HOUSE BILL NO. 312 An Act relating to pregnant women; requiring hospitals, schools, and alcohol licensees and permit tees to distribute information about fetal alcohol effects and fetal alcohol syndrome; relating to the consumption of alcoholic beverages by and the sale or service of alcoholic beverages to a pregnant woman; requiring involuntary commitment of a pregnant woman who has consumed alcohol; creating a fund for the prevention and treatment of fetal alcohol syndrome and fetal alcohol effects; relating to fines and to the taking of permanent fund dividends for selling or serving alcoholic beverages to pregnant women; and increasing taxes on sales of alcoholic beverages to fund treatment and education related to fetal alcohol syndrome and fetal alcohol effects. 2:36:40 PM REPRESENTATIVE BRUCE WEYHRAUCH, SPONSOR, explained that the legislation came forward to address the serious matter relating to Fetal Alcohol Spectrum Disorder (FASD). It is deplorable that Alaska ranks first in the Nation for the highest number of children born with FASD. The bill has evolved, being amended in the House HESS Committee. He added that there is at least one amendment to the version before the Committee. 2:38:29 PM JACQUELINE TUPOU, STAFF, REPRESENTATIVE BRUCE WEYHRAUCH, said the saddest fact is that FASD is 100% preventable. FASD is the leading cause of mental retardation in the State of Alaska. She stressed the problem in Alaska is large. FASD can cause birth defects, retarding brain function, arrested emotional and physical development, cause poor behavior, deformed facial features and harming learning and sleeping patterns. Ms. Tupou stated that it has been estimated that the State of Alaska will pay $3.1 million dollars over the lifetime of each child with FASD. Right now, that cost amounts to approximately $45 million dollars a year paid by the State. Every department is affected by the costs associated by FASD. Ms. Tupou explained the changes that had been made to the House HESS version: · It requires a continuing education component for doctors and nurses; · It provides for an educational requirement targeting schools and hospitals; and · It institutionalizes continuing education, training and diagnosis. The legislation is a small step forward in addressing the vast problem throughout Alaska. 2:41:48 PM Representative Weyhrauch pointed out the five zero inter- departmental notes and the one fiscal impact note by the Department of Health and Social Services. Ms. Tupou corrected, there are three fiscal impact notes from the Department of Health and Social Services. 2:42:43 PM PUBLIC TESTIMONY DIANE CASTO, MANAGER, PREVENTION/EARLY INTERVENTION SERVICES, DIVISION OF BEHAVIORAL HEALTH, DEPARTMENT OF HEALTH & SOCIAL SERVICES, testified that the Department of Health and Social Services is in favor of HB 312, emphasizing that FASD is preventable. She mentioned the social belief that drinking during pregnancy is acceptable in certain circumstances. Ms. Casto discussed, drinking during pregnancy is not okay at any time by anyone. There are still medical providers that still do tell women that it is okay to drink in moderation. The reality is that the part of the brain most impacted by alcohol evolves throughout the entire pregnancy. There is no safe time to drink alcohol. Ms. Casto addressed developmental issues related to FASD. She termed the bill a building block and shared the history of progress relating to the issue. She mentioned a survey about to be disbursed that will provide much needed data. Training is an important aspect of the service delivery system. The intent of the legislation is to work with the systems already in place that are working. Ms. Casto advised that currently, there are a number of functioning diagnostic teams. In the past year, a series of regional summits were held to identify the needs of each community. HB 312 closely aligns with what people in the public are recommending. Ms. Casto urged that prevention issues be addressed. FASD requires a two-pronged approach: · Prevention, and · Early services in place. 2:50:00 PM Representative Kelly questioned if other states were treating it as a crime. Ms. Casto replied, a few states have found that many of the women with serious alcohol problems are not receiving services. Women, who would ask for help, stopped seeking services when a penalty was imposed. A better plan would be intervention, including services and that pregnant women should have a priority for substance abuse treatment. Representative Kelly inquired about forcibly incarcerating women. Ms. Casto asked further clarification. Representative Kelly restated his query. Ms. Casto addressed the involuntary commitment statute; there are a few states, which have addressed it with some of the same problems following that method with the women going "under- ground", not coming forward for services out of fear. In Alaska, there is an involuntary commitment statute allowing family members to go through the courts to commit a person. 2:54:57 PM Representative Holm questioned the Alaska FASD ratio compared nationally per 1,000 FASD cases. Ms. Casto said that, unfortunately, Alaska is not one of the few states that keep good data on it. In a five-state study, Alaska was significantly higher, 1.6% per 1,000 for full-blown FASD. 10% have FAS and 85% have a disability related to prenatal exposure to alcohol. Representative Holm shared his concern about the extent of the problem and lack of data and solutions from a public health standpoint. He warned that choice is involved and that forced birth control might be a solution. Ms. Casto corrected assumptions made by Representative Holm regarding the amount of available data. Alaska has extensive data and agreed that there is a lot to be done with it. Contraception is a large part of the solution and it is included in the current version of the bill. Additionally, it is important to look at FASD from a public health standpoint. She thought the Department could not support mandatory birth control. Representative Holm clarified that the data he was referring to was statistics that show a decrease or increase due to the Department's intervention. Ms. Casto shared her history in the FASD program and the results of having a State registry. Data shows that FASD is not frequently reported. She described the data changes due to better reporting and that education should result in a decline of FASD in the birthrate. The Birth Defects Registry Data only goes through 1998; currently, the State has increased their ability to diagnose the condition, with increased education among medical providers, there has been an increase in reports. 