1. SMOOTH WAY HOME Supporting a successful transition for fragile babies and their families from the Newborn Intensive Care Unit back to their community Chris Linn, Executive Director, Feeding Matters Trudi Murch, Director of Services for Children with Disabilities, Southwest Human Development This work was made possible by generous support from Dignity Health

2. A Consortium of Community Stakeholders  State agencies and programs: DHS, DDD, AzEIP, OCSHCN, FTF  Community Hospital NICUs: St. Joseph’s Hospital and Medical Center, Maricopa Medical Center, Cardon Children’s Hospital, Tucson Medical Center, University Medical Center, Gateway, Scottsdale Healthcare Shea, Phoenix Children’s Hospital  Providers: Mealtime Connections, SWHD, UCP, RISE, CFR, Easter Seals Blake Foundation, Sunrise  Parent Advocacy Groups: Raising Special Kids and Feeding Matters.  Community physicians  Health insurance plans

3. OVERALL PURPOSE  To improve the social, developmental, and medical outcomes of very fragile infants by enhancing the coordination of care and the quality of services provided to them as they transition from the NICU back to their home & community.

4. Identified Needs/Issues  Trauma and stress for families  Costly re-admissions for NICU graduates  Missed opportunities to support babies’ optimal growth and development  Lack of coordination, communication, & understanding between NICU and community providers.  Lack of training for community providers in care of fragile infants  Missed opportunity for families to understand and be connected with community services while in the protected environment of the NICU.

5. Specific Smooth Way Home goals  Increase the number of Level 2 and Level 3 NICU babies who are connected with AzEIP/DDD (made eligible and have an IFSP in place) prior to discharge or very shortly after discharge.  Provide training and technical assistance to the community of early intervention providers related to specialized developmental assessment tools and intervention approaches appropriate for very fragile newborns and infants.

6. Goals (continued)  Provide mentoring and resource support for families whose babies are transitioning home from the NICU.  Special emphasis on support for families whose babies have eating/feeding disorders (very prevalent in this population, and often under- identified and under-supported).

7. Activities and Achievements  Working towards establishment of Smooth Way Home teams at 8 hospitals. These are at varying stages of development.  Regular meetings of NICU staff, DDD/AzEIP representative, NICP Community Nursing staff (typically during discharge planning).  Established relationships helps promote coordination of services.  NICP and DDD/AzEIP staff have opportunity to connect with families prior to discharge.  Processes for information sharing have been developed and are being implemented on a limited basis. We hope for more widespread implementation soon.

8. Hospital participation  Welcome/include AzEIP, DDD, and NICP at discharge planning.  Work with team to find ways of assuring timely referral to AzEIP (prior to discharge).  Facilitate family signing ROI for AzEIP and NICP.  Encourage families to contact Raising Special Kids (RSK).  Distribute and support families in using NICU Parent Resource Manuals.  Implement Early Intervention Clinical Pathway – once it is developed.

9. Framework for hospitals  Development of an Early Intervention Clinical Pathway.  Drafted by SWH Steering Committee.  Template to be used and adapted by individual hospital teams.  Includes regular Early Intervention Clinical Rounds, and identified timeline/benchmarks for referral and coordination activities.

10. Activities and achievements cont.  Capacity building in the professional community: o Foundation Level Training: 160 professionals (OTs, SLPs, nurses, service coordinators, early interventionists, dietitians) o Intermediate Level two day workshop: 80 professionals o Intensive Learning Collaborative: 16 professionals

11. Joy Browne Ph.D., CNS-BC, IMH-E  Clinical Professor of Pediatrics and Psychiatry at the University of Colorado Denver School of Medicine, Department of Pediatrics  Duel licensure as a Pediatric Psychologist and a Clinical Nurse Specialist  Director of the Center for Family and Infant Interaction including the Colorado NIDCAP® Center, FIRST Program, Fragile Infant Feeding Institute, and BABIES program  Developed BEGINNINGS, an interim Individualized Family Service Plan for newborns with special needs  Area of expertise is in neurobehavioral assessment and intervention with high-risk infants and their families as well as systems change toward developmentally supportive and family centered care

12. Training Content – Foundation Level  One day training  Understanding unique needs of fragile infants and their families  Developing IFSPs for these infants  Partnering to provide early intervention services in the community  Participants included: Community Health Nurses, NICU nurses, AzEIP and DDD therapy providers and service coordinators, infant mental health providers, child development professionals

13. BABIES AZ Two-day Intensive training  BABIES Model  B ody function  A rousal and sleep  B ody movement  I nteraction with others  E ating  S elf-soothing

14. Two-day Training Continued  PreSTEPS Model  Predictability and continuity  Support of self-soothing  Timing and pacing  Environmental modifications  Positioning and handling  Sleeping, awake time and social relationships 

15. BABIES AZ Learning Collaborative  On-going  In-depth application of BABIES and PreSTEPS  Case Studies  Tool usage  Skill check  Future Trainer of Trainers

16. Activities and achievements cont.  NICU Parent Resource Binder has been developed, piloted, printed, and disseminated. Is now available on-line.  Parent mentors with specialized expertise in working with fragile infants and infants with eating/feeding problems have been trained and are available to families in Maricopa and Pima Counties.

17. Resources for Families  NICU Parent Resource Binder in English and Spanish  Celebrate successes honoring individualized milestones  Tool to organize critical information  Provides information related to community resources  Paired with parent mentor from Raising Special Kids  www.raisingspecialkids.org www.raisingspecialkids.org  Feeding Matters  www.feedingmatters.org

18. Continuity of Care: Linking NICU and community providers  Strong support from DHS/Perinatal Trust  Shared experience as participants in BABIES AZ training and Learning Collaborative  Builds relationships, establishes a “common language,” creates understanding across systems.  Shared theoretical foundation (BABIES Model and NIDCAP*)  Relationship-based care  Synactive model of developmental care  ( *NIDCAP – Newborn Individualized Developmental Care and Assessment Program)

19. Role of the Smooth Way Home Program Coordinator  Recent addition – thanks to funding from Dignity Health  Works with individual hospital-community teams to facilitate coordination. Also to help NICU staff become aware of community systems and resources (for example: AzEIP and DDD eligibility criteria).  Organizes and coordinates training and Learning Collaborative activities

20. Funding and sustainability  High level of commitment from SWH community taskforce. Regular meetings for past 2 years. Great source of on-going support for the project.  Funding from Dignity Health (St. Joseph’s Hospital and Medical Center) for the SWH Community of Care. Funding just renewed for a second year.  Includes funding for much needed project management and administrative support.  Additional funds from SWHD Walk With Me fundraising events.

21. Next Steps  Continue and build on current initiatives  Participating hospitals adopt and implement Early Intervention Clinical Pathway.  AzEIP representative is regular part of SWH team.  Offer a second round of BABIES AZ trainings and create a second Learning Collaborative.  Increase numbers of participating hospital NICUs.  Develop data base to track numbers of babies who transition home with an IFSP in place.

22. Dreams for the Future!  Develop cadre of trainers who can build capacity in our professional community to meet the needs of fragile infants and their families.  Implement the Smooth Way Home model at the national level: under consideration for the national Dignity Health system.  Address other issues related to creating a Smooth Way Home for fragile infants and their families.