Legislature(2013 - 2014)CAPITOL 106

02/11/2014 03:00 PM House HEALTH & SOCIAL SERVICES


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Audio Topic
03:05:25 PM Start
03:06:16 PM HJR20
03:14:16 PM Presentation: the Citizen Review Panel
04:16:54 PM Presentation: Key Coalition
04:47:11 PM Adjourn
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
*+ HJR 20 MEDICAL DEVICE TAX TELECONFERENCED
Moved Out of Committee
+ Presentations: TELECONFERENCED
- The Citizen Review Panel
- Key Coalition
                    ALASKA STATE LEGISLATURE                                                                                  
      HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE                                                                     
                       February 11, 2014                                                                                        
                           3:05 p.m.                                                                                            
                                                                                                                                
MEMBERS PRESENT                                                                                                               
                                                                                                                                
Representative Pete Higgins, Chair                                                                                              
Representative Wes Keller, Vice Chair                                                                                           
Representative Benjamin Nageak                                                                                                  
Representative Paul Seaton                                                                                                      
Representative Geran Tarr                                                                                                       
                                                                                                                                
MEMBERS ABSENT                                                                                                                
                                                                                                                                
Representative Lance Pruitt                                                                                                     
Representative Lora Reinbold                                                                                                    
                                                                                                                                
COMMITTEE CALENDAR                                                                                                            
                                                                                                                                
HOUSE JOINT RESOLUTION NO. 20                                                                                                   
Urging the President of the United States and the United States                                                                 
Congress to repeal the excise tax on medical devices.                                                                           
                                                                                                                                
     - MOVED HJR 20 OUT OF COMMITTEE                                                                                            
                                                                                                                                
PRESENTATION: THE CITIZEN REVIEW PANEL                                                                                          
                                                                                                                                
     - HEARD                                                                                                                    
                                                                                                                                
PRESENTATION: KEY COALITION                                                                                                     
                                                                                                                                
     - HEARD                                                                                                                    
                                                                                                                                
PREVIOUS COMMITTEE ACTION                                                                                                     
                                                                                                                                
BILL: HJR 20                                                                                                                  
SHORT TITLE: MEDICAL DEVICE TAX                                                                                                 
SPONSOR(s): REPRESENTATIVE(s) LYNN                                                                                              
                                                                                                                                