3:04:41 PM Representative Holm voiced frustration about lack of data regarding significant reductions in FASD. He asked what the Legislature could do to help. He suggested mandatory incarceration. Ms. Casto emphasized that the Department has done quite a lot through awareness campaigns. Behavior has changed with those who do not have a substance abuse problem. Now the focus is on women who do having a drinking problem. Early intervention must reach the women who need substance abuse treatment before they become pregnant. 3:08:06 PM Vice Chair Stoltze pointed out that the intended beneficiary of the bill is the unborn child. He wondered if such a law could actually be enforced on those who have a disregard of life. Representative Weyhrauch said they had not gotten into that. 3:10:32 PM Representative Joule commented that he had sat on the State Drug and Alcohol Control Board in the 1980's when FAS was relatively unknown. He commented on the magnitude of the problem and maintained that education needs to be constant because change comes slowly. The State needs to be consistent. The most compelling fact is the cost to the State every year at $45 million dollars. The proposed legislation will save the State a lot of money in the long run. 3:13:53 PM Co-Chair Meyer acknowledged everyone is passionate about the concern. Representative Kerttula addressed the intent of the registry. Mr. Casto explained that the information would be carefully guarded and that the names would not be released. The registry helps track the concerns. 3:15:09 PM LAURA ROREM, PARENT NAVIGATOR ON THE FETAL ALCOHOL SYNDROME DIAGNOSTIC (FASD) TEAM, ADVOCATE FOR PERSONS WITH FASD, JUNEAU, introduced herself and her affiliation. LARRY ROREM, PASTOR, SHEPPARD OF THE VALLEY LUTHERN CHURCH, MEMBER OF THE JUNEAU FETAL ALCOHOL SYNDROME DISORDER (FASD) TEAM, JUNEAU, explained the role of his church in serving "marginalized" people in the community. Pastor Rorem interwove his involvement with the church and that of his two adopted FASD adult children. Ms. Rorem discussed HB 312. She addressed the lifetime reality of adopting two children with FASD, with whom State services claimed were healthy at the time of adoption. She presented a photo picture book of her adult children. Pastor Rorem compared his life to a recent fire at their church; that fire did not show itself on the surface or the outside of the church, but inside, there was a lot of damage. Their adult children suffer from severe brain damage. They have little support systems within the State of Alaska. He urged something be done to help prevent the damage occurring for both the person with FASD and their caretakers. The "garbage dump" for these people is usually prison. Anything that can be done to prevent the foundation damage and apply the appropriate repairs is vital. Ms. Rorem stressed how important passage of HB 312 is as it addresses the prevention. It provides for education of professionals. Lifetime costs for FASD are outrageous. She noted that they call their children the "million dollar babies" because so much has been spent on their care. Ms. Rorem stated that they are exhausted by the realities that await their children. Both of these young people express anger toward the effects that alcohol has had on their lives. 3:22:30 PM Co-Chair Meyer voiced his appreciation for their testimony. RIC IANNOLINO, JUNEAU FETAL ALCOHOL SYNDROME DISORDER (FASD) DIAGNOSTIC CLINIC, JUNEAU, read a letter from a child he cares for with FAS, literally a physical & mental disability with permanent and irreparable brain damage. Mr. Iannolino emphasized that approximately 60% of individuals with FAS will end up in prisons or mental health facilities. About 50% of Lemon Creek incarcerated people were prenatally exposed to alcohol and it is estimated that 70% of the children in foster care were exposed. He mentioned the facial features of some with FAS, which thth develop during the 19-24 day of pregnancy. He made the analogy of the FASD tragedy to that of Hurricane Katrina. Mr. Iannolino referenced comments made by a physician at the University of Washington, Dr. Stiscode, who stated that the costs associated with all alcohol births are very high, particularly those with the FASD individuals. Those with secondary disabilities resulting from FASD are dropping out of school, going to jail, stealing, experience alcoholism and homelessness. Those individuals actually need more services than those with full-blown FAS. Mr. Iannolino provided information on his background working with Tlinget-Haida tribes of Alaska and the lead agency for the FAS diagnostic clinic, providing research through an international agency studying FASD and his involvement with the U.S. Indian Health Service. Most people do not realize that the average person that has a child with FAS is 35 years old, white and professional. The associated costs are huge; 54% of children in custody are estimated to be FAS. He stressed the seriousness of the concern and the tragedy involved in the field. 3:29:25 PM Representative Holm asked if there had been any reduction in the numbers. Mr. Iannolino responded that the concern is so huge and unbelievable. The rates are very high compared to the rest of the country. Canada has many more services in place and understands that support services are the way to address the vastness of these concerns. He urged that treatment and support services be put in place throughout Alaska. 