Parents helping other parents has been a successful model over time. However, it is not easy to engage families from different backgrounds without first building relationships in the communities in which the families live. The purpose of this booklet is to provideinformation on building such relationships. This booklet was developed through the willingness of the Family Voices network and family leaders around the country to share their information and knowledge about “building community” in their efforts to serve all families of children and youth with special health care needs.
Between December 2004 and March 2005, we disseminated a questionnaire by email and received responses by email and phone. The questionnaire is included in the appendix. We are appreciative of the Family Voices Network members, Regional Coordinators, and Family-to-Family Health Information Center staff from across the country who responded to our questionnaire. The questionnaire was developed with the help of our partner organization, the National Center on Cultural Competency (NCCC) Children with Special Needs Project.
We hope that this booklet, which summarizes a portion of the responses received, will provide ideas and inspiration to family leaders who are working to assure that all families of children with special needs have access to the information and support they need to find the highest quality care for their family.
Community brokers/liaisons are trusted individuals who may or may not live in a certain community yet who have knowledge of a community’s strengths and needs. Brokers act as liaisons to help bridge gaps in information dissemination.
They are often able to enhance the capacity of the community in areas such as outreach, community engagement, family involvement and service delivery to culturally and linguistically diverse and underserved populations. Community liaisons/brokers help service providers and others gain entry into communities. Such individuals may be affiliated with a variety of agencies. They can come from many walks of life and may include an informed parent, a doctor, a nurse, an early interventionist, a teacher, a Head Start worker, the local grocer, a traditional healer, a minister, or a social worker. Within an agency, a community liaison/broker may be the boss or administrator, the program assistant, the program designer, the middle manager, the advocate, the front-line contact, the data collector, the provider of technical assistance, or the community organizer. More specifically, community liaisons/brokers are:
• School-based staff: educator/teacher, school nurse, safety/officer/crossing guard, librarian, family resource staff
• University-based staff / volunteer: university program staff, college students, sorority and fraternity brothers and sisters
• Case workers / case managers / social workers
• Translators / interpreters
• Faith-based organization staff / volunteers / parishioners
• Non-profit agency staff:
YMCA Children’s Rehabilitation Services (CRS) inclusion coordinators, Refugee Women’s Alliance staff, regional resource center staff, Kids Care Coalition staff, American Red Cross staff, small business association staff, Childcare Resource Service staff
• Staff of disability-specific organizations: United Cerebral Palsy staff, developmental disability staff
• Babysitters / child care providers• Government program staff: Head Start and Early Start staff (staff have helped combine information dissemination and outreach activities with their own activities), Title V staff, Medicaid program staff, community guides with the Aging and Disability Services Administration, Early Intervention workers
• Local government / community staff / leaders: City Parks and Recreation department staff, community leaders, firemen (in one very isolated community, the firemen are contacts, and activities for outreach are combined with activities they are conducting), community-based program family advocates, juvenile justice staff, pow wow planners
• Health and therapy-related staff: Hospital staff, nurses, receptionists, pediatricians, Department of Health Services staff, program administrators, community clinic staff, Behavioral Health, Oral Health staff, Public Health program staff, therapists and speech & language pathologists
• Family members: moms, dads, brothers, sisters, aunts, uncles, cousins, grandparents
Community liaisons/brokers provide support to families, programs and agencies by helping establish relationships, providing safe meeting spaces, offering materials and resources and one-on-one help, as well as training and advocacy. This support is provided in a number of ways, including the following… Getting started:
• Identifying known community leaders in the faith-based community and in the community at large, leaders who often have and provide other key contacts in the community• Identifying healthcare system service quality issues• Facilitating access for families to outside agency services and access for professionals to specific areas of the community • Facilitating introductions and referrals to contacts on Indian reservations
• Introducing staff to the community through meetings and board membership• Inviting program personnel staff to meet staff and parents within a community
• Establishing relationships with local Neonatal Intensive Care Units at hospitals that provide on-site support and services