01/21/14       (H)       READ THE FIRST TIME - REFERRALS                                                                        

01/21/14 (H) HSS 02/11/14 (H) HSS AT 3:00 PM CAPITOL 106 WITNESS REGISTER REPRESENTATIVE BOB LYNN Alaska State Legislature Juneau, Alaska POSITION STATEMENT: Introduced HJR 20, as the prime sponsor of the resolution. NICK LEWIS, Staff Representative Bob Lynn Alaska State Legislature Juneau, Alaska POSITION STATEMENT: Answered questions during discussion of HJR 20. DIWAKAR VADAPALLI, Chair Citizen Review Panel Anchorage, Alaska POSITION STATEMENT: Presented a PowerPoint titled "Alaska's Citizen Review Panel." MARGARET MCWILLIAMS Citizen Review Panel Douglas, Alaska POSITION STATEMENT: Testified and answered questions during the PowerPoint presentation by Alaska's Citizen Review Panel. CHRISTY LAWTON, Director Central Office Office of Children's Services Department of Health and Social Services Juneau, Alaska POSITION STATEMENT: Answered questions during the presentation by the Citizen Review Panel. MILLIE RYAN, Executive Director REACH, Inc. Juneau, Alaska POSITION STATEMENT: Testified during a presentation by the Key Coalition of Alaska. RHODA WALKER Juneau, Alaska POSITION STATEMENT: Testified during a presentation by the Key Coalition of Alaska. ERIC YANUSZ, Intern Project SEARCH Matanuska-Susitna Regional Medical Center Palmer, Alaska POSITION STATEMENT: Testified during a presentation by the Key Coalition of Alaska. LUANN YANUSZ Palmer, Alaska POSITION STATEMENT: Testified during a presentation by the Key Coalition of Alaska. ART DELAUNE Fairbanks, Alaska POSITION STATEMENT: Testified during a presentation by the Key Coalition of Alaska. MICHELLE GIRAULT Anchorage, Alaska POSITION STATEMENT: Testified during a presentation by the Key Coalition of Alaska. ACTION NARRATIVE 3:05:25 PM CHAIR PETE HIGGINS called the House Health and Social Services Standing Committee meeting to order at 3:05 p.m. Representatives Higgins, Keller, Seaton, and Nageak were present at the call to order. Representative Tarr arrived as the meeting was in progress. HJR 20-MEDICAL DEVICE TAX 3:06:16 PM CHAIR HIGGINS announced that the first order of business would be HOUSE JOINT RESOLUTION NO. 20, Urging the President of the United States and the United States Congress to repeal the excise tax on medical devices. 3:07:09 PM REPRESENTATIVE BOB LYNN, Alaska State Legislature, introduced HJR 20 as the prime sponsor of the bill and explained that the medical device tax was part of the Patient Protection and Affordable Care Act. He questioned whether pacemakers, heart stents, artificial hips, and, he opined, some forms of birth control, should be required to pay an extra 2.3 percent tax. He declared that he was not in agreement with this, offering his opinion that most other people would not support this tax. He read: The medical device tax will substantially increase the already high cost of medical care by some $3.7 billion per year. That money, that tax, the cost of that will be passed down from the medical device developers to manufacturers to health care providers, and ultimately to consumers like us, and like every one of our constituents. The medical device tax takes direct aim at American innovation, by punishing researchers and high tech bio-medical manufacturers, which any one of us or our constituents may need some day. Why tax life saving devices? This tax is anti-business and this tax is bad for patients. This resolution sends a strong message to Congress and to the President to eliminate this tax. REPRESENTATIVE LYNN asked that the committee support passage of the proposed resolution. 3:09:15 PM CHAIR HIGGINS opened public testimony, and there being none, he closed public testimony. 3:09:55 PM REPRESENTATIVE TARR, directing attention to page 1, line 16, of the proposed resolution, which read: "Whereas thousands of layoffs in the United States have already occurred because of the medical device tax," asked for a specific number and if any Alaska businesses had been impacted by this excise tax. 3:10:34 PM NICK LEWIS, Staff, Representative Bob Lynn, Alaska State Legislature, in response to Representative Tarr, said "I don't have an answer to that right now." 3:10:48 PM REPRESENTATIVE KELLER moved to report HJR 20 out of committee with individual recommendations and the accompanying fiscal notes. There being no objection, it was so ordered. 3:11:14 PM The committee took an at-ease from 3:11 p.m. to 3:14 p.m. ^Presentation: The Citizen Review Panel Presentation: The Citizen Review Panel 3:14:16 PM CHAIR HIGGINS announced that the next order of business would be a presentation by Alaska's Citizen Review Panel. 