Inside the World of Pediatric Healthcare Advocacy
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Inside the World of Pediatric Healthcare Advocacy



This presentation discusses pediatric advocacy issues and the patient-centered medical home.

This presentation discusses pediatric advocacy issues and the patient-centered medical home.



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Inside the World of Pediatric Healthcare Advocacy Inside the World of Pediatric Healthcare Advocacy Presentation Transcript

  • Inside the World of Pediatric Healthcare Advocacy Elisabeth Schuler Russell Founder and President Patient Navigator, LLC National Association of Healthcare Advocacy Consultants Berkeley, California November 15, 2009
    • Today’s Workshop:
    • Understand inherent differences when advocating for children
    • Explain concept of “Child-Centered Medical Home” and relevance to advocates as a model
    • Chronic vs. acute illness – needs and resources
    • Survivorship and Transitions
    • In-class exercise/Conclusions
    • Trial by Fire – My unexpected road to advocacy
    • Advocating for children – how is it different than working with adults?
      • Medical needs
      • Emotional differences (family, community)
      • Longer term issues (education, transitions)
    • Engage allies, avoid hand-wringers, share information
    • Background of the Medical Home Concept
    • The American Academy of Pediatrics (AAP) introduced the medical home concept in 1967, initially referring to a central location for archiving a child’s medical record. In its 2002 policy statement, the AAP expanded the medical home concept to include these operational characteristics: accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective care.
    • Patient-Centered Medical Home
    • Joint Principles March 2007*
    • Personal physician - each patient has an ongoing relationship with a personal physician trained to provide first contact, continuous and comprehensive care.
    • *American Academy of Family Physicians
    • American Academy of Pediatrics
    • American College of Physicians
    • American Osteopathic Association
    • Physician directed medical practice – the personal physician leads a team of individuals at the practice level who collectively take responsibility for the ongoing care of patients.
    • Whole person orientation – the personal physician is responsible for providing for all the patient’s health care needs or taking responsibility for appropriately arranging care with other qualified professionals. This includes care for all stages of life; acute care; chronic care; preventive services; and end of life care.
    • Care is coordinated and/or integrated across all elements of the complex health care system (e.g., subspecialty care, hospitals, home health agencies, nursing homes) and the patient’s community (e.g., family, public and private community-based services). Care is facilitated by registries, information technology, health information exchange and other means to assure that patients get the indicated care when and where they need and want it in a culturally and linguistically appropriate manner.
    • Quality and safety are hallmarks of the medical home:
      • 􀂃 Practices advocate for their patients to support the attainment of optimal, patient-centered outcomes that are defined by a care planning process driven by a compassionate, robust partnership between physicians, patients, and the patient’s family. (more)
    • Enhanced access to care is available through systems such as open scheduling, expanded hours and new options for communication between patients, their personal physician, and practice staff.
    • Payment appropriately recognizes the added value provided to patients who have a patient-centered medical home. (more)
    • How do the medical home principles resonate with your work as a navigator or advocate?
    • Which of the goals of the medical home can we strive to meet for our youngest clients and families? Where is our value-added?
    • Legislative update
    • Patient Centered Primary Care Collaborative
    • Advocacy Needs - Chronic Condition vs: Sudden Illness
    Finances and education – short or long term issue Finances and education – long term issue Caregiver needs – immediate, unanticipated requirements Caregiver needs – better-known, long term plan Advocacy Skills – learned as you go but stressful Advocacy Skills – mastered by child and parents Family Support – Immediate and inexperienced participants Family Support – Long term systems needed Treatment decisions – often urgent under duress Treatment Decisions – gradual, change over time Learning about the illness or diagnosis – FAST, stressful Learning about the condition – ongoing and in depth Provider Team - FAST Provider Team – Long term relationship Acute Illness Chronic Condition
    • Doctor and Nurse Advice: Advocacy “Do’s” for parents:
    • Parents should clearly seek centers with experience in treating the condition and those that offer multidisciplinary care. The Center should have access to the “newest” therapies and preferably be part of clinical trial consortiums that offer the “best” in treatment.
    • Keep a binder of labs, procedures, etc. to keep track of the patient’s care. If they choose to get a second opinion, then we can refer them. Also ask any questions they may have no matter what.
    • Doctor and Nurse Advice: Advocacy “Don’ts” for parents:
    • They should be strong advocates but should not get “lost” in the system to the point of paralyzing care in waiting for multiple second opinions. They need to identify the caretaker/physician they trust the most and work with that physician to determine the “best” approach in a timely fashion.
