Regional Autism Assistance Program Expert Panel Meeting Minutes

Transcription

1 Regional Autism Assistance Program Expert Panel Meeting Minutes Wednesday, August 27, :30 pm 4:30 pm Teleconference Name Organization Represented Present Theresa Armstrong Alyson Beytien Josh Cobbs James Curry Peter Daniolos Department of Human Services Hills and Dales - Dubuque Pier Center Iowa Autism Council/Family Member UI Hospital and Clinics Child Psychiatrist George Estle Tanager Place Barbara Guy (Sean Casey & Wendy Trotter) Department of Education Barbara Khal Child Health Specialty Clinics - Regional Autism (Tara Underwood-Levin) Assistance Program Laura Larkin Department of Human Services Scott Lindgren UI Children s Hospital Autism Center Marilyn Seemann MHDS Commission Member/Service Area Manager Toni Fuller Merfeld MetroWest Learning Center Steve Muller The Homestead Nathan Noble Blank Children s Hospital/Unity Point Health- Developmental Pediatrician Tracey Page ChildServe Kristine Steinmetz Autism Society of Iowa/Family Member Debra Waldron Other Attendees Present Rep. Dave Heaton (Carrie Malone) Heather Hanzlick-Jaacks Peggy Swails Leslie Huber Erika Hertel Child Health Specialty Clinics - Regional Autism Assistance Program Iowa Legislator Tanager Place

2 Welcome and Roll Call Facilitator: Dr. Debra Waldron Dr. Debra Waldron provided a brief overview for the meeting and explained that today s meeting has an outline of agenda topics which are designed to generate discussions in response to the CMS Informational Bulletin released on July 7, 2014 entitled, Clarification of Medicaid Coverage of Services to Children with Autism. This meeting will be more informal due to the discussion-type format. Dr. Waldron opened the meeting requesting a family member s perspective on the CMS Information Bulletin. There was no discussion. The discussion then transitioned to the role of the Expert Panel. Steve M. stated that he wants to delineate that what the Expert Panel is discussing today does not change the Autism Support Program (ASP), which does not rely on Medicaid. Steve emphasized that today s discussion does impact the same population. Dr. Waldron clarified the role of the Expert Panel, which is to provide expertise to the Regional Autism Assistance Program (RAP) and to offer guidance to the state s Autism Support Program. Dr. Waldron informed the Expert Panel members that there will be a new Autism Spectrum Disorder (ASD) Advisory Council created based on a recent grant award CHSC recently received. Dr. Waldron explained that this Advisory Council will be comprised to interface between the Iowa Autism Council and the RAP Expert Panel. This topic will be discussed later in the agenda. George E. asked Laura if the Department of Human Services has a position on this topic (CMS Information Bulletin). Laura responded that the Department does not have a position at this time. Dr. Scott Lindgren stated that an important issue the CMS bulletin evokes is that Medicaid could cover the entire age range (0-21) covered by EPSDT. The biggest issues, per Dr. Lindgren, are: (1) funding beyond Applied Behavior Analysis (ABA) services, and (2) expanding the age of access. The latter (expanding the age of access) could be incredibly important and incredibly expensive. Tracey P. agreed with Scott on those points, reiterating that this potentially broadens the age and range of services. Dr. Waldron stated that policy changes through Medicaid should not impact the ASP fund because of the specific eligibility requirements. Laura L. expanded by reporting that any child who is on Medicaid and applies for the ASP results in discussions between Magellan and Medicaid. Laura went on to clarify that the ASP is reserved to support non-medicaid children. Laura informed the group that any changes in what Medicaid covers will not put any additional pressures on the ASP funds. After additional discussion, it was agreed that children younger than 3 years who may be eligible for ABA coverage (should the Medicaid state plan change to provide ABA coverage for children younger than 3 years), could potentially impact the number of children eligible to be served in ASP. Steve M. added that The Homestead is concerned for families who are under age 3 and over age 9. The current plan (ASP) is a good first step and has helped impact families that didn t have the opportunity for ABA otherwise. Steve suggests providing the same level of service to 10-, 11- and 12-year olds. 2 P age

