a guide for advancing family-centered and culturally and

National Center for Cultural CompetenceGeorgetown University Center for Child and Human Development

A Guide for AdvancingFamily-Centered and

Culturally and LinguisticallyCompetent Care

A Guide for Advancing Family-Centered and Culturally and Linguistically Competent Care

©2007 National Center for Cultural Competence—Georgetown University Center for Child and Human Development 2

Health Resource and Services AdministrationMaternal and Child Health Bureau

Definition of Special Health Care Needs

Children with special health care needs includesall children, who have or are at increased risk for,chronic physical, developmental, behavioral andemotional conditions who also require health andrelated services of a type or amount beyond thatrequired by children generally.

IntroductionThe movements to advance family-centered care and cultural and linguistic competence have oftenevolved along parallel tracks. This fact is well documented in the early definitions of family-centeredcare in the literature (Bishop, Woll, & Arango, n.d.). Although these definitions reference “honoringcultures, cultural diversity, and family traditions,” little emphasis was placed on policies and structuresnecessary to translate this philosophy into family-centered practice. A pervading perception within themovement was that if an organization was family-centered, then by default it must be culturallycompetent. Moreover, much of this literature did not tend to draw upon and integrate the rich body ofknowledge related to cultural and linguistic competence. A recent literature review commissioned by theMaternal and Child Health Bureau (MCHB), Health Resources and Services Administration (HRSA),U.S. Department of Health and Humans Services (DHHS), draws this conclusion. Bishop, Woll, andArango (2003) conducted a broad review of the literature and other sources of information on family-centered care. This review encompassed the period of 1993-2003 and included 250 journal and otherarticles, books, chapters, videos, monographs, Web sites, training manuals, resource catalogs and guides,block grants, and display posters. The authors found that “little mention of cultural competence wasmade in family-centered care materials” (Arango & McPherson, 2005).

Family-centered care and cultural and linguistic competence are essential approaches to address themultiple strengths, needs, and preferences of this nation’s families who have children and youth withspecial health care needs. MCHB convened a meeting to explore ways in which family-centered careand cultural and linguistic competence could beintegrated in a more effective manner to supportand sustain a community-based system ofservices that are comprehensive, coordinated,and accessible and that provide the highestquality of care.

The meeting brought together a cadre of 18individuals representing a wide variety oforganizations vested in providing services andsupports that are family-centered and culturallyand linguistically competent.



DEFINITIONS

The following definitions are offered to provide a context for using this guide.

Definition of FamilyFamily is an enduring relationship, whether biological or non-biological, chosen or circumstantial,connecting a child/youth and parent/caregiver through culture, tradition, shared experiences, emotionalcommitment and mutual support.

Source: United Advocates for Children of California (2005). http://www.uacc4families.org/aboutus/mission.cfm

NCCC’s Definition of Cultural CompetenceCultural competence requires that organizations:

have a congruent, 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 ofdifference, (4) acquire and institutionalize cultural knowledge, and (5) adapt to the diversity andcultural contexts of communities they serve; and

incorporate the above into all aspects of policymaking, administration, practice, and service deliveryand systematically involve consumers, key stakeholders and communities.

Cultural competence is a developmental process that evolves over an extended period of time.Individuals, organizations, and systems are at various levels of awareness, knowledge and skills alongthe cultural competence continuum.

Modified from Cross, T., Bazron, B., Dennis, K., & Isaacs, M. (1989). Towards a culturally competent system of care. Vol. 1. Washington, DC:The National Technical Assistance Center for Children’s Mental Health, Georgetown University Child Development Center.

NCCC’s Definition of Linguistic CompetenceThe capacity of an organization and its personnel to communicate effectively, and convey information ina manner that is easily understood by diverse audiences including persons of limited Englishproficiency, those who have low literacy skills or are not literate, and individuals with disabilities.Linguistic competency requires organizational and provider capacity to respond effectively to the healthliteracy needs of populations served. The organization must have policy, structures, practices,procedures, and dedicated resources to support this capacity. This may include, but is not limited to, theuse of:

bilingual/bicultural or multilingual/multicultural staff; cross-cultural communication approaches;

cultural brokers;

foreign language interpretation services including distance technologies; sign language interpretation services;

multilingual telecommunication systems;

videoconferencing and telehealth technologies;

TTY and other assistive technology devices;



Definitions Continued

computer assisted real time translation (CART) or viable real time transcriptions (VRT);

print materials in easy to read, low literacy, picture and symbol formats;

materials in alternative formats (e.g., audiotape, Braille, enlarged print); varied approaches to share information with individuals who experience cognitive disabilities;

materials developed and tested for specific cultural, ethnic and linguistic groups;

translation services including those of:– legally binding documents (e.g., consent forms, confidentiality and patient rights statements, release

of information, applications)– signage– health education materials– public awareness materials and campaigns; and

ethnic media in languages other than English (e.g., television, radio, Internet, newspapers, periodicals).

(Goode, T.D., and Jones, W., 2000, Revised 2006)

GUIDING VALUES AND PRINCIPLES

Culturally and Linguistically Competent Guiding Values & PrinciplesThe following guiding values and principles are offered as a context for using the guide.

Organizational Systems and organizations must sanction, and in some cases mandate, the incorporation of cultural

knowledge into policy making, infrastructure and practice.* Cultural competence embraces the principles of equal access and non-discriminatory practices in

service delivery.*

Practice & Service Design Cultural competence is achieved by identifying and understanding the needs and help-seeking

behaviors of individuals and families.* Culturally competent organizations design and implement services that are tailored or matched to the

unique needs of individuals, children, families, organizations and communities served.* Practice is driven in service delivery systems by client preferred choices, not by culturally blind or

culturally free interventions.* Culturally competent organizations have a service delivery model that recognizes mental health as an

integral and inseparable aspect of primary health care.

