ORIENTATION

1
ORIENTATION

• Project TEAM
• Childrens 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 childs
  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
Special Health Care Needs

• 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

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.
• Residents 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 childs 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
  childs 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.