's what I want to talk to you about today and be very clear like representative Connie M. in what those diagnoses are so I mention a few of them here and I will describe them so that you can understand from many of you a layman's term from when it's terms what that means. So the first I want to mention is bilateral renal agenesis this is a condition where the kidneys do not form at all there's no read American Menteri tissue in because the kidneys don't form the baby cannot urinate there's no amniotic fluid and because there's no amniotic fluid lungs will never develop a lot of these babies die in utero but some make it to term this is a diagnosis it's very difficult to make it's a process and I'll go through some of what that process is like with you so that you can understand the the way that we help manage these pregnancies but is not often made until the mid to late second trimester of a pregnancy or confirms another example is and insightfully like we mentioned earlier it's up the most severe form of neural tube defect experience an auger first can diagnose that at thirteen fourteen weeks but most families do not find out until they're twenty week ultrasound and that's where the cerebrum the cerebellum this call the skin over the skull do not for. Last one I'll mention is something called triple AT ITS second genetic condition where a baby has an entire extra set of chromosomes that exercise that interferes with normal growth those babies are severely growth restricted as are their organs they don't function well and unfortunately those extra chromosomes are in the placenta as well and they can turn malignant and because invasion of maternal organs and body cavities. I'm not talking about the most common genetic diseases or birth defects that most of us are familiar with we may have friends with or have acquaintances with diagnoses like sickle cell disease or cystic fibrosis or spina bifida or down syndrome those are conditions that can be medically managed intellectually manage developmentally manage very well I'm not speaking of those I'm speaking of the ones that will result in death and there are very few of those specific diagnoses where as professionals we feel confident in saying there will not be survival we tell patients if we're not confident in that and we sometimes tell them this may happen but we can't be sure and again those are not diagnoses that I considered lethal anomalies. so what happens when a patient comes to a high risk clinic that I may work with as they may get an ultrasound we are very suspicious let's say for example that we can't see kidneys The ultrasound for bilateral renal agenesis can be difficult because there is no amniotic fluid sense of sensitivity is decreased and so we may talk to the patient and say we're very suspicious about this but we need more information. So would a twenty week scan we may bring them back in a couple weeks and look again or we may send them to children's for a fetal MRI which is much more sensitive. If the diagnosis is confirmed then as a team our maternal fetal medicine high risk obstetricians are neonatologist our pediatric radiologist discuss the case first come to a consensus on the diagnosis and present it to the families we have confirmed that this baby has no kitties. We then as a team talk to them about what their pregnancy management options are at that point so it is a process it's not where one physician is making a diagnosis it's not one study that's making a diagnosis it is multiple people using their expertise in their knowledge and experience presenting that information to a family. The and the types of specialists that are part of our teams are really varied and it depends on the specific diagnosis that is made but once a month we meet as a very large multi disciplinary team we have the high risk obstetricians and radiologist we have the ultrasonography is the geneticist the counselors we have pediatric cardiologists neurosurgeons in this case urologists and nephrologists we have social workers and palliative care healthcare providers. Meet and discuss the diagnoses that we consider to be lethal we talk about the best options for the family and we present those to them as a team so that they can have all of their questions answered discuss what it would be like to continue the pregnancy to term discuss what it would be like to deliver early it's a very thorough process and it takes time and it takes time for the families to adjust to these diagnoses when they first receive them. I want. These patients. To be able to stay in their home state to deliver their babies early I want them to be surrounded by their families and their friends for their support team. I want them to have their own trusted physicians and nurses beside them I want their religious clergy to be able to come be with them at the hospital I want them to be able to have pictures made and hold their baby alive and spend as much time with their babies as possible I want them to have the expertise of funeral homes in the state that can provide a loving memorial cremation or burial service I don't want them to have to worry about traveling out of state and arranging all of that and being with people that they don't know and don't trust. So how common are these diagnoses that we're talking about they're not very common. As I said earlier most pregnancies in Arkansas are healthy. And result in a baby who's going to have a great life whatever diagnoses that may have. I am I can only speak and give you estimates with regards to numbers because I don't work at every hospital and clinic in the state obviously but in two thousand nineteen our team made a lethal diagnosis in the thirty eight pregnancies. In twenty twenty it was forty four and twenty twenty one it was forty three and last year it was thirty three. So it's a very small number of diagnoses that are made like this and of those diagnoses less than thirty percent of the families chose to deliver early. So we're not talking about a large number of people that make that decision. But they are the families that need our care and our support and our long term guidance the most. there are many obstetricians and hospitals in this state that have very solid group Perry Neil grieving programs in place already that can help our patients receive these diagnosis I know personally having worked here for so long the groups that Conley regional in Washington regional and Baxter regional on any a and Jones per and widely in Texarkana that have fabulous healthcare providers that know what it's like for their patients to lose a baby and to be able to help them through that process. you a mess of course Baptists in little rock north little rock the just a number I'm sure I'm missing quite a few but there are specialized people that can help our families get through this process and our team of experts is always available to assist when that's needed. if I could just share and. A personal experience with one of my family's recently They too can for their twenty week ultrasound and received a very unexpected diagnosis of an unsettling. The family I've grown very close to we talk all the time and subsequently they've had a very healthy and happy pregnancy so I got to be a part of that as well. But Miller was diagnosed with anencephaly at twenty weeks and Getting through some of the initial shock took a little while but after discussing their options with our team they chose to deliver early in another state. At twenty three weeks the financial cost of this family the emotional cost of this family. And even in the mother's case the potentially medical costs to her health was overwhelming. I think they paid over twelve to thirteen thousand dollars in total to be able to deliver no early and that's their family very modest means so that's not something they're going to recoup very easily this isn't twenty twenty. While IBM knows that they treasured the moments that they had with no up. I also am confident in saying they would have preferred to do it here with their health care providers that they loved and trusted and with their families by their side so that they could say goodbye to know of. No is revered in that houses pictures everywhere and you please share his memories with his sisters and talk about him quite a bit and I think one of the reasons that they're comfortable in doing so I'd like to think is because I help them through that process from afar but I could not do anything to help them. With that early delivery decision. So again I'm talking about very specific diagnoses I'm talking about. Very few number of families. But I want to be able to help them and I know that the physicians whatever for specialty that there and want to be able to help them as well we know what the result is going to be. Let us as their own health care providers please help them through that in their own state with their own support system. These decisions are never made lightly. These are babies that are very much wanted. So again I thank you for your time and and willingness to listen to me I greatly appreciate the opportunity. Thank you Shannon for those Really wise and and words of experience really appreciate that and my name is Luanne ranger and I'm a board certified obstetrician gynecologist here in Little Rock Arkansas and I've been in practice for almost fifteen years and I've had experience with several patients whose and four children have been diagnosed with a lethal condition and again thank you for taking the time out of your data here at this bill and and to offer discussion and for these families. I absolutely love what I do and I think you can hear from Shannon that she loves what she does to So as an obstetrician my job is to diagnose pregnancy care for a woman throughout the entire time of her pregnancy Walker through what it's going to be like to be a new mom to to grow her family to make sure that she's healthy and to make sure that her baby is healthy and most of the time this is a very beautiful process and can be very straightforward and and sometimes I joke that that I'm probably not needed in a lot of pregnancies because our bodies are just so beautifully designed and where we're able to to carry pregnancies and have children and and that's what. What the whole world is is made to continue to do And so you know and it was actually through my own first pregnancy where I just I felt this calling to become an obstetrician and my daughter's nineteen now and sheen definitely makes it known that she was the reason that I went to medical school she she makes it clear that that she takes credit for that And while pregnancy and childbirth is beautiful for a lot of families it ends in tragedy. And so Shannon spoke about some of the lethal genetic conditions and physical anomalies that can be diagnosed and I'm born children and I wanted to be clear we are not asking for early delivery of children with down syndrome with children with holes in their hearts with children with a condition that would cause a difference in