SCR 13-FETAL ALCOHOL SPECTRUM DISORDERS  3:10:27 PM CHAIR HIGGINS announced that the first order of business would be CS FOR SENATE CONCURRENT RESOLUTION NO. 13(HSS), Urging the governor to establish and support programs designed to eradicate the occurrence of fetal alcohol spectrum disorder from the state. 3:11:10 PM HEATHER SHADDUCK, Staff, Senator Pete Kelly, Alaska State Legislature, explained that the idea for this proposed resolution had been initiated after a presentation by the Alaska Mental Health Trust Authority in the previous year, which described the lack of progress toward eradication of fetal alcohol spectrum disorder (FASD). 3:12:12 PM RYAN RAY, Staff, Senator Pete Kelly, Alaska State Legislature, paraphrased from the sponsor statement, which read: Senate Concurrent Resolution 13 calls for a focused, statewide effort to prevent further occurrence of fetal alcohol spectrum disorder in Alaska. Fetal alcohol spectrum disorder (FASD) has been identified as a driver of numerous social challenges in our state. The tragedy of fetal exposure to alcohol continues to negatively impact Alaska's families, communities, and government agencies. Due to its teratogenic effects, Alcohol creates more damage to the brain of a fetus than cocaine, heroin, or methamphetamine. Unfortunately, the brain damage created by alcohol is irreversible. The state of Alaska currently has the highest documented prevalence of fetal alcohol spectrum disorders in the United States. According to the Alaska Maternal and Child Health Data Book, 112.9 children in 10,000 births in Alaska are born with FASD. The financial cost to the State is tremendous. Best estimates from the Alaska Department of Health and Social Services place the cost per child born with FASD in the range of $860,000 to $4.2 million dollars. However, fetal alcohol spectrum disorder is completely preventable. This fact highlights the moral and ethical responsibility to take action that all Alaskans share. SCR 13 urges the Governor to establish and support programs designed to eradicate the occurrence of FASD and resolves that the Alaska State Legislature will support programs that will minimize the risk of pre-natal exposure to alcohol. In addition, SCR 13 encourages increasing the State's capability to conduct rapid FASD screening in order to ensure that those experiencing the challenges of living with FASD receive the care and support they rightly deserve as early as possible. Far too often, alcohol addiction and personal trauma fuel the incidence of fetal exposure to alcohol. For this reason, SCR 13 appeals to the Governor to take actions to expand residential substance abuse treatment services for women who are pregnant and concurrently experiencing alcohol and drug addiction challenges. Thus ensuring mother and child receive the care, protection, and healthy environment they both need in order to thrive. As Alaskans, we all share in the responsibility of ensuring our future generations are healthy and vibrant. The horrible tragedy of fetal alcohol spectrum disorder in Alaska is totally preventable. SCR 13 stands against FASD in Alaska and resolves that the leadership of our State will take actions necessary to safeguard future children from fetal alcohol spectrum disorder. 3:16:19 PM MS. SHADDUCK explained that there were not enough diagnostic screening tools for FASD throughout Alaska, and it took a long time to observe a child. She stated that there was not a uniform screening tool in the nation. She expressed a desire to find and implement a screening tool for nationwide use. CHAIR HIGGINS asked for clarification that the disorder was not recognized by the federal government and that there was not a screening tool. MS. SHADDUCK deferred to others for an answer. She noted that other screenings could be combined for many disorders, but that there were no other screenings similar to FASD. 3:17:58 PM CHAIR HIGGINS asked about the definition for a screening tool. MS. SHADDUCK replied that conversations with the Department of Corrections had indicated that, although FASD was a mitigating factor in sentencing, there was not any screening tool for diagnosis. This diagnostic process needed to be started by a screening to flag FASD, which would help with placement and support. 3:19:13 PM MR. RAY explained that the point of highest risk for fetal exposure to alcohol was between conception and the knowledge of pregnancy. It was critical for a woman to quickly find out that she was pregnant before she consumed alcohol. He reported that research conducted by the Substance Abuse and Mental Health Service Administration (SAMSA) stated that, although 90 percent of women stopped drinking at pregnancy, the remaining 10 percent struggled with addiction challenges. He declared that men and women should be aware if their partner was pregnant before consumption of alcohol. He stated that the State of Alaska "must enhance residential substance abuse treatment services for women who are pregnant and concurrently suffering from addiction." He declared that it was vital to ensure that women received the treatment they needed, while living in a "healthy, enriching, and trauma free environment." He reported that Dr. Mark Sloane, a professor at the University of Michigan, was studying the comparison