Monday, May 14, :00-3:30pm ET PARTICIPATION GUIDE. Name: Registration:

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1 Improving Family Involvement for Children & Youth with Autism Spectrum Disorder and Other Developmental Disabilities (ASD/DD) through the Combating Autism Act Initiative (CAAI): Training, Research & Systems Development Monday, May 14, :00-3:30pm ET PARTICIPATION GUIDE Name: Registration:

2 Agenda 2:00-2:15 Welcome/Background (Laura Kavanagh, HRSA Maternal and Child Health Bureau) 2:15-2:20 Speaker Introductions (Melody Cherny, AMCHP) 2:20-2:25 What is Family Involvement? (Treeby Brown, AMCHP) 2:25-2:40 Presentation (Tim Markle, Wisconsin Department of Health Services) 2:40-2:45 Discussion 2:45-3:00 Presentation (Fran Goldfarb, University of Southern California, Children s Hospital Los Angeles) 3:00-3:05 Discussion 3:05-3:20 Presentation (Amy Hess, Nationwide Children s Hospital) 3:20-3:30 Discussion

3 5/11/2012 Brief Notes about Technology A ud i o Improving Family Involvement for Children & Youth with Autism Spectrum Disorders through the Combating Autism Act Initiative (CAAI) Audio will transmit through your computer speakers or headphones All participants are on listen-only mode To submit questions, type into the chat box at the lower left-hand side of your screen This webinar will be recorded and archived on the AMCHP website MARCH 13, 2009 LOREM IPSUM DOLOR 2 1

4 Presenters Tim Markle, MA Tim Markle is an Outreach Specialist at the UW-Madison Waisman Center supporting the Children and Youth with Special Health Care Needs (CYSHCN) Program in Wisconsin s Department of Health Services. The Waisman Center is a University Center of Excellence in Developmental Disabilities, a research center, a medical clinic and home to the MCH LEND program. Tim worked on the CAAI State Implementation Grant from April of 2009 through the end of the grant in the areas of Community of Practice on Autism Spectrum Disorder and other Developmental Disabilities (CoP ASD/DD), Regional Core Teams, Community Conversations, Resource Mapping, Database Development, Listserv, and more. In his current role he supports the on-going work of the CoP ASD/DD, the statewide CYSCHN Collaborators Network and serves as Intake Coordinator for Waisman Center s Developmental Disabilities Clinic. Fran Goldfarb, MA, MCHES Fran Goldfarb is the Director of Family Support at the USC UCEDD at Children s Hospital Los Angeles and has served as their LEND Family Support Discipline Director since Ms. Goldfarb also serves as the chair of the AUCD LEND Family Discipline Workgroup, a collaborative of LEND family faculty and other interested parties that has worked on many projects since Together with her husband, she has facilitated the Los Angeles Asperger Syndrome Parent Support Group for the last 16 years. Ms. Goldfarb has a Bachelor s degree in Human Development, a Master s degree in Social Science with an emphasis on Family Life Education and is credentialed as a Master Certified Health Education Specialist. Most importantly, she is the parent of a young adult on the autism spectrum.

5 Amy Hess, BA, MA Certificate Amy Hess has an extensive background in working with people with disabilities. Amy joined The Ohio State University LEND program in May As a LEND Family Faculty at Nisonger Center Amy was active in teaching seminar, clinical activities, grant writing, instructing via the Nisonger Online Orientation to IDD and project management. Currently the Site Coordinator for the Autism Speaks Autism Treatment Network (ATN), Amy is actively engaged in community outreach, clinical quality improvement initiatives, research coordination and family centered care development. Amy holds a B.S. in Communications from the Ohio State University and completed a Masters Certificate program in Rehabilitation Administration at DePaul University in Chicago. Amy is also the parent of a really cute, funny, free-spirited child with Autism and his witty and charming older sister. She and her husband are very active in autism projects in the central Ohio area.

