The Importance of Families and Consumers in MCH Programs

1. The Importance of Families and Consumers in MCH Programs Richard A. Aronson, MD, MPH MCH Leadership Conference April 2002

2. Essential Purpose of MCH • Beyond pathology, morbidity, mortality, risk oriented approach • Foster conditions for families and communities to become healthy • Community change is key factor in improved health • Foster potential of children and families to dignify their lives and that of their communities

3. Declaration of Independence We hold these truths to be self-evident, that all men are created equal, that they are endowed…with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness That to secure these rights, Governments are instituted…, deriving their powers from the consent of the governed…

4. Health = Mind, Body, Spirit • How we live together– the quality of our relationships– influences our health (Putnam) • Human beings, at their best, seek connections, support, respect, and celebrate each other • Tap into creativity, humor, diversity, common ground • We pay least attention to spirit in health care. More than 95% health care $ goes to modern medical technology

5. MCH • Making • Community • Happen

6. MCH Five Guiding Principles PHILOSOPHY Cultural Competence Cultural Competence Family Centered Care Community Leadership THE FAMILY THE FAMILY Capacity and Resiliency Outreach SERVICE POLICY

7. Family-Centered Care • People treated with dignity and respect • Communicate and share complete information with families in ways that are affirming and useful • Families build on their strengths by participating in experiences that enhance their sense of control

8. Example of Family Centered Care Family Gathering - 1999, 2000, 2001, 2002 • Integrate the 2 Healthy Start Projects with State Title V and the perinatal system. • Families designed and carried it out. • Cultural celebration. • Providers did not play usual role of expert speaker or panelist.

9. Effectiveness of Family Involvement (1) • Medical College of Georgia Hospital - Family involvement in planning, facility design, staff education,committees. • 2 years after opening, rated highest in patient satisfaction among 38 comparable medical centers. • In 2001, ranked in 99th percentile for positive patient satisfaction compared with 48 other hospitals (Sodomka, 2001)

10. Effective Family Involvement (2) • Community health advisors (peer educators, outreach workers) shown effective in linking families with good medical care and insurance coverage. • Reduced hospital and emergency room visits, length of hospital stay, and # complications for certain illnesses. • Increased availability of cost-effective, culturally competent care (Annie Casey Foundation, 1998)

11. Effective Family Involvement (3) • Children’s Mental Health Blended Funding Project, King County, Washington State. HMO with family participation service and family initiated evaluation (Vander Stoep et al, 1999) • Funds pooled from education, child welfare, mental health • Families decide how $ spent for their children in collaboration with team created by family. • Increased community connections and peer support for child and family. • Proportion of children living in community homes increased from 24 % to 64%. Average cost of care down by $1,166 per family.

12. Community Wide Leadership • Vision - Create rather than solve • Collaboration - Honor all stakeholders as partners and experts • Risk - Let go of turf and become open to new ways of doing business • A great learning

13. Leadership Paradigm Change • “Leadership is like cow manure. If you spread it all around, everything grows. If you put it all in one place, it stinks.” • “Life is a series of golden opportunities carefully disguised as unsolvable problems.” • Experts solving problems (1900) to everyone as an expert creating a shared vision and action plan to achieve it (2000).

14. Looking Fear in the Face “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along…’ You must do the thing you cannot do.” Eleanor Roosevelt

15. Future Search - Example of Community Wide Leadership • Unique conference used world-wide by hundreds of communities and organizations • Helps large diverse groups discover values, purposes, and projects they hold in common • Enables people to create a desired future together and to start action right away • Helpful in uncertain, fast-changing situations • Includes people with a stake in the issue, creating unlikely new partnerships and enlarging potential for leaning and action

16. Future Search Process • Whole system participation • Conflict acknowledged, but not worked • Focus on common ground and desired future • All voices expressed and validated • Shared leadership and self-management • Everyone as expert - Clear communication essential • Language - Avoid jargon, acronyms

17. Future Search Milwaukee Common Ground Milwaukee Common Ground • Started 1993 • Uses future search process and principles • Whole system in room • Celebrate diversity, discover common ground • Action plan to reduce infant mortality

18. Resiliency • Capacity of children, families, neighborhoods, communities to “bounce back” and do really well • Power of people to recover, heal, grow, and succeed in the midst of change • Equip people and communities with tools to empower themselves • Focus on strengths and celebrate success

19. Resiliency at Individual Level • Flexible and Adaptive (Werner and Smith) • Problem Solving, Planning Skills (Rutter) • Internal Sense of Power, Locus of Control • Sense of Purpose and Optimism “As human beings, our greatness is not so much in remaking the world…as in remaking ourselves” -Ghandi

20. Family Level Resiliency • From conception onward: An enduring, loving relationship with at least 1 adult • High and clear expectations: “You can do it” • Encourage children as valued and responsible participants in family life

21. Community Resiliency • Rich in social support networks (Garbarino) • Associations (McKnight) • Shared vision and purpose (Waisbord) • Resources for healthy child development - health care, child care, parenting support, job training, employment, housing, recreation

22. African American Family Resiliency (McManus) • Importance of extended family for support • Male spouses/partners • Education, Employment, Income • More likely to interact with people not in family

23. African American Family Resiliency Project • Resilient families attended church with greater frequency. • Resilient families more mobile. • Ownership of automobile. • Non-resilient families more likely to feel powerless, helpless, and inept.

