Building Systems of Care that Meet the Needs of Children & Youth with ASD/DD & their Families: Lessons Learned from Combating Autism Act Grantees

Building Systems of Care that Meet the Needs of Children & Youth with ASD/DD & their Families: Lessons Learned from Combating Autism Act Grantees Wednesday, August 22, 2012 2:00-3:30pm ET PARTICIPATION GUIDE Name: Registration: https://cc.callinfo.com/r/1xi4cgo4vwnak

Agenda 2:00-2:10 Welcome to call and webinar instructions (Treeby Brown) 2:10-2:20 Welcome and Introduction from Dr. Michael Lu 2:20-2:35 Nancy Cronin; Making Change in Shifting Sand: Implementing Universal Autism Screening in Maine) 2:40-2:55 Donna Murray; Improving Access to Autism Specific Services Using Quality Improvement Science 3:00-3:15 Patricia Osbourn; Supporting Families and Communities: Systems Change Through the Development of an Autism Oversight Team 3:15-3:30 Questions

Recording Today s webinar will be recorded. Building Systems of Care that Meet the Needs of Children & Youth with ASD/DD & their Families: Lessons Learned from Combating Autism Act Grantees The recording will be available on the AMCHP website: www.amchp.org Broadcast audio will begin when presentation starts 2 Brief Notes about Technology Questions To submit questions throughout the call, type your question in the chat box at the lower left hand side of your screen. Send questions to the Chairperson (AMCHP) Be sure to include to which presenter/s you are addressing your question. Featuring: Dr. Michael Lu Associate Administrator of Maternal and Child Health at the Health Resources and Services Administration Nancy Cronin ASD Systems Change Coordinator at the Maine Developmental Disabilities Council Dr. Donna Murray Director of Clinical Services for the Division of Developmental and Behavioral Pediatrics at Cincinnati Children's Hospital Medical Center Pat Osbourn Deputy Director of the Center for Development and Disability at the University of New Mexico 3 4 Questions? To submit a question: Type your question in the chat box at the lower left hand side of your screen. Send questions to the Chairperson (AMCHP) Be sure to include to which presenter/s you are addressing your question. 5 1

Improving Identification and Diagnosis of Children & Youth with Autism Spectrum Disorders through the Combating Autism Act Initiative An Introduction to the CAAI Programs Michael C. Lu, MD, MS, MPH Associate Administrator, Maternal and Child Health Bureau August 22, 2012 Goal of the Combating Autism Act Initiative (CAAI) Enable all infants, children and adolescents who have, or are at risk for developing, Autism Spectrum Disorders (ASD) and other developmental disabilities to reach their full potential by: Developing a system of services that includes screening children early for possible ASD and other developmental disorders; Conducting early, interdisciplinary, evaluations to confirm or rule out ASD and other developmental disorders; and, Three Program Areas Autism Training State Intervention DBP Implementation Research LEND Providing evidence based, early interventions when a diagnosis is confirmed. Funding, FY 2012 Autism Intervention Research, $9.7 m Training: More Professionals in the Pipeline 2500 Change in number of LEND trainees between 2009 and 2010 Interdisciplinary Training, $30.8 m State Demonstration, $3.3 m Number of Trainees 2000 1500 1000 500 2009 (n=22 grantees) 2010 (n=39 grantees) 0 Medium Term Long Term 1

Evidence of Progress: Increased Number of Diagnostic Evaluations Training LEND www.mchb.hrsa.gov/autism Data source: NIRS CAAI module 12 CAAI Research Efforts Research Networks $44M awarded in research grants for CAAI (2008 2012) : 3 Research Networks 25 R40 Investigator-initiated Grants Autism Intervention Research Network on Behavioral Health (AIR-B) Autism Intervention Research Network on Physical Health (AIR-P) Developmental and Behavioral Pediatrics (DBPnet) An Introduction to the Combating Autism Act Initiative (CAAI): Training Programs Two training programs fall under CAAI Leadership Education in Developmental e e Behavioral a Pediatrics (DBP) Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Both are long-term training programs (>300 hours) in large part, though they include training medium and short term trainees as well Leadership Education in Developmental Behavioral Pediatrics (DBP) 10 MCHB-funded DBP programs around the country that focus on autism and related disabilities Also other DBP programs throughout the country that are not funded by the bureau Nation-wide shortage of DBP-trained physicians to treat those with ASD and other developmental disabilities (DD) 2

