Patti Hackett, MEd Co-Director, HRTW National Resource Center Bangor, ME Future of Pediatrics Orlando, FL June 30, 2007

1. What’sHEALTHGot to Do with Learning? EVERYTHING! Patti Hackett, MEd Co-Director, HRTW National Resource Center Bangor, ME Future of Pediatrics Orlando, FL June 30, 2007

2. Disclosure • Neither I nor any member of my immediate family has a financial relationship or interest with any proprietary entity producing health care goods or services related to the content of this CME activity. • My content will not include discussion/reference of any commercial products or services. • I do not intend to discuss an unapproved/investigative use of commercial products/devices.

3. Review the issues/causes as identified in select research Understand the connection: Impact of health on learning Identify role for Physicians to support student success Objectives

4. www.hrtw.org

5. Living Well with a Disability

6. Transition to Adulthood

7. Roots of Failure • Anxiety / Depression • Problems in the family • Learning disabilities • Social: poverty, frequent moves, truancy • Health: chronic illness, teenage pregnancy • Other causes: inability to speak English, etc

8. Developmental Differentiation of Children's Beliefs across Middle Childhood 420 children, ages 7-12 years, reported the perceived effectiveness of five causes Effort Attributes Powerful others Luck Unknownfactors SOURCE: Ellen A. Skinner and Max Planck Institute for Human Development and Education, Berlin, F.R.G. International Journal of Behavioral Development, Vol. 13, No. 2, 157-176 (1990)DOI:10.1177/016502549001300202 What Causes Success and Failure in School and Friendship?

9. ACADEMIC - Effort was perceived as a more effective FRIENDSHIP - Attributes, powerful others,and luck were viewed as more important NOTE: Effort and powerful others, increased with age. In contrast,the perceived effectiveness of attribute causes became more similar across domains as children became older. SOURCE: Ellen A. Skinner and Max Planck Institute for Human Development and Education, Berlin, F.R.G. International Journal of Behavioral Development, Vol. 13, No. 2, 157-176 (1990)DOI:10.1177/016502549001300202 Developmental Differentiation of Children's Beliefs across Middle Childhood

10. Are We Ignoring Foster Youth With Disabilities? Foster youth • who need special education are less likely to receive services than • not in foster care often face social isolation • disability and/or special education needs are often unknown or overlooked • with disabilities lack educational advocates Professionals receive inadequate information about the unique needs of foster youth with disabilities SOURCE: Dr. Sarah Geenen at the OHSU OIDD Center on Self-Determination: (503) 232-9154 ex. 111; geenens@ohsu.edu / www.selfdeterminationohsu.org

11. Safe and Sound Campaign / Baltimore City Children • live in nurturing families • enter school ready to succeed • ..and young adults are educated • ..and their families are healthy, with youth avoiding high-risk behaviors • live in safe/supportive communities • Their families are self-reliant SOURCE: Suzanne Bronheim, PhD Social Exclusion in the United States: Policy Implications for Community SolutionsGeorgetown University Child Development Center, Center for Child Health and Mental Health Policy, June 1999

12. Maternal Reports of Raising Children With Chronic Illnesses: The Prevalence of Positive Thinking R. Chernoff, MD,D. List, MA, MPH, CHES, K.DeVet, PhD, and H. Ireys, PhD, Ambulatory Pediatrics: Vol. 1, No. 2, pp. 104–107 Results 80% of the mothers felt better about themselves by learning to manage child's chronic condition; 70% felt that their families were stronger because of their child's condition; and 80% felt that their family had benefited in some way from having a child with a chronic illness. 98% of the mothers endorsed at least 1 positive item; 58% endorsed all 3.

13. Maternal Reports of Raising Children With ChronicIllnesses: The Prevalence of Positive Thinking Conclusions Asking mothers about the positive impact on a family of a child's chronic illness captures an important part of the experience of caregiving. Physicians' recognition and encouragement of this positive outlook may help families continue to face the challenges of raising a child with a chronic illness.

14. Review the issues/causes as identified in select research Understand the connection: Impact of health on learning Identify role for Physicians to support student success Objectives

15. Health Impacts All Aspects of Life Success in the classroom, within the community, and on the job requires that young people are healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisions.

