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ORIENTATION Powered By Docstoc

  Project TEAM
Children’s Hospital of Wisconsin
 Medical College of Wisconsin
 Special Needs Family Center
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
    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.
  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
•The illness/condition requires specialized care,
psychological or educational services beyond that
required by the typically developing child.
      Characteristics of Special
        Health Care Needs
•   Limited or Persistent
•   Unique
•   Multifaceted
•   Influential
•   Time consuming
•   Expensive
•   Frustrating
•   Rewarding
     Special Health Care Needs
• Cerebral palsy           • Genetic Disorders
• Traumatic brain injury   • Cancer
• Hemophilia               • Congenital heart
• Asthma                     disease
• Neuromuscular            • Bipolar Disorder
  disorder                 • Autism
• HIV infection/AIDS       • LD/ADHD
• Prematurity              • Diabetes mellitus
   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.
   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.
  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.
  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
  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
• Program re-developed into
  approximately 14 experiences.
             Current Staff
Children 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
      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.
      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.
      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.
      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.
     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.
       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
      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
  How are the Goals Met?
• Orientation for Residents
• Resource Material
• Experiences such as:
  – Time spent in clinics with
  – Visit to Home Care Provider
  – Exercises to teach coordination
    of care
  How are the Goals Met?
• Daily journal entries: reflection
• Formal Presentation and discussion
  with staff.
  –Family home visits
  –Visits to school, therapy or
    recreational activity.
               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
• 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.
            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.
         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!”
         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

• “Small steps are big challenges and
 great accomplishments!”
        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!”
     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.”
         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.