their quality of life or an intellectual disability those are all very treatable conditions those are part of what makes us all different they make as individuals and just because someone is is different than what we expect is quote unquote normal to being does not mean that they're not in that that they're not valuable they are valuable in their life is valuable. We are talking about lethal conditions where this child would have no chance at living longer than a few hours today's. To be considered lethal the condition. I must also not have any medical intervention that could prolong the quality of that are prolong that child's life and give it any meaning quality of life Most of the time physical interventions for these children can be painful and futile and so by feudal I mean that no matter what we do to try to heal or cure or treat that child's condition we cannot make it better. As a physician that's hard to say my job is to make things better my son is thirteen and he's in science class right now and he actually came home the other day and he told me mom I think I figured out what the hardest part of being a doctor is I'm like what is that and he said get your gloves on we had to put gloves on and science classes today and it was really hard to get those gloves on and I but once you get your gloves on it's easy and I said what do you mean easy I think that getting your gloves on to be the easiest part he said what your gloves on you just gotta fix what's wrong and that's true. Sometimes we can't fix what's wrong. I'm Shannon has really given us some really great examples of lethal conditions Children can be born without brains they can develop without a brain and that is not compatible with life they can develop without kidneys or lungs and that's also not compatible with life and we hear about lung transplants we hear about kidney transplants those are very viable options for older children and for adults but for babies who are born with out those organs or the out functioning organs there's not an option for transplant for those children. Also devastating chromosome abnormalities like triploid that Shannon mention there's no cure for that and there's no treatment for that and we can't do anything to change that diagnosis. When a baby is born with a lethal condition there provided comfort care not resuscitative care resuscitative care is where you place Ivies and you give medications to save lives and you do chest compressions and you try to give oxygen and maybe put a breathing tube to give support but come for care is much different comfort care is where the baby is not poked with needles a baby is held by its family is kept warm and is made comfortable while we wait for passing and that is the type of life that these children are going to have for their few hours maybe days of their life. Families are allowed to hold their child to spend time with their child and these may be the only moments they are given and to allow them to have that time without necessary without unnecessary medical intervention is priceless for these families. I want to stress how desired these children are and. Representive County alluded to the fact that abortion to be a very divisive topic and and it can be a very Political topic to discuss this is a separate sets of of families these are families who have prayed about their children who have have thought about the lives of their children who may have have gotten nurseries together who have had gender reveal parties who have had baby showers these are children who are wanted and these families would do anything to fix or to help their child but there are just no options available from the medical community for some of these diagnoses. I'm diagnosing a condition as lethal as not made quickly or lightly and I think and I think we all have have friends or acquaintances who were told that you know so and sos child was giving a low chance of living or are told that they would likely not make it past their fifth birthday while those that those conditions are difficult and tragic that is not a lethal condition that is not a condition that we are talking about when she in and very well describes what it looks like when a high risk group of physicians come together and look at all of the information available and make a team multi disciplinary a decision on what we can offer this family and this child for intervention and sometimes that answer is there's only comfort care that's all we can offer. For some families and early delivery maybe the only opportunity they have to meet their child. Unfortunately when ever we have an unborn child with a leaf anomaly they are at increased risk of passing away while they're still in their mother's womb we call that injury or in fetal demise or an IFT in the medical community It is a very devastating loss for a family especially once they've gotten this diagnosis that once your child is born here she may not will not live and may not live very long. To then leisure time before you get the opportunity to meet them can be another devastating loss. About five to six years ago I cared for a patient and and I'm not gonna use names because I'm I wanna protect privacy as much as as possible but I am about five to six years ago I cared for a patient whose baby was diagnosed with a severe land body while the fact. And this was a very difficult conversation that we had and again we went through the entire procedure we did all kinds of testing and imaging and it was she was very much The denial was kind of her her go to response initially and she sought second opinions and was told exact same thing that that this child would not live after birth for very long and so as she came to she came to that realization she then went into preterm labor and she came and she delivered actually very quickly But she was able to meet her son while he was still alive. And she has thanked me profoundly for that opportunity She still in court he is a part of their family she has gone on to have two beautiful pregnancies that that the children are doing well and and that sign is very much a part of all of their lives and they celebrate his birthday and they ain't they involve him in their their family discussions and and when she's asked how many children do you have she has three children and she tells the story. For other families. Carrying a pregnancy to term and knowing that their child may die or will die soon after delivery is unbearable and this can impact not only their mental health but also can delay future fertility we know that women over the age of thirty five or more likely to have a baby with a severe anomaly and any delay in being able to conceive again can reduce their ability to set to have another pregnancy so for a woman whose thirty eight thirty nine forty forty one who is given this diagnosis of a lethal fetal anomaly continuing that pregnancy for four to six more months can greatly impact her future fertility and her ability to try again. Senate spoke very eloquently about the cost of the of traveling out of state and currently under Arkansas law any families who are diagnosed with a lethal fetal condition must travel out of state if they want to deliver early. Last year I had a couple with a very highly desire pregnancy they had suffered a miscarriage a few months before they got pregnant with with this child and then they received the diagnosis of triple eighty. and Janice spoke this is where the child has an extra set of chromosomes it does not develop appropriately it's very small the organs are very small and non functioning and it is not compatible with life and her daughter was expected to live just a few hours after birth. And and she and her husband really struggled with the decision of what to do but she felt like the only opportunity the opportunity to travel out of state to deliver her daughter to meet her to greens and B. again to move on with with her life after that process was was the best route for them and for their family and so she left Arkansas she left the support of her friends and her family she left her trusted obstetrician and medical team she left her her church family. And she delivered her child out of state. And then she had to make arrangements to bring her child back for burial. Not only did this take an emotional toll but the financial ramifications of having to leave Arkansas for this procedure or massive. Also preventing preventing early delivery can be harmful to the mother and certain caught in certain conditions so I had a sixteen year old whose baby was diagnosed with hydrant and safely and we've spoken a little bit about an incident and simply and that's where the the top of the head the top of the school doesn't develop the brain doesn't develop and hi Jane and softly is a little bit different and that the school develops but the brain doesn't develop and so in a baby whose school doesn't develop the head is very very small but in a baby who has a school and then just has fluid where the brain should be that had can get very very large and so. The sixteen year old girl. Carried her pregnancy to term and then her baby's head was too large to allow for a vaginal delivery so then she had to undergo a caesarean section which modern medicine is wonderful cesarean delivery overall is a very safe procedure but it's not without risk and it also impacts her ability and the safety of her future pregnancies the more C. sections a woman has then the more likely she is to form scar tissue around her internal organs the more likely she can have what's called the morbidly adherent placenta without placenta grows into the scar and then that becomes a life threatening condition and so the route of delivery for this pregnancy ultimately impacts her her future fertility and her future pregnancies and makes all of those future pregnancies higher risk. In general pregnancies that are complicated by fetal anomalies are at increased risk of other and poor outcomes so mothers are increased risk of high blood pressure they're at increased risk of preeclampsia they're at increased risk of seizure and stroke and yes we deliver for those conditions but if a woman was diagnosed are there her child was diagnosed with a lethal fetal condition where that child would not live whether you delivered at twenty weeks or forty weeks than delivering early could prevent some of those poor maternal outcomes. In conclusion. No one wants to see a child suffer. And I cannot ever imagine having to make the decision to withdraw care from either my children that I've talked about today. Just as we would allow a family to stop cancer treatment for their child when that disease continues to spread despite treatment. Or just as we would allow a family to lax to withdraw care after tragic tragic tragic accident where the child cannot recover. Family should be given the opportunity to decide when the right time to withdraw care for their unborn child is as well. Thank you. Committee members are there any questions for representative you're