State Autism Implementation Programs Leadership Education in Neurodevelopmental and Related Disabilities (LEND) State Autism Program 43 LEND programs around the country in urban and rural areas 6 new LEND programs as a result of recent grant competition All LENDs must have a focus on developmental disabilities, and more recently with the passing of CAAI, a focus on ASD State Autism Planning Grants State Autism Implementation Grants State Autism Public Health Center State Autism Implementation Programs Number of new Grantees (22) Years Funded States Healthy People (HP) 2020 Objectives will reflect advances by CAAI Investments 6 2008-2011 AK, WA, IL,MO, UT, WI 3 2009-2011 NM, NY, RI 4 2010-2013 VT, ME, HI, NJ 5 2011-2014 CO, OH, ND, MS, CT 4 2011-2013 MD, TN, DE, GA (State Planning Grants) Multiple HP 2020 objectives relate to the health of children and adults with disabilities. The Health and Disabilities section includes objectives which highlight areas for improvement and opportunities for people with disabilities to: Be included in public health activities. Receive well-timed interventions and services. Interact with their environment without barriers. Participate in everyday life activities. Healthy People 2020 MICH 29: Increase the proportion of young children with an Autism Spectrum Disorder (ASD) and other developmental delays who are screened, evaluated, and enrolled in early intervention services in a timely manner. Healthy People 2020 MICH 29.1 Increase the proportion of young children who are screened for an Autism Spectrum Disorder (ASD) and other developmental delays by 24 months of age. MICH 29.2 Increase theproportion ofchildrenwith an ASD with a first evaluation by 36 months of age. MICH 29.3 Increase the proportion of children with an ASD enrolled in special services by 48 months of age. MICH 29.4 (Developmental) Increase the proportion of children with a developmental delay with a first evaluation by 36 months of age. 3

Healthy People (HP) 2020 Objectives will reflect advances by CAAI Investments For the Autism specific HP 2020 Objective see: http://www.healthypeople.gov/2020/topicsobj h l /2020/t ectives2020/objectiveslist.aspx?topicid=26 For those related to autism in the Health and Disability section see: http://www.healthypeople.gov/2020/topicsobjectiv es2020/overview.aspx?topicid=9 4

Making Change in Shifting Sand: Implementing Universal Autism Screening in Maine Nancy Cronin, MA Maine Developmental Disabilities Council Getting Right to the Good Stuff Accomplishments Towards Universal Screening for ASD Develop and Implement Standardized Screening and Referral Process Medical Professionals discussed and agreed upon Screening Tools and a Potential Referral Process State Commissioners approved pilot project Field Test of the Screening Tools (in 7 medical practices over 3,500 children screened) Took the Show on the Road (first tour) Educate on Screening, First Signs, Next Steps, & Supporting Families Creation, by Developmental Pediatricians, Parents and Advocates, of a DVD and supporting train thetrainer curriculum Over 300 DVDs and train the trainer curriculum have been distributed Over 170 Early Childhood Professionals attended train the trainer presentations Over 150 Medical Practitioners received training on the Autism Screening Tool Who Will Pay??? MaineCare created Medicaid Codes to pay for screenings Type of Code Code Screening Tool Amount CPT 96110 ASQ/PEDS $8.99 CPT 96110 HI M CHAT $8.99 CPT 96111 HK M CHAT 2 $86.59 Insurance Mandate Chapter 635: An Act To Reform Insurance Coverage to Include Diagnosis and Treatment for Autism Spectrum Disorders How do We Know We Are Making A Difference? (Because We Are Not Done Yet) 98% Increase Between 2010 and 2011 in provision of screening for ASD Chart A: Children in Study Diagnosed with ASD By Age (n=61)(half of the study complete) 21% 2% 20% 5% 52% 2 Years and Under 3 Years 4 Years 5 Years 6 years and over Chart B: National % Parent Learned Diagnosis* national averages released May 2012 through the CDC (http://www.cdc.gov/nchs/data/databriefs/db97.pdf) 40% 11% 19% 13% 17% 2 years and under 3 years 4 years 5 years 6 years and over 1