Language Access Services and supports are delivered in the preferred language and/or mode of delivery of the

populations served. Written materials are translated, adapted, and/or provided in alternative formats based on the needs

and preferences of the populations served.



Guiding Values and Principles Continued

Interpretation and translation services comply with all relevant Federal, state, and local mandatesgoverning language access.

Consumers are engaged in evaluation of language access and other communication services to ensurequality and satisfaction.

Community EngagementCultural competence extends the concept of self-determination to the community.* Cultural competence involves working in conjunction with natural, informal support and helping

networks within culturally diverse communities (e.g., neighborhood, civic and advocacy associations;local/neighborhood merchants and alliance groups; ethnic, social, and religious organizations; andspiritual leaders and healers).*

Communities determine their own needs.** Community members are full partners in decision making.** Communities should economically benefit from collaboration.** Community engagement should result in the reciprocal transfer of knowledge and skills among all

collaborators and partners.**

Family & Consumers Family is defined differently by different cultures.*** Family as defined by each culture is usually the primary system of support and preferred

intervention.*** Family/consumers are the ultimate decision makers for services and supports for their children and/or

themselves.***

*Adapted from Cross, T. et al., 1989

** “Other Guiding Values and Principles for Community Engagement” and “Family & Consumers” are excerpts from the work ofTaylor, T., & Brown, M., 1997, Georgetown University Child Development Center (GUCDC), University Affiliated Program, and

*** “Promoting Cultural Diversity and Cultural Competency-Self Assessment Checklist for Personnel Providing Services andSupports to Children with Disabilities & Special Health Care Needs,” Goode, T., 2002, NCCC, GUCDC

Family-Centered CareThe following guiding values and principles are offered as a context for using the guide.

Definition of Family-Centered CareFamily-Centered Care assures the health and well-being of children and their families through arespectful family-professional partnership. It honors the strengths, cultures, traditions and expertise thateveryone brings to this relationship. Family-Centered Care is the standard of practice which results inhigh quality services.

Principles of Family-Centered Care for ChildrenThe foundation of family-centered care is the partnership between families and professionals. Key tothis partnership are the following principles: Families and professionals work together in the best interest of the child and the family. As the child

grows, s/he assumes a partnership role.



Guiding Values and Principles Continued

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 the child’s life.2. Builds on family strengths.

3. Supports the child in learning about and participating in his/her 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.

Sources: National Center for Family-Centered Care. (1989). Family-centered care for children with special health care needs.Bethesda, MD: Association for the Care of Children’s Health.

Bishop, K., Woll, J., & Arango, P. (1993). Family/professional collaboration for children with special health care needs and theirfamilies. Burlington, VT: University of Vermont, Department of Social Work.

Bishop, K., Woll, J., & Arango, P. (n.d.). Family-centered care projects 1 and 2 (2002-2004). Algodones, NM: AlgodonesAssociates.



RATIONALE FOR CARE THAT IS FAMILY-CENTERED ANDCULTURALLY AND LIGUISTICALLY COMPETENT

Demographic Profile of Children & Youth With Special Health Care NeedsAccording to the National Survey of Children with Special Health Care Needs (NS-CSHCN), conductedin 2001, the estimated prevalence of children (birth-17 years of age) with special health care needs was10.3 million, or 12.8%, nationally, with 20% of households having one or more children with specialhealth care needs. Analyses of these data indicate that prevalence varies significantly according to raceand ethnicity. Native American/Alaskan Natives have the highest prevalence at 16.6%, closely followedby 15.1% of families who self-identify as Multi-Racial (non-Hispanic). An estimated 14.2% of White,13% of Black, 9.6% of Native Hawaiian/Pacific Islander, 8.5% of Hispanic, and 4.4% of Asian childrenhave special health care needs. The prevalence of special health care needs for Hispanic children islower than that of all other ethnic groups, except Asian children. The parents of Hispanic children werealso more likely than others to respond to the survey in a language other than English. The NS-CSHCNprevalence results are consistent with other survey studies finding lower rates of chronic conditions ordisabilities in the Hispanic child population, but much remains to be learned about cultural and linguisticeffects of parental response to national surveys. Although this survey has limitations due tomethodology (relied solely on telephone interviews and excluded young adults from ages 18 to 21), itwas the first attempt to document the status of families of children with special health care needsnationally. Currently, MCHB estimates that 18 million children and youth (birth-21 years of age) in theUnited States have special health care needs (http://ftp.hrsa.gov/mchb/factsheets/dscshcn.pdf).

Disparities in CareAccording to the National Survey of Children with Special Health Care Needs, 2001, there aresignificant disparities related to race and ethnicity in how families perceived the services and supportsthey receive for their children (U.S. Department of Health and Human Services, 2004). When comparedto White children with special health care needs, Black andHispanic children with special health care needs are morelikely to have families who report disparate experiences in thehealth care delivery systems. Salient findings related tocultural and linguistic competence and the six core componentsof an integrated system of services for children and youth withspecial health care needs are as follows. Component 1: Families partner in decision making and will

be satisfied with the services they receive—almost half ofHispanic and Black children with special health care needshave families who reported that the services they receive arenot family-centered.

Component 2: Children and youth with special health careneeds receive coordinated, ongoing comprehensive carewithin a medical home—more than half of Hispanic (55.9%)and Black (51.6%) families of children with special healthcare needs have families who report that they do not receiveservices for their children in a medical home.

The Maternal and Child Health Bureauhas identified six components of acomprehensive system of services forchildren and youth with special healthcare needs (CSHCN) including:

1) Families of CSHCN will participate indecision making and will be satisfied withthe services they receive

2) All CSHCN will receive coordinatedcomprehensive care in a medical home

3) All CSHCN will be adequately insuredfor the services they need

4) All children will be screened early andcontinuously for special health care needs

5) Services for CSHCN will be organizedso families can use them easily

6) All youth with special needs will receivethe services needed to support thetransition to adulthood.