6 5/14/2012 Improving Family Involvement for Children & Youth with Autism Spectrum Disorders through the Combating Autism Act Initiative An Introduction to the CAAI Programs Laura Kavanagh, MPP Director, Division of MCH Workforce Development May 14, 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, Autism Intervention Research Three Program Areas Training DBP LEND State Implementation Providing evidence-based, early interventions when a diagnosis is confirmed. Funding, FY Autism Intervention Research, $9.7 m Interdisciplinary Training, $30.8 m State Demonstration, $3.3 m 1

7 5/14/2012 CAAI Research Efforts Research Networks $44M awarded in research grants for CAAI ( ) : 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) State Autism Implementation Programs An Introduction to the Combating Autism Act Initiative (CAAI): Training Programs Two training programs fall under CAAI Leadership Education in Developmental Behavioral Pediatrics (DBP) Leadership Education in Neurodevelopmental and Related Disabilities (LEND) State Autism Planning Grants State Autism Program State Autism Implementation Grants State Autism Public Health Center Both are long-term training programs (>300 hours) in large part, though they include training medium and short term trainees as well 2

8 5/11/2012 What is Family Involvement? What is Family Involvement? Practice: Family-centered care is an approach to the planning, delivery of health care that recognizes the vital roles of families. Program: A range of activities that involve families in the planning, development, implementation and evaluation of programs and policies. It also includes families as participants in the activities. Performance Measure: Families of children and youth with special health care needs partner in decision-making at all levels and are satisfied with the services they receive. Research : Engaging collaboratively with families in high quality, cutting-edge research according to the highest scientific and ethical standards to enhance the health of children with autism spectrum disorder Training : Pursuing and providing educational opportunities for families and professionals to engage in ongoing learning regarding the health, educational and behavioral wellbeing of children with autism spectrum disorder. NETWORK OF STATE AND LOCAL PROGRAMS THAT CHILDREN AND YOUTH WITH ASD/DD AND THEIR FAMILIES MAY NEED TO ACCESS Community Hospitals Medicaid / Public Assistance Childcare Leadership Education in Neurodevelopmental Disabilities (LEND)/ University Centers for Excellence in Developmental Disabilities (UCEDD) State/Governor s Autism Council State Department of Health/Title V MCH and/or CYSHCN program Head Start Local Health Departments Local School Districts Families, Parents & Children Legal/Justice System Behavioral Health Mental Health Senior & Disability Services Children s Hospital Military Family Organizations, including Family to Family Health Information Centers Part C Private Agencies/ Providers Department of Education Special Education Service Agency Vocational Rehabilitation Former State Autism Implementation Grantees Alaska Alaska Department of Health and Social Services, Division of Public Health Illinois The Autism Program of Illinois (TAP), Hope Institute for Children and Families Missouri University of Missouri Thompson Center for Autism and Neurodevelopmental Disorders New Mexico University of New Mexico s Center for Development & Disability New York New York State Department of Health, Bureau of Early Intervention Rhode Island Rhode Island Department of Health and the Autism Project of Rhode Island Utah Utah Department of Health, Title V Children with Special Health Care Needs Program Washington Washington State Department of Health, Title V Children with Special Health Care Needs Program Wisconsin Wisconsin Department of Health Services, Division of Public Health, Title V Children and Youth with Special Health Care Needs Program Continuing State Autism Implementation Grantees Hawaii Hawaii Pediatric Association Research and Education Foundation Maine Maine Department of Health and Human Services, Maine Center for Disease Control, Division of Family Health, Children with Special Health Needs New Jersey Statewide Parent Advocacy Network (SPAN) of New Jersey Vermont Vermont Department of Health HRSA State Autism Planning & Implementation Grantees Current State Autism Planning Grantees Delaware University of Delaware Georgia Georgia State University Research Foundation Maryland The Parents Place of Maryland Tennessee Tennessee Disability Coalition Current State Autism Implementation Grantees Colorado Autism Society of Colorado Connecticut Connecticut Department of Public Health Mississippi University of Southern Mississippi North Dakota Minot State University Ohio Ohio Department of Developmental Disabilities 1

9 5/11/2012 Family Participation* Illinois (The Autism Project) Families Engaging Providers New Jersey (SPAN) Developing Leadership in Collaboration with Title V Programs Rhode Island (Title V CYSHCN Program) A System of Family Participation *Roles for State Title V Programs in Building Systems of Care for Children and Youth with Autism Spectrum Disorder and Other Developmental Disabilities 2