• Recruiting other community brokers and creating a database of all brokers/liaisons
Safe space:
• Identifying meeting places where families feel comfortable
• Providing meeting space
• Providing a safe environment for families to share their concerns
Materials and resources:
• Providing oral health care resources and cross-referrals to families
• Providing home visits and mobile library services
• Providing information and resources for military families
• Providing verbal translations for both families and providers
• Providing an information flow within and between families and service providers
• Providing cultural and linguistic competency in materials development
• Disseminating information and resources to and from a community
• Reviewing materials and providing input
One-on-one help:
• Helping to create a social network map to provide a visual picture of those who provide and request information in a community
• Helping families complete applications and make phone calls, accompanying families to medical appointments, helping families find support groups, and helping create employment opportunities
• Helping families better understand and navigate the healthcare system
• Helping solve problems, decrease conflicts and misunderstandings, and improve relationships
Training opportunities:
• Assisting with an online training program such as an e-learning class to enhance community access to the medical community, with CME/CEUs to provide an incentive or medical professionals to take the course
• Assisting with in-service trainings for medical and nursing students and helping maintain a family faculty group. Parents within a family faculty group train various health care professionals on working with families of children and youth with special health care needs
• Educating service providers about community and family culture and beliefs
Other advocacy activities:
• Advocating for children and youth with special health care needs and their families
• Fostering meaningful communication between service providers and family
• Teaching families how to access services
• Initiating system changes and recommending culturally-appropriate service delivery
• Bridging gaps for families and providers across different communication styles
• Building providers’ trust in the community and the community’s trust in providers
• Hosting luncheons for community partners
Community liaisons/brokers are serving diverse populations, including…
• Hispanics (some only Spanish-speaking)• American Indians & Alaskan Natives• Asian American & Pacific Islanders (Hawaiians, Samoans, Filipinos, Tongans, Micronesians)• African Americans• Immigrants (Somalis, Sudanese, Kurdish, Serbo-Croatian, Russian, Indonesian, Pakistanis, Sri Lankan, Taiwanese, Cuban, Guatemalan, Honduran, Costa Rican, Malaysian, Haitian, Cambodian, Japanese, Chinese, Korean, Vietnamese)• Migrants (Mexteco populations, Mexicans, Central Americans)• Grandparents and other extended family members• Dads• Single moms• Foster parents• Teenage moms• Military families• Families with low incomes• Rural and frontier communities and families• Urban and suburban communities and families• State agency representatives (Department of Human Services, Department of Education, Office of Children with Special Needs/Title V, Medicaid, SCHIP, Behavioral Health, Oral Health)• Disability organizations (general and disability specific, professional and parent)• Medical/Healthcare professionals (MD’s, RN’s, DDS, School Nurses, therapists, both professionals and students)
Troubleshooting, negotiating, and supporting are just a few of the many ways in which community liaisons/brokers provide invaluable perspective and assistance. Others include…
• Troubleshooting for families to assist them with issues in the educational and health c are systems
• Helping families to understand the mainstream culture and learn how to access needed services
• Facilitating mutual understanding and communication between families and other service providers
• Educating staff about cultural beliefs and customs of families in the community
• Providing family-centered, culturally competent communication between agencies
• Helping with outreach into culturally diverse underserved communities
• Helping families better understand the health care system and other systems in which agencies work
• Helping provide a safe environment for families to share their concerns
• Helping solve problems, decreasing conflicts and misunderstandings and improving relationships among parties
• Helping negotiate and advocate for families in system change and recommending cultural and linguistic materials and service delivery
• Helping families receive access to information, resources and contacts, leading to more and improved services
• Helping establish parent/professional trainings
• Working together on projects and activities, sharing the costs as well as the benefits
• Providing support for each other
• Increasing awareness and appreciation of challenges faced by families of children and youth with special health care needs (especially financial challenges)
• Increasing information about healthcare decision-making and system navigation for specific groups such as Spanish-speaking families
• Having better linkages to other families and providers who speak languages other than English
