Safety for Special Kids Project: Injury Prevention for Children with Special Health Care Needs

1. Safety for Special Kids Project: Injury Prevention for Children with Special Health Care Needs Nasuh Malas MD/MPH Candidate 2009 University of Wisconsin-Madison School of Medicine and Public Health Jim Savage Director of the Kohl’s Safety Center American Family Children’s Hospital University of wisconsin-Madison

2. Acknowledgements Thanks to: American Family Children’s Hospital Kohl’s Safety Center Waisman Center The MCH-LEND Program SAFE Kids Coalition of Dane County The Special Needs Advisory Council The Kohl’s Safety Center Partners

3. Outline • Introduction • Goals and Objectives • Partnerships • Resources and Outreach • Sustainability • Expected Results • Discussion • Conclusion • References

4. Injury Prevention and Advocacy “Life affords no greater responsibility, no greater privilege, than the raising of the next generation.” - C. Everett Koop

5. Introduction Unintentional Injury • Leading cause of mortality for children ≤15 years of age1 • 35 child deaths each day2 • 30 million emergency room visits each year1 • 400 billion dollars yearly in expense and lost productivity1 Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Injury Control and Prevention. “State Injury Indicators Report: 3rd Edition”. July 2004 Brixey, S. et al. “Injuries can be prevented.” WMJ. Feb 2005. Vol 104. Issue 2. 19-20

6. Introduction • Wisconsin • 70% of all injuries in Wisconsin are due to unintentional injuries1,2 • 31,623 hospitalizations, of which 2,288 were for children1 • Over 3,000 injury-related deaths and approximately 1 of every 6 deaths occurs in children2, 3 • Costs 619 million dollars yearly2 • Motor vehicle injuries account for the majority of Wisconsin injuries, at 40%, followed by falls and poisonings4 Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Injury Control and Prevention. “State Injury Indicators Report: 3rd Edition”. July 2004 Wisconsin Department of Health and Family Services. “Wisconsin Injury Prevention Program”. http://www.dhfs.state.wi.us/Health/InjuryPrevention/ Accessed: June 3, 2008 Peterson, N. “Community-Based Injury Prevention Programs: Toward a Safer Wisconsin”. WMJ. Dec 2000. Vol 99. No 9. 22-26 Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Injury Control and Prevention. “State Injury Profile for Wisconsin”. 1989-1998.

7. Introduction Unintentional Injury and Children with Special Needs • Definition: • “…children who have or are at increased risk for a chronicphysical, developmental, behavioral, or emotional conditionand who also require health and related services of a type oramount beyond that required for children generally.”1 • 13-18% of the general child population • Higher risk for injuries 2,3,4 • Lack of preventative service and programming Perrin, J. et al. “A family-centered, community-based system of services for child and youth with special health care needs”. Arch of Pediatric Adolescent Med. Oct 2007. Vol 161. No 10. 933-936 Spira-Gaebler, D. et al. “Injury Prevention for children with disabilities”. Physical Medicine and Rehabilitation Clinics of North America. 2002. Vol 13. 891-906 Maternal and Child Health Bureau of Health Resources and Services Administration.Injury Prevention Information for Children with Special Health Care Needs”. http://mchb.hrsa.gov/child/specialcareneeds.htm Accessed: June 12, 2008 Sherrard, J. et al. “Injury risk in young people with intellectual disability”. Jan 2002. Vol 46. No 1. 6-16

8. Introduction Kohl’s Safety Center • Opened October 2007 • 14’x 14’ facility providing childhood injury prevention resources • Serves Wisconsin, northern Illinois and northeastern Iowa • Supported by Kohl’s Department Stores’ “Kohl’s Cares for Kids Program”

9. Introduction Safety for Special Kids Project • Comprehensive initiative to incorporate safety resources for children with special needs and their families • Multidisciplinary Council guides project: • Selection of Safety Products • Preliminary stock of special needs friendly products • Pursuit of Funding Resources • Submission of CVS/Caremark Foundation Grant • Development of Educational Materials • Child Injury Prevention Parent Handbook

10. Goals Goals: • Enhance caregiver's understanding of the value of injury prevention • Increase awareness among families of special needs resources • Improve comfort in use of special needs injury prevention products • Reduce burden of cost incurred when ensuring injury prevention • Improve referral rates by providers to the Safety Center for special needs products • Increase physician education in counseling families about the importance of injury prevention in the special needs population

11. Objectives Objectives (By Jan 1, 2010): • Serve the safety needs of 4,000 families served by the Waisman Center and American Family Children's Hospital. • Offer on-site safe home evacuation assessments and general home safety assessments at least twice a month. • Provide education to families during visits to the Safety Center Store and the Waisman Center • Distribute all 1,060 of the special needs safety products to families • Phone consultation to families seeking information on special needs

12. Partnerships • Broad pool of partners • Waisman Center • American Family Children’s Hospital • Special Needs Advisory Council • Key stakeholders • Guide selection of resources • Promotion through community and health-based networks • Suggest innovative funding channels • Evaluation tools

13. Resources and Outreach • Safety resource recommendations: • Product Inventory • Broad, community-based promotional campaign • Waisman Center Collaboration • Improved website capabilities • “Childhood Injury Prevention Handbook for Parents”

14. Sustainability • Continuing financial commitment from hospital administration • CVS/Caremark Charitable Trust Grant • Other funding sources: Children’s Hospital, Safe Kids, Kohl’s • Challenge: maintain pool of funds to purchase special needs products and provide them to families at little to no cost

15. Expected Results Proposed Partnerships • Start locally, then move throughout the county and state • Strongest partnership forged with the Waisman Center • Additional partners: • Madison Fire Department • American Family Children’s Hospital • Madison Area Down Syndrome Society • University of Wisconsin School of Medicine and Public Health

16. Expected Results Future support: • Local law enforcement • Birth to 3 programs • Local public health offices • UW Poison Prevention and Education center • Wisconsin Department of Transportation • Wisconsin Department of Agriculture • Trade and Consumer Protection • AAA Wisconsin • Safe Community Coalition of Madison and Dane County

17. Expected Results Evaluation Tools • Simple needs assessment • Convenience sample of families of children with special needs • Offered at clinical visits or other visits to Waisman Center • Address epidemiology, safety concerns, and barriers to care • Evaluation will be both qualitative and quantitative • Qualitative Data • Survey at least 1% of our target population, or 40 families • Survey providers at Waisman Center and Children’s Hospital • Quantitative Data • Tally visits or calls requesting special needs safety resources • Tabulate number of families that obtain safety products

18. Discussion • Basic foundation to ensure long term success • Driving force: large need, dedicated faculty, staff and family advocates • Cornerstone of project: Special Needs Advisory Council • Unique products and services provide a niche market for the Safety Center • Should lead to further financial support and community advocacy for the project

19. Discussion • Limitations: • Financial sustainability • Staff and Space • Addressing the issue of self injurious behavior and child abuse • Realize burden of unintentional injury in special needs population • Need further study • Kohl’s Safety Center: Safety for Special Kids • Concise goals and objectives, with quantitative and qualitative evaluative tools, provide requisite measures to gauge progress • After one year, able to determine if efforts will bear fruit

20. Conclusion • Novel Approach to Injury Prevention • Address concerns of families with children with special health needs • Currently: Initiation and Preparation • Created Special Needs Advisory Council • Final phases of creating the Injury Prevention Handbook for Parents • Pursuing funding opportunities • Future directions

21. Questions?