3:16:01 PM DIWAKAR VADAPALLI, Chair, Citizen Review Panel, presented a PowerPoint titled "Alaska's Citizen Review Panel," and stated that the panel presented to the House Health and Social Services Standing Committee every year. Directing attention to slide 1, "Panel's mandate," explained that the function of the panel was to provide oversight and monitor the policies and practices of the Office of Children's Services (OCS). He pointed out that both federal and state law mandated the panel. MR. VADAPALLI moved on to slide 2, "Panel members," and shared that all Citizen Review Panel (CRP) members were volunteers, were a broad representation of the state, and offered expertise and experience in the field of child maltreatment prevention. MR. VADAPALLI spoke about the annual CRP activities, which included an annual report in June, two teleconferences per month, one of which was with the senior leadership at the OCS, and two site visits to different regions and villages across Alaska, slide 3, "Panel's annual activities." He declared that the panel worked about 1000 volunteer hours annually. 3:18:15 PM MR. VADAPALLI pointed to the map, which depicted the sites visited by CRP, slide 4, "Site visits since 2002." MR. VADAPALLI referred to slide 5, "2012-2013 Recommendations and response," which detailed the recommendations by CRP in 2012, and the subsequent responses by OCS. He explained that the panel would present its current work, its lessons from the site visits, and its upcoming goals and work plans. Calling attention to the first recommendation, "Reduce staff turnover," he reported that the staff turnover rate for OCS was almost 35 percent, and he acknowledged the difficulty and intensity for "front line" staff and the "emotionally loaded situations," especially acute in rural Alaska. 3:20:30 PM CHAIR HIGGINS asked about the pay for OCS staff. MR. VADAPALLI replied that it would be necessary to ask OCS for this information. CHAIR HIGGINS asked about the turnover rate. MR. VADAPALLI replied that it had been 34 percent in the past year, and usually varied between 30 - 35 percent. 3:21:25 PM MR. VADAPALLI returned attention to slide 5, and listed the OCS responses, which included development of a recruiting video, experimental scheduling for a week on and a week off, and assessing the cost effectiveness of travel teams to help local workers. He acknowledged that there were still issues to be addressed, including standardization for afterhours work. He assessed the second recommendation, deadlines for non-emergency petitions. 3:23:14 PM MARGARET MCWILLIAMS, Citizen Review Panel, offered some background for this second recommendation, noting that there were two models for the handling of children's cases. The formal model was when a court case was filed, attorneys and guardians ad litem were appointed, and the child could be removed from the home. The more informal model was solely between OCS and the family, was voluntary with no court oversight, and was an intensive outreach to the family to improve the safety of the children in the home, while referring the parents to necessary services. She expressed a concern of the panel that the in home cases were languishing, and nothing was actually being provided to the families, so its recommendation was to file non-emergency petitions to start a court case and court oversight. This would allow monitoring of progress for services to the family, and to address any ongoing reports of harm. In response to this concern, OCS scrutinized its in-home model, in order to improve its services. 3:25:21 PM CHAIR HIGGINS redirected his earlier question regarding the salary range for OCS staff. CHRISTY LAWTON, Director, Central Office, Office of Children's Services, Department of Health and Social Services, replied that the average base salary was about $50,000, and there were significant cost of living adjustments for the rural areas. MS. LAWTON, in response, said that the annual OCS survey indicated that salary was not a major issue for turnover. She listed workload, lack of support, and job stress as the predominant reasons for turnover. 3:26:55 PM REPRESENTATIVE SEATON asked if living quarters in rural areas was on the list of problems. MS. LAWTON replied that OCS had no mechanism to pay for housing, although it was factored in to the cost of living adjustments. REPRESENTATIVE SEATON asked if adequate housing was available to the workers, as it had also been a concern for other professions. MS. LAWTON agreed that this had been a factor, and was an ongoing challenge, in specific communities. 3:28:18 PM REPRESENTATIVE KELLER asked if the recommendations had been compared to those of other states, and if turnover had been compared. MR. VADAPALLI explained that the Citizen Review Panel had a federal mandate, which was limited to the State of Alaska. He declared that OCS in Alaska was not far off the national standard for turnover rate. He pointed out that different regions in Alaska had different turnover rates. REPRESENTATIVE TARR asked Ms. Lawton whether new staff were limited to the cases they were assigned, as it took time to learn. She asked about a report regarding recommendations for additional front line workers. 