Maternal and Child Health Bureau



Rationale for Care Continued

Component 3: Families of children and youth with special health care needs have adequate privateand/or public insurance to pay for the services they need—more than half of Hispanic and Blackchildren with special health care needs have families who report that they do not have adequateinsurance for their children. NS-CSHCN findings include these categories: “multi-racial,” described asany non-Hispanic child/youth reporting two or more race categories, and “other,” described as anynon-Hispanic child/youth reporting only the Asian, Native American/Native Alaskan, or NativeHawaii/Pacific Islander category. Similar findings were reported for these demographic groups asthose cited above. Although the findings are still emerging, data broken down (disaggregated) by raceand ethnicity to date clearly reflect the need for care that is family-centered and culturally andlinguistically competent as essential approaches for achieving each of the six core outcomes.

A Word About the EvidenceCulturally and Linguistically Competent CareAn emerging body of evidence documents the role and efficacy of cultural and linguistic competence in(1) increasing access to, and the acceptability of, care; (2) improving quality and safety in the provisionof care; and (3) reducing disparities in the delivery of health and mental health care services andoutcomes for racially and ethnically diverse populations. It also documents the consequences to patientsand their families when these approaches to care are not provided. This research explores the linkbetween cultural and linguistic competence and improved health outcomes in clinical care andinterventions for specific diseases, health and mental health promotion and screening, and patient-provider concordance, to name a few. These studies largely focus on adults, although a number of themaddress children and youth with special health care needs. Several examples follow:

Lieu et al. (2004) found that cultural competence policies were an independent predictor of quality inthe care of children with asthma regarding underuse of preventive medications (associated with moresevere episodes and higher hospitalization rates) and parents’ rating of care.

La Roche et al. (2006) examined the efficacy of Multifamily Asthma Group Treatment (MFAGT) in24 African American and Hispanic families who have children with asthma. This randomizedcontrolled pilot study found that the MFAGT was effective in asthma management and reducedemergency department visits. The study also found that the return on investment was more than 50%compared to resources spent on the intervention.

Cohen et al. (2005) found that “Spanish-speaking patients and families who requested an interpreterseemed to have a significantly increased risk for serious medical events during pediatrichospitalization compared with patients whose families do not have a language barrier” (p. 577). Thiscase-control study was conducted at a large, academic, regional children’s hospital located in thePacific Northwest area of the country.



Rationale for Care Continued

Family-Centered CareThere is also a body of evidence that documents the role and efficacy of family-centered care by 1)having positive impact on the mental health of families of children and youth with special health careneeds, including their capacity to cope; 2) increasing family satisfaction with care; and 3) improving thequality of care.

Ireys et al. (2001) examined the maternal outcomes of a support intervention for families of childrenwith selected chronic illness. This randomized control clinical trial found that family support can havebeneficial effects on the mental health status of mothers of children with chronic illness, specificallyreducing anxiety and symptoms of maternal depression.

Singer et al. (1999) conducted a qualitative study that used consumer satisfaction interviews withparents of children with disabilities to evaluate Parent to Parent mentoring programs in five states.Eighty-nine percent of parents in the study rated Parent to Parent as helpful. Specifically, they foundthat Parent to Parent programs (1) are a valuable source of assistance for many families of childrenwith disabilities, (2) offer a unique form of assistance not typically met by formal service systems, (3)help parents make cognitive adaptations to disability in the family, and (4) help parents to becomemore effective at coping with the demands of parenting a child with a disability while maintaining adesirable family life.

Fina et al. (1997) described 14 years of experience in parent participation in the post-anesthesia careunit (PACU) of a major children’s hospital. They studied (1) quality improvement monitors of thelevel of comfort of patients admitted to the PACU—specifically involving parents in the care of theirchildren, and (2) parents’ satisfaction as active participants in the care of their children. They foundthat parental presence had a calming and anxiety-reducing effect on the patient and that parentalvisitation contributes to quality care and increases family satisfaction.



Purpose of the GuideOne product of the meeting was a template developed by participants that offered concrete examples ofstrategies and approaches to integrate family-centered care and cultural and linguistic competence.Participants grouped the template of strategies and approaches into 10 categories. For the purposes ofthis guide, the authors collapsed these categories into five primary areas of focus that include (1)Research and Dissemination; (2) Training, Education, and Professional Development; (3) InformationExchange and Social Marketing; (4) Innovative Practices; and (5) Accountability and Outcomes.Additionally, the authors developed a framework for advancing care that is family-centered andculturally and linguistically competent that describes a set of strategies and activities, and listsresponsible entities/individuals, potential partners, and resources.

The guide is designed to:

provide the strategies suggested by meeting participants and offer new ones to integrate and advancecare that is family-centered and culturally and linguistically competent; and

assist organizations and systems in meeting the MCHB performance measures for family-professionalpartnerships and cultural competence.

The guide is intended for use by a diverse array of stakeholders and constituencies in the integratedsystem of services for children and youth with special health care needs and their families. Thissupportive group includes, but is not limited to, state and local health and mental health programs,family organizations, hospitals, clinics, universities and research and training centers, professionalassociations, and HRSA/MCHB grantees.

The guide provides a template of strategies and activities, responsible entities and individuals, potentialpartners, and resources for five areas of focus that were identified by meeting participants as essential tofamily-centered and culturally and linguistically competent care. The template consists of:

Strategies and activities consist of suggested approaches to advance family-centered and culturallyand linguistically competent policies, structures, and practices within programs, organizations, andsystems.

