GOVERNOR'S COUNCIL ON DISABILITIES AND SPECIAL EDUCATION. Autism Ad Hoc Committee MINUTES. LOCATION 3601 C Street, Anchorage, Alaska

Transcription

1 Attendees: GOVERNOR'S COUNCIL ON DISABILITIES AND SPECIAL EDUCATION Autism Ad Hoc Committee MINUTES LOCATION 3601 C Street, Anchorage, Alaska Meeting Date: November 20, :00 a.m. Jill Burkert, Chair Amy Sundheim Anne Paley Annette Blanas Carmen Wenger Carrie Silvers Chris Saddler Danielle Tessen Denys Collins Dr. Matt Hirschfeld Dr. Kristi Fuller Dr. Siv Fasci Eric Jordan Heidi Haas Jimael Johnson John Barrowman Joni Stumpe Karen Ward Kim Burnett Laurie Lopez Margaret Kossler Maureen Harwood Meghan Clark Randall Burns Rachel White Rebeka Edge Rebekah Morisse Roy Scheller Sandra De-Hart-Mayor Scott Sidell Terese Kashi Staff: Christie Reinhardt Lanny Mommson Minutes Prepared by: Paula DiPaolo, Peninsula Reporting

2 Call to Order 10:00 a.m. Roll Call WELCOME AND INTRODUCTIONS Christie Reinhardt and Jill Burkert welcomed participants to the meeting, and roll call was taken and introductions were made. Conflict of Interest Declarations There were no conflicts of interest declared. Approval of the Agenda Meghan Clark MOVED to approve the agenda, SECONDED by Rachel White. Hearing no objection, the motion PASSED. Approval of Previous Meeting Minutes Annette Blanas MOVED to approve the minutes from the April 12, 2017 meeting, SECONDED by Meghan Clark. Hearing no objection, the motion PASSED, and the minutes were approved as presented. MEETING OVERVIEW Christie Reinhardt referred committee members to the Autism Ad Hoc Committee s strategic plan, noting that they will be reviewing their progress and accomplishments. She noted that they will be adding a section to the work plan to denote accomplishments. She also stated that the transcript of today s meeting is available to attendees who request it. PRIORITY AREA 1: SCREENING AND DIAGNOSIS Providence Clinic Dr. Siv Fasci, pediatric neurodevelopment specialist at Providence Hospital, reported that they have started a general developmental evaluation clinic at Providence and are seeing patients. They are currently working to add a clinical psychologist to the team as well as incorporating a speech pathologist and occupational therapist. She explained her evaluation process with members of the committee. Dr. Siv Fasci opened up her presentation to Q&A and some of the following additional topics were discussed: Patient re-evaluations Utilizing the power of ECHO Autism to empower referring providers and Special Education November 20, 2017 Page 2

3 The importance of a family navigator within this clinic The differences between re-evaluations for Medicaid waiver and an educational qualification. ANMC Clinic Dr. Matt Hirschfeld reminded members of the committee that Alaska Native Medical Center (ANMC) has been in the process of building a multi-disciplinary neurodevelopment clinic, which will officially open in October. They have hired Dr. Randall Zernzach as the medical director to oversee four separate teams lead by nurse practitioners that will cover the state in the areas of Nome/Kotzebue, Barrow/Fairbanks, Southeast, and Dillingham/Bethel. They will be focusing on diagnosis and treatment for children with neurodevelopmental disorders. Dr. Zernzach is currently part time with ANMC and will start seeing patients in Alaska in April Dr. Matt Hirschfeld stated that they plan to do most of the treatment and follow up via telemedicine out in the villages. He also noted that ANMC will be seeing primarily Alaska Native children, but they may enter into an agreement with the military should they not be able to recruit a physician. He looks forward to working hand in hand with Dr. Fasci to blanket the state with neurodevelopment services. Dr. Matt Hirschfeld commented that the success of hiring two neurodevelopmental pediatricians in Alaska as well as the ANMC clinic is as a result of the work of members of this committee. Outreach Clinic Meghan Clark from the Center for Human Development reported that she has been working the past four years in supporting the neurodevelopment outreach and screening clinic that has been focused on autism. She noted that they have recently included diagnosis into the screening clinic. Neurodevelopmental pediatricians Dr. William Walker and Dr. Beth Ellen Davis run the clinic, and the clinics are located in Fairbanks, Mat-Su, Ketchikan, Bethel, and Juneau. They visit the Fairbanks and Mat-Su sites twice a year. Meghan Clark reported that 75 percent of the children they see leave the clinic with a diagnosis of autism. The other children that still have a concern but did not receive a diagnosis are referred to Providence. Rebekah Morisse added that as ANMC starts traveling to rural Alaska with their new clinic and the Providence clinic s practice is built up, CHD will need to coordinate with those entities to ensure they aren t duplicating services and are maximizing their potential. and Special Education November 20, 2017 Page 3