• Improving the manner in which a community is viewed by those outside the community• Shared resources, including staff, meeting/office/conference space, funding (i.e., joint grant proposals)
Relationships with cultural liaisons/brokers are established through active recruitment, capitalizing on existing relationships, and networking within agencies and during events. Other ways in which community brokers/liaisons are found include the following…
• Active recruitment and hiring of individuals from within a community who have interests and skills as cultural liaisons/brokers
• Using staff who are known and trusted in the community to train bilingual and monolingual family volunteers
• Having discussions with other projects that use cultural liaisons about ways to work together
• Attending local community events to introduce selves to the community• Helping to set up and participate in community health fairs• Serving on committees, boards and task forces• Reestablishing linkages with former employees• Establishing relationships through interagency partnering and collaboration• Conducting on-site visits• Collaborating on community events, such as Fiesta Educativa, Exceptional Parents Day Conference, Health Fairs, Special Olympics, Head Start Family Fun Events, Child Find, and Pow Wows• Growing out of experiences with a child’s services, such as early intervention• Following up with individuals met at meetings• Gathering business cards from individuals who share similar interests, then arranging follow-up meetings to discuss ways to collaborate• Capitalizing on existing relationships
Various methods are used to maintain and strengthen relationships and bonds with community liaisons/brokers. By providing benefits such as monetary compensation, networking opportunities, and respect, community liaisons/brokers enter a win-win relationship with those they serve. Maintaining relationships can be accomplished by…
• Paying a competitive wage with benefits for community liaison/broker services• Providing free resources and disseminating resources and information• Offering benefits such as in-service training, conferences, and continuing education• Providing peer support, exchanging ideas and celebrating successes• Providing snacks and food at events• Providing child care support• Writing handwritten thank you notes with personal touches• Assisting with grant writing• Respecting each other• Recognition with certificates and appreciation events• Promoting parent professional partnerships and including players with many different points of view• Helping brokers prepare to sit on boards, committees and task forces – becoming more visible and thus sought out and respected for their input
We have learned from Family Voices Network members that building relationships with community liaisons/brokers is vital to reaching families of children and youth with special health care needs in their communities, particularly if these families are members of underserved or underrepresented groups. These trusted individuals are found throughout the communities in which we live and work – in schools, faith-based programs, hospitals, child care centers, and community-based programs. Brokers quickly become valued partners in making sure that resources are shared and that useful, culturally-appropriate information reaches the families that need it most.
Relationships with community liaisons/brokers help facilitate improved services to families and expand limited resources. Additionally, such relationships help offer community and family perspectives to colleagues in other agencies. Linking families, professionals and communities helps promote and develop community-based care that is accessible, comprehensive, coordinated and culturally and linguistically competent.
Building Community Using Collaborative Partnerships with Community Liaisons/Brokers Questionnaire
Community brokers/liaisons are trusted individuals who may or may not live in a certain community, but have knowledge of community’s strengths and areas of growth and who act as liaisons to help bridge gaps in information dissemination. The brokers are often able to enhance the capacity of the community in areas that might include but are not limited to: outreach, community engagement, family involvement and in service delivery to culturally and linguistically diverse and underserved populations. Such individuals may be affiliated with agencies you currently work with or seek to collaborate with. They come from many walks of life and include the informed parent, a doctor, a nurse, an early interventionist, a teacher, a Head Start worker, the local grocer, a traditional healer, a minister, or a social worker.
We would like to learn from you and your agency how you have built or are working to build these partnerships and how you draw on the expertise of these community liaisons/brokers. The information gathered will help us in developing a plan for working with community liaisons/brokers in the states and will be shared within our FV Network. We ask that you please take a few minutes to answer the questions below.
1. Within your geographic locale, what communities do you serve? (Communities could be neighborhoods, certain populations, including individuals from specific ethnic, cultural, disability, gender or language groups, etc.) Please list all.