recognized. So. Thank you for thank you all for your testimony question I have is. I mean they obviously this is extremely emotional painful situation of families go through when they have to make these kind of decisions and. Can you kind of just tell me what's the difference. If they carry a child you describe carrying the child to term and this kid get a better had the young girl haven't have a C. section and all. So is it is it in many cases it less risky to deliver what I'm getting is it less risky delivered earlier. And and what does that involve a firm terms of delivery is it similar to the normal delivery and and what was the other thing I was well just go with that for now sure Sir thank you and so if if she had been allowed to deliver early then we could have induced her leave her labor and she could have delivered vaginally or in the normal way that we think of when someone delivers a baby Because they had would not have grown that large I'm sure she could have been given the opportunity to avoid a C. section had she been allowed to deliver early and and as far as difference in outcome the outcome would have been the same whether that child was born at twenty weeks twenty eight weeks forty weeks that child did not have any chance to live longer than a few hours okay the one follow up so in the child that doesn't have a brain and its phallic child is there more risk to the mother equally as as it is with a child with a large head because they have it's just fluid so they have a small and it should ballot head and you're going to attempt to a vaginal delivery at that term is it is I mean saying that that they had small other gonna have normal labor they have are they at higher risk for having have C. sections and and that sort of thing they are not as at increased risk of having to have a C. section with the head being smaller they are often able to deliver vaginally okay by continuing the pregnancy does come with with some risks of high blood pressure or preeclampsia seizure stroke those kinds of things most of the time when families are choosing to make the decision to deliver their child early they're not thinking about those risks as a doctor that's what I think about most of the time families are focused on their child and is there anything you can do for my child if we deliver him or her today tomorrow in six weeks and ten weeks in three months and the answer in these cases is universally no there's nothing else we can do for your child But we can prevent risk to to the mother. Thank you Mr. President Bentley. You're recognized for a question thank you chairman thank you all for being here today so do we have a time ever that the reports are incorrect so I'm just looking at reports from a John Hopkins where there were times that forty percent time the tests were incorrect so can you dress that for me. I'll start and then election and address that to you and. I would like to know what if it and if you have more information what those types of reports are physicians are not perfect we know that any physician that tells you that they're perfect and they never make a mistake is a lot here you probably should get in the physician but positions are not perfect and that's why we were making such. A life changing diagnosis we don't do it alone we do it with multi modal testing we look at babies from all angles we do multiple ultrasounds we do fetal MRI eyes we do fetal echocardiograms where we look specifically at the heart we there are all kinds of formulas to calculate the longer the longer law ends and and the chest circumference and all of these things that come into play of will this child have a chance at living and then we don't make that decision in a bubble we include high risk physicians genetic counselors fetal specialists meaning the pediatricians the neonatologist who will actually physically provide the care for that child once it's born any any pediatric surgeons that may be involved in making a plan for possible surgical correction if it's available all of those people come together and make a decision as a team anyone who has a doctor say your child will not live and that decision is made off of one test in with one physician that is not what we are talking about and again that is that is not the standard of care it is a multi disciplinary team approach to making these diagnoses. Follow UP chairman. Thank you for that I don't have them the blessing of working at children's hospital for a long time and took care babies that really some had no Given a chance of life you know some submitted some did not so I just and what's parents and I'm going to go over the questions of them and I did watch parents and how much it helped them to hold that child living or dead to have the chance to know they did everything they possibly could to get rid of that so I am very concerned that we're going to give um this in depth depends they didn't do everything that they possibly could At the very and I know there's this this the mental anguish to the parents isn't was my concerns you feel like this we're going to cause mental anguish to those parents of thank you know what if what if and to we're removing the what ifs if we do something early and we'll causing one et seq as I'm saying if we go to the very end and do everything we can and we remove that what ifs that might torment them for years so this address of mental health issues for me thank you sure and so I think for some families and and I kind of spoke about about the one patient that that was really having a hard time coming to terms of the diagnostic nociceptive severe limb body wall complex and. That that that disorder is is just really devastating and it's basically where you don't have the front half of your body your organs are completely on the outside and and that is not their babies that are born with just their heart on the outside the just liver on the outside and not something that we can manage but but severe limp body while complex there's there's no way to in case those organs again and so she was really struggling with that and and she went into labor early and she didn't have to face that that choice for that decision of whether she should induce early or to to go to term. And I think that the beauty of allowing the family to make the decision with their health care team as that then they ultimately have the ability to be at peace with that decision whether it is to continue that pregnancy to term and. Not infrequently do we have diagnoses that we don't consider necessarily lethal but we suspect may be lethal and these are not included in what we would potentially offer but these babies then deliver their born we have our neonatology team right there they assess and see if there's care that they can provide and then if they're not able to provide care and then the baby goes for comfort care so in those situations where there's any doubt if there would be any intervention that could could save this baby then they would not be a candidate for early delivery and I think to in the on the mental health aspect side of it if a woman has any doubt even though she's being told by her physicians and her team that this baby will not live if she wants to deliver that baby and have an assessment at the time of delivery then that still an acceptable form of treatment so it would not be that and encephalopathy is automatically sent for delivery early it would be a decision made with the family with the care team for the best course of action for that family. Refers and you're recognized for a question. Thank you Mr chair of it seems like most of these conditions are developmental but are any of these lethal conditions predictable by genetic testing of the parents. And the short answer to that is no. genetic testing is still an. Very complicated very difficult to do despite I think what most people understand its capability of doing sometimes we can do genetic testing on a baby will that has been diagnosed with a lethal anomaly after they've delivered and determined there's an increased risk for recurrent so we test the parents and are able to give them specific recurrence risks but there's no test that I can offer to any pregnant woman that says your baby will have you know with the early stages of her pregnancy and so your baby will have this condition and it will pass away. This is insurance cover genetic testing for parents if they want that and have concerns about a family history it entirely depends insurance plan and coverage that they have there's no blanket statement we have to get prior authorizations a lot and there's usually most people have large deductibles so a lot of people end up paying out of pocket but there's no clear answer for that thank you. The questions from committee. D. Ferguson you're recognized. Thank you Mr chair. Of I believe it was the genetic counselor you were talking about. A number of cases. These cases. Are these cases the fetal. Abnormal normality in parable. With wife will come with those cases his numbers I presented were ones that are not compatible with life not compatible with correct so it's a very small number of diagnoses we make every year you know we diagnose babies with a variety of conditions spina bifida cleft lip you know club foot those are certainly not conditions that we would consider lease also the numbers I provided would be the conditions that are not compatible with life are you familiar with how many of those cases that they go full term more so M. again speaking just from my experience with the health care teams that I work with that so that's not close to everybody yeah I'm just talking about it so that you yeah the cases that I've been involved with in the past forty five years twenty eight percent chose to deliver early. And the remainder chose to go to term. None of those. Babies lived they did not. Okay some may have died before they were delivered some may have died in the delivery process some may have died like Dr Reiter said a few hours or a day after they delivered. So the thirty eight forty four forty three thirty three correct from twenty nineteen to twenty twenty two none of those cases. They do not you and we keep track of those numbers we're part of a larger program of a contract that medical centers have with Arkansas Medicaid so we keep track of those numbers very closely and report them. One local questions the chair yes. When we talk about this team. Which would include. What kind of doctors honesty. So the team usually is made up of the first the first obstetrician that the patients seen usually these women are seeing a low risk or regular obstetrician their high risk maternal fetal specialist that's an obstetrician who has gone on and on a fellowship in maternal fetal medicine so as a as an OBGYN I've done medical school and then four years of training to be a general OBGYN then after that four years of training in an MFM or maternal fetal specialist would go on and do three additional years solely for training in the treatment of complex and high risk