Responsible entities and individuals are a list of those that should assume a major leadership role inpromoting care that is family-centered and culturally and linguistically competent and integrated into acomprehensive system of services.

Potential partners are an expansive list of organizations and programs that can be engaged incollaborative activities and partnerships.

Resources consist of suggested organizations and businesses, within both the public and private sector,that may contribute or invest in efforts to advance and sustain care that is family-centered andculturally and linguistically competent. Resources may include revenue, personnel, incentives, in-kindcontribution, facilities, and other goods and services.



Areas of FocusResearch and DisseminationThere is an emerging body of research that examines the efficacy of health and mental health outcomesassociated with family-centered care, cultural competence, and linguistic competence, respectively.However, little within this literature examines the correlation between these three approaches and theirimpact on health care equity, disparities, and quality. This area of focus provides strategies to integrateand advance this much-needed research agenda.

Training, Education, and Professional DevelopmentNationally, health and mental health care organizations and systems are struggling to respond effectivelyto the needs and preferences of individuals and families from culturally and linguistically diversegroups. Academic institutions and other health and mental health care training programs have anessential role in preparing personnel to have the values, knowledge, and skill sets to provide care that isfamily-centered and culturally and linguistically competent. Families and youth with special health careneeds should also be seen as partners integrally involved in these educational activities. This area offocus provides strategies to incorporate principles and practices of family-centered care and cultural andlinguistic competence into training, education, and professional development activities.

Information Exchange and Social MarketingThe concepts and practices of family-centered care and cultural and linguistic competence are not wellunderstood by most families. This lack of understanding also extends to many providers of health andmental health care and their respective practices and organizations. Concerted attention must be devotedto increasing awareness of the benefits of these practices, such as improved quality of care, better healthoutcomes, increased satisfaction with care, enhanced relations between the patient-provider, reduced riskof medical errors attributed to language/cultural barriers, and reduced racial, ethnic, and geographicdisparities. This area of focus suggests strategies for exchanging information and conducting socialmarketing initiatives that integrate these practices and increase awareness among families, youth, andproviders.

Innovative PracticesSome programs serving children and youth with special health care needs and their families are using anarray of innovative practices that integrate family-centered care and cultural and linguistic competence.However, many of these programs neither have the personnel nor the resources to (1) conduct researchefforts on the efficacy of their interventions and practices, (2) determine whether such interventions andpractices are replicable for different cultural groups and in different settings, or (3) publish anddisseminate their work. This area of focus provides concrete strategies for documenting innovativepractices, including isolating and defining the specific elements of family-centered care and cultural andlinguistic competent care that are effective. It also recommends broad distribution of such practices inmultiple formats and venues.

Accountability and OutcomesThere are Federal requirements, mandates, standards, and guidelines for both cultural competence andlinguistic competence (e.g., Title VI, Section 601, Civil Rights Act of 1964, Culturally and



Linguistically Appropriate Standards in Health Care (CLAS), Executive Order 13166, and MCHBStrategic Plan Goals and Performance Measures for States and Special Projects of Regional andNational Significance). Additionally, there are performance measure goals that specifically addressaspects of family-centered care in MCHB-funded programs and related systems of care. For thepurposes of this guide, accountability and outcomes in family-centered care and cultural and linguisticcompetence are limited to those as specified by these requirements. This area of focus providesstrategies to assess the extent to which values, policies, structures, and practices of family-centered careand cultural and linguistic competence are integrated within organizations and the six core componentsof a comprehensive system of care.

Suggested Steps for Using this Guide Establish a structure to guide the work

Convene a work group, committee, or task force with theresponsibility of exploring the integration of family-centeredcare and cultural and linguistic competence. This group canserve as the primary entity to plan, implement, and provideoversight in this process of exploration. The group shouldinclude representation from all levels of the organization,families, and other constituency groups.

Create a shared visionConvene a forum to explore and define the concepts of family-centered care and cultural and linguistic competence and theirvalue and relevance for the organization and the families andcommunities served. Forum participants should comprise keystakeholders including, but not limited to, staff, families, youth,community organizations in the service area, and otherinvested constituency groups.

Conduct capacity explorationThe work group should conduct a comprehensive review of thefive areas of focus of the guide to determine the feasibility andthe organization’s capacity to implement the strategies andactivities delineated in the guide. Ascertain the level of effort,resources, and partnerships needed for each strategy. Reachconsensus, and submit recommendations to policy makersand/or governing boards on priority areas of focus and specificstrategies and activities.

Develop and implement a plan of actionCreate a plan of action for identified areas of focus. Determinethe specific strategies/activities, partners, resources,timetables, and responsible parties, and establish benchmarksto monitor and assess progress.

Evaluate outcomesDevelop measures to assess the extent to which the processesdelineated in the plan achieved the desired outcomes.

Establish aStructure

Create aShared Vision

EvaluateOutcomes

Develop & Implementa Plan of Action

Conduct CapacityExploration


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, prin

cipl

es,

polic

ies,

and

pra

ctic

es o

f car

e th

at a

refa

mily

-cen

tere

d an

d cu

ltura

lly a

ndlin

guis

tical

ly c

ompe

tent

.

Pro

vide

orie

ntat

ion

trai

ning

, men

torin

g,an

d ot

her

supp

orts

for

all v

olun

teer

s to

ensu

re a

n un

ders

tand

ing

and

acce

ptan

ce o

f val

ues,

prin

cipl

es, a

ndpr

actic

es g

over

ning

cul

tura

l and

lingu

istic

com

pete

nce

and

fam

ily-

cent

ered

car

e.