4 Universal Developmental Screening Task Force Christie Reinhardt reported that the Universal Developmental Screening Task Force had a full-day meeting in September, during which time they developed a plan and a timeline. She stated that they have secured two LEND fellows that will be doing a LEND project to help with this work. The project is to look at where young families get healthcare information, particularly special healthcare information. One aspect of the project will involve researching information available and what keeps young families disconnected from information, and the other aspect of the project will be interviewing other states that have rolled out universal screening to determine what tools they have used and to get lessons learned. Carmen Wenger added that one of the goals of the task force is to get a landscape analysis of where screening is happening, what populations are being targeted, and to identify any gaps. A recent survey to statewide stakeholders was just conducted, and the data analysis will begin shortly. She will report back to this group on the results of the survey. Review Plan Priorities Members of the committee discussed the long-term and short-term priorities under Priority Area 1, and Lanny Mommsen amended the plan as requested. This document will be finalized and distributed to committee members. PRIORITY AREA 5: FUNDING, BILLING, AND SYSTEMS ISSUES Randall Burns, director of the Division of Behavioral Health, along with Rick Calcote and Terry Hamm, reported to the committee on the recent regulation package regarding autism services. Randall Burns stated that they are in the process of making changes to the regulations based on the public comment received, and the package will then go to the attorney general s office for review. He highlighted some of the areas of the regulation package they will most likely amend: Probable removal of the fail first requirement. Prior authorization will be required, but probably not in respect to the initial requirement before services begin. They are going to revisit the soft caps and the current limits on the services on a weekly basis. They are going to revisit the service limits and will possibly move away from that. Increasing the certification requirements for a lot of the professionals and technicians providing services under the 1115 waiver. They will receive legal guidance on billing for supervision. Considering adding something like a non-relative adult caregiver into the regulations. They will not be renaming the regulations. and Special Education November 20, 2017 Page 4

5 Randall Burns stated that they are still working on setting the rates for these new services to be provided under the 1115 by using the rate methodology developed by the Office of Rate Review for other Behavioral Health rates. Randall Burns stated that historically Behavioral Health has not paid for rehab services via telemedicine, and they don t have much data or research that the delivery of autism services can be effectively done via telebehavioral health. They have not currently reached a conclusion on this topic. Kim Burnett asked if the division would still be receptive to receiving more research on the efficacy of telebehavioral health and autism services since the public comment period has closed. Randall Burns stated that they would be receptive to receiving that information. Randall Burns stated that they anticipate completion of this process in three to four months. Review Plan Priorities Members of the committee discussed the long-term and short-term priorities under Priority Area 5, and Lanny Mommsen amended the plan as requested. This document will be finalized and distributed to committee members. PRIORITY AREA 2: WORKFORCE DEVELOPMENT AND TRAINING FOR PROFESSIONALS, EDUCATORS, FAMILIES, AND COMMUNITY PARTNERS Capacity Building for Autism Interventions (CBAI) Rachel White reviewed some data with members of the committee as follows: 1,446 children with autism identified in the state: 665 in Anchorage, 156 in Fairbanks, 73 in Juneau, 118 in the Kenai Peninsula, and 217 in Mat-Su School District. There are 48 certified behavior analysts listed with the Behavior Analyst Certification Board (BACB) that list Alaska as their state. In the state of Alaska, there are 44 active BCBA licenses: 27 in Anchorage, 5 in Mat-Su, 8 in the Fairbanks region, 3 plus in Southeast, 3 in the Gulf Coast, and zero in the Northern and Southwest regions. There are 83 registered behavior technicians (RBTs) listed with the BACB: 19 in Mat-Su, 28 in Fairbanks, 31 in Anchorage, 3 in Juneau, and 2 in other areas. Rachel White then reviewed how these numbers affect services for students with autism. For example in the Anchorage School District, there are 665 children and 27 BCBAs and 31 RBTs. Each BCBA would have to serve 25 children, and the RBTs would each be working with 22 children. Although Alaska has seen improvement, mathematically they are short of where they need to be in all areas of the state. Guidelines from the BACB state that BCBAs should work with between 8 and 12 clients, and Special Education November 20, 2017 Page 5