maternal and fetal conditions so that that representative that that MFM Dr has had additional training usually it's more than one MFM Dr we there are usually two to four MFM physicians involved in the discussion. Then we have a neonatologist this is a pediatrician who's done medical school three years of pediatrics residency and then fellowship and I'm not one hundred percent sure on the link that that fellowship I believe it's either two to three years specifically for the treatment of newborn babies they provide care in the Nick you they are the ones that take care of the really tiny babies that are born early or the babies that are born with severe health problems and require an icy you stay in intensive care unit stay after their delivery. and that's usually add another group of them it's not usually just one usually there's two to four of those that neonatologist involved in the discussion as well. We also bring in our radiology experts we have a pediatric cardiologists who reads all of the echoes or the older sounds of the heart we have pediatric MRI specialists who read the MRI is that we look at the brain and the lines and the kidneys and then we also have potentially will have pediatric surgical specialist so for example and if we had like a very complex heart defect is that something that is potentially either operable upon delivery can that shall be given medications to keep that the neonate or the the foetal openings of the heart that the fetal heart is very complex and I don't wanna lose you guys on it but there are changes that happen at delivery you can prevent with medications that can keep the heart to function in some capacity to prevent death or or decreased oxygenation so we have all of the specialist involved to see is this child a candidate for any intervention that could Purposefully. How long this child's life which team of four representatives and I'm sorry I do have another question from okay you can put me back into back into this conversation road you're recognized for a question yes Sir thank you Mr chairman during your testimony you mentioned a few different conditions that may not be the right term but that these were certain death sentences there is no possible treatment options there is no alternative ending other than death and you mentions children born with no kidneys I believe that's I'm a butcher the language but bilateral renal agenesis okay so are you aware of any children being born with no kidneys and survive. So congresswoman Herrera Butler in twenty thirteen gave birth to a child she's ninth woman in Congress to give birth to a child that had no kidneys and I think she received thirteen hours a day of dialysis in an H. two received a kidney from her father I was ten years ago A year or two ago she was in eighth grade reading on ninth grade level perfectly healthy and you can find countless other examples of children born with no kidneys and then later once able to reach around the twenty two pound mark are able to receive a kidney if the transplant and so I'm a little confused. When we were just told that this is not compatible with life there's no alternative but death. And then there are it examples where this is compatible with life can you speak to that. So I'm not familiar with that particular case I don't know if she in as an election and speak to that but I will say In. Not an result and not into the specific case I want to hear what Shannon has to say because I'm not familiar with it. Four lines to develop you have to have kidneys so I cannot think of a single example where if there are no kidneys and there's no amniotic fluid. Sailing for the amniotic fluid and allow the baby to develop lungs when they're born they screamed and didn't have kidneys when they're born. So I would say that's not standard of care and that's not acts that care is not accessible by the majority of people John top Johns Hopkins was the one who did it first ten years ago and it's been done since then so I would just say and I definitely want to hear testimony but I would say that it's been done. Audible times and is proven to save the life of a child so I just it is not standard of care nor is it available in Arkansas I'd like I'd like to just say aye and shaking your head no and there's a there's a child alive several who went through this so yes that's all those alive because the other was hooked up to saline injections for the most up portion of her pregnancy which allowed long development that was done as part of a clinical trial with Johns Hopkins which is did expand to several universities across the country but it has not been proven to prolong the life of all babies with this condition in fact most of the centers have stopped doing that procedure in the audit fluid or saline injections because those babies have died they've not reached the ability to get to a certain weight to get a transplant and you know how hard baby transplants are to get their impossible there may be three or four cases reported but the studies that come off from the original Johns Hopkins trial are closed because they were not working in the vast majority of cases we can argue about one or two or three cases but I know what my medical literature says and the vast majority of those babies die hooked up on dialysis because they can't get a transplant the final follow up and I'll be damned you recognize for I appreciate your expertise I'll just say there's a big difference just in your testimony from now on the vast majority to there are absolutely no alternatives that and in life so with that I'm I'm in Arkansas we can't provide that it within call it would encumber patients and families to travel the closest place that was doing it for a while was Houston they have to stay in Houston they'd have to move their families to Houston they have to deliver in Houston and that child would be in intensive care for two years to three years before and if they can receive a kidney. Most Arkansas families that get that diagnosis will not be able to undergo that before first they've had consultation with those clinics and they've made the decision because they cannot do that. to not go forward with that so called option resent Ferguson give a follow up question you're recognized for a question. Thank you Mr the just to follow up questions on the the team effort of the doctors and I guess my question was would we look at a team of four doctors of five or six of between four and six and if so if the diagnosis of the decision is this the majority of the doctors. It really does depend on the diagnoses so um will bring in the specialists that are relevant to the particular diagnosis so in the case of renal agenesis will bring in the two to three pediatric nephrologists and urologists the children's hospital has will bring in the radiology radiologists that do you feel studies from children's maybe the for for maternal fetal medicine doctors that we have so the team can vary depending on the specific diagnosis and I think my question is when the decision is made. Of the team the fifth three doctors on the team with the for doctors on the team. All three doctors making the same decision or a city three one oh four one or is it a majority of all the doctors is coming to this one particular decision and diagnosis it's a consensus of all the doctors if there's anyone without we really do listen to that okay okay thank you thank you Mr are there any other questions from the committee. C. none we do have some people signed up to speak against the bill Sri Steen. He's come to the end of the table. The state your name for the committee. Interview with. Shuri's dean with family council thank you chairman and committee for the opportunity to speak to you. Family counsel is strongly opposed to this legislation for a few reasons number one the bill does not define fetal abnormality it does not say what it is and what it is not and so that leaves it very unclear for a federal judge to interpret this language and lastly unborn children should not be aborted. Because the doctor thinks that they may have a fetal abnormality so we strongly oppose this bill and we ask that you vote no on SB thirteen not one that would weaken our states already really good pro life laws and with that I'm finished thank you thank you for your testimony Yeah tell seeing. Just in case the Stonewall to speak for the bill. You're recognized cover the table state your name thank you. Hi thank you for letting us be here. Sorry. My name is Chelsea Stovall I am the mother of three beautiful babies two of which are still with us. And I'm just honored and grateful to be here to be able to share winter story. That was last April when I found out that I was pregnant with our third baby. We were so excited to complete our little family. And the per pregnancy was progressing beautifully she was healthy. the genetic testing at twelve weeks came back normal. Senate nineteen weeks we wanted to find out if we are having a boy or girl. What we found out was that My Baby had a giant hole in her chest and her intestines were strangling her heart. She was not going to make it. And was given the diagnosis of not viable. By several doctors I had multiple ultrasounds. Use me. I had different tasks and was seen by a neonatal specialist later that week. But because of the way is that the laws in Arkansas are written my doctor wasn't able to deliver My Baby. I had to travel out of state to a doctor who didn't know me and didn't know potential complications. To help me say goodbye to my daughter. And unfortunately I did have complications. That I know could have prevented then my doctor delivered a baby. I couldn't stay in the state that I love. At the hospital that I trust. With the doctor who flawlessly carried me through to see section pregnancies. I couldn't hug my kids. I couldn't have my best friend bring me comfort food. I couldn't even have my husband in the room when we delivered our baby. I'm sorry. This amendment would save other mothers. From having to grieve the loss of their child away from their support system. As I am still grieving the loss of my daughter winter. Thank you. Sorry I get myself together for a second. And my name is Cody serve on I'm a proud father of two beautiful. My kids. And I was a veteran and I was thinking sorry you can see Kitty thought for me sorry I'm. I'm getting. As you're both welcome to continue testimony to your damage assessment if you want to pass after that so it can can I get mine can I get her to say that I'm I'm having a hard time right now. Represent Claudio thinking give testimony four years so I'm not to let me. I just wanna start by saying thank you for this moment to share a story the conversation is. Is bigger beginning of taking the sarm I need better the last. Thank you Others may take the right step. You know what I'm just not going to read it because of what I read stuff it gets me messed up. We lost our whether our daughter and. I'm going to from the Harkness that's how I do this is I do a better. I was just like