24. Another Example of Resiliency African American IM Task Force • Convened by Title V agency in 1995 to address infant mortality disparity • Diverse stakeholders • Community-driven, resiliency-based research

25. Research • A great deal of research has examined “traditional” risk factors associated with the racial disparity in infant mortality • Need for a resiliency-based study with strong community leadership

26. Resiliency Work Group Proposal (1) • Determine the extent to which resiliency in African American families and communities improves infant health and survival • Determine the extent to which family-centered and culturally competent systems improve infant health and survival

27. Resiliency Work Group Proposal (2) • Take into account systemic factors such as racial discrimination • Team from public and private sectors, with primary leadership from the Black Health Coalition and strong family involvement

28. Resiliency Work Group Hypotheses • That increasing resiliency in African American families can reduce the large disparity in infant deaths. • That changing health and social systems to become more family-centered and culturally competent can also contribute to reducing the disparity.

29. Challenges of Outreach • Gap between health insurance and engagement in services • Confusion resulting from rapid systems change • Acknowledge impact of race, gender, and class on seeking care • Essential and unlikely partnership

30. Definition of Cultural Competence Cultural competence is a set of congruent behaviors, attitudes, and policies that come together in a system, agency, or among professionals and enable that system, agency, or those professions to work effectively in cross cultural situations. National Center for Cultural Competence http://www.dml.georgetown.edu/depts/pediatrics/gucdc/cultural.html

31. The Access Challenge • Even with the best insurance coverage, optimal child care, transportation, reasonable hours, one-stop co-location of services, and individual motivation • If the health care environment is not a welcoming one that honors people and affirms their power to heal themselves • Then why, already burdened, choose to go?

32. Why Public Health Is Poised to Practice Cultural Competence • Instrumental advocates for community efforts to improve health status, systems, reduce disparities • Recognizes interlinking contexts of biology, family, culture, community - healthy community • Understands culture as determinant of health-related beliefs for all people

33. Cultural and Linguistic Competence Organizational Self-Assessment • Set aside resources for cultural competence. • Describe implementation: training, job descriptions, hiring practices, program guidelines, mission statement, staff evaluations, consultants, subcontractors. • Include people of diverse cultures. • Research and evaluation methodology. • Easy to understand educational materials. • Translators respectful of culture. • Recognize spiritual healing culture-specific role

34. The Cultural Competence Continuum • Cultural Destructiveness • Cultural Incapacity (Unintentional systemic bias) • Cultural Blindness (Expressed philosophy of being unbiased) • Cultural Pre-Competence (Realization of weaknesses, strengths and needs assessments) • Cultural competence (Genuine respect for cultural differences, ongoing self-assessment) • Cultural proficiency (culture as core to who we are)

35. MCH Five Guiding Principles Implementation • Requests for Proposals • Organizational Self-Assessment • Risk Assessment Tools Modified • Racial and Ethnic Disparity Efforts • Shared Presentations • Criteria for Awards • MCH Advisory Committee

36. Implementation (Continued) • Turning Point - Transforming public health • Response to September 11, 2001. • MCH Strengths and Needs Assessment • Brighter Futures - Plan to Reduce Adolescent Pregnancy • African American Infant Mortality Work Group • Future Search • POCAN

37. Transcending Fear • The root of war is fear." Thomas Merton  • In Chinese, the character for crisis means both "peril" and "opportunity." • "Courage is resistance to fear, mastery of fear-not absence of fear." Mark Twain • "When you get into a tight place and it seems you can't go on, hold on, for that's just the place and the time that the tide will turn." Harriet Beecher Stowe

38. References • Aronson RA. Transforming MCH to enhance the health and safety of children, families, and communities in Wisconsin: A work in progress. Wisconsin Medical Journal 2000; 99:18-24. • Berkman LF and Kawachi (eds). Social Epidemiology. Oxford University Press, 2000. • Putnam RD. Bowling Alone: The Collapse and Renewal of American Community. Simon and Schuster. New York, 2000. • Senge PM. The Art and Practice of the Learning Organization. Currency Doubleday. New York, 1994. • Weisbord M and Janoff S. Future Search: An Action Guide to Finding Common Ground in Organizations and Communities. Berrett-Koehler Publishers. San Francisco, 2000.