U

nive

rsiti

es a

nd c

olle

ges

R

esea

rch

and

trai

ning

cent

ers

M

CH

B a

nd o

ther

Fed

eral

agen

cies

F

amily

and

you

thor

gani

zatio

ns

M

CH

B g

rant

ees

incl

udin

gna

tiona

l cen

ters

P

ublic

and

priv

ate

hosp

itals

F

amily

org

aniz

atio

ns

Y

outh

org

aniz

atio

ns

C

omm

unity

-bas

edor

gani

zatio

ns a

ndpr

ogra

ms

A

mer

ican

Aca

dem

y of

Ped

iatr

ics

Q

ualit

y im

prov

emen

tor

gani

zatio

ns/in

itiat

ives

conc

erne

d w

ith h

ealth

,m

enta

l hea

lth, a

nded

ucat

ion

E

thni

c-sp

ecifi

cor

gani

zatio

ns

S

tate

Titl

e V

pro

gram

s

P

rofe

ssio

nal h

ealth

,m

enta

l hea

lth, a

ndm

edic

al a

ssoc

iatio

ns

P

ublic

sch

ool s

yste

ms

C

ivic

and

soc

ial

asso

ciat

ions

N

atio

nal s

ocia

lor

gani

zatio

ns (

e.g.

,so

rorit

ies

and

frat

erni

ties)

H

ealth

equ

ity a

nd s

ocia

lju

stic

e or

gani

zatio

ns

F

eder

al, s

tate

, and

loca

lgo

vern

men

ts

F

ound

atio

ns

E

thni

c m

edia

P

rofe

ssio

nal h

ealth

,m

enta

l hea

lth, a

ndm

edic

al o

rgan

izat

ions

H

ealth

pla

ns

Q

ualit

y im

prov

emen

tor

gani

zatio

ns/in

itiat

ives


AR

EA

OF

FO

CU

SIn

form

atio

n E

xch

ang

e an

d S

oci

al M

arke

tin

g

Str

ateg

ies

and

Act

ivit

ies

Res

po

nsi

ble

En

titi

es a

nd

Ind

ivid

ual

sP

ote

nti

al P

artn

ers

Res

ou

rces

Pro

vide

info

rmat

ion

abou

t fam

ily-c

ente

red

care

and

cul

tura

l and

ling

uist

ic c

ompe

tenc

eto

fam

ilies

and

you

th th

at w

ill e

nabl

e th

em to

advo

cate

on

thei

r ow

n be

half

for

serv

ices

that

they

nee

d an

d pr

efer

(e.

g., i

nnov

ativ

ean

d pr

omis

ing

prac

tices

, evi

denc

ed-b

ased

prac

tices

, Titl

e V

I lan

guag

e ac

cess

prov

isio

ns, a

nd C

LAS

Sta

ndar

ds).

Con

vene

foru

ms

that

link

fam

ily-c

ente

red

care

and

cul

tura

l and

ling

uist

ic c

ompe

tenc

eto

suc

h ou

tcom

es a

s im

prov

ed q

ualit

y of

care

and

red

uctio

ns in

hea

lth d

ispa

ritie

s to

faci

litat

e th

e ex

chan

ge o

f inf

orm

atio

n am

ong

and

betw

een

fam

ilies

.

Dev

elop

mat

eria

ls a

nd r

esou

rces

for

soci

alm

arke

ting

that

info

rm p

rovi

ders

and

fam

ilies

abou

t the

ben

efits

of c

are

that

are

bot

hfa

mily

-cen

tere

d an

d cu

ltura

lly a

ndlin

guis

tical

ly c

ompe

tent

(e.

g., B

right

Fut

ures

,M

edic

al H

ome

Inde

x, to

olki

ts, c

onsu

mer

chec

klis

ts/b

roch

ures

, mul

timed

ia r

esou

rces

,an

d P

ublic

Ser

vice

Ann

ounc

emen

ts).

Tai

lor

soci

al m

arke

ting

cam

paig

ns to

the

cultu

ral a

nd li

ngui

stic

con

text

of f

amili

es,

cons

umer

s, a

nd c

omm

uniti

es. T

hese

cam

paig

ns s

houl

d:–

Eng

age

com

mun

ity m

embe

rs in

iden

tifyi

ngth

e ne

ed, p

urpo

se, a

nd d

esig

n of

the

appr

oach

;–

Pro

vide

info

rmat

ion

in m

ultip

le fo

rmat

s(e

.g.,

vide

os, C

Ds,

and

adv

ertis

emen

ts);

–U

se c

redi

ble

voic

es to

del

iver

hea

lth a

ndm

enta

l hea

lth m

essa

ges

(e.g

., cu

ltura

lbr

oker

s, p

rom

otor

as, a

nd c

omm

unity

lead

ers)

; and

–D

eliv

er in

form

atio

n in

a v

arie

ty o

f set

tings

(e.g

., he

alth

fairs

, ped

iatr

ic p

ract

ices

,sc

hool

-bas

ed c

linic

s, lo

cal m

erch

ants

, and

faith

or

spiri

tual

gat

herin

gs).

M

CH

B a

nd o

ther

Fed

eral

agen

cies

F

amily

and

you

thor

gani

zatio

ns

S

tate

Titl

e V

pro

gram

s

M

CH

B g

rant

ees

incl

udin

gna

tiona

l cen

ters

U

nive

rsiti

es a

nd c

olle

ges

P

rofe

ssio

nal h

ealth

,m

enta

l hea

lth, a

ndm

edic

al a

ssoc

iatio

ns

H

ealth

pla

ns

E

thni

c-ba

sed

advo

cacy

orga

niza

tions

F

aith

-bas

ed o

rgan

izat

ions

F

amily

org

aniz

atio

ns

C

omm

unity

-bas

edor

gani

zatio

ns a

ndpr

ogra

ms

Q

ualit

y im

prov

emen

tor

gani

zatio

ns/in

itiat

ives

Y

outh

org

aniz

atio

ns

A

mer

ican

Aca

dem

y of

Ped

iatr

ics

S

tate

Titl

e V

pro

gram

s

P

rofe

ssio

nal h

ealth

,m

enta

l hea

lth, a

ndm

edic

al a

ssoc

iatio

ns

C

ivic

and

soc

ial

asso

ciat

ions

In

form

al s

uppo

rt a

ndhe

lpin

g ne

twor

ks

N

atio

nal s

ocia

lor

gani

zatio

ns (

e.g.