3:30:31 PM MS. LAWTON said that caseloads were staggered based on a reduced and integrated case load for new staff, dependent upon their experience and training. She acknowledged that staffing shortages did not always allow this to happen. She referenced the study for additional staff, which had suggested hiring 44 new staff, of which 31 were for support positions, including administrative support staff and social service associates, as well as 13 additional community care licensing positions. REPRESENTATIVE SEATON asked about the OCS response to a 2013 recommendation, which he read: "this will be an ongoing effort and adds to a larger initiative to change the culture of being a trauma ridden agency, which results in worker burnout and leaving the agency." He asked what was meant by "trauma ridden agency." MS. LAWTON, in response, explained that there was a national and local push for recognition to the impact of this work on staff. She pointed out that people brought traumatized and victimized incidences to the staff, and the staff absorbed this in a secondary trauma nature. She declared the importance for recognizing these factors and working to improve the culture with more staff support. REPRESENTATIVE SEATON asked for an explanation to the attempts for change to the structure. MS. LAWTON, in response, said that there were a number of different ways for change, both large and small. She reported that local managers and supervisors were now talking about the effects of secondary trauma on staff, and acknowledging that it existed, whereas previously it had not been discussed. She shared that OCS was providing staff with training, and "mechanisms to reach out for self-care, and a system that supports them in doing that." She pointed to efforts with other local agencies also focusing on this trauma issue. 3:34:53 PM REPRESENTATIVE SEATON asked if this was related to the efforts for changing cases to in-home supervision, or strictly to the effects of cases on OCS staff. MS. LAWTON expressed her agreement, stating that it was a desire of OCS to improve workforce stability and retention. She allowed that this challenge was a prevailing factor for the inability to retain staff. MR. VADAPALLI moved on to slide 6, and pointed to the challenge for staffing the Western Region, which was the newest region. He reported that almost 56 villages were administered by the headquarters in Bethel. He explained that for this office to function as a fully equipped region similar to the other regions, it needed several key positions to be filled. He expressed concern that each region should be able to exercise specific functions, including a travel specialist. He shared that travel teams contributed heavily toward reduction of the workload. 3:38:02 PM MS. MCWILLIAMS referred to recommendation 4 on slide 6, "Improve data compilation efforts." She assessed that improvement for collection of the right data would allow better understanding of the trends in family problems and child welfare issues in Alaska. She relayed that OCS had sent a deputy for additional training for data compilation, and that the data from different agencies regarding child welfare was now shared. She reported that access to data from Chapin Hall, a child welfare research institute at the University of Chicago, was still being pursued. She explained that Chapin Hall had data sets about national trends for child protection and welfare issues, which would give OCS a better handle on trends and how to meet them. 3:39:43 PM MS. MCWILLIAMS assessed slide 7, "2013- 2014, Work Plan Goals." She listed screening decisions by OCS, explaining that after a report of harm, an intake worker either screened-in for another worker to investigate, or it was screened-out and not investigated. She opined that both types of decisions had been on the rise, which could explain the rise in reports of harm. She explained that the Citizen Review Panel wanted to review the criteria for screening, and whether it was being used consistently across all the regions. She declared that a second goal was to more closely examine the in-home practice model, which was the informal voluntary service arrangement, with no court oversight, between OCS and the family. She pointed out that cases were handled differently in urban and rural areas. She offered examples of the dedicated in-home units in Anchorage and Fairbanks, which appeared to "be on the right track in terms of making a difference in preserving the family." She informed the committee that this was different in the rural areas, as there was an increased work load per case worker, a lack of services, and challenges for travel. She questioned whether there was a model for rural in-home services. She declared a concern for the lack of oversight and monitoring, which made it difficult to measure safety. These issues, as well as the extreme workload in rural areas, were all going to be monitored more closely in the upcoming year. MR. VADAPALLI discussed concerns for the third goal, "Initial Assessment (IA) Backlog," slide 8, "2013 Work Plan Goals." He recommended that it was necessary to reduce or eliminate the IA backlogs, as these had been a problem in the past. He reported that OCS was diligently monitoring the IAs to ensure no backlog. He remarked that the panel wanted to establish that the backlog was not manifesting in any other caseload. As the panel was established to review systemic issues, the panel wanted to review a sample of case files. He allowed they were in discussion with OCS for a process to facilitate this. MR. VADAPALLI moved on to discuss the final goal, "Service needs assessment in Unalaska." He reported that, as the Unalaska field office had closed, the CRP wanted to ensure there were not any unmet needs in the community. He stated that although OCS had already done this needs assessment, the panel was reviewing it. He reminded the committee that these work plan goals were for the current year, and the CRP was still working through them. He repeated the desire of the CRP to have people contact them with any concerns, which was useful for the setting of goals in the future. 