So, What Did We Do? Used Data 1800 MaineCare Members diagnosed with a PDD for whom claims were paid 1659 1600 1400 1200 1304 1245 1000 800 1013 MC 2007 MC 2009 600 400 200 0 579 470 299 239 190 202 91 102 55 67 5 3 0 2 3 5 6 12 13 20 21 29 30 49 50 69 70 97 Involved All Stakeholders (Public and Private, Individual and Professional) DHHS Division of Early Childhood Child Developmental Services Psychologists Developmental Evaluation Clinics Medical Professionals Early Childhood Educators Child Care Providers Office of MaineCare Services Children with Special Health Needs Autism Society of Maine DHHS Children s Behavioral Health Services Disability Rights Center Parents Department of Education Speech and Occupational Therapists Center for Community Inclusion and Disabilities Studies Developmental Disabilities Council State Office of Information Technology Over 200 individuals with PDD, family members, and professionals as commenter's Maine Developmental Disabilities Council Customer Focused! Stakeholder Driven! Nobody likes being told how to do their job better Family Group Current System Map Value Stream Mapping 4 Full Days Stakeholder Group (includes a smaller group of families) Current System Map, Future System Map, Implementation Plan Report drafted, vetted and finally approved by stakeholder group and all families DRILL DOWN Early Identification Value Stream Mapping Maine Developmental Disabilities Council Maine Developmental Disabilities Council 2

Workgroup Future Map Role of Change Agent Believe in What You Are Doing Be Mindful of: Culture Group Dynamics History Remember There Are No Villains Acknowledge Any Progress and Give Credit Maine Developmental Disabilities Council Lessons Learned Understand individual points of view Align agendas Change does not always equal improvement Unintended consequence Accept that the Change Agent does not determine the pace at which change occurs A Change Agent may be the catalyst for change, but cannot be the owner of the change The change agent cannot make the fire, but he or she can strike the match and keep the fire fueled. Thank You! Contact me anytime at: NancyCronin MA Nancy Cronin, MA 207 287 4214 nancy.e.cronin@maine.gov 3

The Kelly O Leary Center (TKOC) Improving Access to Autism Specific Services Using Quality Improvement Science Donna S. Murray, PhD, CCC-SLP Director of Clinical Services Division of Developmental & Behavioral Pediatrics Co-Director The Kelly O Leary Center for Autism Spectrum Disorders Cincinnati Children s Hospital A multidisciplinary program within the Division of Developmental & Behavioral Pediatrics at Cincinnati Children s Hospital Founded in 1999 at the request of families in the greater Cincinnati area Diagnostic, treatment, training & research program TKOC serves approximately 3,800 children with ASD in the medical clinic Does approximately 600 ASD diagnostic evaluations annually Member of the Autism Treatment Network (ATN) Quality Improvement at TKOC Our work in QI started in 2004 Recruited by CCHMC to join Robert Wood Johnson funded Pursuing Perfection: Raising the Bar for Improving Health Care Performance Initiative Provided us with access to Quality Improvement Consultant & periodic consultation with leading QI experts Tom Nolan & Lloyd Provost Autism Quality Improvement Initiative Early work was to address the limited access to autism specific treatment services AIM: Increase by 25%, the number of children diagnosed with Autism Spectrum Disorders that access and participate in the Kelly O Leary Center for Autism treatment services by December 2008 through: Developing new service delivery models Increasing system efficiency Maximizing staff productivity Interventions to Meet Goals Change the way we deliver treatment Increase system efficiency Tap underutilized resources 1