a lot of people here I grew up in Mississippi I do not believe in it at all even if they are I will say it rate or anything like that you know. It's I didn't believe in. Until I got my daughter and I went to all the doctors. And they told me all this and I've seen it and yes they were trying to go kind of going around that didn't want to hurt us you know because their doctors are supposed to take care of us. And with that being said I just want to thank you all for hearing us out because I was. Just like L.. Just like was sized. I see bows. This one thank you. Thank you Mr testament procedure being here today thank you can. Centel this being. You're recognized speaking this bill. And I'm showing to this state thank you for the opportunity to share my testimony and I'm not your representing anyone except myself I'm gonna give you some personal testimony and I'm a forty eight year old wife and mother of four. In two thousand five my husband and I carried our second born daughter to term after receiving the diagnosis of anencephalic at our fifteen week order Sam. And we need urgent grace and we were blessed with one hour and sixteen minutes with her before she died surrounded by people who left her well the time period of carrying her term was extremely difficult and I did experience things might have been discussed with strangers asking nosy questions touching me when they shouldn't but and that's hard and you know all of those things were part of our grief journey and being supported through that grief process prepared us to say hello and goodbye in a way that helped us to heal and be emotionally ready we had another child. In the years that followed her does a spoken with many women who've been through similar losses seven person some online that it reached out to me and many of shared stories that on top of the stress of knowing their child without live they have physicians who pressured them to abort and I'm happy to hear clinicians here handle have handled situations with and compassion and have. they're worse as a doctor because a lot of women doctors think that if a baby is not compatible with life it's disposable and you just get rid of it and start over and and I've talked to every day to listen to people that that's been there experienced some of even had physicians refused to continue providing care to them if they refused to abort or deliver early because they're not work their resources and. I'm I mean I'm glad the ones here are like that but even myself when we were sent to a specialist for an ultrasound to confirm the diagnosis it incessantly I had a physician treat me like I was wasting his time. Because my child was going to die and he was very insensitive he would not answer my questions about specific. Anatomy things that I wanted to know and he literally asked me why are you here you already got your diagnosis so even physicians here in our state sometimes aren't sensitive to the value of every last. We are very grateful my husband and I that are clinicians did validate validate our daughter's life and directed us to resources that helped us prepare for her birth and death we attended an event loss grief group also caring and continue to receive support through them for as long as we needed after her death. Our nurses and hospital staff assisted in helping us to create memories and keepsakes that are instrumental in our grief process and we still treasure every item picture in memory from that day. I do know some people deliver early. And in the past when that was available and I do also happen to be a nurse and I've held inferences that died and I've taking care of people that have delivered early and I can tell you is very different to hold a twenty to twenty four week old baby that use delivered early that has transparency in its eyes are still set then is to deliver your child that term when you can see that they look like their sister or they have the same color hair and eyes. And. For those that have found that to be an option that help them I can't relate to that honestly because I felt like it wasn't my choice to determine what day my child died I felt like that was not something that I should decide and I do realize that that's a personal belief. Every. Pregnancy loss is traumatic there is no easier way to lose a child losing a child is hard no matter when it happens whether it's during pregnancy or after we would not take a family who had a child. Unexpectedly diagnosed with a fetal anomaly after birds that maybe wasn't caught or a condition that's fatal we would never say to a parent. Well we can kill it quicker so that you can get it over with. And that's kind of how I see. That. To be blunt. I feel like it's a well minute misconception that hastening the process of loss will make it easier and I also feel like that just denies the inherent worth and value of each individual life. Thanks for testimony resumes you're recognized. Good morning committee and Mister chairman may I have permission to bring Holly unless meeting to the table with me please. It all just state your name for the committee. I'm rose Mimms executive director of Arkansas right to life. Arkansas right to life is opposed to this bill. Early delivery is abortion. And there are complications in every abortion so to say this has less complications and any other abortion is not quite the case. I did want to mention to you there are some on this committee there were actually here back in twenty thirteen when ACT one seventy one the pain capable unborn child protection act was passed by representative Andy Mayberry and has been law since twenty thirteen to in ten years we're none of these abortions have been allowed in Arkansas you know once the baby feels pain at twenty weeks that's what most of these fetal anomalies are diagnosed although some now are detected earlier. And then I also wanted to remind some of those of you on this committee that a twenty nineteen ACT nine fifty three The Perry nail palliative care information act was passed and that was represented Penzo spill and I did want to read from that just briefly. This was in the Legislative findings it says as diagnosis of prenatal conditions improve more lethal fetal anomalies are not diagnosed early and early in pregnancy currently patients are often given minimal options parents must choose between terminating the pregnancy or simply waiting for the child to die the majority of patients parents in situations as described in this section. Choose to terminate the pregnancy with only twenty percent of parents deciding to continue the pregnancy studies indicate that choosing to terminate a pregnancy can pose severe long term psychological risk for a woman including the risk of posttraumatic stress depression and anxiety parents who choose to continue the pregnancy under a supportive compassionate care of appearing idle palliative care team report being emotionally and spiritually prepared for the birth of a child. Studies reveal that when given the option at least eighty to eighty seven percent of parents choose to continue their pregnancies in a supportive environment a period natal palliative care. It is the purpose of this chapter to guarantee that a woman considering an abortion after diagnosis of the lethal fetal anomaly is presented with information on the option appearing natal palliative care. And to ensure that any abortion choice the woman makes has been fully informed so with that I want to just mention one other thing and that is is early as two thousand five. When Holly unless got there fatal legal anomaly diagnosis that UAMS gave them a letter telling them where to go out of state for an abortion they could have gotten one in Arkansas but there was conditions because of the loss that we passed so I want them to share their story now about what their outcome was after that diagnosis. If you could state your name into the Mike please Holly manning this is my husband was just out lessening And okay so the reason I'm here is I was told that our baby had no hope. I was told that is if it were to live or have any type of a life it would take a miracle. it was suggested to me to in the pregnancy. And I was like twenty weeks and that they said I had like ten days I think that. To make a decision I had ten days and if I didn't make a decision within those ten days that I would have to go out of state and they and looking back now it was Kansas where they were going to send me and that was not a good place I just want to say also that I the. I definitely believe in support of a mother to be able to have a child regardless. If they have a death sentence because it's. I think it could be detrimental to a mother to end it any other way for guilt feelings all kinds of types of things I killed My Baby the type of deal and. So lesson I decided that we were not going to abort. And the last thing I was told I kept asking and what's the hope what's the help that's all I wanted to know and the last thing they tell me they said there is no hope zero chance it's gonna take a miracle so I said okay. And and. We went back he had Plural is that he had water all over and it is officially cutlasses sightings is very very rare he had no lungs he was passed the cut that just station part they said he would never have any lines he would never be able to breed you have to be on machines and they painted a horrific horrible nightmare of a picture for me And. So the pressure was on my husband can speak for himself but they. Basically said you know she's out of it she's not hearing what we're saying she does understand the gravity of this and so they went to him which I found out later to talk me into getting it done Which I don't think is very nice to do that and I think it was terrific for my husband you know to to have that Needless to say I decided they kept saying you know no hope no chance in death but this kid was kicking and I mean it could have been more alive I thought how in the world could I into pregnancy that this there's no death here this is just alive child and so I made the decision we went back and. Miracles happen okay he didn't have ones he had lines he didn't have this he didn't have that they all I mean you know they just came right yes and we were blown away and so the moment I just chose not to in the pregnancy I wasn't going to anyway even if I only had five minutes with My Baby. and that's really I guess about it I went ahead and went as long as I could he he did come early he had a few little minor problems that he got through and he is seventeen years old today and he was born on Valentine's and there's nothing wrong with him at all. So I just this morning I was thinking god for bid if I would have killed my son I would have not been able to live with that and that's what I think mothers should be able to do like rose said and be in an environment if they only get five minutes with their child because I I think it would have killed me you know but I did get a miracle. And I the main my main thing is I just want medical doctors and