2. Did community liaisons/brokers help you to gain entry into the communities you serve? What did the community liaisons/brokers do to introduce you or your agency to the community? Identify some specific activities that the community liaison/brokers engaged in, in collaboration with or on behalf of your agency. (I.E. do they help with the wording for letters and flyers, translate documents, disseminate information to the community, or help in identifying meeting places)
3. Who are your community liaisons/brokers? What roles do they play in their agencies? What roles do they play within the community? Please list all. (I.E. Head Start parent, minister, community program worker)
4. How did you establish the relationship? (I.E. met at church, health fair or other community event and talked about what you do)
5. What have you done or are you doing to maintain the relationship? (I.E. you pay them; they are able to receive training and information at no cost)
6. How has working in partnership with the community liaison/broker benefited your agency? How has the partnership benefited the liaison/broker? How has the partnership benefited the community? (I.E. you were able to outreach to young mothers and provide them information and training on Early Intervention)
7. Did or do any of these collaborative partnerships share resources? (I.E. space, funding, personnel) If yes, how was the sharing of resources accomplished? If no, what were the challenges to resource sharing?
Family-Centered Care assures the health and well-being of children and their families through a respectful family-professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family-Centered Care is the standard of practice which results in high quality services.
PRINCIPLES OF FAMILY-CENTERED CARE FOR CHILDREN
The foundation of family-centered care is the partnership between families and professionals. Key to this partnership are the following principles:• Families and professionals work together in the best interest of the child and family. As the child grows, s/he assures a partnership role.• Everyone respects the skills and expertise brought to the relationship.• Trust is acknowledged as fundamental.• Communication and information sharing are open and objective.• Participants make decisions together.
• There is a willingness to negotiate.
Based on this partnership, family-centered care:1. Acknowledges the family as the constant in a child’s life.2. Builds on family strengths.3. Supports the child in learning about and participating in his/hers care and decision-making.4. Honors cultural diversity and family traditions.5. Recognizes the importance of community-based services.6. Promotes an individual and developmental approach.7. Encourages family-to-family and peer support.8. Supports youth as they transition to adulthood.9. Develops policies, practices, and systems that are family-friendly and family-centered in all settings.10. Celebrates successes.There is no one definition of cultural competence. Definitions of cultural competence have evolved from diverse perspectives, interests and needs and are incorporated in state legislation, Federal statutes and programs, private sector organizations and academic settings. The seminal work of Cross et al in 1989 offered a definition of cultural competence that established a solid foundation for the field.
The definition has been widely adapted and modified during the past 15 years. However, the core concepts and principles espoused in this framework remain constant as they are viewed as universally applicable across multiple systems. A number of definitions and descriptions of cultural competence were reviewed to compile the selected list. The following definitions are highlighted because they represent or are based on original and exemplary work and because of their potential impact to the field of health and human services.
Cross et al, 1989
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. The word culture is used because it implies the integrated pattern of human behavior that includes thoughts, communications, actions, customs, beliefs, values and institutions of a racial, ethnic, religious or social group. The word competence is used because it implies having the capacity to function effectively. Five essential elements contribute to a system's institution's, or agency's ability to become more culturally competent which include:
1) valuing diversity;
2) having the capacity for cultural self-assessment;
3) being conscious of the dynamics inherent when cultures interact;
4) having institutionalized culture knowledge; and
5) having developed adaptations to service delivery reflecting an understanding of cultural diversity.
These five elements should be manifested at every level of an organization includingpolicy making, administrative, and practice. Further these elements should be reflectedin the attitudes, structures, policies and services of the organization.
National Center for Cultural Competence, 1998, modified from Cross et al.
• Cultural competence requires that organizations have a defined set of values and principles, and demonstrate behaviors, attitudes, policies, and structures that enable them to work effectively cross-culturally.• Have the capacity to (1) value diversity, (2) conduct self-assessment, (3) manage the dynamics of difference, (4) acquire and institutionalize cultural knowledge, and (5) adapt to diversity and the cultural contexts of communities they serve.• Incorporate the above in all aspects of policy-making, administration, practice and service delivery, systematically involve consumers, families and communities. Cultural competence is a developmental process that evolves over an extended period. Both individuals and organizations are at various levels of awareness, knowledge and skills along the cultural competence continuum.
Betancourt et al., 2002
Cultural competence in health care describes the ability of systems to provide care topatients with diverse values, beliefs and behaviors, including tailoring delivery to meet patients’ social, cultural, and linguistic needs.
