The DNEA & Autism Services PRESENTERS: ANNALISA EKBLADH, KATHLEEN DENIGHT, BRIAN FREEDMAN, TERESA AVERY, LAURA DEWEY
Today s Session 1. Review of The Blueprint for Collective Action Annalisa Ekbladh 2. Advocacy and the Autism Services Advancement Package (ASAP) Kathleen DeNight 3. Delaware Network for Excellence in Autism: Current Status and Related Initiatives Brian Freedman 4. Q&A
The Blueprint for Collective Action Delaware s Strategic Plan and the Last Five Years
Number of Students Why Autism? 1800 1600 1400 1200 1000 800 600 400 200 0 475 530 Students with an Educational Classification of Autism Source: Delaware Department of Education 599 714 779 868 951 982 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 School Year 1139 1208 1512 1682 One in 68 people are identified with ASD New research shows prevalence as high as 1:50 From 1991-2016 the number of public school children with an educational classification of autism increased 695%
Characteristics of Autism Spectrum Disorder (ASD) Main Affected Areas Communication Social Interaction Behavior & Attention Associated Medical & Mental Health Conditions Seizure Disorders Sleep Dysfunction Anxiety Disorders ADHD
2011-2012 2012 2013 Statewide Needs Assessment Collaboration between CDS, DOE & Autism Delaware Survey Focus Groups Workgroup Recommendations Education Health & Mental Health Adult Services Formation of the Interagency Committee on Autism (ICA) Key Agencies & Healthcare organizations Families Advocacy Organizations Blueprint for Collective Action Strategic Plan for Autism Collaboration Coordination 2015 2015 2014 Senate Bill 93 Passes Formally codifies the ICA as advisory council for the DNEA Establishes and funds DNEA Training for Professionals Family Navigation & Training LEND & HRSA grant applications approved Collaboations between CDS, Nemours, State Agencies & Autism Delaware Legislative Action Senate Bill 93 - Establish the Delaware Network For Excellence in Autism (DNEA) Senate Bill 92 - Change Title 14 code to include training professionals to work in all schools Legislative Taskforce Two Recommendations Statewide Training and Technical Assistance Center Educational Training & TA Team 2016 2016 2016-2017 Nemours begins plan for Autism Center Community input and space planning
2-year Statewide Planning Initiative Stakeholder Input Focus Groups Statewide Needs Assessment Survey Autism Summit Strategic Plan Workgroups Combined Workgroup Interagency Committee for Autism Outcomes/Impacts Activities Resources Timeline Common Vision: To assure that all Delaware citizens with autism have the opportunity to develop the skills and knowledge necessary to live independent / interdependent lives within the community.
How many voices were heard? Over 500 families of children and adults with ASD Dozens of self-advocates Over 120 providers and educators
Results of Stakeholder Input Major Themes Diagnosis was difficult, lengthy and delayed services Lack of physician/pediatric understanding of Autism Spectrum Disorder Some parents reported very positive experiences in education while many other families expressed concerns with level of training and high turnover Serious anxiety about the future (post-secondary opportunities, employment, long-term care) Stress and frustration over fragmented systems
Strategic Plan Improvement Areas Identification, Diagnosis and Classification Training & Technical Assistance Pre-Professional Training Self-Determination, Self-Advocacy and Social Network Development Transition to Adult Life Family Support & Stakeholder Engagement Systems Coordination
Systems Coordination There will be increased coordination between health, mental health and education services for all individuals with ASD Develop and implement a Statewide Resource Center as a comprehensive resource, training and technical assistance center for families and professionals Availability of mental health services and crisis support services Ensure adequate medical insurance to cover all needed services
Taking Action If Delaware is to address the critical needs outlined in the strategic plan: Some initiatives will require action from the General Assembly For example: Establishing a Statewide Resource Center Implementing a statewide care coordination system responsive to ASD Establishing a statewide model of training and technical assistance for organizations/agencies who work with people with ASD and their families across the lifespan Establishing supports for people with ASD to attend and succeed in employment and college
Summary The dramatic increase in the number of individuals with ASD has created significant difficulties for schools, social agencies, hospitals, clinics and families across Delaware This climate of crisis motivated a statewide strategic planning process (Blueprint). Delaware now has a unified community of agencies, organizations and families who have a shared vision Blueprint establishes strategies to avoid crisis and plan for the future
Advocacy and ASAP Kathleen DeNight Mom Advocate Nurse
Autism Education Task Force It started (well, this part anyway) with the task force In 2014 Senator Margaret Rose Henry and Representative Earl Jaques sponsored a bill to create the autism education task force a first step towards realizing the vision of The Blueprint Task force goals: How do we get more resources into training and technical assistance to help teachers in all schools? How do we create the resource center outlined in the Blueprint in order to support that training?