16. Health & Learning "You cannot educate a child who is not healthy, and you cannot keep a Child healthy who is not educated.“ Joceyln Elders Former Surgeon General

17. Screen for Life Areas How does health affect: • Employment • Leisure, Recreation • Community: transportation, housing • Higher Education or Training

18. Screen for All Health Needs • Hygiene • Nutrition (Stamina) • Exercise • Sexuality Issues • Mental Health • Routine (Immunizations, Blood-work, Vision, etc.) • Elimination: Bowel/Bladder

19. Review the issues/causes as identified in select research Understand the connection: Impact of health on learning Identify role for Physicians to support student success Objectives

20. Transition &….Medical Home

21. Doctors know, Families Know, students know, but did we tell the teachers? Teachers - fear of having to do health services - failure to consider accommodations based on impact of health, disability or side affects of medications - lack of support from administration The Ultimate Outcome: Transition to Adulthood!Health & Learning – There is a Connection

22. Disabled?? Special Health Care Needs? HEALTH SERVICES CYSHCN - Children & Youth with Special Health Care Needs - Genetic - Chronic Health Issues - Acquired EDUCATION SERVICE - Youth with Disability - Youth with Health Impairment ADA & 504 - Disability and/or Health Impairment

23. We need basic understanding of disability/health impact We need to know danger signs for health decline (what’s development? health? slacking?) We speak different language re services for CY Help us help your patient – We need to share notes, reciprocal support What Teachers Want Medical Providers to Know

24. School Speak Health  IEP/PLOP, 504, Transition Plan School mandates Non-intrusive medical plans for the school setting Privacy - Balancing FERPA & HIPAA What Teachers Want Medical Providers to Know

25. School Speak - Getting Health in the IEP, 504, Transition Plan -  Non-intrusive medical plans for the school setting -  Privacy: Balancing FERPA & HIPAA What Teachers Want Medical Providers to Know

26. THE LAW:Any health issue or limitation can be incorporated into the PLOP/PEP if it describes how the child’s disability affects the child’s participation in school and recreational activities. (20 U.S.C. Section 1414 (d)(1) (A) of IDEA) Health supports documented in …….. The Present Level of Performance The IEP Goals The Supports and Services The list of accommodations and modifications Mandates: IDEA

27. Present Level of PerformanceShould also include HEALTH “John cannot verbally tell caregivers how to transfer him, making him reliant on his ed. Asst. throughout the day.” This year, Latrice missed 40 school days because of pressure sores. She needs to learn ways to move in her wheelchair to reduce risk of pressure sores so she doesn’t miss school.”

28. Health in the IEP • Starting at age 14, IEPs can be more closely linked to post-school outcomes. • Post-school outcomes can and should include as much self-care and independent management of health conditions as possible

29. Health in the IEP • Starting at age 14, IEPs can be more closely linked to post-school outcomes. • Post-school outcomes can and should include as much self-care and independent management of health conditions as possible

30. Section 504 of the Rehab Act of 1973 • Section 504 is a civil rights law that prohibits discrimination against individuals with disabilities. Section 504 ensures that the child with a disability has equal access to an education. The child may receive accommodations and modifications. • Unlike the Individuals with Disabilities Education Act (IDEA), Section 504 does not require the school to provide an individualized educational program (IEP) that is designed to meet the child's unique needs and provides the child with educational benefit.

31. 504 Plan & Health • Student not in special education • Student requires accommodations and modifications to participate in education. • May be developed as a result of a request by the school, a request by the parents/guardians, or in response to a problem with the student’s care at school. Downside: Under Section 504, fewer procedural safeguards are available to children with disabilities and their parents than under IDEA. States/local school districts receive NO financial support.

32. 504 Plan & Health 504 Plan • Student not in special education • Requires accommodations and modifications to participate in education. • May be developed as a result of a request by the school, a request by the parents/guardians, or in response to a problem with the student’s care at school. • Testing conditions (extended time, quiet spot, etc) • Attendance (absenteeism, late arrivals) • Adapted coursework: volume, PE,

33. Family Educational Rights and Privacy Act (FERPA) 1974 • PL 94-142  IDEA  IDEIA • Protects privacy of educational records • Gives parents rights to their child’s school records – until youth turns 18. • Right to correct misleading information

34. Health Insurance Portability Privacy and Accountability Act of 1996 (HIPAA) • Insurance Coverage /exclude pre-existing • Protect personally identifiable health information – signature @ age 18 • Reduce costs by standardizing CPT & ICD-9 codes