of fetus development when exposed to alcohol with that of a fetus whose mother was living in a traumatic, abusive environment. The findings were showing a similarity between the two. He stated that the Alaska State Legislature "urges the governor to establish and support programs designed to eradicate the occurrence of fetal alcohol spectrum disorder from the state." He said that the legislature supported a strong public awareness campaign designed to inform, move, and motivate state residents in an effort to prevent the occurrence of fetal alcohol spectrum disorder in the state; that the legislature supported programs that minimized the risk of fetal exposure to alcohol; and that the legislature encouraged the governor to increase the capability for rapid screening of fetal alcohol spectrum disorder with the Department of Corrections and the Department of Health and Social Services. He reported that the Alaska State Legislature encouraged the governor to take action to expand residential substance treatment services for women. He stated that FASD was completely preventable, and that it was a societal problem to ensure that no child was born with this disability. MR. RAY, in response to Representative Nageak, explained that fetal alcohol effect (FAE) had been grouped with fetal alcohol syndrome (FAS) to identify fetal alcohol spectrum disorder (FASD). 3:24:56 PM CHAIR HIGGINS opened public testimony. 3:25:07 PM DEB EVENSEN declared that it was time to take a bold step forward to find solutions to eradicate FASD in Alaska. She expressed her support for the proposed resolution. She offered an anecdote about her observations of an FASD three-year-old child, and the difference between him and other kids his age. She expressed her hope that this is the last generation of FASD kids. 3:28:49 PM JEFF JESSEE, Chief Executive Officer, Alaska Mental Health Trust Authority, Department of Revenue, stated his support of the proposed resolution, and pointed to the lack of understanding for the prevalence of FASD and the loss of potential for many children through the exposure to alcohol. He reported that, as 50 percent of pregnancies were unplanned and there was no safe level of alcohol consumption during pregnancy, this raised the necessity for many social norm issues to be addressed in the community. Although 90 percent of women stopped drinking when they became pregnant, there was the need for a new social norm to stop drinking until it was known. He relayed that this involved both the women and their partners, and the importance of engaging men in the conversation. He stated that it was a big step to quit drinking until sureness regarding pregnancies. He said the two biggest risks to having an FAS child were the mother already having an FASD diagnosis, or already having an FASD child. He explained that residential treatment was about helping women deal with addiction and giving them employment and parenting skills to live a healthy life and be a productive member of the community. He lauded the need for the legislature to take a stand. CHAIR HIGGINS opined that it was necessary to change the culture, and that it was not possible to legislate pride or value. 3:33:45 PM REPRESENTATIVE SEATON reflected that the number one risk factor of an FASD child was the mother having a diagnosis of FASD. He offered his understanding that the big problem with FASD was the brain disconnects between cause and effect. He suggested the voluntary offering of implants for long term pregnancy control to women with FASD, as a support for the lack of capacity for understanding cause and effect. He asked if the Alaska Mental Health Trust Authority had a position. 3:35:32 PM MR. JESSEE replied that birth control would work for some people, but not for others. He opined that the use of birth control as a strategy to prevent FASD and pregnancy was an option, and that strategies under the proposed initiative would evolve. He stated that it was necessary to provide basic information to people. REPRESENTATIVE SEATON reiterated that he had suggested the birth control be voluntary, and that it should be a choice. He stated his full support of the resolution while continuing to review all the available strategies. 3:36:58 PM REPRESENTATIVE REINBOLD asked if the State of Alaska or the Alaska Mental Health Trust Authority did enough to prevent drinking by underage women and to protect them from FASD. She asked if there was there a plan of action. MR. JESSEE replied that not enough was done, and that it was always difficult to monitor a legal product that was promoted nationally, while convincing youth that it should not be used. He relayed that there was a tight nexus between sports and alcohol consumption, although a strategy to keep youth "on the straight and narrow" was for participation in sports. He stated that this was delivering youth to the [alcohol] industry for inculcation of the mindset for consumption. He shared that he was involved with the statutory review process for alcoholic beverage control, and that underage drinking issues were being discussed. He said that there was no real check on underage drinking parties, and this was being reviewed. He offered his belief that there were ways to protect youth. 