moms to know of course but the medical people have got to understand I've got. All the evidence from here to the ceiling that this kid was messed up. The two two attorneys they said it takes. If I could just read this real quick This is this is from UAMS I believe or maybe it's the. freeway clinic. he they say. Originally we also discussed the possibility of draining some fluid from your baby's chest unfortunately that was not an option. And. They talk about a couple different things. And. It says that the bottom here it says. Two doctors have to agreed there is no hope for your baby. The ethics board has to agree with their assessment the doctors must agree that an induction of labor will be safe for you given your previous C. section and the procedure would have to be paid for prior to having it done Medicaid does not pay for ending a pregnancy. In other words there's attorneys and a lot of people involved and the pressure was on for me to do this and that. Thank god for good husbands I didn't feel the pressure they went around me to him he protected me from that and anyway I'm so glad I didn't do it and so all of this evidence. None of that happened. This state. Bush at. Of real learning curve here and all this. this is our story you know this is in every story and it all it student turnout like ours it did hours are turned out I can imagine if we went through that you know would have a seventeen year old white only if the house today to. Is the last of four and we raised The only I was I have today is basically that it just seems that you know they came in a very hard and heavy you know to go through is something that I would never regretted And Like I said this the this is our stories nine out always turns out so you know I'm just saying basically there's not there is there are really hard situations I understand that but I guess my thing is I just want moms to know and the medical community to know that sometimes miracles do happen and we're not the only one there are other stories around the country that they got miracles to and so I just really feel like that should be. Considered. That's all I got a. Yeah I'll just end by saying that Arkansas right to life is opposed to this bill's we do ask you not to pass it out of committee and every life is precious and has a purpose however long or short it may be in like Holly explained feeling that baby kicking inside her those were precious you know reminders that there is I have a baby in here and to to you know to have an early delivery you know that is that is that prematurely and naturally int'l god wants us to live our life to the fullest and Remember the early delivery is an abortion. So there is hope there can be hope for a miracle and also you're gonna hear personal testimonies of you know misdiagnosis so we'll end our testimony let others come to the table thank you very much. Thanks for testimony John Brown. To speak but she fell ill yesterday and so I had to quickly gonna change this from her personal story to our story from my perspective I guess my name is John Brown a life Lisa. The father four boys ranging from twenty one eighteen almost fifteen and seven. And With her fourth or fourth pregnancy she was thirty eight years old and because the age we know there is a greater risk for genetic abnormalities so we debated it but we ended up getting a test not because we. We would do anything or make any different decision but we we want to be prepared And so we had testing performed and I remember the doctor had said. If if if if everything's fine it'll be somebody from the staff reaches out to you if the doctor calls you then we have bad news. sure enough it was the doctor the call my wife. she called me at work crying and The immediately asked for us to call and going to be with them and basically explained that our child had been diagnosed with trisomy thirteen which is considered not compatible with life and he said in his thirty five years he had not had a patient that had this that had survived they typically died in the womb and if they did make it to birth they would probably die shortly thereafter. So. course that was devastating news for us to hear it took a week to really basically grieve. pray about it and We had a lot of family and friends and in people we don't even know that somehow to prayer chains heard about it repairing force and we decided you know we stuck with our plan which is this is god's plan. Whether we like it or not understand or not so we. The doctor we we are really loving doctor he did not our experience was different we did not have a doctor that encourages to have an abortion he did presented as an option but he did not encourage it. And and so we're grateful for that for his care but they did tell us was not compatible life he refers to a specialist neonatologist and we started me with him regularly and his approach was I think to not let us get our hopes up as well and we would have an ultrasound and even if it looks good he would suggest will it's not presented itself yet and he would prepare us for what we're going to see and we unfortunately did see some things they said he was small for it is just a tional stage there is large cysts on both sides of the brain that can be an indication and at one point even his heart rate was slow and we were admitted to the emergency room for labor emergency labor and delivery and thankfully it it subsided and stabilized and then we had to have heart monitoring every week thereafter. And even then when we were you know I can't describe the peace that we were given after praying about it one where the other. but we were remaining positive getting some good results some bad results and the heart rate even monitoring they said well it's actually to steady it should be occasionally going up and down and we were like you know heartbeats normalization great and they did encourages to reach out to other people have been through this and unfortunately it was right about the week that my wife was that in the person she talked to said yes everything was looking somewhat positive until week thirty two. And we're right at that week and so that made her even more nervous. The both when we we had a scheduled C. sections with my wife for C. section C. section but by the way and of they had the specialist and his team of nurses in the room as well as our doctor and before the. It was early morning before we had the the the secretary they set aside to basically prepare us and warn us what the likely outcome was and at this point they were still not expecting the baby to survive and The doctor had pulled me aside and actually task as me to prepare for funeral arrangements separate from my wife and I chose not to do that We were fully prepared for what was about to happen either way we were hoping and praying. For healthy baby but we were expecting the worst. Air cells and the delivery rooms full doctors. they were gonna take. This section of the cord blood just to confirm. After the birth the case he did survive And test and what I can say is actor was born they took him away immediately and then the doctor came back to the specialist he was actually crying and he just gave me a thumbs up. And He went out to speak to the family. We couldn't get the words out he was crying. but in the. It's to the excitement they forgot to take the cord blood so we had to go back into children's week later. And ultimately they're testing confirm that there is absolutely nothing wrong with their child. And we feel guilty at times hearing the story because I know not every family and and we were in a group of people. that I found that had trisomy thirteen and very few of them had positive results like we did But they were all very encouraging and happy for us it is very difficult time in our in our life but it was also great lesson of faith that we had we put our trust in our lord and savior it was outside of our control And even though is a stressful situation at the beginning I don't know that. I mean abortion is just not an option for us the I'm not here to judge anybody that uses other things it just was not for us and I know that that baby now is in first grade and he's healthy as a horse and as Andreas you can be and has four brothers they're like second father's doing It also strengthened our marriage we we had to trust in each other rely on each other and so I can't I cannot describe the situation and how we had a sense of peace around us about the whatever the outcome is going to be and and it's only by the grace of god we had a healthy baby so we had a lot of people ask us after the fact did we regret having the test. Probably so yes. Because we we weren't going to change her mind either way to the center you angry. And I civil I have no how can you be angry when you have a positive outcome like we did and then third. some said well it's a miracle and then some said well no it's not in miracles just a fallacy of humans creating a test that's not accurate even though we were told it was ninety nine point nine percent accurate so I consider medical either way because that means we're the point one percent that was inaccurate thank god for So. I just know that It's a tough decision for families to be in and I respect everybody's choice in what they think is best for them. But and some doctors are wonderful that sounds like these are this morning that encourage and and comfort their patients and I don't have concerns about those that may have a certain believe a certain way and they're only going to slant their their opinions and and knowledge with those people in one direction and and I have having been had we made that decision and we terminated a perfectly healthy baby. So that's my testimony thank you for your testimony Alexis and. Cecilia Burchill. You can state your name for the committee. Alexis Sicilian we've been here a while to get hungry and fussy. I'm here to speak against the bill the bill as we have seen does not I'm sorry can turn your back on of the hearing the baby fine which is great. Thank you senator she's she's hungry. As you see in the bill does not clarify the fetal abnormalities and we are here to speak against it because this was born with down's. We adopted her we knew she was going to be born with down syndrome but via family grapevine had told us he was going to be born with her intestines outside of. When she was going on and I was not the case. But. Donald trees that that did have to be fixed. So we know that if this were to be. It would be a slippery a slippery slope that. If this is approved land only where do we and. So that are to. Can be avoided are not. Okay so we're just here speak against it and that is all we have to say and it's time to go get one. Thank you so much for being here. President Clowney you're recognized to close for your bill should lie. Thank you Mr chair thank you Committee and thanks everybody that came today to share their stories and other this is not easy to talk about and I appreciate everybody sharing what have been a lot of the