6 and 10 or less clients for RBTs. Rachel White shared the following additional capacity building activities they are engaging in: BCBA/BCABA supervision Applied behavior analysis ECHO launching in December Autism Institute to include workshops for parents RBT distance training. Committee members discussed various other topics related to behavior analysts such as having enough BCBAs that would be willing to supervise the added number of RBTs in the state as well as efforts made to recruit for unserved areas. Christie Reinhardt shared news from Veronica Howard at UAA that UAA has greater support within the department to develop graduate level coursework in behavior analysis to help meet their new 2020 goals targeting workforce development. They hope to have the courses developed for university approval by early Center for Human Development ECHO Projects Meghan Clark reported that the Center for Human Development is involved in three ECHO projects right now, the BCBA ECHO, Autism ECHO, and the TABI ECHO for brain injury, which doesn t have a launch date yet. They are also investigating a behavioral ECHO as well as an educational ECHO that targets teachers and aides. Meghan Clark stated that Autism ECHO launched this year, and it is still in the pilot phase. Another meeting will be held December 4 th. They have their primary hub team members assembled, and under the direction of Dr. Fasci are looking at incorporating more curriculum elements as well as maintenance of care credits. The hard launch will be in January. The target audience is primary care providers, pediatricians, and early interventionists, and their primary focus is on screening. They will also be expanding the project beyond autism, although autism is the major focus moving forward. Family Navigation Annette Blanas stated that they have completed their first full revised family navigation training that was presented to the Help Me Grow folks. They have four trainings scheduled, and they still have openings for the March and April trainings. Annette Blanas stated that they are working to develop a family navigation training specific to the FASD population. Once that is complete, they are hoping it will become part of the required training for navigators working with that population. They are also exploring developing a simplified navigation training for people who English is their second language, and are reviewing the possibility of offering the current or a simplified navigation training for high school students who are interested in entering healthcare. and Special Education November 20, 2017 Page 6

7 Annette Blanas stated that they are exploring funding for family navigators based on the job duties being similar to case management. Christie Reinhardt noted that other states engaged in Medicaid redesign were able to put family navigation into their state plans. Review Plan Priorities Members of the committee discussed the long-term and short-term priorities under Priority Area 2, and Lanny Mommsen amended the plan as requested. This document will be finalized and distributed to committee members. PRIORITY 3: EARLY INTERVENTION AND EDUCATIONAL SYSTEMS Infant Learning Program Maureen Harwood stated that she will send the most recent numbers of contacts out to committee members. She stated that they have some infant learning providers who have been exploring autism navigators. She noted that she shares information with infant learning providers about resources other states are exploring. Maureen Harwood stated that they will be exploring fiscal sustainability at the program level, and they are looking at billing codes that might help in terms of services. Gould Project Laurie Lopez with Alaska Child and Family reported that based on a community assessment, they are going to be opening up an autism day treatment program starting January 8 th, in partnership with the Anchorage School District, that will serve children in 2 nd through 5 th grade with BCBA services and three RBTs. They will also be able to offer home services to bridge what is working in the school environment with the children s homes. She stated that they are going to start off with four students and grow from there. The students who will be eligible for this program will have an autism diagnosis on their IEP and will be students who need more intensive services than they are able to receive in the classroom. Christie Reinhardt commented that this is an incredible opportunity for not just the children, but for some system-wide program development between mental health providers and school districts. Christie also acknowledged the grant awarded to Alaska Child and Family by the Alaska Mental Health Trust Authority to launch this pilot. School Psychologists Christie Reinhardt stated that Amy Sundheim has graciously offered to conduct a survey of school psychologists to determine their level of autism understanding, what tools are used, what tools they ve been trained on, and what their comfort level is regarding eligibility and diagnosis. and Special Education November 20, 2017 Page 7