,so

rorit

ies

and

frat

erni

ties)

H

ealth

equ

ity a

nd s

ocia

lju

stic

e or

gani

zatio

ns

P

ublic

sch

ool s

yste

ms

F

ound

atio

ns

E

thni

c m

edia

P

rofe

ssio

nal h

ealth

,m

enta

l hea

lth, a

ndm

edic

al o

rgan

izat

ions

Q

ualit

y im

prov

emen

tor

gani

zatio

ns/in

itiat

ives

F

aith

-bas

ed o

rgan

izat

ions

M

erch

ant a

nd b

usin

ess

asso

ciat

ions

F

eder

al, s

tate

, and

loca

lgo

vern

men

ts

C

able

pub

lic a

cces

ste

levi

sion

sta

tions


AR

EA

OF

FO

CU

SIn

no

vati

ve P

ract

ices

Str

ateg

ies

and

Act

ivit

ies

Res

po

nsi

ble

En

titi

es a

nd

Ind

ivid

ual

sP

ote

nti

al P

artn

ers

Res

ou

rces

Iden

tify:

(a)

info

rmat

ion

on s

yste

ms

deve

lopm

ent

and

inte

grat

ion

initi

ativ

es a

nd p

rogr

ams

that

hav

e po

licie

s th

at p

rom

ote,

impl

emen

t, an

d su

stai

n ca

re th

at is

fam

ily-c

ente

red

and

cultu

rally

and

lingu

istic

ally

com

pete

nt a

nd to

trac

kth

eir

impa

ct o

n qu

ality

of c

are.

(b)

spec

ific

elem

ents

rel

ated

to fa

mily

-ce

nter

ed c

are

and

cultu

ral a

nd li

ngui

stic

com

pete

nce

that

are

effe

ctiv

e in

addr

essi

ng d

ispa

ritie

s in

hea

lth a

ndm

enta

l hea

lth c

are

base

d on

soc

ial,

econ

omic

, cul

tura

l, lin

guis

tic, a

ndge

ogra

phic

bar

riers

.

(c)

orga

niza

tiona

l pol

icie

s th

at s

uppo

rtth

e em

ploy

men

t of f

amili

es a

nd y

outh

or

com

pens

ate

them

for

thei

r pa

rtic

ipat

ion

in p

rogr

am a

ctiv

ities

.

(d)

stra

tegi

es th

at a

dher

e to

the

valu

esan

d pr

actic

es o

f car

e th

at a

re fa

mily

-ce

nter

ed a

nd c

ultu

rally

and

ling

uist

ical

lyco

mpe

tent

, as

an in

terv

entio

n st

rate

gyfo

r sp

ecifi

c di

seas

es a

nd c

ondi

tions

(e.g

., di

abet

es, a

sthm

a, s

ickl

e ce

lldi

seas

e, a

nd p

hysi

cal,

emot

iona

l, an

dot

her

disa

bilit

ies)

and

that

use

com

mun

ity-b

ased

coa

litio

ns.

Th

e ab

ove

str

ateg

ies

and

act

ivit

ies

sho

uld

be

bro

adly

dis

sem

inat

ed in

mu

ltip

le f

orm

ats

and

ven

ues

.

R

esea

rch

inst

itute

s

H

RS

A/M

CH

B g

rant

ees

C

ente

rs o

f Exc

elle

nce

F

amily

org

aniz

atio

ns

U

nive

rsiti

es a

nd c

olle

ges

M

CH

B a

nd o

ther

Fed

eral

agen

cies

C

omm

unity

-bas

edor

gani

zatio

ns a

ndpr

ogra

ms

C

omm

unity

sys

tem

sde

velo

pmen

t and

inte

grat

ion

colla

bora

tive/

gove

rnan

ce b

odie

s

S

tate

Titl

e V

pro

gram

s

F

amily

org

aniz

atio

ns

Y

outh

org

aniz

atio

ns

P

edia

tric

pra

ctic

es

P

ublic

and

priv

ate

hosp

itals

P

rofe

ssio

nal h

ealth

,m

enta

l hea

lth, a

ndm

edic

al a

ssoc

iatio

ns

P

ublic

sch

ool s

yste

ms

C

omm

unity

hea

lth c

ente

rs

Q

ualit

y im

prov

emen

tor

gani

zatio

ns/in

itiat

ives

F

ound

atio

ns

C

omm

unity

-bas

ed a

ndci

vic

orga

niza

tions

Q

ualit

y im

prov

emen

tor

gani

zatio

ns/in

itiat

ives

F

eder

al, s

tate

, and

loca

lgo

vern

men

ts

S

tate

Titl

e V

pro

gram

s


AR

EA

OF

FO

CU

SA

cco

un

tab

ility

an

d O

utc

om

es

Str

ateg

ies

and

Act

ivit

ies

Res

po

nsi

ble

En

titi

es a

nd

Ind

ivid

ual

sP

ote

nti

al P

artn

ers

Res

ou

rces

Con

duct

a s

elf-

asse

ssm

ent t

o de

term

ine

the

exte

nt to

whi

ch th

e or

gani

zatio

n or

prog

ram

com

plie

s w

ith T

itle

VI o

f the

Civ

il R

ight

s A

ct o

f 196

4 (t

hat r

equi

res

prog

ram

s an

d ag

enci

es r

ecei

ving

Fed

eral

fina

ncia

l ass

ista

nce

to ta

kere

ason

able

ste

ps to

ens

ure

that

indi

vidu

als

with

lim

ited

Eng

lish

prof

icie

ncy

are

not d

iscr

imin

ated

aga

inst

beca

use

of n

atio

nal o

rigin

) an

d ot

her

man

date

s.

