1. PARTNERSHIPS WITH HEALTHCARE PROVIDERS AND SCHOOLS Ann T. Behrmann MD Group Health Cooperative Janice Cooney, PA-CUW Family Practice Liz Hecht Waisman Center

2. 2 What is a Medical Home  What is a Medical Home? A medical home addresses how a primary health care professional works in partnership with the family/patient to assure that all of the medical and non-medical needs of the patient are met. A medical home is defined as primary care that is accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective. 11  A medical home includes:  A partnership between the family and the child's/youth's primary health care professional  Relationships based on mutual trust and respect  Connections to supports and services to meet the non-medical and medical needs of the child/youth and their family  Respect for a family's cultural and religious beliefs  After hours and weekend access to medical consultation  Families who feel supported in caring for their child  Primary health care professionals coordinating care with a team of other care providers

3. 3 Family’s Role  Notify school of child’s needs  Provide information as appropriate  Participate in plan development with school and medical team  Provide medication and supplies  Share contact information  Support child/youth to acquire needed skills

4. 4 Your School’s Role  The Individuals with Disabilities Education Act (IDEA) grants to eligible children with disabilities the legal right to receive a free appropriate public education in the least restrictive setting. For an increasing number of children with disabilities, access to education is only achieved through the provision of necessary health services (e.g., administration of intravenous medications, catheterization, tracheostomy care, gastrostomy tube feedings).

5. 5 Your School’s Role  The 1999 United States Supreme Court ruling in Cedar Rapids Community School District v. Garret F. (hereinafter known as "Garret F.") held that the Individuals with Disabilities Education Act (IDEA) requires school districts to provide nursing services when such supportive services are necessary in order for students to access and benefit from their educational program.

6. 6 Your School’s Role  "School nurse services" is a new related service and has replaced "school health services".  (26) Related Services. The term 'related services' means transportation, and such developmental, corrective, and other supportive services …school nurse services designed to enable a child with a disability to receive a free appropriate public education as described in the individual education program of the child,...as may be required to assist a child with a disability to benefit from special education, … Reference from IDEA 2004 - 20 U.S.C. Section 1401 (26) (A)

7. 7 Your School Nurse’s Role  Identify students  Arrange meetings to discuss accommodations  Develop health care plan and emergency care plan  Delegate responsibility  Provide training  Provide supervision  Provide health education  Case management

8. 8 Your Pediatrician’s Role  IEP planning and input on Behavior Intervention Plan (BIP)  Medication administration information/forms  Advocacy with family for services  Communication re medication and its effect on academic progress or behavior with school nurse/teachers/psychologist – phone and email  Development of an Emergency Care Plan  Creation of a Signs and Symptoms Checklist  In service for specific cares—may be done jointly with family’s help and input

9. 9 Your Pediatrician’s Role  MAKING IT WORK  Expanded appointment times  Time commitment  After hours communication  Reimbursement for care coordination

10. 10 AAP Resources  Helpful guidelines from the American Academy of Pediatrics, Committee on Children With Disabilities, including: The Pediatrician's Role in the Development and Implementation of an Individual Education Plan (IEP) and/or an Individual Family Service Plan (IFSP) (RE9823) Pediatrics. 1999;104(1):124-127The Pediatrician's Role in the Development and Implementation of an Individual Education Plan (IEP) and/or an Individual Family Service Plan (IFSP) (RE9823)  http://www.medicalhomeinfo.org/ publications/education.html http://www.medicalhomeinfo.org/ publications/education.html

11. 11 Child/Youth and Pediatrician Partnership  Peds doc/family sharing information with kid— facts about illness/disabilities and medication and allowing child to be the expert on herself and her medications  Responsibility to always take meds when driving, working, swimming or participating in dangerous recreation or sports  Never taking scheduled medications (prescription pain meds or stimulants for ADD/ADHD) to school or giving or selling them to friends

12. 12 Child/Youth and Pediatrician Partnership  With the individual –it takes time –it takes practice –it involves a little risk on your part –model your speech and behavior from parents or others who do it well –it takes extra time –get to know the child at their typical setting

13. 13 Child/Youth and Pediatrician Partnership  EMPOWER AND TEACH EACH INDIVIDUAL  Involve the individual in discussions regarding their health care  Age appropriate level  Engage them in decision making when possible

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16. 16 “While a disability may create challenges, the need for information or assistance, it does not define a person’s entire existence.” Hanft, 1989.

17. 17 Language  Language is an extremely powerful tool.  Language reflects concepts. –Language reflects our ideas and judgements of others.  Model appropriate language for others.

18. 18 Language  People first language refers to individuals first, and their disease or disability when necessary.  Demonstrates respect for the person and recognizes their abilities.

19. 19 Choose your words carefully  Medical records and care plans are shared across environments. Remember that numerous people may see your written documentation.Your language reflects your views and helps paint a picture for the reader.  People may be offended at language you use in your medical writing.