35. HIPAA & FERPA Signature – consent at age 18 • Education mandated to start conversation re: education records/sign-offs • Health – when does this conversation start? • Student/patient needs to practice skill before age 18: ASSENT to CONSENT - circles of support (stand by, part-time, fulltime)

36. Informed Decision Makers FERPA Family Education Rights & Privacy Act HIPAA Health Insurance Portability and Accountability Act 1. Privacy  Records 2. Consent  Signature (signature stamp) - Assent to Consent - Varying levels of support - Stand-by (health surrogate) - Guardianship (limited to full)

37. Transition & ……Family & Youth

38. Societal Context for Youth without Diagnoses in Transition • Parents are more involved - dependency “Helicopter Parents” • Twixters = 18-29 - live with their parents / not independent - cultural shift in Western households - when members of the nuclear family become adults, are expected to become independent • How they describe themselves (ages 18-29) 61% an adult 29% entering adulthood 10% not there yet (Time Poll, 2004)

39. Advocacy without agitation Negotiation based on law and compromises If the answer is NO, more information maybe needed Gather strength – Find an ally Skills for Families, Children and Youth

40. Support for Success (screening- eyes, ears, fine motor, intellect and emotional IQ) 2. Partner with the Educator (tools for families, direct contact) 3. Communication & Information (Skills for families and children/youth post info in waiting rooms – teaching moments) 4. Health and Wellness Baseline Take Home Messages

41. What would you do, if you thought you could not fail?

42. www.hrtw.org

43. Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME pattihackett@hrtw.org

44. Let’s Talk…….Questions ??

45. Resources - FAMILY RESILIENCY SOURCE: National Center on Accessibility "Becoming a Resilient Family: Child Disability and the Family System" Monograph addresses not only how having a child with a Disability can impact the family system, but also how families can use their circumstances to become a more resilient and Healthy family. http://www.ncaonline.org/monographs/17family.shtml

46. IDEA & 504 Discrimination: Section 504 and ADA http://www.wrightslaw.com/info/sec504.index.htm Sample Section 504 Plan: Medical Management Plan for a student with diabetes http://diabetes.org/advocacy-and legalresources/discrimination/school/504plan.jsp IDEA 2004 http://www.wrightslaw.com/idea/index.htm IEP's vs. 504 Plans http://www.slc.sevier.org/iepv504.htm

47. IDEA & 504 Overview of Section 504 http://www.504idea.org/504overview.html SECTION 504 AND IDEA: Limited vs. Substantial Protections For Children With AD/HD and Other Disabilities http://www.parenttoparentofga.org/roadmap/advocacy/educationlaws504&ideachadd.htm

48. HIPAA & FERPA UNIVERSITY OF MIAMI- ETHICS PROGRAM Privacy / Data Protection Project http://privacy.med.miami.edu/glossary/xd_education_records.htm Legal and easily understood overview of FERPA and HIPAA. Great resource for teachers and young adults- to better understand compliancy and what it means when you sign over permission.

49. The Impact of FERPA and HIPAA on Privacy Protections for Health Information at School: Questions from Readers http://www.healthinschools.org/ejournal/2003/privacy.htm Summary on HIPAA and FERPA from the Department of Education: The Family Policy Compliance Office has not published any guidance on the applicability of FERPA to HIPAA. However, the Office worked closely with HHS on this issue during the rulemaking process. Because FERPA affords students adequate privacy protections, the Government agreed that records that are protected by FERPA should not be subject to HIPAA. The HIPAA Final Privacy Rule of December 28, 2000 explains that records that are subject to FERPA are not subject to HIPAA. Additionally, medical records that are excepted from FERPA's definition of "education records" under section 99.3 "education records" provision are also exempted from coverage by HIPAA. (See page 82483 of the December 28, 2000, Federal Register document on the HIPAA final rule.)

50. How to Solve Problems and Protect Parent-School Relationships by Pam Wright & Pete Wright http://www.wrightslaw.com/info/advo.probs.protect.htm Offers advice about how to resolve problems with the school by restructuring relationships, learning effective advocacy skills, using strategies in letters, and learning to negotiate and persuade. Learn why Pam says, "You need to view your relationship with the school as a marriage without the possibility of divorce."