Scaleable Models Change The Way We Deliver Service Individualized programming model - Adopting 12 week therapeutic session - Begins with a therapeutic programming session (TPS) - Entry point into TKOC treatment Recommendations made for intervention Individual follow-up Group intervention Periodic consultative treatment Referral to another therapist (may or may not include consultation follow-up) - Moves children through a system which typically has no graduation h ildren # of Ch 700 600 500 400 300 200 100 0 #of Children Diagnosed with Autism Spectrum Disorder who Access TKOC Treatment Services (Cumulative) Jan-0 6 M a r-06 M a y-06 Jul-0 6 S e p-06 N o v-06 Last update: 07/08/08 by C.P.Luzader Data Source: Manual J an-0 7 M a r-07 M a y-07 Jul-0 7 S e p-07 Month-Year N o v-07 Jan-0 8 M a r-08 M a y-08 J ul-0 8 S e p-08 Revised Goal = 500 Access-Cumulative Median 160 140 120 100 80 60 40 20 0 hildren # of C # of Children Diagnosed with Autism Spectrum Disorder who Access TKOC Treatment Services (Monthly) J an-0 6 M ar-0 6 M ay-0 6 J ul-0 6 S ep-0 6 N o v -0 6 J an-0 7 Last update: 07/08/08 by C.P.Luzader Data Source: Manual M ar-0 7 M ay-0 7 J ul-0 7 S ep-0 7 N o v -0 7 Month-Year J an-0 8 M ar-0 8 M ay-0 8 J ul-0 8 S e p -0 8 Access-M onthly Revised Goal = 150 Median Phase 2 Continuing work from Phase 1 Maintain efforts from phase one New Focus in Phase 2 Improving access to Diagnostic Services Reducing time from referral to first visit (210 days) Looking at ttimeline between first t&l last appointment Time from day first appointment scheduled to last appointment - 278 days Identifying outcome measures Autism Impact Scale Build Capacity outside TKOC Improve Access to Diagnostic Visits Improve time to First Visit Identify Target or priority groups Under 3 years 3-5 years Shift professional that has to see the patient on the first visit Move from Physician visit to: PNP Psychologist Improve Time Through the Process From Children under 36 months with question of r/o ASD Testing completed prior to visit with physician, this reduced visit to physician 2

Results Time from referral to first 2009 2011 Current Visit R/O ASD 19-36 months 203 days 150 days No wait R/O ASD 3-5 years 210 days 120 days Approx. 90 days Time Through the diagnostic Process 2009 Current R/O ASD 19-36 months 278 days Approx. 90-120 days R/O ASD 3-5 years 278 days Approx. 120-150 days Building Capacity Demonstration Classroom Collaborative project with Cincinnati Public Schools, Hamilton County Developmental Disabilities Services and University of Cincinnati Extension Teams Partner with building capacity in Speech and OT departments in CCHMC Community partners Partner with HCDDS in providing training workshops with professionals and cargivers Challenges Finding time in busy clinical setting to concentrate on Quality Improvement work Managing a portfolio of work Gaining buy-in from faculty and staff Educating faculty and staff in QI methodology Maintaining gains! Particularly in areas of access! 3