20. 20 Tools for Communication  1) Develop partnerships to possibly include these participants: –child, family, school nurse, teachers, school administration (principal, special ed coordinator), school psychologist or social worker, special education assistants, fellow students 2) Schedule a summer or spring pre-school year planning meeting

21. 21 Communication Aides  Forms— school medication, allergies  Daily care plans  Behavioral Intervention Plan (BIP) from formal Functional Behavioral Assessments  Strategies for ongoing communication— daily shared notebook, emails, phone  Consider having your pediatrician/FP complete “signs and symptoms checklist”

22. Care Plans for Children With Special Health Needs

23. 23 Care Across Various Settings  Home  School  Day Care settings  Community  Work  There may be multiple people of various disciplines/skill level involved. Develop communication strategies across all settings.

24. 24 Identify Health Issues Identify/educate those on the team –SE teacher, SE aide, school nurse, teacher, others –Day care providers, support /aides at day care –Home - parents, personal care workers  Provide information. Information builds confidence! –articles regarding condition –handouts regarding tubes, lines, etc.  Develop a plan  Identify those that are medical providers and their availability Emergency training such as CPR, airway management. Medications Seizure management

25. 25 Developing A Plan - School  Identify individuals to help –Nurse –Teacher –SE assistant  Write a plan of care - consider potential problems and outline solutions  Provide information –get articles describing typical health problems and characteristics of the child’s problems –medication lists –emergency contacts –allergies - include food / meds/ environmental/ latex  Train necessary individuals at various settings

26. 26 School - Identify Need  Justify need via IEP –documents need for nursing care –builds nurse into the team

27. 27 School - Identify Need  Identify training needs for school personnel. Train support staff and teachers prior to, and during the school year.Utilize the IEP. Use tools such as training videos.  Examples: Safe handling and transfers Feeding Gastrostomy tube use Personal cares, toileting Seizure management Airway management

28. 28 Communication  With parents/caregivers –cell phones –pagers –contact numbers where available –make a form with contact numbers clearly outlined

29. 29 Communication  May be multiple people involved over various settings.  Central, organized format is helpful.

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31. 31 Health Information  Keep information in an organized 3-ring file.  Include the following: –Medical diagnosis –Names and phone numbers of medical providers –Medication lists –Allergies

32. 32 Medication List  Carry a list of medications and allergies  Example: –R.C. DOB: 5/16/93 –Medical Diagnosis: Cerebral Palsy, Asthma, Low Vision, Reflux –Allergies: Amoxicillin and Clindamycin –Baclofen 20 mg TID for spacticity –Valium 2 mg AM and 4 mg PM for spacticity –Dantrolene 25 mg AM and 75 mg PM for spacticity –Prilosec 20 mg BID for reflux –Metoclopramide 5 mg QID for reflux –Flovent MDI 2 puffs BID for asthma –Albuterol MDI 2 puffs TID-QID for asthma –Flonase Nasal Spray 2 squirts each nostril QD for allergies –Multivitamin with iron QD

33. 33 Other strategies  Medic Alert Bracelets  Child Alert Program –register child through Child Alert Program- educates and alerts EMS to potential problems of individuals so EMS can react proactively in an emergency situations

34. 34 Signs and Symptoms of Problems  Listen to the parents or primary providers of care  School personnel may detect changes as well  “They’re just different”  “Something is wrong”

35. 35 Signs and Symptoms of Problems  Remember kids with special health care needs also develop typical childhood illnesses. Look for those. Consider where they spend time - home, day care, school.

36. 36 Signs and Symptoms  Do a good once over, including vital signs.  Assess level of response, is it typical?  Include skin and remember that some people have decreased sensation.  Sleep –poor sleep or increased sleep  Muscle tone –Increased / decreased muscle tone  Head banging

37. 37 Signs and Symptoms  Aggressive behavior – towards self or others  Change in bowel or bladder habits  Emotional changes –anger/withdrawal –crying  Whining, crying, vocalizations  changes over time which may cause subtle changes  Seizure patterns - –increase in seizures or change in pattern may reflect infection  Look for signs of abuse  Medication changes  Think about poisoning – can make adverse reactions and behavior

38. 38 Signs and Symptoms some examples Hypoglycemia (low blood sugar or Insulin) reaction in diabetic student —confusion and irritability, uncooperative diabetic may signal low blood glucose, so better to give sugar (OJ, concentrated glucose) than time out! Pain manifestations in nonverbal child— increased agitation, elevated heart rate, sweating Response to a seizure in child with epilepsy— when to call 911/use of Diastat rectally

39. 39 Emergency Care  Develop emergency and medical plans pro- actively.  Develop relationships with parents and individuals.  Involve parents and primary care providers.  Look for subtle changes.  Develop teaching tools and training sessions.  Compile information in central format.

40. 40 Emergency Care Plan  Know your emergency plan.  Review plans periodically.  Know who can help you in an emergency. –School nurse –911  Identify individuals trained in schools, may include students.

41. 41 Emergency Contacts  Parents/caregivers  Pediatrician –plan for after-hours care  Hospital used in emergency –Services provided via local ambulance transportation only advanced training ability to handle child’s special issues

42. 42  Remember the individual involved.