Building Strong Partnerships
to Put the Puzzle Together
Marianne Beach MEd. LCSW
Sheila Rucki Ph.D APRN BC
Objectives
• Describe innovative strategies for meeting the needs of
families with children with special health care needs.
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Discuss family centered care delivery initiatives that safely
bridge families with community and heath care services.
• Discuss opportunities that maximize parent partnerships and
actively build relationships between the tertiary care center,
pediatric practices and Title V programs on behalf of children
with special health care needs.
The Population of Interest
 …the frequent flyers. . .
 the complex, the challenging
 . . . those who have
 Chronic physical, developmental, behavioral, or emotional
conditions
 Who require health and related services of a type or amount
beyond that required by children generally (USMCHB, 97)
About 13% of all US children
Account for 65-80% of pediatric health care expenditures
The Trajectory of Care
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Vulnerability
Fixed deficits and progressive conditions
Roles and relationships
Family vs. system focused delivery models
Creating and sustaining linkages
Care coordination
Transitions
Barriers to Partnerships
 Differences among systems to access services and
resources
 Obligations for care transcend single episodes
 No single point of entry
 Separate criteria for eligibility
 No single organization/ agency coordinated to
provide requisite services
 Inability to share financial or human resources
across systems
 Fragmented and bounded systems of care
 Systems of care and health care professionals
that often are not linked
 Different services required for different needs
and ages
 Different languages (professional, cultural)
 Geographic location and transportation
Goals of Care – Child within the
Family Unit
• To balance the child’s specific health care needs with the family’s other
priorities
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Minimizes the disruption for the child and family
Normalizes the care of the child within the family context
Maximizes the family’s ability to function
Build partnerships
Create capacity
Build collaboration opportunites
Crossing the Quality Chasm – A new health care
system for the 21st century
• “The current care systems cannot do the job.
Trying harder will not work. Changing systems
of care will”
• “Improved performance will depend on new
system designs.”
Unique Perspectives and Power
Differentials
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The family’s view
The health care system’s view
The school system’s view
The community ‘s view
Critical Interfaces
• Ongoing processes and structures for
collaborative planning
• Financial support
• Support coordinated activities
• “People” support across systems
• Pre-service and in-service training
• Recognition of success
Family Centered Care
Shifting orientation
Professional centered
view of care
Family Centered
Collaborative view of
care
Families central in child's life
Values and priorities central to plan of care
Acceptance of diverse styles of coping
Assist families recognize strengths
Evaluate alternative choices
Facilitate family care giving
Actively particpate in program development
Advantages of Community-Care for
Families
 Less disruption in family life, work, and school.
 Family connected with community and natural support
systems.
 Service plans reflect family and community values.
Putting Partnerships to Work
Benefits to Families
Benefits to Providers
• Opportunities to share • Increase knowledge
with other families
of family needs
• Network with
• Increase empathy
providers
and understanding
about families
• Brings fresh
• Expand knowledge
perspective to the
• Gain skills
table
Opportunities
 Reform existing services
 Create access to services
 Gain comfort with complexity
 Create changes in the health care system
 Redefine roles/relationships of providers
Outcomes of Partnerships
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Promotes timely access to needed services at all levels
Promotes continuity of care.
Maximizes use of resources.
Improves quality of care and life.
Increases family satisfaction.
Increases care giver satisfaction
 Develops competence of families,
adolescents and young adults
 Enhances positive health, developmental,
functional, cognitive, psychosocial, and
behavioral outcomes
 Creates system change for all
Medical Home
• Responsibilities of primary care provider:
 Accessible
 Family centered
 Comprehensive
 Continuous
 Coordinated
 Compassionate
 Culturally competent
Medical Home is . . .
• The place where primary care is provided
• The process of care in that place
• The team of people including families and all office
staff delivering primary care
• For all children/youth/adults
• A continuum of quality care
• Part of a community of resources
• About relationships. . .
How Does the Care Differ from the
Care of Other Children?
• Requires more information about:
– The family – attitudes, resources, capacity to care for the child, and priorities
• Family does most of the care and is in charge most of the time
– Requires partnership
• Balance condition related needs with general well-being of child and family
• Involves many systems and people
Gains
• Professional-family PARTNERSHIP through a MEDICAL
HOME
• OUTREACH to meet the family at the level at which they an use
the service
• MULTIDISCIPLINARY TEAMS that COMMUNICATE
honestly and effectively with one another and with the family
• EMPOWER FAMILIES to meet the needs of their children
• COORDINATION of care
Care Coordination
• Increased access to resources
• Increased use of available services
• Improved efficiency and effectiveness in
service delivery.
• Family centered rather than service centered
Care Coordination Strategies
 Key stakeholders become partners
 Family determines service needs
 Family & caretakers and community
stakeholders establish partnerships.
 Partnership is consistent, fluid and
continuous.
Family Centered Partnerships
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Open sharing of information and concern
Be available
Help get information and answers to questions
Become partners
– Offer choices in treatments
– Involve family in decision making
– Develop family advocates
Rewards
• Share the joys of focusing on the child’s growth
and development (accentuate the positive)
• Support and encourage the parents about what a
good job they are doing under difficult
circumstances
• Empower families to regain control of their
lives
• Engage in authentic communication
• Support strengths of families
Our Partnerships in Action
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Parents
Baystate Children’s Hospital
MA Department of Public Health
American International College
State and Community Agencies
Tufts’ University Residency program
Recent Initiatives
• Tufts’ residents Community Monthparents as teachers; home visits and
yearly training series
• AIC nursing students community health
rotation in families homes for 6 weeks
• Medical Home Center for Families
activities and peer counseling
• Medical Home Grand Rounds with parents
and pediatricians presenting together
…and More
• Medical Home Work Group monthly
meetings
• Schwartz Rounds
• Statewide Consortium for CSHCN
• Annual Regional trainings with parent
presentations
• Health Fairs
Our Hope
• Children with special health care needs
will be able to experience the world
through their eyes on their terms without
limitations, contempt, ignorance, revulsion,
disapproval, cruelty or condescension.
• They should guide the process so they are
part of the family, the class, the school and
the community
They are:
They are the only limiting force
and they will show us their
potential
Children with Special Health Care
Needs
The decision is not about whether or not to
become partners with care providers…it is
about how good of a partner to become.
We challenge you to become partners in this
journey… The rewards are endless.