Lavizzo-Mourey & Mackenzie, 1996
Cultural competence is the demonstrated awareness and integration of three population-specific issues: health-related beliefs and cultural values, disease incidence and prevalence, and treatment efficacy. But perhaps the most significant aspect of this concept is the inclusion and integration of the three areas that are usually considered separately when they are considered at all.Roberts et al, 1990
Cultural competence refers to a program's ability to honor and respect those beliefs, interpersonal styles, attitudes and behaviors both of families who are clients and the multicultural staff who are providing services. In doing so, it incorporates these values at the levels of policy, administration and practice.
Denboba, 1993
Cultural competence is defined as a set of values, behaviors, attitudes, and practices within a system, organization, program or among individuals and which enables them to work effectively cross culturally. Further, it refers to the ability to honor and respect the beliefs, language, interpersonal styles and behaviors of individuals and families receiving services, as well as staff who are providing such services. Striving to achieve cultural competence is a dynamic, ongoing, developmental process that requires a long-term commitment.
At a systems, organizational or program level, cultural competence requires a comprehensive and coordinated plan that includes interventions on levels of: (1) policy making; (2) infra-structure building; (3) program administration and evaluation; (4) the delivery of services and enabling supports; and (5) the individual.
This often requires the re-examination of mission statements; policies and procedures; administrative practices; staff recruitment, hiring and retention; professional development and in-service training; translation and interpretation processes; family/professional/community partnerships; health care practices and interventions including addressing racial/ethnic health disparities and access issues; health education and promotion practices/materials; and community and state needs assessment protocols.
At the individual level, this means an examination of one’s own attitude and values, and the acquisition of the values, knowledge, skills and attributes that will allow an individual to work appropriately in cross cultural situations. Cultural competence mandates that organizations, programs and individuals must have the ability to:1. value diversity and similarities among all peoples;2. understand and effectively respond to cultural differences;3. engage in cultural self-assessment at the individual and organizational levels;4. make adaptations to the delivery of services and enabling supports; and5. institutionalize cultural knowledge.
Tervalon & Murray-Garcia, 1998
Cultural humility is best defined not by a discrete endpoint but as a commitment and active engagement in a lifelong process that individuals enter into on an ongoing basis with patients, communities, colleagues, and with themselves…a process that requireshumility in how physicians bring into check the power imbalances that exist in the dynamics of physician-patient communication by using patient-focused interviewing and care.
American Association for Health Education
Cultural competence is the ability of an individual to understand and respect values, attitudes, beliefs, and mores that differ across cultures, and to consider and respond appropriately to these differences in planning, implementing, and evaluating healtheducation and promotion programs and interventions.
National Alliance for Hispanic Health, 2001
Cultural proficiency is when providers and systems seek to do more than provide unbiased care as they value the positive role culture can play in a person’s health and well-being.
National Medical Association
Cultural Competency (Health) is the application of cultural knowledge, behaviors, and interpersonal and clinical skills that enhances a provider’s effectiveness in managing patient care.
U.S. Department of Health and Human Services
Administration on Developmental Disabilities, 2000
The term cultural competence means services, supports or other assistance that are conducted or provided in a manner that is responsive to the beliefs, interpersonal styles, attitudes, language and behaviors of individuals who are receiving services, and in a manner that has the greatest likelihood of ensuring their maximum participation in the program.
Health Resources and Services Administration, Bureau of Health Professions
Cultural competence is defined simply as the level of knowledge-based skills required to provide effective clinical care to patients from a particular ethnic or racial group.
Health Resources and Services Administration, Bureau of Primary Health Care
Cultural and linguistic competence is a set of congruent behaviors, attitudes and policies that come together in a system, agency or among professionals that enables effective work in cross-cultural situations. "Culture" refers to integrated patterns of human behaviorthat include the language, thoughts, communications, actions, customs, beliefs, values, and institutions of racial, ethnic, religious or social groups. "Competence" implies having the capacity to function effectively as an individual and an organization within the context of the cultural beliefs, behaviors and needs presented by consumers and their communities.
U.S. Department of Health and Human Services
Health Resources and Services Administration, Maternal and Child Health Bureau, Title V Block Grant Program Guidance, 2003 Culturally competent – the ability to provide services to clients that honor different cultural beliefs, interpersonal styles, attitudes and behaviors and the use of multi-cultural staff in the policy development, administration and provision of those services.
