ORIENTATION

1. ORIENTATION Project TEAM Children’s Hospital of Wisconsin Medical College of Wisconsin Special Needs Family Center

2. WELCOME Welcome to Project TEAM Orientation. Project TEAM is a family - healthcare provider partnership program. Project TEAM is part of the Children with Special Health Care Needs Rotation for physicians who are in their 3rd and final year of training to become a pediatrician.

3. Need for Project TEAM • 15-30% of children in the U.S. Have a special health care need. • Special needs impact children, their families and the community. • Caring for these children requires the use of specific principles and practice. • Medical students and residents have traditionally received very little training in the care of children with special needs.

4. Special Health Care Need • Children aged birth to 21 who have a physical, developmental, behavioral or emotional illness/condition that has existed or is expected to exist for more than 12 months. • The illness/condition restricts the child’s growth and development or their ability to participate in usual activities. • The illness/condition requires specialized care, psychological or educational services beyond that required by the typically developing child.

5. Characteristics of Special Health Care Needs • Limited or Persistent • Unique • Multifaceted • Influential • Time consuming • Expensive • Frustrating • Rewarding

6. Cerebral palsy Traumatic brain injury Hemophilia Asthma Neuromuscular disorder HIV infection/AIDS Prematurity Genetic Disorders Cancer Congenital heart disease Bipolar Disorder Autism LD/ADHD Diabetes mellitus Special Health Care Needs

7. History of Project TEAM • First developed in 2000 by: • Anne Juhlmann (parent/nurse) • Dr. David Lewis (pediatric cardiologist) • Dr. Patricia Lye (hospitalist) • Bonnie Anderson (parent/nurse) • Goal: To improve the delivery of care to children with special healthcare needs.

8. Focus of Project TEAM • The focus of Project TEAM is on the universal feelings, issues and emotions that special needs bring to a family and not on specific diseases or disabilities, • The focus of Project TEAM is on how the disease or disability affects the child, family and community and what the physician can do to help.

9. History of Project TEAM • Pilot - Spring 2001: 4 residents and 2 families participated. It was a six hour experience spread over 3 weeks. • The pilot was received with enthusiasm and evaluated positively by both residents and families.

10. History of Project TEAM “I had no idea you did all of this at home! I have a new understanding of how hard it must be to come into the hospital and have people caring for your child that know so much less than you do about the care of your child.” Resident’s comment after participating in the pilot - May 2001

11. History of Project TEAM • On September 12, 2001, Dr. Dave Lewis, passed away while on a medical mission trip. The project was placed on hold for 12 months. • In the Fall of 2002, Dr. Pat Lye resigned. • Program re-developed into approximately 14 experiences.

12. Current StaffChildren with Special health Care Needs Rotation • Bonnie Anderson, RN, MSN, CPNP • Day surgery advanced practice nurse • Parent of child with special healthcare needs • John Gordon, MD • Medical Director Special Needs Program • Anne Juhlmann, RN, BSN • Family Program Coordinator – Special Needs Family Center. • Parent of children w/ special healthcare needs. • Fred Klingbeil, MD • Medical Director of Rehabilitation and Fitness

13. What are the Goals of Project TEAM? First Goal The resident will understand how a special health care need affects a child, a family and a community.

14. What are the Goals of Project TEAM? Second Goal The resident will understand that despite differences special health care needs, there are universal issues, emotions and needs that families who have children with special health care needs deal with.

15. What are the Goals of Project TEAM? Third Goal The resident will be encouraged to work together with families when caring for the child with special health care needs.

16. What are the Goals of Project TEAM? Fourth Goal The resident will understand that there are many public, private and community resources to help children with special health care needs and that it is important that the physician help the family to access these resources.

17. What are the Goals of Project TEAM? Fifth Goal The resident will understand that every child deserves a medical home: coordinated, family-centered, culturally sensitive, primary care that addresses all of the child’s needs, including non-medical needs such as educational or emotional needs.

18. What are the Goals of Project TEAM? Sixth Goal The resident will learn some strategies and be given some tools for providing a “medical home” to the child with special health care needs.

19. What are the Goals of Project TEAM? Seventh Goal The resident will learn that when a child has a “medical home” they are more likely to reach their full potential.

20. How are the Goals Met? • Orientation for Residents • Resource Material • Experiences such as: • Time spent in clinics with families • Visit to Home Care Provider • Exercises to teach coordination of care

21. How are the Goals Met? • Daily journal entries: reflection • Formal Presentation and discussion with staff. • TEAM • Family home visits • Visits to school, therapy or recreational activity.

22. Home Visit • Resident should call you to set up the visit at a time that works for your family. • Typical visit with family is about 90-120 minutes. • The resident has a suggested list of questions. As the teacher you may need to guide the conversation to make sure that the resident gets a complete picture of your family and child.

23. School Visit • Resident should set up a time to visit your child’s school when they make initial phone call to you. • Acceptable substitutes for school visit are therapy visits or observation of recreational activity. • If you need a letter for the school please contact Anne Juhlmann ASAP.

24. Impact of TEAM • “It is unbelievable the extra costs that I would not have thought about. There are so many hidden costs not covered by insurance.” • “It is amazing how much planning goes into traveling – even a trip to the grocery store requires planning!”

25. Impact of TEAM • “I could see the parents’ relief to have a nurse to speak with who understands their lives. And more so someone who knows what they can do – are capable of!” • “Small steps are big challenges and great accomplishments!”

26. Impact of TEAM • “My 2 main take home points are TEAM and communication!” • “Families are a great support for each other. I never really knew that.” • “I am amazed at what these families go through that we never know.” • “The home visit was the most memorable experience of this rotation!”

27. Impact of TEAM “I loved the time spent with families! I will recollect this next time I see a child with special needs and perhaps )I hope!) have a better appreciation for the type of life style they lead.”

28. THANK YOU!!!! Thank you for coming tonight. We hope that you will consider participating in the program this year. It is only because of the willingness of families to invite residents into their homes and teach them about the realities that families live with that the program will succeed in meeting its goals.