3:46:34 PM MR. VADAPALLI reviewed the three latest site visits, Barrow in September, and Kodiak and Bethel in January, slide 9, "2013- 2014 Site Visits." He identified the major concerns, slide 10, "Current Concerns," and specified that there was a tribal-state work group discussing local tribal relationships with OCS staff. He declared that, although there was not a pattern, there were extremes from great relationships to tension. A second concern was for the shift by OCS from a local to a regional intake. He declared that there was still a great deal "of work to make it really functional," which would require time. He shared a perception that the calls to the regional offices were often not forwarded to the local offices. He declared that a lack of housing options in rural areas had continued to be a problem for recruiting and retaining staff. 3:50:32 PM REPRESENTATIVE SEATON asked for pictures and more detailed evaluations of the problem areas. He clarified that his request was to DHSS and OCS, in order to address some of the difficulties for retention. He suggested that a plan to tackle these problems could then be addressed. CHAIR HIGGINS expressed his agreement that the concerns had been targeted, and he acknowledged a need for an action plan to meet these concerns. 3:52:57 PM REPRESENTATIVE KELLER asked for more information about the relationship and agreement with Barrow. MR. VADAPALLI, in response, clarified that there was no indication of a pattern. He explained that "the native village of Barrow was one of two tribes, if I'm not mistaken, that has exclusive jurisdiction over children, in child of need aid cases." He pointed out that there was an existing memorandum of understanding (MOU) between Barrow and OCS. He shared that although Barrow was not aware of this MOU, whereas OCS was aware of it, both partners needed to be active for the MOU to be effective. He expressed the CRP concern for the needs of the children. He declared that the staff in Barrow had good, strong, long standing, individual relationships in the community; however, there was not a trusting relationship from the local law enforcement with the regional office. He shared the desire to create a more formal framework to foster these relationships in case the current Barrow staff left their positions. 3:56:56 PM MS. MCWILLIAMS furnished slide 11, "Current Concerns," and expressed concern for the in-home model, the increase in the number of screened out decisions, and the backlog for Initial Assessments. MR. VADAPALLI indicated slide 12, "Current Concerns," and declared that, although budget cuts were looming, OCS could not afford any cuts as its key functions were similar to those of public safety, especially in rural areas. He declared that OCS was "already stretched to their limits, and they have very difficult case loads and they have very little budget for essential supplies." He emphasized that OCS could not afford any cuts to its budget. REPRESENTATIVE SEATON asked about the cap on caseloads for OCS staff, and whether it included the less formal, voluntary cases. MS. MCWILLIAMS, in response, said that OCS counted cases by family, which included the voluntary, non-court cases. She said that she did not know about caps on worker caseloads, as the loads varied from region to region. She noted that there was a recommended case load; however, due to staff turnover, workers often had to absorb extra cases. REPRESENTATIVE SEATON asked for an update from OCS about case load caps, although it did not yet appear to have been instituted. REPRESENTATIVE KELLER asked if the CRP responsibility was to look at specific cases and make comprehensive evaluation. He asked how many specific cases would CRP review, and he asked for clarification regarding the confidentiality. 