ALASKA STATE LEGISLATURE  SENATE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE  February 8, 2010 1:33 p.m. MEMBERS PRESENT Senator Bettye Davis, Chair Senator Joe Paskvan, Vice Chair Senator Johnny Ellis Senator Joe Thomas Senator Fred Dyson MEMBERS ABSENT  All members present COMMITTEE CALENDAR  SENATE CONCURRENT RESOLUTION NO. 12 Proclaiming September 9, 2010, as Fetal Alcohol Spectrum Disorders Awareness Day. - MOVED SCR 12 OUT OF COMMITTEE SENATE BILL NO. 215 "An Act requiring the Department of Health and Social Services to accept federal prescription drug benefits or to provide comparable benefits for residents of the Alaska Pioneers' Home." - MOVED SB 215 OUT OF COMMITTEE PREVIOUS COMMITTEE ACTION  BILL: SCR 12 SHORT TITLE: FETAL ALCOHOL SPECTRUM DISORDERS DAY SPONSOR(s): SENATOR(s) MEYER 01/19/10 (S) READ THE FIRST TIME - REFERRALS 01/19/10 (S) HSS 02/08/10 (S) HSS AT 1:30 PM BUTROVICH 205 BILL: SB 215 SHORT TITLE: PIONEERS HOME RX DRUG BENEFIT SPONSOR(s): SENATOR(s) WIELECHOWSKI, OLSON, KOOKESH, ELLIS, DAVIS 01/19/10 (S) PREFILE RELEASED 1/15/10 01/19/10 (S) READ THE FIRST TIME - REFERRALS 01/19/10 (S) HSS, FIN 02/08/10 (S) HSS AT 1:30 PM BUTROVICH 205 WITNESS REGISTER JEANNE GERHARDT-CYRUS Parent Training & Information Navigator, Stone Soup Group Case Manager, Maniilaq Association Kiana, AK POSITION STATEMENT: Supported SCR 12. BARBARA KNAPP, Manager Division of Behavioral Health Department of Health and Social Services (DHSS) Anchorage, AK POSITION STATEMENT: Supported SCR 12. SHANNON CROSS, Mental Health Clinician Division of Behavioral Health Department of Health and Social Services (DHSS) Anchorage, AK POSITION STATEMENT: Supported SCR 12. TRAVIS HEDWIG, Project Coordinator Family to Family Health Information Center Stone Soup Group Anchorage, AK POSITION STATEMENT: Supported SCR 12. KATE BURKHART, Executive Director, Advisory Board on Alcoholism and Drug Abuse Director, Alaska Mental Health Board Juneau, AK POSITION STATEMENT: Supported SCR 12. MICHAEL BALDWIN, representing himself Anchorage, AK POSITION STATEMENT: Supported SCR 12. SENATOR WIELECHOWSKI Alaska State Legislature Juneau, AK POSITION STATEMENT: Sponsor of SB 215. DAVE COTE, Director Alaska Division of Pioneer Homes Department of Health and Social Services (DHSS) Juneau, AK POSITION STATEMENT: Supported SB 215. RIC DAVIDGE President, Vietnam Veterans of America (VVA) Chair, Municipal Commission on Military and Veterans Affairs Anchorage, AK POSITION STATEMENT: Supported SB 215. ACTION NARRATIVE 1:33:00 PM CHAIR BETTYE DAVIS called the Senate Health and Social Services Standing Committee meeting to order at 1:33 p.m. Present at the call to order were Senators Dyson, Paskvan and Davis. SCR 12-FETAL ALCOHOL SPECTRUM DISORDERS DAY  1:33:46 PM CHAIR DAVIS announced consideration of SCR 12. SENATOR ELLIS joined the meeting. 1:34:16 PM SENATOR MEYER, sponsor of SCR 12, said that this resolution proclaims September 9, 2010 as Fetal Alcohol Spectrum Disorders (FASD) Awareness Day; FASD Awareness Day is observed internationally on that date. This is a reminder on the ninth day of the ninth month that during a woman's nine months of pregnancy she should not drink alcohol. He said Alaska has the highest known rate of FASD in the United States. It is caused by prenatal exposure to alcohol and can cause permanent brain damage, birth defects, learning disabilities, behavioral problems, and most tragically, the loss of individual potential. That, he said, has been the most difficult thing for him in working with these children; they try as hard as anyone else, but are frustrated by the limitations of their condition. It is even more frustrating because this disease is totally preventable. SENATOR MEYER continued to say that the lifetime cost of medical and residential services for 15 children born in Alaska with FAS can be up to $47 million according to the 2005 update prepared by McDowell Group on the economic costs of alcohol and other drugs. 