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
This presentation discusses pediatric advocacy issues and the patient-centered medical home.
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1. Inside the World of Pediatric Healthcare Advocacy Elisabeth
Schuler Russell Founder and President Patient Navigator,
LLCNational Association of Healthcare Advocacy Consultants
Berkeley, California November 15, 2009
2.
Todays 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
3.
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
4.
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 childs 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.
5.
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
6.
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 patients 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.
7.
Care is coordinated and/or integratedacross all elements of the
complex health care system (e.g., subspecialty care, hospitals,
home health agencies, nursing homes) and the patients 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.
8.
Quality and safetyare 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 patients family.(more)
9.
Enhanced accessto care is available through systems such as
open scheduling, expanded hours and new options for communication
between patients, their personal physician, and practice
staff.
Paymentappropriately recognizes the added value provided to
patients who have a patient-centered medical home.(more)
10.
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
Collaborativehttp://pcpcc.net
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 12.
Doctor and Nurse Advice: Advocacy Dos 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
patients care.If they choose to get a second opinion, then we can
refer them.Also ask any questions they may have no matter
what.
13.
Doctor and Nurse Advice: Advocacy Donts 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.Weve had
patients who have gone to more than two or three places; then trust
may be compromised.
14.
RESOURCES
Family, community, school, church
Condition or disease-specific advocacy and education
groups
Government and social service agencies, all levels
Media, Internet groups
15.
EDUCATION
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
16.
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.
www.ldonline.org(learning disabilities and ADHD for users)
17.
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
18.
Transitioning Adolescents with Chronic Conditions Building
Resilience
Include the adolescent and family in treatment plans
Build treatment plans based on the adolescents 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)
19.
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 Emilys mother during a classroom function but
do not know her well.
20.
After speaking with the teacher, you decide to call Emilys
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 Emilys 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?
21.
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.
Conclusions 22.
Selected Websites
National Cancer Institute www.cancer.gov Best overall starting
point for cancer type information, trials, treatments,
publications, dictionary.
American Society of Clinical Oncologywww.cancer.net 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.
23.
National Institutes of Health with the National Library of
Medicineoffers access to Medline Pluswww.medlineplus.gov 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.TheNational Center for
Complementary and Alternative Medicine http:// nccam.nih.govis the
best place to start research on this topic.
Cancer Care www.cancercare.org Counseling, monthly calendar of
educational programs, information and referrals, finding resources,
publications, on-line support groups,e-newsletter.
American Cancer Society www.cancer.org Sections for patients,
families, friends, caregivers, survivors, donors, information
seekers, treatment decision tool (NexProfiler), message boards,
community resources.
24.
CaringBridge free websites for families
www.caringbridge.org
National Childhood Cancer Foundation- Childrens Oncology Group
http://www.curesearch.org/
Candlelighters Childhood Cancer Foundation
http://www.candlelighters.org/
Patient Advocate Foundation Pediatrics Resource
Centerhttp://www.patientadvocate.org/resources.php?p=533
Miracle Flights for Kids Air flights (there are others
also)
http://www.miracleflights.org/
25.
See also individual advocacy organizations by specific illness
(leukemia, brain tumors, spina bifida, individual cancer types,
etc.)Virtually everything is represented.