10 5/10/2012 Wisconsin Objectives Family Involvement and the Connections Initiative Association of Maternal & Child Health Programs Combating Autism Act Initiative Webinar May 14, 2012 Provide examples of parent and self-advocate leadership during the Connections Initiative Provide examples of how parent and self-advocate leadership has continued post-grant Highlight collaboration with other programs Highlight the Finding Your Way Navigation Guide 1 2 Key Staff Parent Leaders Amy Whitehead Connections Program Coordinator/Children and Youth with Special Health Care Needs Statewide Coordinator Gail Chodron Outreach Specialist Training and Outreach Coordinator during the grant Statewide Center for Disease Control and Prevention Learn the Signs Act Early Ambassador Training Coordinator for the Leadership Education in Neurodevelopmental Disabilities Program post-grant Community of Practice Community of Practice on Autism Spectrum Disorder and other Developmental Disabilities Leadership by the co-chairs of the Steering Team Steve Cash Emily Levine Amy Cutter Leadership on the Large Group Planning Teams Parents and Self-Advocates Leadership Education in Neurodevelopmental Disabilities Program Leadership on Practice Groups 3 4 Community of Practice Presentations by Parents/Self-Advocates (during the grant) What s Happening in Wisconsin Supporting Parents on the Local Level Coming of Age with Aspergers Urban Issues Panel Engaging Families as Partners Panel of Youth In Our Owns Words (all presenters) Parents Perspective on the Initiative 5 Community of Practice Presentations by Parents/Self-Advocates (post-grant) Parent s Perspective on Mental Health and Autism Spectrum Disorder and other Developmental Disabilities How Schools Can Support Families of Children with Autism Spectrum Disorder and other Developmental Disabilities 6 1

11 5/10/2012 Regional Core Teams Leadership during the grant and post-grant Meg Steimle Southeast Jackie Baldwin Northern Community Conversations 7 Navigation Guide Finding Your Way: A Navigation Guide for Wisconsin Families Who Have Children and Youth with Special Health Care Needs and Disabilities Writers and Compilers Joanne Juhnke parent Lynn Renner Family Voices of Wisconsin Editors Amy Whitehead Tim Markle Sharon Fleischfresser 8 Navigation Guide Finding Your Way: A Navigation Guide for Wisconsin Families Who Have Children and Youth with Special Health Care Needs and Disabilities Advisory Team Community Systems Practice Group, Family Voices of Wisconsin, Parent to Parent of Wisconsin, other parents and professionals Questions? Tim Markle Timothy.markle@dhs.wisconsin.gov (608) Available for download at:

12 5/10/2012 The LEAP Program at CA-LEND Fran Goldfarb, MA, MCHES CA-LEND Director of Family Support USC UCEDD at CHLA Improving Family Involvement for Children & Youth with Autism Spectrum Disorders through the Combating Autism Act Initiative May 14, 2012 LENDs Leadership Education in Neurodevelopmental and Related Disabilities Advanced level inter-disciplinary training program 43 LENDs in 37 states Unique but with common objectives advancing the knowledge and skills of all child health professionals to improve health care delivery systems for children with developmental disabilities; providing high-quality interdisciplinary education that emphasizes the integration of services from state and local agencies and organizations, private providers, and communities; providing health professionals with skills that foster community-based partnerships; and promoting innovative practices to enhance cultural competency, family-centered care, and interdisciplinary partnerships AUCD 300+ hours over 8 months 16 Disciplines Develop competencies in Ethical and Professional Conduct Neurodevelopmental and Related Disabilities Interdisciplinary Team Building Public Policy Healthcare Systems and Community Care Critical Thinking Leadership Family-Centered and Culturally Competent Care Community Education, Teaching, and Mentoring Discipline Specific Skills CA-LEND 2 Family Support Trainees Strands Diagnostic Overview Systems of Care Interdisciplinary Skills Scenario Based Learning Clinical LEAP (Autism Enhancement Program) Leadership Seminar Leadership Project Day in the Life (Family Mentorship) Community Education/TA Advocacy & Policy Best Practices/Research Project Development Family Involvement in CA-LEND LEND Fellows Recruited as a discipline since fellows per year Participation based on lived experience rather than solely academic degrees Parent Portfolio Formal training and experience Family Support Leadership Advocacy FS fellow participates in all aspects of the LEND fellowship Other Activities Participation in LEND recruitment and trainee selection Day in the Life Experience Presenters at LEND training activities LEND Medium Term trainees CA-LEND LEAP LEND Expanded Autism Program 1 fellow per discipline Including family support Specialized didactic and practicum training in ASD Autism fellows team Individualized Learning Plan Autism focus in all LEND Activities Parent IEP Coaching Service Exposure to several interdisciplinary clinic teams focused on ASD Pediatric residents trained in ASD screening Family Involvement In LEAP Family support fellow participates in all activities in exactly the same way as other trainees Family member panel in System of Care presentation to illustrate challenges in navigating the service system; LEND Family Support grads as presenters Trainees consult with family support faculty and trainees to help with specific client needs such as service navigation; Family support faculty provides guest talk about family-centered care to interdisciplinary clinics 1