1:36:32 PM In conclusion, he reiterated that this is totally preventable. He referred to the strides that have been made through education about the dangers of drinking and driving and of tobacco use; the more people are educated about FASD, the greater the chances of turning the tide on this problem as well. 1:37:23 PM SENATOR DYSON said he suspects it was during Chair Davis's professional career when a medical professional in the Seattle area recognized a remarkable number of persons coming out of Alaska who had certain distinctive facial features in common, and started the research that finally identified what is now known as Fetal Alcohol Spectrum Disorder. Alaska has not only been hugely impacted, but has played a significant role in that research, leading the nation in identifying children with FASD. He stated that he has friends who are social workers and child advocates working in western Alaska, who think there are some communities in which as much as two-thirds of the adult population has prenatal alcohol poisoning issues. For those affected people who do not have the identifying physiological features, there are still neurological patterns that are not there and never will be there. These people have great difficulty in reasoning between cause and effect; they often have problems with empathy; they can't take a long view when making decisions; they are easily victimized and will require a great deal of structure all of their lives. 1:40:28 PM SENATOR DYSON referred to successes in the fight against FASD such as the bill that requires posting warning signs in bars, and noted that Alaska now has one of the better programs in the nation and is making some progress. He ended by saying that Senator Davis, Senator Ellis and others who are here deserve credit for that. This resolution is another step in the educational progress, and he said he would be privileged to move this bill. 1:42:43 PM JEANNE GERHARDT-CYRUS, Kiana, Alaska, said she is a parent to children with prenatal alcohol exposure, a professional who conducts training in FASD, a Parent Training and Information (PTI) Navigator with Stone Soup Group, and a case manager with Maniilaq Association. FASD is an issue that crosses entities; it belongs to all of us in every community. It impacts schools, corrections, and behavioral health. It is preventable, but there is no prevention without intervention. Those who are affected by FASD now, need to get services so they do not develop the characteristics that come from a poor fit with the environment. Not everyone who is affected has the physical indicators, and those who don't look as if they have a disability often don't get the help they need to be successful. A lot of people with prenatal alcohol exposure end up in the correctional system and, sadly, get the 24 hour per day supervision and structure they need in a correctional facility. That support needs to be provided in the community where people can become viable members and make a contribution to community life. 1:45:57 PM MS. GERHARDT-CYRUS concluded that most of these people do not qualify for developmental disability services, although the FASD waiver program will help a great deal. As a youth she once worked with told her, she said, they shouldn't have to get in trouble to get services. 1:46:49 PM BARBARA KNAPP, Manager, Treatment & Recovery Section, Division of Behavioral Health, Juneau, Alaska, spoke on behalf of Melissa Stone, Director, and the Division of Behavioral Health, in support of all of the families who struggle on a day-to-day basis with Fetal Alcohol Spectrum Disorder. They support SCR 12 proclaiming this day FASD Awareness Day. 1:47:59 PM SHANNON CROSS, Mental Health Clinician, Division of Behavioral Health, Anchorage, Alaska, said she also supports SCR 12. 1:48:26 PM SENATOR DYSON asked how Alaska is doing on the availability of diagnostic capacity for parents and in the Department of Corrections population. MS. KNAPP answered that she cannot speak to the Department of Corrections, but the Department of Health and Social Services (DHSS) has diagnostic teams located all around the state, where families can go through a battery of testing with professionals who can make that diagnosis. They are working on getting more services out to those families. She said she and Shannon Cross represent what is called the Residential Psychiatric Treatment Center/FASD Waiver, which provides home and community-based services to children who live in their home communities instead of receiving treatment in an institution. 1:50:11 PM TRAVIS HEDWIG, Project Coordinator, Family to Family Health Information Center, Stone Soup Group; PHD Candidate in Medical Anthropology, Anchorage, Alaska, said he has been involved in disability organizations in Alaska for the last decade and has most recently become interested in Fetal Alcohol Spectrum Disorder. He supports any and all intervention and prevention services for this population in Alaska. He knows first-hand that diagnostic accessibility is a problem here, but that is changing; there is a new diagnostic team that has opened up at Assets Inc. Prior to that, there was only one diagnostic team in Anchorage, affiliated with Southcentral Foundation and only available to beneficiaries, so it is a very positive development. He reiterated his support for SCR 12. 