Advocacy and ASAP Task force members: State agencies, legislators, advocates, non-profits, parents Met many times over late 2014 and early 2015 to create and submit the task force report Out of that report was born the Autism Services Advancement Package: ASAP SB92 increased resources available to support all teachers of students with autism in all schools SB93 created the legal framework and funding for the Delaware Network for Excellence in Autism (DNEA) and the Interagency Committee on Autism (ICA)
Passing the DNEA Advocacy efforts on ASAP continued well past the end of session Governor Jack Markell inserted funding for the DNEA into his FY2017 Governor s Recommended Budget SB93 (creation of the DNEA) passed on the last day of session 2016 with $500,000 of start-up funding One of only two new pieces of approved funding in the state budget for that year The DNEA will be led and housed at UD s Center for Disabilities Studies
Advocacy Continues The fate of SB92? Working with other stakeholder communities, Special Ed Directors and DOE to consider needed changes in special education across the board The voices of families make a critical difference in the outcomes
Delaware Network for Excellence in Autism (DNEA)
Delaware Network for Excellence in Autism (DNEA) Provide Training and Technical Assistance Delaware state agencies, organizations and private entities serving individuals with ASD Led by UD Center for Disabilities Studies Provide Family Training and Family Support Led by Autism Delaware Web presence Info on ASD services and evidence-based practice Track progress of Blueprint
Delaware Network for Excellence in Autism (DNEA) All activities informed by and incorporate evidence based-practice Training could include (examples): Large-scale trainings On-site coaching Webinar development Train-the-trainer Goals identified by the Interagency Committee on Autism
ICA Members Statewide Director of the Delaware Autism Program Department of Education Division of Developmental Disabilities Services Division of Vocational Rehabilitation UD Center for Disabilities Studies Autism Delaware Nemours network Division of Public Health Delaware Association of Rehabilitation Facilities Division of Substance Abuse and Mental Health Family Voices Parent Information Center of Delaware Part C/Birth to Three System Division of Prevention and Behavioral Health Services A parent or caregiver of a child or adult with ASD from each county in Delaware An individual with ASD
ICA & DNEA Next Steps Funding began on November 17 th Hiring DNEA Director and staff Confirm ICA members ICA identifying goals for Training/TA for Year 1 Developing processes for the ICA/DNEA
DNEA Activities to Date Trainings : Adolescence and ASD; Social skills treatment Audience: Mental Health Professionals multi-site Anxiety in Adults with ASD Audience: Mental Health Professionals and Adult Service Providers Introductory video and blog post through CDS Info presentations at state committee meetings and local conferences Contact: Brian Freedman: brianf@udel.edu or 302-831-4688
Building Bridges: Improving Access to Timely and Appropriate Services for Children with ASD/DD and their families
Building Bridges 3-year grant from the federal Health Resource and Service Administration, Maternal and Child Health Bureau (HRSA MCHB) Project Aims and Partners with CDS: Improve care coordination (Autism Delaware) Increase screening for ASD (DPH) More timely evaluations and diagnosis of ASD (Nemours, DOE, CDW) Improve access to Early Intervention services (DOE, CDW) Increase utilization of telemedicine and telehealth (Nemours) Improve family skill, knowledge and self-efficacy (Family Voices, Autism Delaware)
Leadership Education in Neurodevelopmental Disabilities (LEND) Federally-funded for 5 years Continued funding is likely available Interdisciplinary pre-professional leadership training Community-based training for professionals, family members and people with disabilities Amazing line-up of core faculty and affiliated faculty UD, Nemours, Christiana Care, Dept of Ed, DPH Part of a national network of similar LEND programs
LEND Interdisciplinary training with emphasis on high-quality, culturally competent, personand family-centered care This year s trainees: Family members Physical Therapy Special education Speech-language Pathology Nutrition Clinical psychology