Supporting Families and Communities: Systems Change Through the Development of an Autism Oversight Team Pat Osbourn, MA, CCC/SLP Deputy Director, Center for Development and Disability, UNM Context for Project In Fall, 2010, NM s single behavioral health entity, Optum Health, began a push to return children to home and communities given high costs of RTCs Advocates, including CDD/Autism Programs, expressed concerns that communities were not equipped to successfully support these individuals A University Center For Excellence in Developmental Disabilities Education, Purpose Of AOT Pilot project for discharging children/youth with challenging behaviors + ASD from Residential Treatment Facilities. Autism Oversight Team was charged with: Provision of intensive discharge planning for five individuals with ASD Collection and reporting about barriers to home/community supports Make recommendations for policy change. Team Membership: Medical Assistance Division Optum Health Developmental Disabilities Services Division Department of Health Office of Behavioral Support Office of Eligibility Public Education Department Children, Youth and Families Department CDD/Autism Programs Individual cases included parents, guardians, case workers, staff from RTCs, local school district personnel and others Mediator/facilitator AOT Meetings Group met at least twice per month (6-10 hours/month). Participation of state agency representatives was supported by use of phone conferencing when necessary. Facilitator sent minutes with assignments after each meeting. Group developed & used Transition Planning Process Map, which outlines timelines and role responsibilities Strengths of New Mexico to support the pilot Key decision makers of each agency are well known to stakeholders. Each state agency has a financial stake in good outcomes. Through NM s State Implementation Grant, CDD/Autism Programs supported a mediator/facilitator. 1

Challenges Large rural state with majority of resources in Albuquerque Few providers with expertise in supporting individuals with challenging behaviors/asd throughout New Mexico Community preparation prior to an individual s return not common practice Lessons Learned Successful transitions of these individuals are complex and require cooperation of several entities Admission and discharge criteria not consistent, quality assurance issues need to be constantly addressed Wraparound services currently offered through NM s behavioral health system were NOT found to be sufficient for most individuals Public schools typically begin process of preparation for return to school Lessons Learned These complex cases are time consuming, however, expertise of the collective group led to solutions in a much shorter time than a family/case worker working in isolation The use of a mediator/facilitator crucial for tracking issues and in supporting the momentum of group Major Obstacles Lack of ownership of the process Integration of health, behavioral health and school services Quality of treatment plans/discharge criteria Lack of expertise in providers across all systems No one agency has final word Greatest Impact on System from Process State agency representatives critically reviewed their policies and approaches to support individual children/youth and their families. State agency representatives were placed in a role of creative problem solvers Sustainability of systems change Recommendations from AOT have been outlined in response to NM SM20/HM 44. Some include: Increased training for education/behavioral health providers around issues of challenging behavior/asd Quality assurance issues, including the use of restraints, adequacy of treatment program, criteria for admission/discharge Based on feedback from legislative representatives, it is anticipated that recommendations will be carried forth in the 2013 NM legislative session 2

Sustainability of systems change The Deputy Secretary of the NM PED, issued a guidance to all special education directors in NM (7/12) on Best Practices: Transition Planning for Students Enrolled in RTCs in or out of State specifically citing the Transition Planning Process Map. Training on this transition process will be implemented state wide in Fall, 2012 for educators Unique aspects of approach: Use of a highly skilled mediator/facilitator crucial to keep group on task. Working through challenges of individual cases as an inter-agency team increased team s understanding of the issues at a personal level. Use of Transition Planning Process Map developed by AOT. Healthy Children. Healthy Families. Healthy Communities. Other Members from CDD/Autism Programs: Gay Finlayson Michael Harle Amber Hayes Thank you for participating! A brief evaluation survey will appear after you exit the webinar. Your feedback is much appreciated! WWW.AMCHP.ORG 3