4:03:09 PM MR. VADAPALLI, in response, reported that CRP had performed case reviews only once, since 2002. He explained that, as the case files were extensive, CRP had not done any case reviews. He acknowledged that case reviews were a tool used by many CRPs nationwide to help OCS, without replicating reviews already performed. He reported that a sample of caseloads was typically reviewed for those systemic issues which were under the mandate of CRP. He suggested that even 20 cases would be a lot for seven members of the CRP to review. Regarding the confidentiality issue, he reported that each request of data from OCS did not contain any information that would compromise any individual or family. He relayed that CRP also had a confidentiality rule. CHAIR HIGGINS asked for clarification that no cases had as yet been reviewed. MR. VADAPALLI stated that the review was only a suggested tool and was not part of the mandate. REPRESENTATIVE TARR asked if the reference to extreme caseloads in rural areas was comparative, and whether there were actual numbers. MS. MCWILLIAMS offered her understanding that the target for OCS family service caseloads was 30 - 40, counted by family, although there had been reports from rural areas of 75 cases for a staffer. She declared that this was "way too many" and that the person would not be able to do their job. Stating that CRP was not aware whether this was a daily occurrence, she suggested asking the department. REPRESENTATIVE TARR requested an OCS response, and she then asked if CRP engaged with other safety net organizations for any anecdotal information to areas of concern. MR. VADAPALLI replied that CRP had attempted to reach out to other organizations, although there had not been any outreach for information. He confirmed that CRP met with the local partners during site visits. He pointed out that CRP was trying to recruit and increase its own membership and capacity. 4:09:37 PM REPRESENTATIVE SEATON expressed his concern with previous OCS problems and suggested that the public safety and protection for children in need of aid should be aligned with the Division of Juvenile Justice. CHAIR HIGGINS expressed appreciation and acknowledged that OCS and CRP had a tough job in working "to do the best we can for our children." He declared that there would be answers to the questions that arose. 4:12:21 PM REPRESENTATIVE KELLER asked for clarification to an earlier statement that the federal mandate for CRP was only for Alaska. MR. VADAPALLI explained that there was a federal mandate for each state to have at least one Citizen Review Panel, but that Alaska's Citizen Review Panel was limited to the State of Alaska. 4:13:18 PM The committee took an at-ease from 4:13 p.m. to 4:16 p.m. ^Presentation: Key Coalition Presentation: Key Coalition 4:16:54 PM CHAIR HIGGINS announced that the final order of business would be a presentation by the Key Coalition of Alaska. MILLIE RYAN, Executive Director, REACH, Inc., reported that REACH provided service in northern Southeast Alaska to more than 400 individuals with disabilities. She shared that she was also the secretary for the Key Coalition. She described the Key Campaign as an annual event which brought together individuals with developmental disabilities, family members, service providers, and other advocates to talk with legislators and the administration about issues impacting them. She gave a brief overview of developmental disabilities, as well as the home and community based services available. She defined developmental disability as a severe lifelong disability occurring before the age of 22. She explained that developmental disabilities included intellectual disability, cerebral palsy, epilepsy, autism, and others which resulted in substantial limitations to three of the seven major life areas: mobility, self-care, receptive and expressive language, capacity for independent living, economic self-sufficiency, and self-direction. This all required that individuals receive a combination of services which would change according to their needs. She reported that home and community based services helped individuals with developmental disabilities to live successfully at home and stay in their local communities, either with families or on their own. She explained that the services were individualized to each person's needs, and, as they changed over time, it allowed people to live to their full potential, and become contributing, productive members of the community. She directed attention to the Complex Behavior Collaborative (CBC) and its success for keeping people with intensive behavioral needs living in Alaska. 4:19:57 PM RHODA WALKER reported that she and her husband were the grandparents of a severely autistic, non-communicative 15 year old young man. She shared that she had been the subject of his rage attacks until one year prior. She declared that the CBC had directed them to a behaviorist, who had worked with her grandson, as well as her and her husband, the school, and the care givers. She established that there was now a behavior plan that was extremely successful. She affirmed that her grandson had now graduated from the behavior list, and the rage attacks were less often. She observed that a year prior, the only future she envisioned for him was in an institution, but that the CBC program had given her grandson a life and a future. 