the hardest times of their lives and I do want to say that I think I think a thread I think something that we all have in common every person around this table wants to help moms in Arkansas it is clear from the women who I have talked to that having the choice to hold their babies alive will help them grieve what will be an inevitable loss this. The goal of this bill is incredibly narrow it is simply just to repeat to lessen the amount of suffering from others who are already going through something unspeakably horrible and my heart goes out to any mother who has to make this choice I completely understand mothers who would not choose early delivery we heard lots of reasons why mothers wouldn't choose that today they should continue to have the choice to carry determined they would under this bill all this bill do it would you would allow mother to grieve her loss in whatever way she chooses thank you very much. We have a motion. Motion to pass any discussion on the motion all those in favor say aye. All those opposed say no. It does have a. Bills felt thank you for your time today. Members we do have several bills will try to hear between now and noon there's quite a lot of bills are agenda. the city. What right now I think the next thing we're trying to years represent worn here I know you said quite a lot of people here the travel someone to testify. There's representative Warren. We. President when you're recognized to come to the table when president House Bill. Fifteen forty six it looks like you from reading that correctly. Thank you Mr chairman Committee first all apologize for the voice welcoming spring with the allergies so I'd like to ask a. This lady to join me at the table if that would be okay your mom is just state your name for the committee. My name is Karen kite Powell. I'll let Karen speak here in just a minute. To the Committee. We need a law in Arkansas to protect all fourteen C. workers from any outside force trying to make them seek regular jobs this would be a protection for developmentally disabled individuals to be able to continue going to an understanding work environment that allows them to work at their pace and have a sense of community and accomplishment the pay is based upon prevailing wages but it is tied to a productive the rate that varies with each worker as I understand it that addresses the salary issue the other side of the coin is that all these individuals have a reason to get up every day and go to work. These work spaces do so much more for these folks than just providing a job they teach them skills and how to live independently. Some workers still live with family members in these situations those family members are allowed time to get some other things done and do not have to be a care giver one hundred percent of the time. These individuals their families and their communities are all better because of these fourteen C. work facilities. I've had the privilege for. The past seven years to serve on the board for abilities unlimited. And I get to see these places I get to go back into the work areas and these people are so proud of the work that they get to do. It may seem very menial to some people but these people that work at abilities unlimited are so very proud of the work that they do. And I'm so proud of abilities are limited and the other programs throughout the state like this because in addition to that they teach them how to live on their own if at all possible. I've got to the little girl is for my church who works at this place she is incredible with numbers. And if she ever get your phone number you get a call every week same time Tuesday is my day six thirty every night and if you don't answer she calls continuously until you answer. and but she loves abilities unlimited. And she tells me about going to work every day. But this is an area that we need to protect we need a law on the books that makes more fourteen C. certified businesses are protected so I'm asking for your help in passing this. And I would just like to ask here and she's the executive director of abilities are limited in hot springs so if you'd like to share a few words I would appreciate it. Thank you first for allowing me to speak on in favor of this H. B. at fifteen forty six and I'm not only representing abilities of hot springs I'm representing either fourteen C. holders across the state some of you in your districts are fully aware probably those programs and that we support all employment options we feel like it's it's very important to have that opportunity to find the place that that best meets the needs of the individual and as a fourteen C. facility the perfect place for everyone no absolutely not but for some it is and it's a very important part of their life and that's where they develop and social skills I developed friendships they have and I know that they are an environment where and if they're having a bad day they have someone there to help work with them to work through their issues that come up with solutions to their problems and admission is based on informed choice it's not something that that is imposed upon them they are allowed to come at free will they have their own work schedules their own program schedules and and it it also I'm just allows them to have some choices in the life that maybe they might not have otherwise and it gives them a sense of dignity accomplishment through the task that they do on that DO well website at its back in October of twenty two is that the date that's on the website H. as there thirty four facilities in Arkansas that hold certain at fourteen C. certificates that's a little misleading because pending certificates are listed as zero so we don't know when it. That number of people this would affect in Arkansas that I can say probably fewer than two thousand individuals work under fourteen C. certificate and they're also for HTC's that work under the certificate as well and we have trained staff that fully understand about the care and and needs of the individuals and it's it's and definitely a benefit to families families can reenter work force sometimes based on and there would lead one at being and that protective as setting and you might ask and where are you speaking for the S. and I would just say that we know that it is low it's it's it's it's in the law that you can have fourteen C. certificates but the armed groups in the nation in this state that would like to see it phased out over time because it's not considered a considered a competitive integrated setting and that and we feel like that because of that we would like Arkansas to support the continuance of that and till the federal law should change and I just appreciate your vote and that thank you for your time I do want to say one other thing and our programs across the state have many services that we provide for people with disabilities it's not just the fourteen say we have adult day treatment programs we have at transition programs for school to work we also offer residential we offer waiver services children's services so it's a number of things that we provide for the current community not just this fourteen say and but it seems like that that is the target right now and to and look at at doing away with that is we also have to get to work through the social security administration that. Helps to place people and in jobs for gainful employment so we we are in support of all employment options and I just ask that you continue these options and and appreciate your support today thank you. Thank you members there any questions president will Richard thank you Mr chair for folks like myself maybe that are new members can you explain what the fourteen C. certificate does does that allow them to work at less than minimum wage or to settle at I just don't understand I guess what fourteen C. is. Yes Sir it is a special minimum wage certificate that said administered through the US department of labor at their stringent requirements to get an application approved and then to continue re certification every year the prevailing wage in the surrounding areas for jobs or that are similar to what you do I that Stein and wages are and. Determined based off of that and then every two years we have to get their re certification process but yes they are paid based off of their production and it allows individuals that may not be able to work at a competitive rate or function physically and for an extended amount of time maybe they need extra breaks maybe they need as some accommodations maybe they need to add time to just add. With the individual sensory issues I may need to go find a quiet space for fifteen minutes at whatever the need and we try to feel that so does that help absolutely thank you thank you Mr. The other questions from the committee. Seeing then we do have some people signed up to speak against the bill and for the bill Wednesday Kramer you hear. You state your name for the committee in New we recognized speak against the bill good morning my name is Wednesday creamer I am from display Rights Arkansas an unstable my entire life how we're doing this please have Mrs field for over four years and have a master's degree in counseling with an emphasis in rehabilitation I'm here to address the bill's purpose the ability purpose is to recognize and protect the organizations and state which holds fourteen C. certificate but not sure why they need protection I find at due to protect and already in place that's a minimum wage practices allowed under fourteen C. R. exploitative for people disabilities in my work assisting people disabilities I spoken with people who work at facilities with fourteen the certificates they did real work but did not get paid a fair wage with some of seating at three dollars an hour or less why is it okay for someone to make less than we would legally allow anyone else to be paid solely because they have a disability this bill says that recognition and protection for the fourteenth you holders is important for individuals with disabilities and their families the truth is it's not protecting people disabilities and exploiting their labor individuals were working seven opportunity for necessities and enjoy their life the individual's disabilities or working under fourteen C. do not have this opportunity they are perpetually stuck in poverty even though they are working no one ever expected to be grateful to work for wage that you cannot afford to live on why do we consistently asks people with disabilities to be grateful for the bare minimum this has to start stop Arkansas has to be better than this this bill is not needed fourteen C. is already protected our state has bigger battles to fight and if you're expected to work for some minimum wage why would you expect people disability do you and be thankful for the opportunity thank you for your time. Thank you so much for testimony for being here today Evelyn then. You're recognized. If you could just state your name to the rock for the committee thank you. This is yes okay