Presenters Dr. Michael Lu, Associate Administrator of Maternal and Child Health at the Health Resources and Services Administration Dr. Lu joined HRSA from the University of California, Los Angeles Schools of Medicine and Public Health, where he was associate professor of obstetrics, gynecology and public health. Dr. Lu brings years of experience in MCH research, practice, and policy to his post at HRSA. Prior to his appointment, Dr. Lu chaired the Secretary s Advisory Committee on Infant Mortality. He has served on two Institute of Medicine (IOM) committees (Committee on Understanding Premature Birth and Assuring Healthy Outcomes, and Committee to Reexamine IOM Pregnancy Weight Guidelines), and the Centers for Disease Control and Prevention Select Panel on Preconception Care. Dr. Lu received his bachelor s degrees in political science and human biology from Stanford University, master s degrees in health and medical sciences and public health from UC Berkeley, medical degree from UC San Francisco, and residency training in obstetrics and gynecology from UC Irvine. Nancy Cronin, ASD Systems Change Coordinator at the Maine Developmental Disabilities Council Nancy Cronin, MA is the Coordinator for the Autism Spectrum Disorders (ASD) Systems Change Initiative and the State Autism Implementation Grant Manager in Maine, and in that role is facilitating this interagency effort to achieve a cost-effective and efficient comprehensive system of care for persons with ASD. Nancy joined the staff of the Maine Developmental Disabilities Council in this role in January, 2008, having previously served for over four years as the Executive Director of the Autism Society of Maine. While at the Autism Society, Nancy s work at the local, state and national level focused on the development of effective services and supports for persons with ASD of all ages and their families

Dr. Donna Murray, Director of Clinical Services for the Division of Developmental and Behavioral Pediatrics at Cincinnati Children's Hospital Medical Center Dr. Donna Murray, Associate Professor of Clinical Pediatrics at Cincinnati Children s Hospital, is the Director of Clinical Services for the Division of Developmental & Behavioral Pediatrics and Co-Director of the Kelly O Leary Center of Autism Spectrum Disorders. She holds a secondary faculty appointment at the University of Cincinnati, Department of Communication Sciences & Disorders. Her research interests are in the area of diagnosis and social skills/language development and intervention in children with ASD and the use quality improvement science in health care delivery systems. Dr. Murray is a frequent presenter at the regional and national level on topics related to Autism Spectrum Disorders. Pat Osbourn, Deputy Director of the Center for Development and Disability at the University of New Mexico Patricia Osbourn, MA, SLP, CCC, CEC is the Deputy Director of the Center for Development and Disability (CDD) at the University of New Mexico. She also is core faculty for the NM LEND Program and Director of Autism and Other DD Programs at the CDD.

3 Key Takeaways from Today s Webinar on Building Systems of Care that Meet the Needs of Children & Youth with ASD/DD & their Families 1. 2. 3. Challenges in Building Systems of Care that Meet the Needs of Children & Youth with ASD/DD & their Families

Key Challenges Key Solutions Consider efforts in your state related to Building Systems of Care that Meet the Needs of Children & Youth with ASD/DD & their Families how can your efforts better support children and youth with ASD/DD and their families?

What I Will Do Differently From This Moment On In the Next Six Months In the Next Year or Beyond My Key Learning Themes/Ideas How I ll Apply Them to My Work Challenges I Might Need to Address/Overcome People I Want to Follow Up With

Discussion Questions 1) Description of unique elements of the system in which they work (state, local, clinical characteristics)-strengths and challenges 2) Lessons learns on working with and/or integrating systems (including surprises and/or unanticipated consequences positive or negative) 3) Biggest impact on the system from the process used 4) Sustainability of systems change, including current/future leveraging of resources to sustain the change

Resources AMCHP s State Public Health Autism Resource Center (SPHARC) is a comprehensive resource center for state Title V programs and others interested in improving systems for children and youth with autism spectrum disorders and their families. For more information, please visit www.amchp.org.spharc. The purpose of the Interdisciplinary Technical Assistance Center (ITAC) on Autism and Developmental Disabilities is to improve the health of infants, children, and adolescents who have, or are at risk for developing, ASDs and other developmental disabilities. Please visit www.aucd.org/itac/template/index.cfm to learn more. For an archive of past CAAI webinars, visit www.aucd.org/template/event.cfm?event_id=2847&id=0.