3 It was suggested and agreed upon that the Expert Panel request a meeting with Medicaid and ask Magellan to join. Questions that could potentially be asked are, What would be the best approach based on the CMS bulletin? and, What kind of time- line are we looking at to re-write or implement a new Medicaid State Plan? ACTION ITEM: CHSC will take responsibility of reaching out to Medicaid colleagues to invite them to the September 18 th Expert Panel meeting. Sally Nadolsky is the contact with Medicaid. Steve M. asked if there is any matrix to know how the ASP is being utilized. Laura L. has the ASP numbers from Magellan but wants to confirm before presenting. She will provide that information at upcoming meetings on September 10 and 18. Steve M. then asked about outreach efforts. The Homestead had a nice article printed in the Des Moines Register. Dr. Waldron was interviewed, along with Alyson Beytien, on Iowa Public Radio, Tracey Page reported that ChildServe has been putting a lot of information on their website, but has not done in media. Kris Steinmetz reports that the Autism Society of Iowa (ASI) has sent information out on their e- newsletter. ASI heard from several families in southern Iowa after that e-newsletter was distributed who could benefit from accessing ABA through ASP, but there are no ABA providers in their geographical region. ACTION ITEM: Dr. Waldron requested that Panel members all information related to sharing and outreach activities to Leslie Huber (leslie-huber@uiowa.edu) and Peggy Swails (peggy-swails@uiowa.edu) so those efforts can be tracked. UPDATE ON RAP OUTREACH ACTIVITIES Additional outreach efforts have been occurring with each of the 13 RAP teams across the state while they venture out in their local regions by participating and organizing various outreach events. For example, one Family Navigator from the Creston CHSC Regional Center office recently assisted in organizing a Splash for Autism event. Other RAP team members have been attending local AEA educational opportunities to target staff as they go back to school. Green Hills AEA, for example, is having a series of educational opportunities through their Autism Academy. They host monthly events with different topics related to Autism in their Creston and Council Bluff offices. Our RAP team members have been invited to speak at these events as a variety of people attend, including educators, medical providers, service providers, family members, etc. Marketing materials have been purchased and are being disseminated, which include pens, magnets, stress-balls, and a banner for displays at conferences and other events. Dr. Waldron then asked the Panel about the status of telehealth exploration as outlined in the legislation, and whether telehealth exploration activities should be presented to Magellan as a potential venue for delivering ABA services in remote areas of Iowa through telehealth modalities. Dr. Lindgren responded and said they (UIHC CDD) have held some discussions with Magellan, but there s been no specific proposal. Dr. Waldron posed to the panel the idea of ramping up the efforts to utilize telehealth through ABA outreach. Toni M. stated that she is very much open to exploring this. She went on to say that MetroWest works with families in the Fort Dodge area utilizing telehealth would be very beneficial. 3 Page