4:21:53 PM REPRESENTATIVE TARR asked for more detail about the behaviorist services and its frequencies. MS. WALKER replied that initially the rage attacks had been daily and very violent. She explained that the behaviorist met with her grandson daily, and offered specific suggestions for him. She shared that the initial response by her grandson had been for worse behavior, as the program was drastically changing his life. As her grandson became settled with the program, the behaviorist came less frequently, although she was always available for telephone contact. CHAIR HIGGINS asked how many behavior specialists were available. MS. RYAN explained that the CBC had "a stable of experts, that are located some in-state, and some out-of-state." The CBC would determine which expert was available, and who would best fit with a specific individual. The expert would then come to the community and work with the family and the service provider to develop the best program. MS. RYAN stated that the next item for discussion was with regard to employment for people with disabilities, and she referred to proposed HB 211, which was "an employment first bill, that the outcome of publicly funded services for youth and adults with disabilities is employment." 4:25:36 PM ERIC YANUSZ, Intern, Project SEARCH, Matanuska-Susitna Regional Medical Center, described his projects and his responsibilities. He shared that he had worked in day surgery and food service as an intern, and that he now wanted to find a paid job, instead of volunteering. He explained that he had been on the wait list [for services] since 2002. 4:27:03 PM LUANN YANUSZ confirmed that she was Eric's mother. She affirmed that, as a parent, you wanted your child to be independent and able to support themselves, while having a healthy and happy life. She shared that children with a disability needed other kinds of support to attain this happy and healthy life. She noted that a parent was not sure of what to expect, or how far their child could go. She reported that the skills learned in Project SEARCH included following directions, work ethic, employer expectations for daily attendance and good appearance, communication, the chain of command, and initiative. She conveyed that her son had brought those skills back to their home, as well. She expressed her hope that Eric, as he would soon be 21 years-of-age, would now be able to transition directly to a job, to become more independent, to decrease his reliance on public benefits, and to increase his self-esteem and self-worth. She mentioned that Eric was reliant on routine, and that structure was important. She expressed her desire that he transition directly into a job, in order to keep the motivation, and she stated her hope for his long, successful work experience in Alaska. She asked for support to decrease the wait list for services, as the recipients would continue to need supported living. She noted that Eric would need job coaches and supported employment until he learned the routine. She expressed her desire that he be included with his peers in the work force, with compensation at the level of his peers. She added that Project SEARCH had a very good success rate. 4:31:34 PM REPRESENTATIVE TARR noted that there were 652 individuals and families still on the wait list [for services]. She opined that the goal would be an end to the list in a few more years, and she asked for clarification that the family had been on the wait list since 2002. MR. YANUSZ declared that he still wanted to get off the list. MS. YANUSZ, in response to Representative Tarr, said that Eric's respite was supported with grants from Mat-Su Services for Children and Adults. She established that her family was not yet in a critical need situation, as Eric was not homeless and had not become a parent, things that put you higher on the wait list. She reported that, as Eric graduated into the work world, the waiver was necessary to continue the services that they had sought out for him. CHAIR HIGGINS declared that everyone was excited for Eric and his first paycheck. 4:33:29 PM MS. RYAN, in response to Representative Tarr, expressed her agreement with the numbers on the wait list, which she declared was now lower since the Governor's Council on Disabilities and Special Education first convened in 2006. She pointed out some problems with the old system, and noted that the legislature had allocated $2 million of state and federal funds to "jump start the recommendations." She reported that the Division of Senior and Disabilities Services had, since 2007, routinely drawn 200 people each year, based on need. She allowed that this current system was again being reviewed for its effectiveness. She reported that, although progress had been made for lowering the wait list numbers, there were always new people being added to that list. 4:35:13 PM ART DELAUNE shared that he had two sons with Fetal Alcohol Spectrum Disorder (FASD) and developmental disabilities. Referring to his youngest son, he reported that this son had completed all his high school requirements in five years, with the exception of the exit examinations. The desire to work and pass these exams had spurred his son to an additional year and a half of school, which resulted in passage of the exams. He detailed his son's search for permanent employment, and the resulting contact with an employment specialist, who had suggested a sheltered work experience. His son had, instead, returned