3:40:37 PM REPRESENTATIVE REINBOLD expressed her amazement and asked if there was anything that could be done to better educate and protect youth. 3:41:42 PM PATRICIA SENNER, Professional Practice Director, Alaska Nurses Association, relayed that she was also a family nurse practitioner, and had been on the staff of the Governor's Council for the Handicapped and Gifted, which encouraged women not to drink when pregnant. She shared that many of the youth at Covenant House had FASD and were graduates from the foster care system. She suggested the need of a better strategy for the discharge planning of affected youth in foster care. She reported that many youth with mental disabilities had difficulty finding gainful employment and were "picked up by the sex trade" or "picked up as part of the drug trade." She encouraged a requirement that youth put in residential treatment be tested for FASD, and then social supports could be developed instead of medication. She opined that almost all of the young girls with FASD became pregnant, and she offered agreement with Representative Seaton regarding the disconnect between actions and consequences. She encouraged long acting reversible birth control. She relayed that some fellow health care professionals, usually not nurses, would still tell patients that small amounts of alcohol while pregnant would not cause harm. She stated that women without substance issues did not ask if it was okay to drink when pregnant, they just quit immediately. She declared the need for more in-house supportive programs for pregnant women. 3:46:22 PM JERRY JOHN reported that he grew up with FASD and that, while he could do some things just fine, he needed "an external brain every day to keep me on track," as he needed daily reminders for everyday tasks. He offered his belief that the most important thing was to prevent FASD and educate people about it. He declared that people with FASD needed lifelong support. 3:48:01 PM K. C. LOWE, Nurse Anthropologist, shared that she worked with Mr. John as his "external brain." She reported that she had known him since his birth, and had become his medical foster mom, in a program to see if medical foster parenting was an appropriate solution for FASD children. She shared his story after he returned to his village and scavenged with the village dogs to survive. She reported on a "remarkable intervention" from 2001 to 2004, which made it possible to assist him with attendance at Job Corps. She declared that that this had been a relatively successful alternative for him, although the staff were not educated or prepared to deal with FASD and the cognitive disconnect. She reported that he had spent 4 years at a community resources ranch; however, the lack of educational understanding and experiential awareness by the staff for the limitations caused by FASD resulted in a lack of success. She explained that there were limitations to the functional abilities, and these functional irregularities caused by the physical damage to the mind from the alcohol made traditional behavioral remediation unsuccessful. He was currently living in Anchorage with some independence and with 24 hour support. Although he had very few role models for success, he had been successful in his own way. He plays five instruments, speaks two languages fluently, and was teaching himself Spanish. He had cognitive ability but no organizational ability, and he could be dangerous to himself. She testified in support of efforts toward prevention and education, and especially for substantial, in-depth education, health and social services, and recognition. The need for lifelong 24 hour-a-day support was critical and essential. REPRESENTATIVE TARR acknowledged that support and celebration of success was necessary. 3:55:08 PM CHAIR HIGGINS closed public testimony. 3:55:17 PM REPRESENTATIVE KELLER commented that the proposed resolution was frustrating, as this was not new information, and yet it was not possible to write a law to fix it. He shared the need for more advocates and activity to remind the legislature to spend the money on education programs and to organize a task force. He reflected on the challenge to social norms, although it was "messing with people's choice and autonomy and that's why government can't fix this one." He lamented that "it is insane that we have this totally preventable situation and we have so little we can really do." 3:57:18 PM REPRESENTATIVE NAGEAK shared that something had to be done, as this impacted a lot of people, especially in rural Alaska. He stated that the new social networks offered hope and support, and a place to tell people that it was not okay to drink when you were pregnant. 4:00:04 PM REPRESENTATIVE SEATON expressed support to the need for prevention, and he referenced earlier discussion for voluntary access to long term, reversible birth control. He addressed the need to deal with the mental disconnect of cause and effect for women with FASD, as there was no way to cure this most significant risk factor, but it was possible to make birth control available. 4:03:16 PM REPRESENTATIVE KELLER moved to report CSSCR 13(HSS), Version 28- LS1398\C, out of committee with individual recommendations. There being no objection, CSSCR 13(HSS) was moved from the House Health and Social Services Standing Committee.