1:52:01 PM KATE BURKHART, Executive Director, Advisory Board on Alcoholism and Drug Abuse and the Alaska Mental Health Board, Juneau, Alaska, said she had not intended to testify, but has the answer to Senator Dyson's question. She said they have been working with the Department of Health and Social Services and the Prevention and Early Intervention unit within the Division of Behavioral Health, because they have recommended some funding for services. The most recent data they have received is that there are active diagnostic clinics in the following communities: Bethel - YKHC Sitka - SEARCH Kenai - Frontier Community Services Juneau - Central Council of Tlingit and Haida Indians Fairbanks - Southcentral Foundation Palmer - Mat-Su Family Services Anchorage - Assets Inc. Over the past three years, these clinics have been actively diagnosing two to three people per month in each clinic that meets about once per month. So for example, in Bethel they diagnosed 16 individuals in 2009, which may not sound like many, but it is a very intensive all-day process. In Sitka they diagnosed 10 in 2009; in Kenai they diagnosed 34 last year; in Juneau they 23 diagnoses in 2009 and 11 by February of 2010. Fairbanks diagnosed 22 last year and 16 so far in 2010. Southcentral is by far the most active, with 35 in 2009 and 52 so far in 2010. She added that, after receiving a diagnosis, if people don't have access to the services they need, the diagnosis is not going to be of any help. That is one of the benefits of having an awareness day like this one, which addresses the opportunity to educate the public about the unique needs of individuals with FASD and the services they need to thrive. MS. BURKHART thanked Senator Meyer and the committee for bringing attention to this issue. 1:55:12 PM SENATOR DYSON commented that he appreciates Ms. Burkhart's testimony, but she is wrong to say that knowing the diagnosis is not helpful. For people who are affected, just knowing it is not their fault is very helpful, and there is a lot of literature available now that friends and families can access to find the resources they need to help children. 1:56:15 PM KATE BURKHEART thanked him for pointing that out; she did not mean to minimize in any way that it is important for people to understand it is a medical issue and an issue of disability, not one of blame or fault. She admitted that she did mis-speak and said she meant to convey that they have heard public comment from around the state expressing frustration from educators and family members about the supportive services that are needed. 1:56:43 PM MICHAEL BALDWIN, representing himself, Anchorage, Alaska, said he has worked as a behavioral health clinician over the past two decades in a number of different settings and with those affected by prenatal alcohol exposure. He is thankful that Senator Meyer has proposed this resolution. As others have testified, it is important to keep this in people's awareness. Echoing Ms. Gearhardt-Cyrus's comments, he said, the impact goes far beyond the affected individuals, affecting many of our systems and communities across the state at significant emotional and financial cost. 1:58:57 PM CHAIR DAVIS closed public testimony. SENATOR THOMAS joined the committee. 1:59:40 PM SENATOR DYSON moved to report SCR 12 from committee with individual recommendations and attached zero fiscal note(s). There being no objection, the motion carried and SCR 12 moved from the committee. SB 215-PIONEERS HOME RX DRUG BENEFIT  CHAIR DAVIS announced consideration of SB 215. 2:00:15 PM SENATOR WIELECHOWSKI, sponsor of SB 215, said this bill came about after months of discussions between state and federal agencies, veterans' advocates, and members of the legislature, who sought to reinstate federal prescription benefits for about a dozen of the Alaska Pioneer Home residents. Although only about a dozen veterans were impacted last year, the veteran population grows each year, and this bill will ensure that the residents of the Alaska Pioneer Homes will continue to receive their federal prescription drug benefits for years to come. He explained that in April 2009, veterans who were residing in Alaska Pioneer Homes and were unable to administer their own medications stopped receiving the free or low-cost medications to which they were entitled through the Veterans Administration (VA). These veterans were then forced to purchase the same