8 Amy Sundheim reported that the Kenai Peninsula School District has 11 school psychologists to cover the entire Kenai Peninsula. The school psychologists are trained in using what are considered the gold standard for diagnostic instruments in conducting comprehensive diagnostic evaluations for autism. If the school psychologists need more information from the medical perspective or a differential diagnosis, then those children would always be referred out to other providers. They are also collaborating with local medical providers who can then provide some follow-up with families. Anne Paley added that the Anchorage School District always has open positions for school psychologists that aren t filled. She suggested they have a conversation with Dr. Murphy at UAA to revisit the conversation about a program for school psychologists within the state to address the workforce shortage. Review Plan Priorities Members of the committee discussed the long-term and short-term priorities under Priority Area 3, and Lanny Mommsen amended the plan as requested. This document will be finalized and distributed to committee members. PRIORITY AREA 4: INTEGRATED AND COMPREHENSIVE SERVICES Help Me Grow Carmen Wenger provided a brief introduction to Help Me Grow by stating that it is now being used in well over 20 states by 50 affiliates. Help Me Grow is a model around linking children with services. The program is based around the following four core components: Centralized access point call center for referral to services and care coordination. The contract agency in Alaska is thread. Data collection and analysis through a family-centered model. They will also be building an evaluation component into this as well as a way to track referrals that couldn t be completed. Family and community outreach. Child health provider outreach. Help Me Grow is going to go live in January with the three pilot sites from the Early Childhood Comprehensive System of Norton Sound, Kodiak, and Mat-Su. They are targeting to begin the project for children 0 to 8 years old with the hope that they can expand the program from prenatal to 25. Carmen Wenger stated that they have been working closely with the ILP program, and they ve been set up as an enterprise to be able to offer ASQ on paper and online. Carmen Wenger also stated they are looking for volunteers to do some role playing and mock phone calls as they train their care coordinators for their call center positions. and Special Education November 20, 2017 Page 8

9 Review Plan Priorities Members of the committee discussed the long-term and short-term priorities under Priority Area 4, and Lanny Mommsen amended the plan as requested. This document will be finalized and distributed to committee members. AUTISM CENTER Christie Reinhardt informed committee members that they will need to table any discussion about the creation of an Autism Center to a meeting where they can dedicate the majority of their time to the topic. ADULT SERVICES DISCUSSION Christie Reinhardt stated that as children with autism are aging in the state of Alaska, they determined that there is a need to gather data about where students are transitioning to when they become adults. She shared some data that she received from DVR regarding employment results of adults with autism as follows: 175 individuals with disabilities 54 cases were closed with no employment 27 cases were closed with employment 13 were employed but hadn t reached ninety days unemployment with the timeframe 81 were in the process to be determined eligible for service with no employment but had submitted an application A total of 23% were employed that had been accepted by DVR 73 individuals were between the ages of 17 and individuals were between the ages of 22 and of the individuals with co-occurring disorders had autism and a cognitive impairment. Christie Reinhardt stated one thing they don t know is of those who found employment, was it meaningful employment? One of the big problems with adults with autism is that they oftentimes have depression because of not being able to get employment that matches their skill set. Maureen Harwood shared statistical information regarding supports for people with autism on the Medicaid waiver as follows: Total number of people on the I/DD waiver 2, are children, 1,637 are adults 231 of those children have a primary diagnosis of autism 259 adults have a primary diagnosis of autism 13 children had a secondary diagnosis of autism 50 adults had a secondary diagnosis of autism and Special Education November 20, 2017 Page 9

10 Of the 300 individuals drawn for the Individualized Supports Waiver, 50 individuals had autism. Committee members engaged in a discussion regarding where adults with autism over the age of 18 are living, and Maureen Harwood stated that she would have to research getting that data, which would only be available by region, not housing type. Committee members discussed workforce needs, workforce training needs, and the importance of supporting family caregivers, particularly as caregivers are aging. Roy Scheller, CEO of Hope Community Resources, stated that there about 175 people with autism that Hope serves. He shared that the research is clear that if a person who experiences autism doesn t have job experience as they leave high school, they will not be employed. Hope is going to intensify their supported employment and focus on children 15 years of age on up to begin pre-employment services. They are also going to start a focus on good citizenship. Roy Scheller also stated that at Hope, 92 percent of services can be delivered within the availability of their workforce, but what they are finding is that the demands of the workforce have changed, particularly with providing services to families with children who want services provided only after school and on the weekends. Hope used to have 90 percent of their employees employed full time, and now they are down to 60 percent employed full time, and there are issues associated with having such a large percentage of their staff as part time. Roy Scheller stated that Hope has after-school programs for young children with autism, teens who experience autism, and other regular integrated inclusive community programs. Roy Scheller also shared that 80 percent of people nationally who experience any kind of disability never enter the system. Once they leave the school system, they receive all of their supports at home. WRAP UP Christie Reinhardt asked members of committee for any suggestions of other individuals that should be part of this committee going forward. Anne Paley suggested someone from the mental health community. Also suggested was an individual from UAA who is looking at expanding beyond the Tapestry program. ADJOURNMENT The meeting adjourned at 4:33 p.m. and Special Education November 20, 2017 Page 10