Rev

iew

org

aniz

atio

nal p

olic

ies,

stru

ctur

es, p

ract

ices

, and

ded

icat

edre

sour

ces

to im

plem

ent t

he C

LAS

Sta

ndar

ds e

ffect

ivel

y.

Est

ablis

h or

gani

zatio

nal p

roce

dure

s fo

rtr

acki

ng, m

onito

ring,

and

mea

surin

g th

eex

tent

to w

hich

fam

ily-c

ente

red

care

and

cultu

ral a

nd li

ngui

stic

com

pete

nce

are

inte

grat

ed in

to and

impa

ct th

e si

xco

mpo

nent

s of

a c

ompr

ehen

sive

sys

tem

of c

are:

1)M

edic

al h

ome

2)A

dequ

ate

insu

ranc

e3)

Ear

ly a

nd c

ontin

uous

scr

eeni

ng4)

Org

aniz

atio

n of

ser

vice

s5)

Par

tner

in d

ecis

ion

mak

ing

and

satis

fact

ion

with

ser

vice

s6)

Tra

nsiti

on to

adu

lt he

alth

car

e, w

ork,

and

inde

pend

ence

Dev

elop

pol

icy

and

prac

tice

stan

dard

sth

at in

tegr

ate

fam

ily-c

ente

red

care

,cu

ltura

l and

ling

uist

ic c

ompe

tenc

e, a

ndqu

ality

indi

cato

rs.

Li

cens

ing

and

accr

edita

tion

bodi

es fo

rhe

alth

and

men

tal h

ealth

care

and

soc

ial s

ervi

cepr

ofes

sion

als

and

orga

niza

tions

M

CH

B/D

ivis

ion

ofS

ervi

ces

for

Chi

ldre

n w

ithS

peci

al H

ealth

Nee

ds(D

SC

SH

N)

H

RS

A/M

CH

B g

rant

ees

S

tate

and

loca

l MC

Hpr

ogra

ms

P

ublic

and

priv

ate

hosp

itals

F

amily

org

aniz

atio

ns

H

ealth

, men

tal h

ealth

,an

d so

cial

ser

vice

prog

ram

s

R

egio

nal a

nd s

tate

Offi

ces

of M

inor

ity H

ealth

D

HH

S/O

ffice

for

Civ

ilR

ight

s

F

amily

org

aniz

atio

ns

Y

outh

org

aniz

atio

ns

C

omm

unity

-bas

edor

gani

zatio

ns a

ndpr

ogra

ms

A

mer

ican

Aca

dem

y of

Ped

iatr

ics

Q

ualit

y im

prov

emen

tor

gani

zatio

ns a

ndin

itiat

ives

E

thni

c-ba

sed

advo

cacy

orga

niza

tions

S

tate

Titl

e V

pro

gram

s

P

rofe

ssio

nal h

ealth

,m

enta

l hea

lth, a

ndm

edic

al a

ssoc

iatio

ns

N

atio

nal s

ocia

lor

gani

zatio

ns (

e.g.

,so

rorit

ies

and

frat

erni

ties)

H

ealth

equ

ity a

nd s

ocia

lju

stic

e or

gani

zatio

ns

F

eder

al, s

tate

, and

loca

lgo

vern

men

ts

P

rofe

ssio

nal h

ealth

,m

enta

l hea

lth, a

ndm

edic

al o

rgan

izat

ions

Q

ualit

y im

prov

emen

tor

gani

zatio

ns a

ndin

itiat

ives


AR

EA

OF

FO

CU

S__

____

____

____

____

____

____

____

____

____

____

____

____

____

____

____

____

____

____

____

____

____

____

___

Str

ateg

ies

and

Act

ivit

ies

Res

po

nsi

ble

En

titi

es a

nd

Ind

ivid

ual

sP

ote

nti

al P

artn

ers

Res

ou

rces



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Bishop, K., Woll, J., & Arango, P. (n.d.). Family-centered care projects 1 and 2 (2002-2004).Algodones, NM: Algodones Associates.

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Ireys, H., Chernoff, R., DeVet, K., & Kim, Y. (2001). Maternal outcomes of a randomized controlledtrial of a community-based support program for families of children with chronic illness. Archives ofPediatrics & Adolescent Medicine, 155(7), 771-777.

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Lieu, T. A., Finkelstein, J. A., Lozano, P., Capra, A. M., Chi, F. W., Jensvold, N., et al. (2004, July).Cultural competence policies and other predictors of asthma care quality for Medicaid-insured children.Pediatrics, 114(1), 102-110.



National Center for Family-Centered Care. (1989). Family-centered care for children with special healthcare needs. Bethesda, MD: Association for the Care of Children’s Health.

Singer, G., Marquis, J., Powers, L., Blanchard, L., Divenere, N., Santelli, B., et al. (1999). A multi-siteevaluation of parent to parent programs for parents of children with disabilities. Journal of EarlyIntervention, 22(3), 217-229.

Taylor, T., & Brown, M. (1997). Other guiding values and principles for community engagement.Washington, DC: Georgetown University Child Development Center, University Affiliated Program.

United Advocates for Children of California. Definition of family. (2005). Retrieved May 20, 2006,from http://www.uacc4families.org/aboutus/mission.cfm

U.S. Department of Health and Human Services, Health Resources and Services Administration,Maternal and Child Health Bureau. (2004). The National Survey of Children with Special Health CareNeeds Chartbook 2001. Rockville, Maryland: Author.