medications from the Pioneer Home's pharmacy. The Pioneer Home's pharmacy prepares medications in blister-packs so nurse aides can administer them to the patients safely and accurately; the VA prepares medications in bottles and cannot provide medications in blister-packs. VA doctors cannot write prescriptions to Pioneer Homes' pharmacies, because the Pioneer Homes are outside the VA system, and the Pioneer Homes cannot repackage VA medications because the lot numbers and expiration would change upon repackaging, which is currently not allowed under state law. The Pioneer Homes were previously placing veteran medications in Monday through Sunday Medisets, but that was determined to be unsafe; the concern was that pills from the VA often look different from those sold by the Pioneer Home pharmacies, and it would be difficult to determine if the pills had been taken or removed from the set due to a dosage change. SENATOR WIELECHOWSKI continued that these veterans were caught up in the middle of a bureaucratic mix-up between state and federal policies. This resulted in a combined effort between the Department of Health and Social Services (DHSS), the Pioneer Homes, the Veterans Administration. Veteran Advocates, and several members of the legislature who were previously mentioned. A solution was found. The Pioneer Homes involved all interested parties to determine the appropriate protocol for ordering, receiving, storing, administering, and disposing of medications. The Alaska VA health care system and the regional office chief pharmacist and chief of staff conducted in-service visits to the Pioneer Homes to ensure nurses are properly administering medications directly from original VA bottles. What this bill does, he said, is ensure that the struggles many people went through last summer to resolve the problems, don't have to be repeated in the future. It says that the Pioneer Homes should continue to do things the way they are doing them now; if the Pioneer Homes identify a safety precaution that prevents them from disbursing medications as they are doing currently, the state-run Pioneer Homes will cover the cost of the medications. It is his understanding however, that the Pioneer Homes do not anticipate any changes to what they are currently doing, and thus this bill has a zero fiscal note. SB 215 prevents the need to recreate the wheel and ensures that individuals who have earned federal prescription benefits will continue to receive their benefits even in the face of future administrative staffing changes. 2:04:26 PM SENATOR WIELECHOWSKI said this bill is supported by the Vietnam Veterans of America, who made it one of their top legislative priorities in Alaska for 2010, and by the Director of the Office of Veterans Affairs. 2:05:11 PM DAVE COTE, Director, Alaska Division of Pioneer Homes, Juneau, Alaska, said they are neutral on this bill. SB215 has a zero fiscal note and should have no impact because they are allowing veterans who are eligible to receive medications from the VA, or residents of Pioneer Homes who are eligible to receive medications through Indian Health Service, to obtain those medications and bring them into the Pioneer Homes, where the medications will be administered by their staff. 2:05:52 PM RIC DAVIDGE, President, Vietnam Veterans of America (VVA); Chair, Municipal Commission on Military and Veterans Affairs, Anchorage, Alaska, said he was delighted when the members of the legislature of both the House and the Senate came together and called meetings to find a way out of this maze. He specifically thanked Senator Wielechowski, Representative Dahlstrom and Representative Gara and their staffs for stepping up and following through with this. SB 215 has the total support of the Vietnam Veterans of America; they have sent a copy of this bill and the House bill to their national office, as other states are facing the same kind of problem and are interested in Alaska's solution. 2:07:14 PM SENATOR ELLIS thanked Mr. Davidge for his involvement in this bill and for his work on behalf of Alaska's veterans. 2:07:33 PM CHAIR DAVIS closed public testimony. 2:07:55 PM SENATOR DYSON commented that only government can be so foolish, and he appreciates his colleagues for working to resolve this problem. 2:08:38 PM SENATOR PASKVAN moved to report SB 215 from committee with individual recommendation(s) and attached zero fiscal note(s). There being no objection, SB 215 moved from the committee. 2:09:26 PM There being no further business to come before the committee, Chair Davis adjourned the meeting at 2:09 p.m.