13 5/10/2012 Lessons Learned About Involving Families Steeper learning curve FS fellows don t always feel that they are professionals Participating in a clinic experience may be intimidating, but they have particularly strong skills in Parent IEP Coaching FS fellows start with LEND with a full plate FS fellows have more unplanned family events Other disciplines benefit enormously from FS Fellows perspectives and identify it as one of the more valuable experiences of LEND Collaboration With Other Programs Autism in Urban Context Ethnographic study of African-American families who have a child with ASD Tummy Troubles Genetic study of ASD and GI problems Novel Technologies and ASD; Grant application submitted with UCLA, Boston Children's and Cincinnati Children s, to be an Autism Center of Excellence for infants with Tuberous Sclerosis. Project ABC SAMHSA Early Childhood Mental Health Integrated System of Care Grant Can you say something re Project ABC? 2

14 5/10/2012 Family Involvement CAAI Making a Difference Research, Training, Outreach May 14, 2012 The Autism Intervention Research Network on Physical Health (AIR-P) Collaborative agreement with the Health Resources and Services Administration (HRSA) from the U.S. Dept. of Health and Human Services. Funding for the grant is through a federal act: Combating Autism Act Works within Autism Treatment Networks (ATN) across the US and Canada Renewal of AIR-P to extend funding through 2014 providing an additional $12M Autism Speaks Autism Treatment Network What is the Autism Treatment Network? The Autism Speaks Autism Treatment Network (ATN) is a ground-breaking network of hospitals, physicians, researchers, and families at 17 locations (our sites ) across the United States and Canada. We are working together to develop the most effective approach to medical care for children and adolescents affected by autism. The ATN s aim is to provide comprehensive, high-quality care by teams of healthcare professionals who understand autism spectrum disorders and excel at treating associated medical conditions including the sleep disturbances and gastrointestinal problems that can vex children with ASD and their families. Funding is used to support: The ATN is the AIR-P Clinical research projects Guideline development for recommendations on providing care and treatment around ASD Quality improvement around clinical care Training and dissemination activities to healthcare professionals and families. Expectations from local ATN/AIR-P site Provide feedback and perspective on the state of care and provide input on new clinical initiatives, planning and goals. Participate in site Quality Improvement activities Play an active role in encouraging and facilitating the involvement and engagement of other parents in their local site s roles, activities, and initiatives. Promote a family-centered perspective. Disseminate knowledge about the ATN/AIR-P site in various communities. 1