4 There was lengthy discussion on the clarification of ABA and how Magellan and Medicaid define ABA services. Laura referenced language following the state mandate from several years ago, although it is a rather broad definition. Dr. Waldron stated that telehealth is being utilized effectively to connect families, provide family support and care coordination. However, she believes some concerns expressed by Panel members are more about the provision of ABA or those types of services through telehealth. It was agreed that the issue of ABA definition and using ABA services through telehealth will be added as a discussion topic at the next Expert Panel meeting. Dr. Waldron then shared information with the Panel members on the newly awarded HRSA grant entitled, Improving Services for Iowa s Young Children with Autism Spectrum Disorder and Other Developmental Disabilities. This is a 2-year project beginning September 1, Dr. Waldron outlined the three main project goals: 1) Improving the roles of families in our system in Iowa; enhancing their knowledge of resources; involving families in shared decision making; 2) What the RAP can do at the community level in making sure there is enhanced care coordination available for all children and families living with ASD/DD. 3) Advisory committee All Expert Panel members wrote a letter of support and will be asked to be on this advisory committee (which will be expanded to include more family members, educators, Early ACCESS providers, and individuals with ASD). ACTION ITEMS An abstract from this new HRSA grant will be sent to all of the Expert Panel members when the meeting minutes are distributed. CHSC will take responsibility for obtaining RSVPs so the Panel will know who will be present. Steve M. chairs the Iowa Autism Council and is going to add this new grant award on the next meeting s agenda so the Council can hear this presentation. The next Iowa Autism Council meets on September 10, The next Expert Panel meeting will meet virtually September 18, 2014, from 2:00 4:00 pm. Attachments to the Minutes 1 Abstract: Improving Services for Iowa s Young Children with Autism Spectrum Disorder and Other Developmental Disabilities. 4 P age

5 PROJECT ABSTRACT Waldron IA-ASD/DD HRSA Project Abstract Project Title: Improving Services for Iowa s Young Children with Autism Spectrum Disorder and Other Developmental Disabilities Applicant Name: Child Health Specialty Clinics Address: 100 Hawkins Drive, Room 247 CDD / Iowa City, IA Project Director: Debra Waldron, MD, MPH, FAAP Contact phone: Fax: debra-waldron@uiowa.edu PROBLEM: There is a need to unify Iowa s system components so there is communication, integration, and synergy to create a seamless system of care for Iowa s children with ASD/DD and their families. A model for effective coordinated service delivery at the community level is necessary. Early and timely identification, diagnosis, and treatment are essential. Family involvement in all aspects of program design and implementation and policy development are integral to system improvements. GOALS AND OBJECTIVES: Using the framework of an ecological systems theory model, (1) Improve the role of families in the IA-ASD/DD system of care. (Objectives-improve awareness of early signs; increase knowledge of resources; develop families shared decision making and advocacy skills impacting all system levels; promote access to family support organizations.) (2) Promote Regional Autism Assistance Program s role in supporting and coordinating family centered community based centers of services for children with ASD/DD. (Objectives-social marketing campaign; technical assistance and training for workforce development; enhance coordination with autism centers and medical homes; increase community capacity; access to evidence-based services.) (3) Strengthen the statewide coalition working on ASD/DD initiatives in Iowa (Objectives-convene advisory committee; create web-based resource repository; create and identify opportunities to partner for policy and service improvements; disseminate project information, best practices, successes and barriers.) METHODOLOGY: Family involvement and support. Advocacy. Community child health team implementation. Local capacity and competency enhancements. Workforce and professional development. Training. Innovative information technology. Communication and resource sharing improvements. Advisory committee guidance. Cultural competence. Quality improvement. COORDINATION: Multiple state organizations and family advocacy groups will participate: IA s Title V program for CSHCN; IA Autism Council; Autism Society of IA; IA -American Academy of Pediatrics; IA Department of Education-Parts B&C; IA Department of Public Health; Leadership Education in Neurodevelopmental and Related Disabilities program; IA Medicaid Enterprises; Private Payers; 1 st Five; Healthcare Education programs; Policy makers; Autism Diagnostic and Treatment Centers; Community providers. All will be involved at different levels with project implementation, evaluation, and problem solving. EVALUATION: Methods will include an evaluation of all 3 system levels using existing index tools (Title V index and Medical Home Index), key informant interviews, family and participant surveys. Project activities will be tracked and assessed for attainment of expectations. ANNOTATION: Proposed goals meet ASD-related systems needs for unity, synergy, and sustainability. Implementation will be guided by strong multi-agency collaboration and effective use of quality improvement methodology and systems-level and program-level evaluation. Dissemination of information will be a cornerstone of the system. Family and community support will be strengthened.