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.

• 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 haveChronic physical, developmental, behavioral, or

emotional conditionsWho 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

• 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– 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

• 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 centeredview of care Collaborative view of

careFamily Centered

Families central in child's lifeValues and priorities central to plan of care

Acceptance of diverse styles of copingAssist families recognize strengths

Evaluate alternative choicesFacilitate 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• Opportunities to share

with other families• Network with

providers

• Expand knowledge• Gain skills

Benefits to Providers• Increase knowledge

of family needs• Increase empathy

and understanding about families

• Brings fresh perspective to the table

Opportunities

Reform existing servicesReform existing services

Create access to servicesCreate access to services

Gain comfort with complexity Gain comfort with complexity

Create changes in the health care systemCreate changes in the health care system

Redefine roles/relationships of providersRedefine roles/relationships of providers

Outcomes of Partnerships

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

• 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

• 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 Month- parents 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.