3:31:01 PM Representative Holm agreed it is a difficult issue and that his wife, a schoolteacher, experienced extreme frustration and sadness in attempting to deal with the heartbreak and concern. He hoped to find a way to slow-down the process. 3:31:47 PM Co-Chair Meyer indicated that the amendment in the file would be held for consideration at a late date. SUESHANNA FIONA STEWART-CAMPBELL, (TESTIFIED VIA TELECONFERENCE), FASD ADULT, FAIRBANKS, stated that she is an adult FAS survivor. She commented on the challenges that have kept her from functioning fully in the world, stressing the difficulties accessing services. Ms. Stewart-Campbell referred to herself as a "cookie cutter". Life is raw for those with FAS and many are deeply wounded in their hearts and souls. She stated that because of her condition, she has not been able to live a rewarding life; always being either homeless or among the working poor. She stressed that FASD diagnostic teams could provide education for the public, support groups because without diagnosis and support, these people can not discover the beauty of their own truth and talents. She urged support to maintain and increase funding. 3:39:10 PM JEANNE GERHARBT-CYRUF, (TESTIFIED VIA TELECONFERENCE), PARENTS, KIANA, spoke on behalf of her six children exposed to prenatal alcohol and now FASD. She addressed the continual need for services for individuals and families impacted by FASD. Her children range between six and eighteen years of age. They have many challenges, behavioral, social and language and it affects their ability to function successfully. Ms. Gerharbt-Cyruf stressed that unless the concerns are addressed daily, it is difficult to understand the impact on individuals and their families. These are individuals at risk. She urged the legislation be adopted and moved from Committee. 3:43:21 PM KARA NYQUIST, (TESTIFIED VIA TELECONFERENCE), ATTORNEY, ALASKA ASSOCIATION FOR HOMES FOR CHILDREN (AAHC), ANCHORAGE, stated that among the youth their agency serves, as many as 60% suffer from FASD. There is not a diagnosis for all those youth. The program has never adequately been funded and consequently, the agency has not been at a point that they could collect adequate data. Native youth, at this time, are the only ones being diagnosed. There is no funding for non-Native youth. The young being served are the ones coming back from residential treatment programs and are the ones in the foster care system. Those kids are having behavioral problems in school and are found throughout the criminal justice system. Ms. Nyquist noted AAHC supports the legislation and hopes that the Legislature will adequately fund treatment programs. The Legislature keeps complaining that funding requests from the Department of Health and Social Services keep increasing; that is because the State is not investing the necessary dollars early on; instead, treating only the crisis. A crisis already exists and funds needs to be invested in diagnosing the data of those youth who already have fetal alcohol syndrome. She reiterated, current funding is inadequate and that the real issue is not being addressed. AAHC supports HB 312 and would like to see it accompanied with adequate funding so it can be properly implemented. 3:47:07 PM MICHAEL BALDWIN, (TESTIFIED VIA TELECONFERENCE), MENTAL HEALTH THERAPIST, ANCHORAGE, spoke to his involvement with FASD in his counseling practice and the devastating impact of alcohol on these families. He spoke to other problem areas that are tied to the consequences of prenatal alcohol exposure such as the high suicide & violence rates. Mr. Baldwin referenced the public health issues of the legislation. The public health approach changes cultural beliefs about alcohol and more people need to be educated regarding these concerns. The system must change; adequate funding is essential to help educate the populace. There is research available that upfront dollars reduce long-range costs associated with FASD. He echoed support for the legislation. PATRICIA SENNER, (TESTIFIED VIA TELECONFERENCE), CHAIR, LEGISLATIVE COMMITTEE FOR THE ALASKA NURSES ASSOCIATION, ANCHORAGE, advocated for greater funding reserved for education and training of nurses addressing FASD. She stressed that many kids are misdiagnosed and women are still not being educated regarding the dangers of drinking during pregnancy. Health care providers are not always recognizing these children. Ms. Senner recommended that training for nurse practioners must include midwife direct entry nurse midwives as well. Prevention is effective and will change the way services are provided for those kids. Many of the folks currently getting training are FASD kids themselves and are now having children of their own. 3:53:37 PM Ms. Senner mentioned the "secret-drinking mothers", as more people know that they should not be drinking during pregnancy. 3:55:19 PM CHERYL SCOTT, (TESTIFIED VIA TELECONFERENCE), PARENT OF FASD CHILD, STONE SOUP GROUP, ANCHORAGE, spoke to her child and his associated FASD disorder. She addressed all the conditions that occur with the illness. The area of developmental disabilities is vast. The Stone Soup Group has been available to provide support for children around the State with FASD and sharing resource information. It is families that cannot access in-home support that need assistance and are in crisis. The challenge is finding appropriate childcare. She stressed that it is a tragedy because these children often do not physically look like they suffer from FAS. Ms. Scott recommended family camps. The Stone Soup Group has been researching the issue since 1997 to determine a strategy to help these children. She emphasized the number currently living in foster care because their birth families are in crisis. HB 312 was HELD in Committee for further consideration.