AcknowledgmentsThis guide was developed by the National Center for Cultural Competence (NCCC) and is derived fromthe comments, concerns, and discussions generated from participants of a Family-Centered Care andCultural Competence meeting convened by MCHB. The NCCC thanks the meeting participants for theirinspiring, knowledgeable, insightful, and caring input.

National Meeting Participants:FacilitatorsSuganya SockalingamSenior ConsultantNational Center for Cultural Competence

Phyllis Landry-RatcliffExecutive DirectorFamily Voices of Louisiana, Inc.

Meeting AttendeesPolly ArangoAlgodones Associates

Jennifer CernochExecutive DirectorFamily Voices Network of Family-to-FamilyHealth Information CentersFamily Voices, Inc.

Michelle Drayton MartinExecutive DirectorToday’s Child Communications, Inc.

Tawara GoodeDirectorNational Center for Cultural Competence

Andrew HsiProfessor of PediatricsUniversity of New Mexico Health Sciences Center

Wendy JonesDirector, CYSHCN ProjectNational Center for Cultural Competence

Kathleen Kirk BishopDean and Professor of Social WorkDirector, MSW ProgramWheelock College

Alfonso Lopez-VasquezALVA Equity and Diversity ConsultantsDirector, Community PartnershipsAssistant Professor, School of EducationPacific University

Loraine LucinskiFamily-Centered Care ConsultantMaternal and Child Health ProgramDivision of Public HealthWisconsin Department of Health and FamilyServices

Rachel TallmanAssistant Executive DirectorFamily Voices Network of Family-to-FamilyHealth Information CentersFamily Voices, Inc.

Joseph TelfairAssociate ProfessorSchools of Public Health/MedicineMaternal and Child Health, PediatricsUniversity of Alabama at Birmingham

Trish ThomasTraining Technical Assistance/Network Development CoordinatorFamily Voices Network of Family-to-FamilyHealth Information CentersFamily Voices, Inc.

Conni WellsExecutive DirectorFlorida Institute for Family Involvement

Grace WilliamsFamily AdvisorParent’s Place of Maryland



Acknowledgments: National Meeting Participants Continued

Maternal and Child Health BureauDiana DenbobaPublic Health AnalystDivision of Services for Children with SpecialHealth NeedsMaternal and Child Health BureauHealth Resources and Services Administration

Merle McPhersonDirectorDivision of Services for Children with SpecialHealth NeedsMaternal and Child Health BureauHealth Resources and Services Administration

Bonnie StricklandChiefIntegrated Services BranchMaternal and Child Health BureauHealth Resources and Services Administration

A Guide for Advancing Family-Centered and Culturally and Linguistically Competent Care was writtenby Tawara D. Goode and Wendy Jones. Additional contributions to the guide were provided by SuzanneBronheim, NCCC faculty and Hortense Duval, professional editor.



Copyright InformationThe materials and content contained on the NationalCenter for Cultural Competence’s Web site arecopyrighted and are protected by GeorgetownUniversity’s copyright policies.

Permission is granted to use the material fornon-commercial purposes if: the material is not to be altered and proper credit is given to the authors and to the

National Center for Cultural Competence.

Permission is required if the material is to be: modified in any way used in broad distribution.

To request permission and for more information,contact [email protected]

For Additional Information Contact:National Center for Cultural CompetenceGeorgetown University Center for Child andHuman Development3300 Whitehaven Street, NW, Suite 3300Washington, DC 20007-1485Voice: (202) 687.5387 or (800) 788.2066TTY: (202) 687,5503Fax: (202) 687.8899E-Mail: [email protected] Site: http://gucchd.georgetown.edu.ncc

About the National Center for Cultural CompetenceThe NCCC provides national leadership and contributes to the body of knowledge oncultural and linguistic competency within systems and organizations. Major emphasisis placed on translating evidence into policy and practice for programs and personnelconcerned with health and mental health care delivery, administration, education,and advocacy.

The NCCC uses four major approaches to fulfill its mission including (1) Web-basedtechnical assistance, (2) knowledge development and dissemination, (3) supporting a “community of learners,”and (4) collaboration and partnerships with diverse constituency groups. These approaches entail the provision oftraining, technical assistance, and consultation and are intended to facilitate networking, linkages, and informationexchange. The NCCC has particular expertise in developing instruments and conducting organizational self-assessment processes to advance cultural and linguistic competency.

The NCCC is a component of the Georgetown University Center for Child and Human Development (GUCCHD)and is housed within the Department of Pediatrics of the Georgetown University Medical Center. The NCCC isfunded and operates under the auspices of Cooperative Agreement #U40-MC-00145-12 and is supported in partby the Maternal and Child Health program (Title V, Social Security Act), Health Resources and ServicesAdministration, U.S. Department of Health and Human Services (DHHS).

Notice of NondiscriminationIn accordance with the requirements of Title VI of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, and Section 504of the Rehabilitation Act of 1973, and implementing regulations promulgated under each of these federal statutes, Georgetown University doesnot discriminate in its programs, activities, or employment practices on the basis of race, color, national origin, sex, age, or disability. TheUniversity’s compliance program under these statutes and regulations is supervised by Rosemary Kilkenny, Special Assistant to the Presidentfor Affirmative Action Programs. Her office is located in Room G-10, Darnall Hall, and her telephone number is (202) 687-4798.

SUGGESTED CITATIONGoode, T., & Jones, W. (2006). A guide for advancing family-centered and culturally and linguisticallycompetent care. Washington, DC: National Center for Cultural Competence, Georgetown University Centerfor Child and Human Development.

a guide for advancing family-centered and culturally and

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