15 5/10/2012 ATN/Nationwide Children s Hospital State Grants and Initiatives Learn the Signs Early/Act Early Initiative (CDC) Partners include: Akron, Cleveland, Nationwide and Cincinnati Children's Hospitals; Easter Seals; OCALI, Title V agency ODH; Autism Society Ohio Department of Jobs and Family Services; AUCD - UCEDD/LEND State Implementation Grant for Improving Services for Children and Youth with ASD and other Developmental Disabilities (HRSA) Partners include: Ohio Center for Autism and Low Incidence (OCALI); Ohio Department of Health (Ohio s Title V Program); Ohio Chapter of the American Academy of Pediatrics; University Centers of Excellence in Developmental Disabilities/LEND Programs (OSU & UC) Ohio Statewide Medical Home Project for CYSHCN Nationwide Children s Hospital/ATN Collaborations Family Involvement University: UCEDD/LEND Programs OSU and University of Cincinnati Associations of University Centers on Disability (AUCD) State: Interagency Work Group Ohio Department of Developmental Disabilities Ohio Coalition for Autism and Low Incidence (OCALI) State Initiatives: Title V CYSHCN at Ohio Department of Health Medical Home initiative Research: AIR-P and Research Unit on Pediatric Psychopharmacology (RUPP) at OSU Nationally (network-wide) Locally (Nationwide Children s Hospital) Family Advisory Council Functions and Activities Advise ATN/AIR-P in developing and implementing network procedures, policies, and activities. Advise ATN/AIR-P on developing clinical and research priorities. Provide family perspective on subspecialty committees. Engage in quality improvement efforts (Autism Collaborative supported by NICHQ) Engage in quality improvement efforts (Autism Collaborative supported by NICHQ). Provide feedback and perspective to their site on the state of care and provide input on new clinical initiatives. Encourage and facilitate the involvement and engagement of other parents in their local site s roles, activities, and initiatives. Family Involvement and Engagement Barriers and Success Turn territorial issues into Collaborative partnerships Build learning collaboratives for educational outreach Listen to families actively engaged in systems Initiated an annual ASD professionals meeting Lessons Learned Aspire to a diverse perspective Place families in areas of interest Recruit everywhere Stay Focused on Family Centered Care! Make Family involvement a priority Family Involvement Perspective As a Developmental and Behavioral Pediatrician, I care about more than just medication doses or sleep patterns. Family involvement, through Family Centered Care or through partnerships designed to evolve systems of care, create the best outcomes for all children. Family involvement at any level helps drive the clinical and quality improvement process from which we all benefit. Question How can you initiate/improve family involvement within your agency? Dr. Karen Ratliff-Schaub Developmental and Behavioral Pediatrician, Nationwide Children s Hospital LEND Director, The Ohio State University 2

16 5/10/2012 Thank You Amy Hess Autism Treatment Network Site Coordinator Nationwide Children s Hospital Amy.hess@nationwidechildrens.org 3

17 3 Key Takeaways from Today s Webinar on Family Involvement Challenges in Involving Families Who Have Children and Youth with ASD/DD

18 Key Challenges Key Solutions Consider efforts in your state related to family involvement (parentprofessional partnerships, cultural competency, etc.) how can your efforts better support children and youth with ASD/DD and their families?

19 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

20 Discussion Questions 1. How can we strengthen our approaches to family involvement in developing research projects, training programs, and systems of care for children and youth with ASD/DD? 2. Are there special considerations that are unique to children and youth with ASD/DD as compared to all CYSHCN? 3. How can we better evaluate the impact of involving families on the success of these programs? 4. What is the role of families in sustaining these programs? 5. How do other LENDS select their FS fellows (criteria)? 6. How do other LENDs utilize FS participation in their programs? 7. How can you initiate/improve family involvement within your agency?

21 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 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 to learn more. For an archive of past CAAI webinars, visit

22 5/11/2012 Family Involvement at AMCHP R o l e s Family Delegate Family Scholar Family Mentor Family Representative on an AMCHP Committee Family Representative to the AMCHP Board R e s o ur c e s AMCHP Family Delegate Fundamentals, fact sheet State Profiles in Comprehensive Family Participation, issue brief State Public Health Autism Resource Center (SPHARC) P r i m a r y P u r p o s e Increase the capacity of states, particularly Title V programs, in developing and implementing systems of care for children and youth with ASD/DD through resource development, technical assistance and peer learning. MARCH 13, 2009 LOREM IPSUM DOLOR 2 Final Notes U p c o m i n g Webinars i n the CAAI S er i es June 13: Identification, Diagnosis and Referral of Children with Autism Spectrum Disorders July 17: Innovative Interventions for Children on the Autism Spectrum August: Service Delivery for Children with Autism Spectrum Disorders Eval u at i o n S u r vey A brief survey will appear on your screen at the end of the webinar Healthy Children. Healthy Families. Healthy Communities. T h a n k Yo u! Treeby Brown Senior Program Manager, CYSHCN tbrown@amchp.org (202) Melody Cherny Program Associate, CYSHCN mcherny@amchp.org (202) MARCH 13, 2009 LOREM IPSUM DOLOR 3 1