Office of Minority Health, National Standards for Culturally and Linguistically Appropriate Services in Health Care (CLAS Standards), 2001
Cultural competence - Having the capacity to function effectively as an individual and an organization within the context of the cultural beliefs, behaviors and needs presented by consumers and their communities.
Substance Abuse and Mental Health Services Administration, Center for Mental Services
Cultural Competence includes: Attaining the knowledge, skills, and attitudes to enable administrators and practitioners within system of care to provide effective care for diverse populations, i.e., to work within the person’s values and reality conditions. Recovery andrehabilitation are more likely to occur where managed care systems, services, and providers have and utilize knowledge and skills that are culturally competent and compatible with the backgrounds of consumers from the four underserved/ underrepresented racial/ethnic groups, their families, and communities. Cultural competence acknowledges and incorporates variance in normative acceptable behaviors, beliefs and values in determining an individual’s mental wellness/illness, and incorporating those variables into assessment and treatment.
American Association for Health Education, www.aahperd.org/aahe Betancourt, J., Green, A. & Carrillo, E. (2002). Cultural competence inhealth care: Emerging frameworks and practical approaches. The Commonwealth Fund. Cross, T., Bazron, B., Dennis, K., & Isaacs, M., (1989). Towards A Culturally Competent System of Care Volume I. Washington, DC: Georgetown University Child Development Center, CASSP Technical Assistance Center. Denboba, D., U.S. Department of Health and Human Services, Health Services and Resources Administration (1993). MCHB/DSCSHCN Guidance for Competitive Applications, Maternal and Child Health Improvement Projects for Children with Special Health Care Needs.Lavizzo-Mourey, R. & Mackenzie, E. (1996). Cultural competence: Essential measurement of quality for managed care organizations. Annals of Internal Medicine, 124 919-926.National Alliance for Hispanic Health (2001). A Primer for cultural proficiency: To wards quality health care services for Hispanics. Washington, D.C. National Medical Association, National Medical Association Cultural CompetencePrimer, retrieved from http://www.askme3.org/PFCHC/download.asp on April 2, 2004. Roberts, R., et al. (1990). Developing Culturally Competent Programs for Families of Children with Special Needs [monograph and orkbook]; Georgetown University Child Development Center.Taylor, T., et al. (1998). Training and Technical Assistance Manual for Culturally Competent Services and Systems: Implications for Children with Special Health Care Needs. National Center for Cultural Competence, Georgetown University Child Development Center.Tervalon, M. & Murray-Garcia, J. (1998). Cultural humility versus cultural competence: a Critical discussion in defining physician training outcomes in multicultural education. Journal of Health Care for the Poor and Underserved, 9 (2) 117-125. U.S. Department of Health and Human Services, Administration for Children and Families, Administration on Development Disabilities (2000). Amendments to P.L. 106-402 - The Developmental Disabilities Assistance and Bill of Rights Act of 2000. U.S. Department of Health and Human Services, Health Resources and Services Administration, Bureau of Health Professions, retrieved from
://www.bhpr.hrsa.gov/ diversity/cultcomp.htm on April 2, 2004.U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Division of State and Community Health (2003). Maternal and Child Health Services Title V Block Grant Program, retrieved fromftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf on April 13, 2004.U.S. Department of Health and Human Services, Office of Minority Health (2001). National Standards for Culturally and Linguistically Appropriate Services in Health Care: Final Report, retrieved from http://www.omhrc.gov/clas/ on April 15, 2004. U.S. Department of Health and Human Services, Substance Abuse and MentalHealth Services Administration, Center for Mental Services, retrieved from http://www.bhpr.hrsa.gov/diversity/cultcomp.htm on April 2, 2004. For more information, please contact
Trish Thomas or Karen AnzolaFamily Voices National Office2340 Alamo SE, Suite 102Albuquerque, New Mexico 87106Phone (505) 872-4774Toll Free (888) 835-5669Fax (505) 872-4780Email: kidshealth@familyvoices.orghttp://www.familyvoices.org 