    • Be careful what you read on the internet. Definitely get a second opinion but you have to trust someone at some point. We’ve had patients who have gone to more than two or three places; then trust may be compromised.
    • Family, community, school, church
    • Condition or disease-specific advocacy and education groups
    • Doctor offices, social workers, peers
    • Mission-specific non-profit organizations (financial, transport, caregiver)
    • Government and social service agencies, all levels
    • Media, Internet groups
    • Will always be a factor in child advocacy
    • Short or long-term arrangements (assess, plan, intervene)
    • Laws : Rehabilitation Act of 1973 – Section 504; public schools must provide accommodations for students with a physical or mental impairment which substantially limits one or more major life activities (cancer is a qualifying condition)
    • Americans with Disabilities Act of 1990 – protects against discrimination of disabled people, can pertain to schools
    • Individuals with Disabilities Education Act of 2004 (IDEA 2004) – free and appropriate education in the least restrictive environment (special ed, speech therapy, OT/PT, alternate technology). Can qualify for Individualized Education Plan under this Act.
    • (HHS)
    • (Dept. of Justice)
    • (Dept. of Education)
    • Special Education Advocacy is a complex field
    • (law and library of resources)
    • (learning disabilities and ADHD for users)
    • Moving to Survivorship
    • Life Immediately Beyond Treatment
    • Anxiety
    • Returning to Normalcy
    • Physical Effects, Short and Long-Term
    • Late-Term Effects, Complications
    • Long-Term Psychosocial Issues
    • Fear of Recurrence
    • Social Relationships/Self-Esteem and Confidence
    • Transitioning Adolescents with Chronic Conditions – Building Resilience
    • Include the adolescent and family in treatment plans
    • Build treatment plans based on the adolescent’s strengths and abilities
    • Address the normal developmental needs of youths and families
    • Source: Ann E. Garwick and H.E.C. Millar, Promoting Resilience in Youth with Chronic Conditions and their Families (Apr 96)
    • In Class Exercise
    • Your 8-year comes home from school one afternoon and tells you that his teacher was crying. The teacher told her students that their classmate Emily was diagnosed with leukemia, a type of cancer. You have met Emily’s mother during a classroom function but do not know her well.
    • After speaking with the teacher, you decide to call Emily’s mother. From your brief conversation, you learn that she is recently separated from her husband and has two younger children. The family still has health insurance, but possibly only for 6 more weeks because Emily’s father expects to be laid off. The mother is overwhelmed with her situation and does not know where to begin. She has never known anyone with cancer, becomes very upset that “my baby might die,” and is having trouble caring for her two other children. She agrees to meet with you and accepts your offer to help her.
    • What do you do? Where do you start?
    • Pediatric advocacy shares elements with adult work, but children are not little adults; many people do not know how to deal with a “sick child.” Finding pediatric specialists is essential.
    • Parents and families feel tremendous responsibility to advocate and get the best for their child, even as they are themselves suffering.
    • Education, social and peer issues are very important to children. Normal development issues must be addressed and acknowledged.
    • Trying to keep life “normal” is a good goal, but children need to be given age appropriate information and a voice in their care, as appropriate. This evolves over time.
    • As they transition to adulthood, they must learn to advocate for themselves and to manage their illness or condition.
    • Selected Websites
    • National Cancer Institute Best overall starting point for cancer type information, trials, treatments, publications, dictionary.
    • American Society of Clinical Oncology Patient information website of the American Society of Clinical Oncology (ASCO). Information on more than 85 cancer types, clinical trials, coping, side effects, oncologist database, message boards, patient support organizations, live chats, feature articles.
    • National Institutes of Health with the National Library of Medicine offers access to Medline Plus which has a powerful publication search tool, information about cancer drugs, clinical trials, and interactive tutorials about the procedures used to diagnose and treat cancer. The National Center for Complementary and Alternative Medicine http:// is the best place to start research on this topic.
    • Cancer Care Counseling, monthly calendar of educational programs, information and referrals, finding resources, publications, on-line support groups, e-newsletter.
    • American Cancer Society Sections for patients, families, friends, caregivers, survivors, donors, information seekers, treatment decision tool (NexProfiler), message boards, community resources.
    • CaringBridge – free websites for families
    • National Childhood Cancer Foundation- Children’s Oncology Group
    • Candlelighters Childhood Cancer Foundation
    • Patient Advocate Foundation – Pediatrics Resource Center
    • Miracle Flights for Kids – Air flights (there are others also)
    • See also individual advocacy organizations by specific illness (leukemia, brain tumors, spina bifida, individual cancer types, etc.) Virtually everything is represented.
    • Contact information:
    • Elisabeth Schuler Russell
    • Patient Navigator, LLC
    • Vienna, Virginia 703-281-4744
    • [email_address]