to the Division of Vocational Rehabilitation, Department of Labor & Workforce Development, which recommended a new process called "Discovery," as well as "Access Alaska," for a closer review of his skills and desires. He then entered a work experience program at Fred Mayer, as he wanted to be a meat cutter. MR. DELAUNE declared that this experience had increased his son's self-esteem. Over the last few years, his son had stated that he was tired of people giving him things. Although his son was now eligible for social security supplemental income benefits, Medicaid, and other state benefits, he preferred to be off benefits, providing for himself. He opined that, with support, his son would be able to continue working toward self- care. Directing attention to the Medicaid intellectual and developmental wait lists, he declared the importance of these services for support to those transitioning from childhood into adulthood. He reported that there were still more than 650 families waiting for services, all of them experiencing "the anguish, the frustration, and the overwhelming unknown, the fear of not knowing what's gonna happen with their children." He reported that his two sons had been on the wait list for 16 months and 13 months respectively, although they were declared to be too high functioning to be eligible for the [Medicaid] waiver. He stated that families had expectations for "something to happen at the end of the tunnel," a hope that services would become available. He emphasized that families were "in anguish and really its problematic for them waiting that long for services." He asked for committee support to work toward elimination of the wait list. 4:40:03 PM REPRESENTATIVE TARR asked about the relationship between Medicaid waivers and private insurance for a family. She reminded that private insurance had been expanded to include coverage of services for autism spectrum disorder. She asked if there were any other opportunities for similar services. MS. RYAN replied that most long term services were not covered by private insurance. MR. DELAUNE expressed his agreement that many of the services were limited to a few sessions. CHAIR HIGGINS asked what was lacking for the fulfillment of services to those on the wait list. MR. DELAUNE, in response, stated that he did not understand why eligibility was not determined before being put on the wait list. MS. RYAN referred to the aforementioned grants for services, for those who did not meet the more strict requirements for waivers. She reported that grant funding had "remained stagnant over the years." MR. DELAUNE expressed his agreement that his youngest son had received grant funding, although earlier determination of eligibility for waivers would have allowed for an earlier pursuit of grant funds. 4:42:41 PM MICHELLE GIRAULT, offered a retrospective for the work done in Juneau by the Key Campaign during the last 27 years. She recalled the earlier years when children had to leave their homes and the State of Alaska for out of state institutions. She reflected on the closure of the in-state institutions in the 1990s, with a focus on individuals being included in the community. She shared that individuals were now able to live with their families, get the services, and be included in the schools. She declared that "kids with disabilities are part of our Alaskan community and all of us want to have a state where we feel like every citizen belongs and has value." She lauded the current initiatives of the Key Campaign. Referring to the employment first initiative, she opined that, as many people define ourselves by our jobs, this is "how we give value to each other and to our communities." She declared her desire that individuals who were differently abled have the same opportunity to feel they were contributing members. She acknowledged a need to reduce the Medicaid budgets, and emphasized that people working in the community were less dependent on those subsidies. She asked for consideration that the aforementioned CBC become a $450,000 increment of the governor's budget, in order to keep people out of institutions, keep families intact, and create support plans for individuals. She declared that keeping individuals out of institutions increased the quality of life for everyone. She expressed her desire to eliminate the wait list for services, noting that service was much cheaper than crisis intervention. She urged that the future of Alaska continue to embrace those who were differently abled to live and work in their own communities. 4:47:11 PM ADJOURNMENT There being no further business before the committee, the House Health and Social Services Standing Committee meeting was adjourned at 4:47 p.m.

Document Name Date/Time Subjects
HJR020 Ver A.pdf HHSS 2/11/2014 3:00:00 PM
HJR 020 SPONSOR STATEMENT.pdf HHSS 2/11/2014 3:00:00 PM
HJR 020 SUPPORTING DOCUMENT Legislative Research Report HJR20 2013 14-133 with footer.pdf HHSS 2/11/2014 3:00:00 PM
1 Key 2014 PRIORITIES Book 2014 FINAL.pdf HHSS 2/11/2014 3:00:00 PM
CRP 2014 HSS Committee Presentation 02072014.pdf HHSS 2/11/2014 3:00:00 PM