okay yes my name is Evelyn Denton I'm from Russellville I'm here today to encourage you to support the bill that's being presented to protect fourteen C. in Arkansas up my husband and I are the parents of two. Adult sons who are I have a rare genetic disease called galactosemia this causes various. Disabilities. And That's why this is so important to us our sense were. I able to graduate from high school with the help of one of them graduated from a university that offers a program for those who are disabled. Our son who graduated from. High school got a job when he got out of high school but it only lasted about a year he could not do what was expected of him our other son that did go to college and did graduate of. He was never able to find a job that he could do what was expected of him. So when the first son. Lost his job we were lucky enough to find Martha it's a shelter board workshop in muscle bill and it's a place that gives him. I the meaning in life. He can earn a little bit of money he can have friends. It just makes a life for him. And he has worked over there for many years. Our other son. As I said never was able to fit into a job even though he had gone to college and got my degree his disabilities just cost Because that problem. He ended up working at Martha. Many people think that those. People with the bill is disabilities should work in the general workforce with regular wages. If they choose to do this and they can be successful. Marva which is where our children have work. Is happy for the. We are for choice. But this has proven to be very difficult. There's not many jobs available where this fits. Employers cannot take this time to trying the disabled and operate their businesses at the same time. Having been a business owner for many years. And having had sons with disabilities we would be the very first ones who would work that out if we could but it's just not workable. You have to take someone to do something that's difficult for them you have to keep your business going and unfortunately the name of the game is make money and you have to make your of business the successful so what often people that do get these jobs end up losing them the end up sitting at home. With very little to do my duty play games on their Nintendo maybe watch TV maybe do something that is not productive it's not a positive way to go. When asked about. Why it doesn't work. It's. Well we've heard it said. You know. This is sort of hard to explain but when asked about lack of success in finding employment for those who have lost their jobs or been unable to find another one we have heard it said that there is always collateral damage when you make changes. I don't think any of us want our child called collateral damage. It is our hope that you will help us see that we have no individuals in Arkansas with developmental problems. Who are labeled as collateral damage. Help us with fourteen C.. Without it many are likely to lose their jobs. We need your support. Thanks for your time. Thank you so much for your testimony. Yeah Stephanie Prosser here like to speak for the bill. Thank you for your patience today you're recognized to speak for the bill. Yes. My name is Stephanie price. And I am from Van Buren and I am here to speak about the. Sorry. The fifteen forty the. H. B. fifteen forty six. Which. I should be able to choose where I want to work. But some people. I want to take away the. The fourteen C.. And. That would be very limit. Where I can work. I have worked ads. Sorry I've worked at abilities unlimited in for sixteen years I transition from my high school. And I went from. Packaging and assembling projects. Two. Met to supervising a four person janitorial team. So. When I say. I'm thank thank you. I get emotional you're doing great. when I say I like where I work it's a choice. And. S. thank when I say to people. You know is everybody in this room chose where they want to work. And I choose what I want to work and if you take that choice away from individuals. Then. You're putting them in a position. That date is is almost impossible. But. I just want to. Say that I hope you all to support the. Fifteen forty six bill. And that you continue to support it in years to come thank you. Thank you do great thanks for testimony. Debbie Hobbes here. You're recognized come it's before the bill. If you state your name for committee please Sherri Debbie Hobbes. And I hope after that last testimony there won't be any doubts in your mind mind and I know that but it's getting close to needing so I'm gonna keep this very brief I am a parent of a child attends a development disability he does have down syndrome. Each milestone that is reached when you have a child with a developmental disability and they have to move that from elementary school junior high high school except dress it's you know there's a lot of uh. Fear of almost you know what's going to happen next because this the unknown I'm so thankful that when Jonathan graduated he was able to go to a sheltered workshop and they're happy they're out I remember the until my daughter said you know they're very nice I said if we want to go on vacation we have to do is let them know in and she laughed and she said well when you have a two percent protection rate it's okay to miss work so so to say that you know that it and and like they said it is not taking advantage of these clients They do look at six thirteen dollars an hour prevailing wage they have startimes studies to see where they produce and that is what they are paid again they're not forced became alarmed this last. A few months whenever I learned that there was actually amendment to do away with fourteen C. and thirteen states have voted to not allow that anymore and that's the reason we're here today advocating to assist you advocate for your constituents we are advocating for our kids the you know it's it's portrayed as though the shelters are having them to work for them and those some of them do but you know maybe the cleaning SSNIT did but but they actively seek jobs from the manufacturing sectors where they can bring the work into the people so it's actually the employer's paying because I mean make it or making it possible for them to pay the clients we had a business fishing or apple company and we were able to pay some people through at the at that time it was pathfinders in northwest Arkansas but you know we can pay them according to the protection so much per box employers that they can put into a box those clients when I would go and pick Johnson that they were so excited when you gonna bring us more work if you do away with this program which some states have been then they will not have that and when you talk about living in poverty I don't know if you know this or not but when you receiving SSI check because of a disability you're only allowed to make sixty five dollars a month or they start taking away from it is assigned to it over sixty five dollars a month so if we want to address poverty we need to look at that instead of taking away fourteen C. I'm happy to answer any questions you have but I don't want to give me a time. Any questions. Thank you for your testimony there's there's no one else signed up to speak for against the bill represent Warren are you ready to close for your bill. Thank you Mr chairman yes I would love to close for my bill and I want to point out one thing that we're talking about several different things here with the sheltered workshops if they can advance we help them advance. If they can go into some other job we help them get to the other jobs. We don't want to hold them back we want them to go as far as they can go but if they can't go any further than being in the sheltered workshop then that is a place that they get to go and when they get a paycheck you would have thought that they got a pot of gold. It gives them value and they feel like they are a productive member of society thank you friends they get to feel like they have purpose in life so I'm asking you to please support this bill and help protect those that get the benefit of a fourteen C. organization thank you. Pilkington you're recognized motion to pass me we have a motion to pass any discussion on the motion. Seeing no discussion all those in favor say aye. Opposed. Members we are gonna hear what your bills passed thank you graduates record who will bill represent may be used in a very patient she has a bill she assures me it's going to be seamless. At this does have a handout with the bill that we can pass out and then everybody has that with you this is the. Alzheimer's association hand out. President Maher you're recognized to present your bill if you have some with the future state but your name Sir for the. I miss David cook on the director of government affairs for the Alzheimer's association. And state representative Julie Mayberry hopefully this will be short because I think we've done a good job of checking with everybody before even presenting the bill I I do want to say that this comes from the Alzheimer's and dementia Advisory Council in the state plan that we've been working on the last two years through a committee that this body passed last term Arkansas health care association the Arkansas residential assisted living association and DHS of all been a part of this we've got the thumbs up I'm gonna let David kinda share a little bit of what this bill does And would be happy to answer questions if you all have any more concerns. As a representative Mayberry mentioned on one of the components of the Alzheimer's dementia visor councils we looked at dementia training standards across care settings and we identified some of those gaps assisted living so as one of those areas that we want to address this session this legislation just establishes dementia training standards for those who are employed with assisted living facilities in the first ninety days they would need to complete four hours of initial training and two hours of continuing ed this bill also does one more thing it just requires DHS to update the also or just give me the assisted living rules and regulations that govern those facilities which is something we need to do is a state for a long time so we are gonna be working on that as well but there's no no no no no no no no opposition to the bill we do want to thank Arkansas health care association the Arkansas residential assisted living association of Division of provider services and quality assurance for all their input in drafting this bill this legislation and I'm happy to take any questions members of any questions. Seeing none I see no incentive speak for against the bill. Seeing them we have a motion to pass in discussion on the motion. House in favor say aye opposed congratulations you pass your bill representative Mary thank you for being patient members the welcome to public health committee we will be meeting again ten minutes upon adjournment today we have a lot of bills that we need to go ahead and move to our committee so that plan to be ten